What is your most frustrating symptoms besides pain? Whilst there is no cure, people do have partial and full recoveries from the illness - have you listened to any recovery stories? You can find them here: th-cam.com/play/PLYGv2houTixlgFeJ5WHMIMA-BGpDfE8vv.html
The most frustrating thing for me is the variety of symptoms I experience in one day-waking up, having a plan and not knowing how my day start or if I’ll get anything done, or even out of bed. 😢 Lately, nausea, vertigo, and fibro fog have presented a lot of challenges. Why am I nauseous…oh, it’s just my fibro. (Like you said to be cautious of) I enjoyed your video. Thank you!
This is tough since I have many that are on the list. The Chronic IBS affects my daily life, as well as the difficulty sleeping and difficulty concentrating . It was difficult having doctors dismiss me for years, passing me along to others as they couldn’t figure out what was wrong with me. It just contributed to any anxiety that already existed . The countless MRIs, spinal injections and physical therapy have been both exhausting and expensive, as in some cases they weren’t covered by insurance.
Insomnia. And fatigue. They strike badly unexpectedly. Last night, I had no tea, coffee or other stimulants during the day. I took 2 trepilene, 2 L theanine, a Gabapentim and a Phenergan, hoping to catch up some sleep. At 2 am, I took 2 Valium and 2 Allergex and eventually fell asleep about 3am. I was awake at 6, but too tired to get up. I then unfortunately had to have coffee to get through the day. The other day, because I could not be groggy the next day, I only took a melatonin and a trepilene. I barely slept, then was so fatigued the next day I couldn't function anyway. But if you look at me, I look very healthy for 60, my hubby is the same age and most people think he is much older than me. It is very frustrating, a phantom condition. I used to love swimming and the sea, now I have to force myself to bath or shower. My temperature control is ridiculous, I can have sweat streaming down a side of me facing the sun, and goosepimples on the side facing away. Everything about this condition annoys my husband, from not being able to tolerate the sun (i travel in the car with a reflective shield over me) to not having the energy for things when I'm feeling like I've slammed into a brick wall. He thinks I'm depressed when I can't get up or lie down during the day. The pain and inflammation I've got fairly well controlled, and have been able to mostly drop the Tramadol and Arcoxia with a mainly whole food plant based diet. I've developed a strange new symptom lately - occasionally, I will feel as though I've taken methamphetamine, or 10 double espressos, its as if my blood is racing and I talk and move fast, can get through my chores quickly, but can't sit calmly or focus, I'm wondering if its perhaps panic attacks? I keep on forgetting to see what my heart rate is doing. Tonight I'm trying 2 Brazapam and an Ativan, I had a decaf coffee today, wish me luck!
One question I have is about gait. I always had a very graceful gait (I'd done dance training when I was younger and was also a runner), but in recent years I have observed myself on home security footage and now my gait is more of a waddle/lumbering gait even though I am a normal weight and quite active. Does this indicate fibromyalgia? Do you know anything that could help improve my gait? Could I also have these gait problems from CFS (rather than fibro)? My most frustrating symptoms are malaise, bloating, brain fog, and poor aerobic conditioning. I am also frustrated because I live an extremely healthy lifestyle but am still less healthy than I would like to be. I have always put effort into eating a lot of fruits and vegetables, exercise, sauna, etc. ANYTHING for good health I have put the effort in. So it's frustrating to not feel anything close to 100%.
Me, too re sleep issues. Fibromyalgia/ME since 1991 (when a university professor working 16-20 hours/day AND thoroughly enjoying every minute of it before ME). Peripheral neuropathy also diagnosed in 2020.
The profound fatigue is no joke. I used to be a very active person and a night shift nurse. This latest flare has been so bad I’m exhausted and in pain from just holding my head up. Prayers for all of us.
I'm a night shift nurse as well, with FMS about 25 yrs. Been a nurse nearly 30 yrs now and it's getting harder and harder to function. Fibro ain't for sissies!! This is no joke, like u said.
I know how you feel! So hard and painful 😖 I was a very active Gymnast and made it almost to the top when I got so much pain in my legs that I could (sadly still) barley walk (2017). I was diagnosed with fibromyalgia 14 (2018). I just have gotten worse... but I believe that there is light in the end of the tunnel!! Next week I am going to the hospital to help my pain go less! God bless you all!! Love from Iceland 🇮🇸
Try vitamin B12 injections. They worked somewhat for me but after 2nd dose I reacted and can't have them anymore. There has been some longterm relief. B12 is now common usage for Fibromyalgia.
I was diagnosed with fibromyalgia from head to toe in 1988. I was 37 then .. I have learned to live with this and I am now 72. The secret is to do exercises keep mobile no matter how you feel. This can be very hard but remember you do not die of fibromyalgia you die with it. Keep smiling you have a life to live. Make it enjoyable. Carole
Thank you i really enjoy your energy and enthusiasm. Some people however have different complicated issues like arthritis in your spine and feet. Its horrific. But i do understand your message and it does give hope. ✌🙏💗
I totally agree. You figure out a way to live with it. Moving is the secret weapon we all can use. I have dealt with this for over twenty years and had to figure this out myself because sadly there is no magic pill for this
@danuta very easy how some people say get up get going. Maybe her symptoms isn't as bad as yours. I was the most energetic person u could think of. The very people who told me that...asked where I got all that energy. Are the people that can't understand. Would I fake my pain and acne...really. after being one of the strongest woman known. I could pic any one up in one arm. At the age of 48 it just changed. I got pre-menopause but I think it's mixed with fibromyolgia. I get so much pain it has been since I was 48....I am now 55. Gotten worse. Everyone calling me an addict trying every pain killer I can find. Every week I got a new symptom. Just wen I am getting over one thing. Something else happens. This kinda makes sense wat I have. My friend suffers terribly with shingles her bones have twisted. Her shoulders gone forward. She must weigh 42kg. The pain this woman goes through. She drinks Hrt. Because if she leaves it.. she can't even move.
Have been living w fibromyalgia for about 30 years. I have pain , fatigue, stiffness and tingling all over my back arms legs. I combat this by swimming and taking strength and balance training classes. You have to keep moving. Fibromyalgia is worst when you don’t move. Be brave. Fight it.
My family's response when I told them that I had been diagnosed with fibromyalgia was,. "stop feeling sorry for yourself, there's people out there who are really sick and they don't complain about how they feel every day.." When your family says this kind of thing, when you are letting them know that you're struggling to do some of the physical things that you used to do easily before, it really makes me wonder where I can turn to for emotional support, after all that's what family is supposed to give you isn't it.? 😢
my answer always is a smile and "fine thankyou"... no one really cares and doesn't want to hear. You have to smile and bear it. I have had it for 35 years from lymne disease. But divert the mind with music and beauty around you. Cold pool at the Y keeps me going. Helps pain and brain fog.
Hugs Hugs. This is my family as well. My husband thought it would be a good idea to get 3 more German Shepherds. Now I find myself apologizing to the dogs because I cannot care and play with them as they need😶. Can't even care for myself properly. Have to take a break and lay down after a shower.
They are supposed to, but most people are so self-absorbed that they can't find real compassion for anyone else. Most people dont have tv families, when it comes to their own family they are awful.
I"ve had this for over 30 yrs and it does get worse. I sleep very little, and it's a major job just to take a shower. You go through a lot of stages. It's very hard to lose the person you used to be. My pain is through the roof. Good video, Thank You!
You are me.. I've been diagnosed for 15 years.. the shower thing, on the nose.. my depression is so out of control because my fatigue is so awful, I'm not living, I'm barely existing ya know... it's awful.
Doctors are dummer than we are!My old doctor has retired but the new one doesn't seem to know what fibromyalgia is!He gives me medecine and shows me the door and I don't feel that he understands.So I make sure the prescriptions are for a twelve month period and I go see him once a year!
Me too...I feel alone...😑 I can see that my doctor doesn't know what to do... He just wants me to take the my tablets...as he thinks most of the pain is on my head....
I’m so sick of being tired. The guilt of not being able to function is weighing heavy on me. My back, hip and leg hurt so much from standing and walking-grocery store is terrible. I’m used to being physically fit but that’s off the table right now. The depression isn’t fun either. I pray for everyone touched by this disease 🙏🏻🌷🙏🏻
I understand ❤ the only thing that gets me through each day is Jesus. If it weren’t for Him, idk what I’d do. Life is very bitter, but He makes it sweet, too. Prayers 🙏 ❤
Fibromyalgia has completely taken my life away from me . I have lost my identity my marriage my friends my business even family . It’s a lonely existence and chronically debilitating. I’ve had it all my life and now SLE Lupus. It’s by the grace of god I’m still alive but boy is it a struggle . . It’s a lonely lonely life
The same . But meditation pray retreat helpe Me alot . Doing sipirtuell jeurny Hopono prayer . Stress relief musik . Join som healer Thierry Manny ön TH-cam. Dont gives upp mat be it is a messege to us to finns happenes in a differens way. I realy Chang event if take time . I Hoppe you pease and love
I’m sorry to hear that. I know how you feel. I think I’ve had fibromyalgia for years, and I know it has changed me, I just never put all the separate symptoms together and I’m a Nurse Practitioner! It’s been really hard because all the symptoms are so different on spectrums. I feel that the fatigue is the worst. Nobody understands in my family and friends and they think it’s all mental.
Yes I can completely understand. I'm not yet diagnosed, 30 years now, cervical spondylitis, spinal stenosis, and every Fibromyalgia indicator, skin sensitivity pain, all forms of. Bowel, bladder, co- ordination, loss of strength, extreme exhaustion, poor and disturbed sleep the list is endless. However, try to push for help, and have faith. X
My chronic fatigue is also awful for years now. Can”t make plans because I don’t know how will feel from day to day. My house has never been so unattended.
Jutta Hollar I am so with you, dear! My house!! My bedroom ....is just unbelievable!! I cannot put clothes away. .... everything is everywhere and I barely have a path to get to my bed!! I know that sounds just terrible! It IS TERRIBLE! Makes you not really even care to get up in the morning I can tell you that much. I sleep a lot!
Nan Branham Me too!! I used to put everything away but for the past 2 years just throw my clothes on my ottoman. Dig thru it for clothes that have now fallen to the floor where they're staying. Don't even care anymore.
I agree with you. When I tell people that I can't make plan for tomorrow I don't think they understand. It's stressful when you make plan and on the day you have to call to cancel because you can't make it. You become isolated because you are not able to social. You go to bed so exhausted and feeling sleepy but when you get in the bed you stay a wake until 5am with headache and when fall asleep you it's hard to wake up or have light sleeper where little noise wakes you up and you don't go back to sleep
I am 76, and I have struggled with fibromyalgia since I was 50. At first it was manageable to a certain extent. Twenty years ago I lost my brother to cancer. The shock of his loss just did it to my body. I understand all that you have said. My day begins at noon and ends by five or six. It’s not that I was sleeping late. It’s that I was trying to get up! Well, you guys know the drill. My internist has been very supportive. I can’t say the same for my friends. The thing is, if I had been in a wheelchair all of these years, I would have weekly visitors who would sing my praises for being so strong in the face of adversity!!
I’m 71 and I’ve had fibromyalgia for six years. The last three years every week I probably stay in bed at least 1 to 3 days. I was told by one doctor that it could be the trauma that I experienced in my childhood. And that did make sense, but I don’t know what to do to not have these symptoms. I eat completely organic, I’m very careful about anything that goes to my body, but I don’t know what to do about it and I don’t know where to go and I just now ran into this website which I think I’ll do a lot more reading.
When I was still working. My late husband would have to come to the car and help me get into the house and get into bed. But, the person I am married to now probably wouldn't know if I died.
we, fibro suffers, are really a 'tuff' group of spirits, cause we do function and we do go on in spite of the suffereing that we can't describe and others do not understand, and we do look well....and we do spend effort helping others...today, i have just now heard about the vegas nerve in the crainial area and how fibromyalgia and whole body areas are affected by this...i have been needed to massage my scalp daily with essential oils, warming types: cinnamon, pepperment, etc. for a soothing effect....
@@TheLightbright01 so very sorry that you’re suffering alone. My fibromyalgia has lasted 50 years now and so many things make it unbearable. First, I don’t look sick; people don’t believe you can be in such pain without visable signs or a common disease such as cancer. Second; I now have sleep apnea which my doctors can use for excuse in refusing sleep and pain help. Third: my disease is definitely progressive with no HOPE of death any time soon. Therefore, I, like increasing thousands of chronic pain sufferers are agonizing over the prospect of suicide. I can’t bear the constant all body pain, the frightening nights of painful awakefullness and the “nervous wreck “ feelings without sleep. Each new day is a repeat of inhumane suffering with Kaiser here in California just saying “sorry, there’s nothing we can do.” It seems that only those with Covid receive attention and all else are kicked to the curb. If I take my life it will hurt my family and future generations. Breaks my heart. I don’t expect life to be without challenges and suffering but I have held on longer than I can bear. Death is on my mind daily. I a jealous when I hear of a death by accident or illness. Sad. No help. And I will not try therapy over a phone or with those things that cover our faces but do not stop something as small as a virus.
I do also believe fibromyalgia can be triggered by trauma of some sort I feel for any one with this condition it messes with your mental health big time
Fibromyalgia + C-PTSD= hell unless you can hide from the world. Thank you for this video I often feel very alone because people don’t understand what it’s like to try and function with these conditions .
I have had this for decades. Some days I pray to finally "come home". I am so freaking tired and the pain never goes away. The brain fog is so embarrassing sometimes.
@@ellenharvey5371 Yes!!! We really do suffer, i've had this over 25yrs. I used to be an "on the go" person, Fibromyalgia has made me feel lazy and worthless. I have wanted to go to "sleep" and "not wake up" too many times.
I want to die too. Every day that's all I think about. This year I missed my Mother-In-Laws 93 birthday, our family vacation (I stayed home alone), Thanksgiving, my husband's birthday dinner and Christmas. I can hardly fully shower anymore, it's too painful and exhausting. I only leave my home for doctor appointments. None of my friends ask me to do things anymore because I've canceled plans so many times or I'm late or they're afraid I'll have a seizure (I'm also Epileptic). Yep, I'm done with this shit. Absolutely finished w/ no shame. I'm 56.
I had to go to the emergency room a few years ago and I had a male nurse who attended me. He was almost hostile to me and he kept asking me questions about the pain medication I take which are prescribed for me by a pain management doctor for another condition and he was talking to me as if I was an addict because I take a oxycodone rather than something less strong and when I explained to him that I have fibromyalgia and it's caused me to develop sensitivities to many things drugs included and oxycodone is the only opioid I can tolerate. His response was that fibromyalgia is not a real disease but just something that doctors call it when they don't know what's wrong with you. As a retired RN myself I couldn't believe that a healthcare professional would be that uninformed in this day and age. I just looked at him and told him that he needed to go back to school if he didn't know any better than that. I also asked for another nurse since I had no confidence in his ability to take care of me since he was so obviously uneducated about something that is now well known to be a very real disease.
I’m 81 years old I suffer with the fibromyalgia all my life. Like you, I’ve been told all kinds of funny crazy stuff. I finally decided to Lear to cope with it in my own way and dint even mention it to doctors anymore especially the constant muscle pains, the extreme fatigue, and the rest of all the symptoms the doctor mentions. It all happens when weather changes, too much physical exercises and out of no where. Since it’s only debilitating it doesn’t kill you I learned to live with the condition and here I am 81.
On better days when I have some energy. I try to catch up on my chores pushing myself, then for the next couple of days, I am so tired for exerting myself, I can't get out of bed. It's horrible.
How did you get a diagnosis. I have symptoms but whenever I mention it to my dr the Pooh Pooh it. My legs won’t work like they used to sometimes I feel like they won’t lift up as I stumble. I get stabbing and burning pain in mostly my right leg but do suffer flare ups of sciatica. Sleep is crap. Wake up exhausted. Brain fog and loose track of conversations. I suffer high anxiety and depression and take meds for those. But they don’t feel enough.
@@pennylane5404 I was eventually referred to a rheumatologist. It took many appointments with several specialists to get a diagnosis. It was amazing that finally I was able to get the right meds to take the edge off. Like many people who have fms I struggle with many daily activities, just vacuuming 1 room can wipe me out. On days when I can't do housework I remind myself of a saying my mum used to tell me "the housework will still be there tomorrow, you may not". I know it sounds a bit defeatist but it's more about me giving myself permission to leave things alone and not feeling like I'm "giving in" to the fms. I've invested in a tens machine as an addition to my meds, feels like it's helping a bit but it may just be psychological, only time will tell. I'm not sure where you live but if your doctor won't refer you then I'd ask to meet with the practice manager or change doctors. I'm eternally grateful that I have an excellent doctor who can pick up on changes either in person or in a phone consult. I wish you all the luck with your medical journey and I hope that you can reach a diagnosis and get treatment soon x
@@pennylane5404 Get blood work ran for Epstein-Barr Virus, cytomegalovirus, echovirus, go on a yeast free diet (helps with fatigue, pain & fibro fog)✌❤🌏
You could've diagnosed yourself if you were your own Doctor like I've been promoting for 40 years and guess what 50 years ago Janet Travell left humanity precise 34 part recipe daily behaviors restorative therapies you must do yourself when obeyed guarantee to eradicate all the hundred and 22 signs and symptoms of PTSD cured with megadoses of TLCs works perfectly miraculously precisely helping mother nature do her best while you get good nights of sleep wake up refreshed pain free mental clarity battle ready.
So, so tired of being tired. This never ending circle of aches, pains, fog and sleeplessness. I’m 50 in two days, I’ve been tired since I was 15. The fun is always tainted.
I totally understand. My brain fog is really bad and frustrating, I have to speak really slowly to get the sentence out. The really bad part is that there are several times I have blank spots, meaning that I lose the word and image I am trying to say, and then boom it pops up. I have to say other words to get to the point. It makes me so angry and frustrated.
I'm 75 and have had severe fibromyalsia since I was in my teens. I was a super achiever until I was about 20 but it's been a steady spiral downward since then.I'm immensely strong willed to have survived continual physical he'll. The pain is unbelievable. The fatigue is crushing...and must I go on with the other symptoms? YET I have joy each moment my heart beats. WHY? I belong to Christ.
!im 65 and also have fybromyalgia plus other .just had a full hip replacement, only 2nd day in with recovery, but getting through the days is knowing we are very precious to out lord,xxamen,,sending blessings 🙏
I don't suffer from fibromyalgia but I wanted to know what it was. My heart feels for everyone of you. This made me feel so sad reading the comments. Am a believer. 💗
Prayers you mention, for 2 years I pray for my pains from fibromyalgia that kept me moving or not the pain was there. One night praying por healing a Bright light in my head sparkle, all my body move like in a shake for I was in bed. Immediately all the pain was gone 🙌 . This was 10 years ago and since then no pain!! In my understanding is the nervous system. Because it was like a clear rest brain was again functioning.🙌
The level of dismissal, disbelief and lack of compassion by my people is enlightening and also, to be honest, just crushing to me inside. Never felt so alone in my whole life ... and I've been homeless before.
It's ignorance more then malice - but tough to deal with for sure - I think most of us feel like you do at some point during our journey - you hear people talk about that all the time in the recovery interviews: cfsunravelled.com/cfs-fibro-recovery-stories/
Hate when people are like "well you look ok to me" when you try to tell them you don't feel well enough to go out or whatever. I've known people who have been berated for parking in handicap spaces because they "don't look sick" to some random stranger who can't just mind their own business.
The worst thing about Fibro is NOT the pain. Its having to constantly explain why I am too exhausted to want to do ANYTHING at all. To me, a successful day includes getting dressed, cooking, watering my plants and getting the mail.
It really depends, for exemple for me it’s the pain cause it’s so bad that I often collapse even in the middle of the street due to the pain, no one experience the same symptoms and with the same intensity
I was the same way till I started taking lyrica and it changed my life. I feel amazing n myself again of course with limitations n such still but I have less pain, mind blowing improvement in fatigue and fibro fog.
One symptom not mentioned in this video is itching. I itch from head to toe with very little relief. This itching is in addition to fatigue, joint pain, and poor sleep. This has been going on since about 2014 and as I approach my 80th birthday in about a month, I wonder if I will ever feel normal.
I know that I don't know you. But I can feel your pain I have fibromyalgia too. I wish I could be normal like everyone else too. I have to get off my pain medication before
I know that I don't know you. But I can feel your pain I have fibromyalgia too. I wish I could be normal like everyone else too. I have to get off my pain medication before
I had no idea I was not the only person with this itching that seems to be more noticeable as I crawl into bed at night. I just thought it was the soap I was using or from dry skin. As a sufferer of fibromyalgia for many years, it impacted my ability to work effectively as a Medical Lab Technologist. The noise, stress of working, the body pain, and as I've come to realize, the lighting in the Lab became unbearable, and I had leave my job and go on disability. I always hesitate to disclose my fibro diagnosis to medical staff, as I am always unsure of what their beliefs are when it comes to Fibro. But, we soldier on.
There is also the reverse: doctors nearly always write off my symptoms as fibromyalgia. In fact, my cancer diagnosis was delayed by at least a year because my symptoms--which I did seek medical care for from more than one doctor--were never assessed, but were simply labeled as new-to-me fibromyalgia symptoms. It's the medical community that needs to be educated about this, not fibro patients.
If you don't mind me asking, what kind of cancer did you have and what were your symptoms? I think I'm going to be pushed into the fibro corner soon but don't think that's whats happening.
first, I am so sorry for your experience and my own has shown that is likely not uncommon in the least, though terrifying. My thoughts to you and you recovery. But...Yes, Yes, Yes! I have been gaslit and dismissed more by medical"care" staff (from specialists on down the line) than any "layman" has ever displayed to the chronic conditions I suffer from. It is has been horrifying the way my symptoms are disregarded and untreated and my symptoms ignored. For instance I have had night sweats for over a year with swollen lymph nodes, I ask, "is this the autoimmune conditions? Is this the fibro?". They order a blood test, it's normal, so I get no answer, no follow up and complete dismissal of these symptoms which I keep bringing up. I am going so far as to move in hopes of seeking better care, this is killing me. I feel completely alone and really uneducated, my husband and I are trying to learn as much as we can on our own, it's been a crash course of "omg, that's why that has been happening!, thanks doc".
Thank you so much, I’m a 53 year old male. I’ve been suffering for many years. I think I’m crazy and so alone with this awful thing. I was diagnosed along time ago never heard of it before that. I don’t want to live most the time, feeling like a week person. I pray a lot. Hearing this brings me to tears, I’m not crazy or alone. Thank you.
You’re not crazy or alone. Super validating. Hang in there, you really matter! I do yoga and take Kratom for my pain, helps quite a bit....can be addictive. 🙏🏻🥰
As a man it's often a case of having insult added to injury - wrote about fibromyalgia in men some time ago: cfsunravelled.com/fibromyalgia-in-men-effects-beyond-the-symptoms/
So many mentioned support... I have some now but it's almost like too little too late.?? The support I have comes and goes along with apparently my believability! I have depressive bi-polar and the one person I have in my life will occasionally shoot me down saying that I don't have it! He claims all including fibro never existed before so in his all-knowing wisdom it is 'made-up' now. I have lost so much of my life and now my body is totally worn out, my knees, hips, back and neck are so bad I can't walk straight and my strength is failing. I used to be strong and able to do so much I am 55 and feel 105.
I’m 71 and I’ve had fibromyalgia for six years that I know of, I was on medication for two of them, something called Neurontin, which worked a little bit. But you are not crazy and you aren’t alone, but it is hard to get support from people when from the outside we look fine. If you ever need to talk to someone, I live in Denver Colorado and If any of you want to talk to someone that understands you can reach me at 310-405-5021.
Hello , I have a great niece she is 16 years old and has been diagnosed as having fibromyalgia. The NHS say as she is no longer a child then they will not treat her. She has been told that she cannot receive treatment for 2 years as she is not considered to be an adult either !!! How is this possible that they will leave a young girl in pain untreated because they say that she falls between being a child and an adult . Her mother is gobsmacked by this and so am I . I would welcome your opinion on this , have you come across such a situation in your experience. Do you have any advice please
I have been diagnosed with Fibromalgia about 5 years ago. It took decades for someone to actually give this condition a name. We don't look ill. We are tired and hurting... every day. Lord I wish I could have one night of good painless sleep. Memories of a painless day are fading. It is horrible to be tired because of pain, every day.
Having watched my wife go through this I can confirm how bad it can be. If particular the fatigue and brain fog. Memory retention is shocking. We were told it was brought on my the sudden death of our son. It’s been ter,rib,e watching her go from a fit and healthy lady to what she is now. Shadow of the woman I fell in love with. Heartbreaking.
sorry MG about your wife. trama can make fibro worse, infact it can trigger it if you have it but not too severe. i was diagnosed in the 80's, my doctor then said to stay as active as possible and as fit as possible..as i did till about 14 years ago someone fell into me and broke 2 of my ribs. and then the fibro flared and has been a constant pain and other symptoms in my body since. they say it can go in remission, but so far no luck. i do find taking B vitamins helps to a degree, and staying away from sweets and artificial sweeteners, and ingredients i no longer use margarine, or eat a lot of packaged snacks due to the whatever they put in them. all it takes for me is to have that candy bar or slice of pie. much hugs to your wife. i wish her some comfort.
My sincere condolences on the loss of your son. I have 2 and I just can't imagine the heartbreak. But, the most important thing for those of us with FM, is a good support system and just someone who loves us enough to really understand. You're a good husband. Bless you both.
I’m 30years in with Fibromyalgia and now ME. It’s true what you say, I get into many arguments with my husband and family because I won’t go to the doctors just to be told “it’s Fibromyalgia “. The guilt I have is horrendous because I can’t get out often. Family parties etc just fly by me. It gets to the stage where invitations are far and few between. The thing is different people have different symptoms, what helps one person doesn’t help another. Sometimes I just want to put a big sign on me I may look ok but my body is screaming! I pray that as time goes on someone somewhere will find a cure, till then I’m plodding on. God Bless all of you out there who are suffering and God Bless the family who are watching your decline because they are suffering too. Xx
Hi Patricia, sorry to hear you have been unwell so long. Look, given the nature of the condition , I don't' think we will see some magic panacea cure (there aren't a whole lot of cures out there for anything). However, people recover their health anyway, both partially and fully. I have been sharing how they do this in the recovery interviews for a decade now - check out some of the interviews! Also, check out some of the other resources on the cfsunravelled.com site, like the book - to learn how these recoveries happen so that you can personalise your own action plan.
Im that way now as well. I dont go anywhere but doctors visit. And after a trip into town i will sleep the next 2 days. I will have anxiety attacks the day before because i know how bad its going to hurt and how utterly useless i will be for days after. I still have teens at home. My doctor says the anxiety before leaving the house is akin to ptsd from the pain and situation. I have days i sleep 4 hours while the pain meds work...up 4 or 5 hours till the pain meds wear off then back to sleep for 4 or 5 hours. Its so bad my dr got me a home health nurse so that my b injections and blood work could be done at home. I have several other disorders as well. I have several drug allergies and the drugs for anxiety work the opposite on me. They cause extreme anxiety, intrusive thought, hallucinations and fear response. So i stay away from them. I have been to pain management after pain management clinc...always end up back on opiates. They are the only thing that settles the pain and anxiety..doesn't get rid of it just settles it for me to continue with life. Showers are impossible. Same temp water coming out of shower on place it feels like ice water another it feels scalding. And it hurts having it hit me...like stones hitting me. Then theres the chill afterwards that lasts hours..no getting warm. Which hurts and flares the pain to 9. I live at a 5 even on meds. The hope is to keep me out of the rafters. Many times i have went to rafters and have had iv meds to back it off. I also get infections...like feeling great and 5 hours later in an ambulance being wisked to the er. I once had a blood draw that was clean, 12 hours later i am in icu on 2 different antibiotics and my husband getting the "its up to her and God" speech. 5 times in 5 years and 8 in the last 12 years my family has heard the speech from "flash infections " except once with a reaction to the antibiotics....and once to my hemoglobin dropping to 3.3( yes you read that right). It was during the height of the lockdowns and they had to give me A- blood when im A+ they were calling the state dept or someplace like that to get blood from Canada for me. But luckily the found 2 matches in my area that donated and my body kicked back in. I have always been anemic and had b vitamin issues. I use lidocaine gel, lidocaine/prilocaine cream, diclofenac and pressure points to deal with the odd sharp pains. I say its like someone has a voodoo doll of me just sticking pins, nails or railroad spikes in me. The arthritises are no help either. 3 months ago i ended up in the hospital because my kidney was so full of pus and the dr who drained it said it was thick as toothpaste. Had to have a stint put in an at home iv antibiotics after a week in hospital with massive antibiotics. I never hurt in my stomach. I hurt in my shoulder for days before. I thought i had mucked up my shoulder again...nope referred pain. I had even been to the doctor for it. But no blood test...now every time i go in for anything they will run a screen on me. Since where i hurt isnt going to tell me whats going on. Its so bad that when the urologist and my infectious disease doctor cam in i called her by her first name and she mine...the urologist said its not good or normal to be on a first name basis. She asks about my kids and me about her dogs. I used to be an outgoing balls to the wall person. Never sick. Worked full time and went to high school and college while being married my senior year. Plus did debate and forensic and the school plays. I never slept more than 5 hours..couldn't. After my divorce work 60+ hours a week and did things with my kids. Then remarried had more kids did the whole from scratch cooking, canning , gardening and homeschooling. Never slowed down. Not even after my month in the hospital with the flesh eating bacteria. Came home with skin grafts healing and took one hydrocodone. I could deal with pain no problem. Then the fibro hit. I am totally a different person.
@@mordeys I finally put two and two together when I had a horrible case of sciatica last year. I realized that the lidocaine cream and gel was actually making my pain worse. I hope this is not happening to you. I enjoyed reading your experiences. This health condition is definitely a puzzle.
@mordeys, where do you live? What works for me I can't get cause everyone is trying to rid the world of opioid perceptions. That's why I was wondering where you live. Prescriptions.
I do understand everything you are saying. I have M.E.on top of that and pernicious anaemia. I have a wheelchair which I never used as I was determined to not use it. I had so many falls due to my spine I have arthritis there so falling seems to happen but I nearly died from last years fall when I split my skull open after a fall went unconscious then into shock I had 8 stitches but lost a lot of blood. I'm in the uk and I'm crying out for help but the pain of my spine is getting worse so I can't get outside without some help and my family just let me rot. I still try to do things for myself but there's only so much we can do. I ran a bath last week but I had no energy to get in and I had to pull the plug out! It's things like that. I watch summer pass into season after season dying to get out- dying to live but no one is there to help. There are many like us I still think we could be helped more. Please know that I know you are somewhere out there and I will pray for you and all our amazing Fibro Fighters! 🙏 ❤ 💐
I was diagnosed with fibromyalgia about 15 years ago. I thought it was only a muscle syndrome until i saw this list of things that you went over in the video. I am in awe..... you have TRULY answered SO MANY questions that i have had for a very long time. 😭 . I have so many of the symptoms that i wouldve never thought would be linked to my fibromyalgia. But i have overly fatigued and brain fogged every single day. I dont sleep well. I have restless leg syndrome, migraines, sweats, hair loss, IBS, sciatic nerve pain, but i also have disc degenerative disease so that could be part of that. Im only 49 and my vision is blurring. And yes, ALOT of places on my body, if you touch, are EXTREMELY painful. Sounds, loud TV, children, etc. Im more sensitive than I used to be. I wouldnt wish this misery on anyone . 😭😭
I didn't know sweating could be a symptom of fibro! I sweat profusely and am years from menopause and noone can explain my sweating. I have poor sleep, joint pain, and sciatica. I am wondering if I have it or something similar?
EXACTLY SAME- situation…severity.. symptoms.. sciatica & sadness of ALL of this. May you, all of us find much healing and more comfort in each other’s knowledge and empathy. ❤️🩹☮️✨
My mother also has degenerative disc disease and fibro. She struggled all our lives to give us the best life she could manage, and now that I'm also developing symptoms on top of being autistic, I see now how hard the struggle to maintain some semblance of a normal life really is. You should be proud of yourself for making it this far despite it all.
Im 55 got told at 15 it was all in my head and heres amytriptiline.. 2 years ago saw a locum doctor who listened and said sounds like fibro to me. For the first time in years i felt heard no longer invisible. To all suffering i see you i hear you ❤ from scotland x
It took me 2 hours from waking up,to showering,to get down the staircase and get to the kitchen. Im nearly 60 and cried for my mother. People say,oh bring the dog for a walk,get some fresh air into you,you'll be fine. What am i to do when i cant hold her lead or she pulls on it and my arm screams in agony. Its bloody awful,so dont take our "good days" for granted.
I feel for you it's such a overwhelming condition to live with..CBD oil is so good for the pain. I was prescriped many pain killers..which I won't take I replaced them with cannabis oil..my pain levels and symptoms have changed remarkably.. I have abit of a life now... blessing from me to you.. keep strong...
I have had this invisible disease for almost 30 years and do get tired of being looked at sideways when I feel ok one minute and terrible the next. Thank you
I understand. I've dealt with fibromyalgia for over 50 years. I wasn't diagnosed until I was in my sixties. I'm 75 now and my Dr understands why I need mild pain meds. It's true about trying to make plans and then your body says, "not today!" I don't look sick, but few people in my life understand how tough some days are for me. I do the best I can every day. 😊
I have had fibromyalgia for 25 years. I have been taking amitriptyline for about 20 years and It has been a life changer. I don’t get as many flare up as I used to, and obviously stress adds to it. I hope this helps.
I have 6 auto ammune deseses.30years ago I only had cronic skin problem.got put on syclasporin then I got crone's deseas.got part of my bowl removed.steroids and morphen.then two bone deseases ousteperosis.then framalga.. when lockdown happened I got a really bad flu.. I've had pluracy before,but doctor said to stop my meds as I had pain in my lung's..that was one half year's ago and not been on meds since.i have no illness no crone's no pain nothing..I Will never take Meds again..and I will never take a virus test or the shot.i lost 30 year's of my Life in cronic pain and suffering like broken bones.noe I feel free from poison..and take holy communion and pray for the whole world..amen,🙏❤️🙏
I had heard that having fibro is like having the flu every day of your life. Sometimes it's like that, but other times I'm so wiped out that I couldn't possibly identify anyone illness. What I most appreciated about this video was the reassurance that regardless of how people - - my friends and my own family - - - regard me and my symptoms, they are real (the symptoms, that is). Thank you for providing this.
Carla, I see you! I believe you! You are not alone. It is very difficult for people who don't have the condition to really "get it". It doesn't go over very well when someone asks you "How are you today?" And we want to say, "Well, my mitochondria isnt processing very well today". That would produce a strange look of disbelief and confusion. But it's true! Every cell in your body is messed up and not producing energy effectively, but it's not easily observable by the other person. We really need a test that they can see... and a famous person to champion the disease to give it visibility. The problem is that people with moderate to severe ME/CFS don't usually become famous because there stuck at home, exhausted and bedridden. There's a long way to go. My best to you, friend.
I relate to most of these comments. And what bothers me the most is when we are not supported by our loved ones. I’ve learned to manage & live with the pain, mostly, but the pain my heart, mind & soul feel from being expected to do things I am physically not capable of & being demeaned for it is what is hardest for me. Especially because these people KNOW I am a giving, caring person because I have helped them so much in the past. Now that I need help tho they seem confused. I am such a doer that it’s very hard for me to sit on the sidelines & not be able to help save everyone like I always have. Ironically, these people that are giving me a hard time are also some of the people that caused the overwhelming stress that caused the fibromyalgia in the first place. Anyway, the emotional and mental strain is what’s the hardest most of the time for me. Thanks for the video & forum to express ourselves!
I've gotten to the point where I dont want people to touch me because it hurts. Clothing hurts. The cold & extremely hot kills me. So tired 24/7 and the sugar cravings you get from having fibromyalgia are nuts. I'm so tired of doctors not being educated in fibromyalgia. Being treated like an idiot by doctors. I educate myself on fibromyalgia it's sad when you know more about it then doctors do. Join fibromyalgia support groups this helps you and adds to education for yourself. I've been denied my pain meds because a doctor told me at a pain management appointment I went to that pain pills dont help. I advised him yes they do and you have absolutely no clue what your talking about. I've learned to watch what I eat and try to stay away from stress, meditation, and honor myself on bad days and good days. Praying for everyone out there fighting this fibromyalgia battle 🙏
Vicki C by watching what you eat do you mean you are on a certain diet? I have heard good things about paleo and about fosmaps- I think both of them are elimination diets that you reintroduce foods, find what’s bad for you and tailor the diet to your body.
@@janetscofield7740 of you are on FB at all I suggest typing it in and start joining groups. You'll find what groups work for you or not. If your looking for a group in your city. I suggest looking at fibromyalgia groups in your city that your from. I'm not on FB anymore otherwise I could give you a list of names of groups
Sciatica is my most aggravating symptom besides the pain I have all over. I have had Fibro for 18 years now, and I believe mine worsened even though they say that's not true. I have many things you mentioned, like the sensitivity to touch. The brain fog, pain all over, not enough sleep even though you sleep it's not deep sleep. It's truly horrible to live with, and I don't think anyone would lie and say they have such syndrome or disease. Nobody will ever want this disease. No way. 😔
4000 years ago Hippocrates left humanity females precise 34 part recipe to treatments behaviors therapies mitigate eradicate cure #fibromyalgiasciatica bone-on-bone chronic pain immune deficiencies mental health spiritual health psychological health chronic fatigue PTSD deadliest to females 10 to 1 male lickety-split no failures as long as you follow the recipe!
Was diagnosed eventually with fibromyalgia I am in so much pain and tiredness I just want to lie in bed all day it doesn’t help having anxiety and depression also crushed and slipped discs and arthritis in my spine but I do try to get ready but most days I end up in my nightclothes all day it’s a terrible illness and I say prayers for all of us who suffers God bless
I have the same. Arthritis on my spine, knees and serious bursitis and degenerative disk disease and degenerative joint disease. That with fibromyalgia is almost to much to bare some days.
I've had ME/Fibromyalgia for 30yrs and 1month now. I am constantly in chronic pain, have severe tinnitus, unable to sleep etc etc. Absolutely sick of it! 😢
I have developed Tinnitus (Ringing in the ears) do you think Fibro has caused this??? Been looking for answers and I'm glad I saw this comment. I blamed side effects of medication for Tinnitus and blame myself for feeling tired, exhausted, irritable all the time. It's hard to accept my health issues and I blame myself and say it must have been something I did... But I have been praying to God for wisdom and understanding and God knows all and he is my great physician. 🙏 Prayers for all who suffer
I’ve noticed that most illnesses that I get are instantly blamed on my fibromyalgia. It’s very annoying how some people don’t believe it’s a thing. Thanks again for your video
Fibromyalgia is real alright!!!!! I manage mine by staying clear of all white shaded food group--- no white spuds-- pasta--- sugar---flour---salt--- it suppresses yr immune system and also can flare up yr fibromyalgie---- eat fisg-- nuts--- fruit and vegetables and eggs---- I went gluten free and that helps also--- I make my own gluten free cakes--- stay clear of citrus -- 🍋 lemons can be a culprit also--- what we eat is who we are--- GOOD LUCK GIVE IT AGO AND FEEL THE BENIFITS---
@CFS Unravelled they blame everything on us having fibro. My Doctor said that amongst my other illnesses, there is something else wrong but well don't know what....
@@quinnitaj4653 oh yeah, It’s a thing, but I don’t want to respond to “What hurts?” anymore. Everything hurts! The best way to explain it is that it feels like my blood is on fire. That’s all I can think of. Who can relate to that?
My fibromyalgia was caused by a trauma. I found myself finishing your sentences before you did. Very well explained. But there needs to be more acceptance of causes too, and that trauma can play a big part.
Yes, after decades I've learned that complex trauma, complex ptsd and fibro are no coincidence. The pain, physical, mental, emotional and spiritual...I call it a pain soak.
I feel my health issues fibromyalgia being one of them was triggered by coming home from work and finding my husband deceased. He had beginnings of dementia, and other health issues for a year and getting weaker. From that day I have seen my health decline. I have anxiety, sensitivity to light and noise. Migraines, Hashimoto Thyroiditis, pernicious anemia, and fibromyalgia. I am in pain everyday. Fibromyalgia is real.
I become so fatigued that even strolling through no more than 3 stores with my husband wipes me out. He does everything for me and can spot a flare immediately. My heart aches for women who have a husband that doesn't care or won't take the time to understand. How I wish that I could sleep all night. Very often I wake myself up grunting in pain. It encompasses my entire body. 💔💜
You have a very sensitive husband with your illness. Mine not so. Doesn't believe I have that problem. Calls me names and requires me to do more when so tired. I now have diabetes also with heart problem High blood pressure thyroid and more. Oh well. I'm sure many of us have problems and illness.
@@pjmjdmurdach4792 I’m hypothyroid, I have fibromyalgia and IBS, but my symptoms have diminished over time. Stay away from white bread and sugar they are your worst enemy…alcohol doesn’t help either. I’ve been diagnosed with IC also…I think it’s worse than fibro. So now I can’t have any caffeine, or sodas or citrus drinks. I believe it’s all environmental…God did not intend for us to have so many man made chemicals in our water, food, and all around us really…I’m sorry you don’t have someone to lean on…I will pray for you!!
It is terrible that doctors do not care to treat the pain away from you when it is possible with modern medicines to take it all away and reset the system.
@@Warrior4Him I came across some info about CRPS or RSD or Causalgia/allodynia and how the pain spreads in the body. The pain mechanism seems to be the same in the spine and in the spreading way and it is not in the head but in the spine. The nerve irritation can be for example a trapped nerve, nerve damage or a chemical or continuous electrical irritation, which makes the body oversensitive especially the skin. It helps for some people to get away from big cities and the sources of certain molds, which usually starts it all. Then chemicals, wood, glued new furnitures with holes, ink paper and even electric fields (some people get shocks from TENS (pain treatment device) after several days of its usage without having a break) can be too much. It has gotten better for some, who avoid all the sources of stress to the body whether that is the lack of sleep, scents, certain chemicals in the air and skin - natural or manmade. ONLY the medicine, which works for central nervous system seems to work like fast opiates and brain medicines except antipsychotics, from which I heard make the nerve pain worse. Acupuncture, tricyclines and gabapentine has helped many.
@@Warrior4Him What do you think? There was also a document in Netflix from a genetic metabolism problem called CPT2 disease, carnitine palmitotransferase type 2.
Can't think under stress. My mind is confused and I don't remember things. I was forgetting to put soap in washing machine for months when I first got diagnosed. Funny I was remembering fabric softener. Couldn't figure out why clothes weren't getting clean then one day I caught myself
I feel the same. Fatigue, brain fog, unable to relax, feel tired, joint pain, swelling of my body, hands and feet. If I sit too long I can hardly get on my feet from the pain in my legs and lower back. My neck is sore and shoulders as well. I react to foods. Sometimes I feel that I'm being pricked with needles in my feet and other parts. Or stabbed on my back. The inside organs are affected as well. I can never stay still because I feel itchy, tickled everywhere. Sensitive even to fabric rubbing my body. Loud noises bother me and more. However, I say to the Lord "all for your glory, for you my Jesus" because He suffered more than I could ever in this life. My friend I feel for you. May the Lord strengthen you and give you great faith to withstand any sufferings. Life is short compared to eternity.🙏
rita Daniel I can relate to you Rita. I got very hurt when my GP called me “crazy” I felt depressed at that point not before but he has already put me on ante depression meds which I felt was not needed at all. Mine is a big story, no time to go on about it. But please know you are not alone in this horrible journey.
I live in Northern Illinois. I had a hip replacement back in 2007 and it went bad, would go out on me while I was walking, etc.! after 11 months. I went in to my doctor. He took x-rays. He said the hip was “perfect” and that I was there “looking for drugs“. A doctor at the University of Iowa did my revision surgery on that hip. The ball joint had been loose, which does not show up on x-rays!! It was a 2 1/2 hour drive for us, but so well worth it! They treat you there like you’re human!!!
I was accused of displaying "attention - seeking behaviors", and my GP screamed at me that he "believed I was sick.. SICK IN THE HEAD!!!" And I gave him an earful before storming out of his office. Now, I'm truly afraid to go to the doctor.
Yes. My name is Tina. My whole family thought I was a hypochondriac until I was diagnosed in 2010 just 6 months after my mom died of accidental overdose from the pain caused by fibromyalgia. I have often said the pain is like having the "flu on crack" x 365 days per year. It's absolutely horrible. And I never get to sleep until my body just gives out. It's terrible. God bless you all. Thansk for this video.
LOL rolling on the floor and everything else that comes when you do not spell check I did not mean discrimination I meant description this is why you don't reply on Ambien oh my goodness.
Same here, I feel achy all the time. On top of having Fibromyalgia, I also have RSD Reflex Sympathetic Dystrophy it is painful and having both is awful.
My cousin has fibromyalgia and tried going gluten-free, which actually helped with some of the pain and fibro fog. Going gluten-free, for whatever reason, does seem to help many fibro sufferers, so that's something to consider trying. Also, having a weighted blanket seems to help with her sleep problems. The struggle is real, I know. Hugs and purple butterflies to all who suffer.
Funny how we all seem to suffer differently. I cannot have weight on me so I use the electric blanket instead. Love to your sister from a fellow sufferer and thank you for being there for her.
I've most of the symtoms that's horrible.the most that bothers me is my skin feels like it's on fire n in the shower the water feels like shattered glass hitting me.I pray some day they find a cure or something to relieve the deliberate pain.thank you for this video
Thank you for this! Fibromyalgia is demoralizing. I especially like you you mentioned the fact that we chase down symptoms with no answers until we just give up and go crawl under a rock somewhere. What makes me mad are acquaintances who say "I get it" when they absolutely do NOT get it. They have not so much as listened to a video or read an article. They don't understand why some days I feel that I have the bandwidth to function well, and other days I fight to get out of bed. Some days I start out thinking I can do things and then crash hard. When they see me, I seem "fine" so they demand commitments of me when I can't make them. It's so frustrating you just want to scream sometimes. No wonder depression and anxiety often accompany fibro!
I've had it for about 15 years and got a confirmed diagnoses after 100's of suppositions! The fatigue- I liken it to a hoover being put to the bottom of your feet and sucking the energy out of your body. It's affected my spine now as well and I can't walk very well and I live alone. My family show little interest and even less care. So it's hard to have a conversation about how I feel when it's clear it's a taboo subject for them. I wouldn't wish this illness on my worst enemy * if I had any which I don't * however I'm still positive and take each day as it comes. I find my spiritual beliefs helps. Sending love to all fibro fighters out there! ❤
Thanks LadyAnna. I'm pretty much in same position , I fight every month for pain medications with no family support. Medicare and Medicaid both have free to you in NV State , maybe your State also that will pay a caregiver to come help and visit in home several times a week. Some will do lite house work, like cleaning , cooking on their own while visiting , others will so some grocery shopping, cooking, help getting up, dressing. And they just get paid to come sit and visit but have been know to do other extra things around house and take you to doctor appointments . States pay into these programs from Federal funds. They will also pay family member that comes or lives with you on regular bases. Human Resources Dept.. Try talk to them for help. May be worth a try as in younger age and older people these symptoms are extremely debilitating at times where its hard just to get out of bed and walk. They also pay for walkers, elec chair ,,etc when doctor prescribe them but you have to ask doctor to order it. Best Luck..Vonnie in Vegas
Wonderful analogy about the Hoover! The fatigue is undescribable and so is the depression. I can't walk very well anymore, my feet & legs are like wet noodles. At 60 years of age I'm giving a wheelchair a lot of thought. I certainly can relate to your exhaustion its horrible n my family believes I'm lazy or "put on" these symptoms.,😖. It's all very frustrating!
@@donnalowe5791 I know it's the most cruel misunderstood illness. If anyone ever asks how you are say " From the neck up I'm fine!" That excludes the rest of you which is not fine. I was given a wheelchair years ago when I was still able to walk they said " you'll need it" I don't use it as I have no one to push me and if they did it would be downhill!! I'm thinking of getting one of those smart mobility scooters. I live here in the uk where care is abysmal. Because you look ok people think you are ok- well from the neck up most of us are fine! I hope and wish for you all the best. I will remember all you fibro warriors here in my prayers. Stay strong! ❤ 🏴 ❤
@@westwinds6034 Thank you for your lovely reply. I live here in the uk where care is abysmal. Its a lonely cruel misunderstood illness and we are real warriors if you ask me. My family don't understand either or care to understand. There's nothing we can do except carry on as best we can. Take one day at a time, tiny steps we cannot do more than that. I'm thinking of getting one of those smart mobility scooters as I never get out. I don't like the thought of them but I'm a prisoner in my own home! Just stay as positive as you can I know it difficult, not easy at all. I will remember you in my prayers as well. ❤
This video brought me to tears. Just hearing someone finally agree with what I've told my doctors for the last 20yrs. Chronic illness and pain are not make believe. Getting quality care to help you seems to be. Thank you for making this video.
I agree, I've got so many of these symptoms and get so depressed bc ppl(mostly family) say when aren't you sick,like I want to feel like this. Have pain a lot of time severe almost daily and God forbid anyone gives you anything, haven't slept more than 3hrs straight in yrs. Part of the video that got to me the most was the feeling of sunburn when touched,it comes and goes and it's in different areas, Dr had no clue, basically thought I was nuts!🤯
I get it too. I had a great rheumatologist who wasnt satisfied with the fibro diagnosis & kept digging & doing more tests. He found I had mast cell disfunction/dysregulation. Apparently this is not uncommon in people with pain disorders (migraines which I also have) it is very common. Over production of mast cells can cause a lot of GI, skin & allergy symptoms that many fibro patients have as well neurological & joint pain. The sunburn feeling is most likely vasodilation possibly caused by release of mast cells.
Ima quigmire I always say I wish who ever says that to me could live in my body for a day on a good day, then let them try it out for a day on a bad day.
They are, they just ignore it because they don't understand. Then it's easier to ignore or say 'it's between your ears'. Imagine a doctor has to say 'I don't understand but you're sick'. Many doctors (luckily not mine) won't do that, they're too arrogant for that.
It's linked to Narcissism pathology and CPTSD, but medecines as science devides things into compartments and so miss to make the right connections to understand how to treat it!!!
I just wish more Drs believed it is real. I think most of them still think it is just a catch all for hypochondriacs. I have had this for decades, from soon after a complicated pregnancy and delivery. Within a couple of years there were days I was unable to get out of bed the pain was so bad. When the pain got somewhat better I stiI ll had to deal with the chronic fatigue and bowel symptoms; very hard to hold down a job with those. I am now 65 and still have most of the symptoms but less often and less severe, only now have severe arthritis thrown into the mix. Damn.
This has to be one of the saddest comments I've ever seen on TH-cam. I'm so sorry its been so hard for you. I juat found out I have fibromyalgia recently coupled with MTHFR gene. Still learning about everything, thought the way I felt was just normal for who knows how long. I thought it was just a part of getting older and im 31 haha
I only clicked on this because lady gaga has this and I wanted to learn more about it. But seeing how many people suffer with fibromyalgia is very eye opening. I hope everyone can get better.
yes no Thank you so much, but for us severe sufferers like myself, it was upsetting! It’s taken Lady Gaga to get ill for it to become more known & in the news............Unfortunately this doesn’t help us fibromyalgia warriors, what helps is kind people like you taking a interest, thank you & gentle hugs 🤗 x
Thanks for presenting the symptoms. I was diagnosed with Lupus in 2008 and then Fibromyalgia in 2010. I don't sleep well, skin feels bruised all the time and am totally fatigued all the time. People need to know that we are not seeking attention. It's real.
I was recently diagnosed with fibromyalgia, so I wasn't sure of all the symptoms. But thanks to this I understand my diagnosis so much more. All the pain, fatigue, migraines and bowel issues... I sometimes also get very dizzy and faint, normally accompanied with a sensation like I'm dreaming - like I'm not quite inside my body. Does anyone else get this?
Yes, and no one gets it. I am tired and sick and sick and tired of people having a negative reaction to my “complaints 9:42 .” This hurts almost as much as the physical pain.
Yes. I have had that sensation. Like a slow motion fade to black faint and yes, separate from my body. Then i faint. I can still hear, but can't move a muscle or open my eyes. It's frightening. It can last 10 minutes or several hours. Good luck. I have no suggestions other than get as much rest as possible. Start a food log, just in case some foods flare up your symptoms. Heat helps me with the pain.
Thank you for this informative video. I have had fibromyalgia for 32 years. Having this debilitating disease is hard enough. Dealing with people's ignorance, judgement, and denial of this very real condition makes things so much more difficult.
My symptoms are ALL you mentioned. Diagnosed in 2014. I always feel like my life energy has drained out of me. Pain from touch, muscle pain, brain that feels like chemo brain, hair loss, inability to sleep more than 2 hours at a time, extreme fatigue etc. When I finally got a diagnosis, I was relieved that I really wasn't crazy because docs kept saying it was all in my head.
I found a doctor who actually treated me for fibro. He has retired, so I am screwed. I took Ultram, Soma for pain and Doxepin and Ambien 5mg for sleep. It helped. If I can sleep 6-7 hrs I feel like I can face the day better. I am being shipped off to a pain control doctor. New rules for controlled substances. I know I am going to be treated like a criminal. Not looking forward to it.
I went to the ER with a panic attack one time...thought I was having a heart attack! The female attending doctor took my symptoms and my vitals and got really close to my face when she told me...ITS ALL IN YOUR HEAD. I looked at her as closely as I could lying downn on the bed and said, NO, ITS NOT ALL IN MY HEAD, ITS IN MY WHOLE BODY!!! That was like 2000...I wonder if there is anymore positive info out there for those of us that suffer with it???
I've had this for many years but didn't get diagnosed until February 2020, my family don't understand and get so frustrated with me for being so tired all the time I'm called lazy and they blame a lot of my chronic fatigue on my medication, today I'm going to make all my family watch this TH-cam video, and thank you so much for making this video on behalf of myself and everyone else who suffers from fibromyalgia because it's so hard explaining how I feel and what I'm going through my son rolls his eyes every time I mention its because or it is a symptom of fibromyalgia 😢❤
I'm 66 years old. I can recall having many of these symptoms since my early 20s. No one else in my family had them. And because I was active my symptoms were considered 'no big deal'. I first began to wonder about my problems when I saw an article in a newspaper about a doctor in Sweden, I think, who discovered and named the disorder Fibromyalgia because his wife went from being 'vibrant' to being bed ridden. But I 'soldiered on' because I was young. Eventually, I was told I was lazy. Then when I started having panic attacks, I was told I was depressed. I actually asked the doctors, 'Depressed about what? I don't have anything to be depressed about.' And I was told I was born with it because of a chemical imbalance. So, I took antidepressants for many years. (Then I had to deal with those side effects.) The Fibro symptoms, very slowly, continued to get worse. Then, in 1991 I was rear ended by a vehicle at a stop light. My neck was broken. Believe it or not, I eventually recovered from that. BUT, by 1994, my fibromyalgia symptoms hit me like a freight train. The doctors told me my symptoms were due to my job requirements. Then I began being told, 'you're not getting any younger!' When I started researching my symptoms, I read an article that stated 'a trauma can activate autoimmune disorders.' I've never been actually diagnosed with anything. I believe I have Fibro, CFS, and Sjogren's Symdrome. I haven't been able to find a doctor who would conduct the correct tests. The only test performed was a rheumatoid blood work. And both times, I was told there is nothing wrong with me. My family doesn't understand why I hate going to doctors. And no one that I know understands the brain fog. I believe they all think I've just become stupid. 25 years ago, I stopped eating all sugar, that means all sweets not just the white stuff! Then I stopped eating all meats. It's made a huge difference in my life. It hasn't cured me, and I continue to develop more symptoms as time goes by, but no sweets nor meats has made a difference. And, yes, it was difficult to stop! But trust me when I tell you, it makes a difference. And, yes, we're all different. My best advice to everyone... research, research, research. When I started researching, there were no household computers. 😊 Do all that you can do for yourself. Don't just lay down and die, even though you may feel like it some days!! In the midst of all of this, I've had a heart attack, a TIA, and I've lost all of my teeth. I'm only 66 years old. I take no medicine any longer. I do everything natural and organic that I can possibly do. That's not to say that you shouldn't take meds, but remember, all meds have side effects. Good luck everyone. Continue to fight the good fight! Some day there may be a cure!
paula null I’m from England suffer like many could I get this delivered I tried every medicine bought cream and capsules of Internet had an awful 4 years lost my husband and grandson which has made me worse trying to be strong for my daughter but any help would be good I’m 68 I know loosing my grandson made it worse drs don’t help 🙏
I totally understand. I, too am 66. When I was in my 30’s I started having issues. Spring forward to 60 years old and I was diagnosed with fibromyalgia by a Rhumatologist. I also have a very rare form of leukemia.
It's great to hear that fibromyalgia is being recognized as an actual syndrome. I suffered for years with it back 1999 through 2000 before a holistic rheumatologist diagnosed it. I had visited at least 6 other doctors, including a neurologists, and they all made me feel like it was all in my head.
I had one "doctor" actually say, " it's all in your head." I had been in a car wreck and flipped my car 3 times when a tire blew on the highway. My fibromyalgia symptoms came on after a few years. This doctor said if i did the physical therapy after the accident, i should be fine, the pain i was feeling was imaginary from the trauma of the accident. Never went back to the quack. Used eastern medicine, including accupressure and accupuncture with good results. Best wishes.
I was speaking to a dr and mentioned that I've been to the support groups for FM, and she just tapped her head and said it's all up here..i thought how ignorant some drs are, but her husband is a dr there too, and completely different, how they remain together, i don't know..
Everyone that doesn’t understand what you (we) are going through should be sent this video. It’s the best explanation I have seen or heard in my 30 years of dealing with this problem.
I was diagnosed in 2000. I have horrible insomnia, wake up at 3:00 every night. Fatigue is so bad some times I feel like I’m gonna fall asleep driving. Some times the pain and fatigue and fybro fog gets so bad I just go to bed. I get up to eat and than sleep 3 hours. Get up go to the bathroom and sleep 3 hours. Some times the fatigue would last for days. I’ve thought about un a-living myself many times.
Take your pain and fatigue to God. His loving care and healing will sustain you. He is the Great Physician. I have a different disease-mixed connective tissue disease- along with degenerative disc disease and restless leg pain and sciatic pain so I have many of those same symptoms. I will pray for you to find the right doctors to help you. I have extreme fatigue especially when I'm having a flare. It has moved to my hands and fingers recently so I have to be careful shaking hands. I can do this, but I'm so afraid my daughters or grandkids will also end up with autoimmune diseases. Praying for others helps me get through my own struggles. ❤
I was like you sleeping all that time and still shattered. I avoided sugar, all wheat flour products, pasta, rice and potatoes. Made Keto bread if i wanted any bread.Bought Benfotiamine ( vitamin B1 ) feel loads better. I hope this will help you 🙏🙋🏻♀️
I was reading all the comments I also have fibromyalgia and lupus they usually go together I take Adderall for both so at least I can stay awake especially when driving I also take methadone and have for 22 years I am 60 now just saying it works for me
Fibromyalgia has changed my entire existence. The pain, rashes, feeling like acid is running through my veins and coming to the surface of my skin, dry nose, RLS, digestive issues, food intolerance, sudden medicine allergies, insomnia, depression... and so many others...
Bluebird lane , ur comment is very interesting. My daughter has the pain in her veins and them coming to the surface! We have been trying to see a diagnosis of vasculitis but all tests say no .. This is the first time I’ve heard about the vein symptoms.. She has all the symptoms of fibromyalgia but the vein thing threw us! Can u tell me more about your vein symptoms..
The reason I'm asking is that it seems as if the fibromyalgia has settled in my lowers legs to the place where it is extremely painful when I walk. Sometimes to the point that I can only walk 5 mins at a time.
I'm a 56yr old woman. After suddenly experiencing some of the symptoms described by you and so many here...originally thought that it was because I was going through menopause. My PC doc just made the connection and made the diagnosis of fibromalga just last week. The reason that I started researching. This video is the best so far... I've watched several of your videos on other topics. This video has put the pieces of the puzzle together for. I've had most of the symptoms you described for the past 2yrs. I had just brushed them off.... but couldn't anymore...as they became worse. The joint, body aches and fatigue is debilitating. I've just started this journey. It's good to have someone like you who understands and can put out such helpful information. Thanks to everyone here who shared there stories and suggestions.
I was just recently diagnosed with fibromyalgia. I was so upset and cried over the diagnoses. I have always thought of it as “no body knows what’s wrong so you have this, and it’s something crazy people have”. I’m so thankful for your video and others like it that educate us about our syndrome. Thank you so much. I don’t feel ashamed of it after being educated.
Goodness, it's definitely not something 'crazy people have' - although when people make you feel that way, well that can kind of drive you crazy - right? 😀 Start to get educated and work towards gettting your health back - no magic cures, but lots of people recover as shown in the interviews on the chanel.
It's such a comfort to hear someone who knows and understands how difficult this illness is, and how much effort and strength most of us have to exercise, just to marely live a semi pleasant life.
You have stated all the ways I suffered for 34 years. I have had more and more symptoms as I have gotten older. I feel so grateful for this video because I don't feel like I'm going crazy or am a hypochondriac. Thank you so much x a million. 😊
Many of us feel like that - it's hard not to when you have a different new symptom every other week. Once you understand why there are so many different symptoms, you can let go of the angst around that - at least that was my experience.
Yes, this video is the most information I've found on Fibro. I only wish my pain management Dr. admitted that Fibro exists. I was diagnosed years ago by a sports medicine Dr. and reported that to my pain mngmt. Dr., only to be told he does not believe in Fibro so I should never talk about that again. So defeating. At least I know I'm not crazy either. I wish you all the best with your symptoms.
@tamb7587 yes I have developed a tremor. It is called involuntary tremors and can be hereditary. Gabapentin is sometimes prescribed. However, I take it already for restless leg syndrome. I know this video was old, but it is spot on. I have been suffering for 35 years and wouldn't wish it on my worst enemy!!!
Having Fibromyalgia isn't bad enough. I had Covid in 2021 and I am still suffering from long Covid. It is miserable. I am a little better now. I know that God will get me through it.
thank god hopefully u can help educate. I am a former RPN myself and have fibro as well as my son 29 who is also an RN and was diagnosed with it at 17. his late father had it also. thank god neither of us gets the brain fog or memory issues but the constant throbbing aching pain sugar cravings for me skin sensitivity to touch the bad sleep and other symptoms are so draining. then the fight for pain meds that actually work in doses that work for me with a high drug tolerance is ridiculous. i can't take any of the fibro drugs bad side effects. my son can't take pain meds at all due to being a working nurse so he suffers with just stuff like robaxacet to help him. he is 6 ft 6 in and been in pain since age 2.5 yrs. i wish more doctors would realize just how bad life can be with this disorder esp when combined with other things like spinal damage, disc disease, arthritis etc. and stop telling us we have nothing wrong with us.
I hate when other people act inconvenienced by my symptoms, especially when I'm flaring up at a time that isn't good for them. I think that's one big factor as to why a lot of people don't believe that this condition is real.
I have people in my life who are oh, so _inconvenienced_ by _my_ illness. As if I'm causing _them_ such suffering by being a bad sick person. I've cut so many people out of my life because they were making me sicker. The anxiety of worrying about their outbursts towards my "hypochondria" was wearing my adrenals down... It gets lonely, though.
I absolutely empathise with this. There have been quite a few times I've been left feeling sad and guilty for being too exhausted and/or in pain to do something that's been asked or expected of me by someone who doesn't take fibro seriously.😔
That sounds awful im sorry you have to go through that. My girlfriend has fibromyalgia and i’m doing as much research as i can so i know how i can support her. I relate to the “other people finding it inconvenient” thing as i am autistic and spent my childhood constantly treated like a burden on everyone else. Can’t go to huge parties, can’t make eye contact particularly well, often speak very loud or very quiet. All of this is apparently “embarrassing” for other people. I won’t pretend to know what its like to suffer from fibro (and autism is pretty different since its in some ways a disability and in some situations a huge advantage) but yeah. Always seems like non disabled people think my disability is *their* big sob story. Everyone wants to “cure” autism - not because they give a toss about autistic kids, but because they don’t like changing their plans or slightly altering the way they speak in a way that mildly inconveniences them.
Thank you for posting this video! It is so very important that people within the medical community, as well as the general public, stop viewing Fibromyalgia as just "Hypochondria On Steroids", and start treating this condition as a complex, interconnected syndrome with a highly individualized list of seemingly unconnected symptoms. People suffering from this debilitating condition are sick and tired (quite literally!) of having their very real symptoms dismissed as something "imagined", "invented", "attention-seeking" or "just a minor pain" which has been blown out of proportion. While the list of Fibromyalgia symptoms was scrolling down the page on the video, I was mentally ticking them off one by one and realizing that I had experienced all of them in my 65 years of misdiagnosis by tens of doctors, some of them considered to be top experts in their various fields. For me, the most frustrating symptom is the relentless, debilitating, utter exhaustion, when just moving your body very slightly feels like trying to move a ten ton truck with one hand tied behind your back. And its very true that we often just "give up" on the medical profession and try and manage on our own. It's a very lonely condition, Fibromyalgia; family and friends get tired of you constantly being unwell with something so undefined and "invisible" ... And I often wonder exactly how many people suffering from this syndrome end up in mental asylums, misdiagnosed as "just delusional"...
Today is January 7, 2024 and I’m literally in tears. I fell out of a window during a fire (Arsen) in 1991. I broke 3 of my vertebrae, cracked my pelvis, and had some neck trauma. I am now 54 and I have been in this Fibromyalgia pain for almost 30 years. I am also going through Perimenopause. Add those pains to my Fibromyalgia pain I feel absolutely terrible. It angers me when my family sees me trying to walk, sleep, or do anything in so pain debilitating pain and looks at me as if it’s nothing wrong with her. 😢😢😢It hurts me because they can never imagine all the pain I’m feeling and it’s worse this time of the year. There is not a part of my body that is not in pain. I don’t take Any medications. I just sit in extreme pain rocking myself and waiting when it to be over
I was diagnosed today..... And I'm crying from the blessing of having a name and a treatmean. I was misdiagnosed with bipolar disorder because od this ....ive been in pain since i was a kid. I thought it was normal...and finally....a doctor looked beyond the stain of a mental disorder that plagued me at 18.
Two years ago I was diagnosed with the rare autoimmune condition of Primary Biliary Cholangitis. It has pretty much the same symptoms. I've had fibromyalgia since 2005. I'm 75 now and can barely make it thru a day. There was a time I didn't believe I had fibromyalgia. Over time I saw three doctors who all confirmed I had fibromyalgia. As it got worse I was tested for PBC.
My daughter has fibromyalgia. She is 42. I truly believe she has had it since early childhood because even then she was super sensitive to touch and tired unusually easily. Just a few moments on a slip n’ slide left her in pain for a couple of days whereas the other kids were having fun.
You're a good❤️Mum Ursala. I've suffered through the same as your daughter when I was young. Playing hard with the other competitive kids is difficult for fibro sufferers to keep up with. Tiring easily and over playing took it's toll and I'd be in pain for days after playing for just a couple of hours. I thought it was "normal". I wasn't diagnosed properly until I was 36yo and was told I had it all of my life and I was so relieved to know it wasn't all in my head, like so many have said to me. Family and friends backed away and Doctors only wanted to prescribe anti-depressants, that in my case never worked but only caused me to suffer more. Us fibro sufferers must treat ourselves as gently as a🦋butterfly or we end up losing the powder on our wings and can't fly. 🌹You're daughter's blessed to have you for a❤️Mum and I will pray for both you and your daughter, Mum's feel their child's pain even💔more.
Please look into Autism and EDS (ehlers danlos syndrome). They are commonly comorbid and may be a better explanation for your daughter’s illness. Doctor’s often slap on the label of fibromyalgia when they don’t know what’s wrong with a patient and claim “there’s not much we can do about it” when there are much better explanations and actual treatments for other conditions.
50 years ago Janet Travell left humanity precise 34 part recipe daily behaviors restorative therapies you must do yourself when obeyed guarantee to eradicate all the hundred and 22 signs and symptoms of PTSD cured with megadoses of TLCs works perfectly miraculously precisely helping mother nature do her best while you get good nights of sleep wake up refreshed pain free mental clarity battle ready.
@@maddienoelle22 💯 agree, but also Neurodiversity in general. I have just been diagnosed with ADHD and also on pathway for ASC assessment. I believe my FM has been caused by years of masking due to being ND
Interesting. I have been suffering from pain all through my body since I was a child. When people just barely touch me, I really hurts. It was hard to play with my siblings or classmates because I always kept say "Ouch". Sounds hurt me and light also. Too much stimulation period hurts me. I don't understand and I don't have the money to get test for Autism, but maybe it's not that. I have all of the other symptoms also and the older I get (I'm 53) the worse it gets. I have gone to drs about my digestion problems and the drs say it's psychosomatic. I am too stressed. I have been dealing with this since I was born. I get so frustrated. Sorry, didn't mean to go on, it just frustrates me no end.
I've had this curse for 20yrs+, this is by far the kindest video! The suffering from the outside world is the loneliest. My sarcasm to loved ones, the plight of having an invisible illness. When a dr casually told me I had this thing, there was no internet and I just brushed it off...because everyone else did. I can not express the humiliation of most doctors noting me as unstable. I still, to this day am just as alone. I have no doctor, I am in my early 50s now, I am so tired from fighting it, I did a bloody good job but now its getting the better of me. Thank you, for this video, for once I am acknowledged, even if we haven't spoken.x
Hun, I know exactly how you feel. I, too, have given up. Sick since 2003, given up since 2015. I fought hard for a long time, but I'm almost 60 and I'm tired. I can't fight this illness and everyone else, as well. I'm on disability since 2018 for 5 herniated discs. They tell me my back is pretty bad. Guess what? My fibromyalgia pain is so bad that it drowns out the pain in my neck. I don't even feel the pain from my herniated discs, stenosis or degeneration. That's how bad fibromyalgia is.
I hear you Natasha. I have been suffering for 10 years and no doctor or specialist seems to be able to say what’s what. I feel like when I mention what’s wrong or the pain, skin burning feeling, stiffness, brain fog it’s just like I’m a nut job. I get you, I hear you 🥹.
My granddaughter, who is just 21, was diagnosed with fibromyalgia when she was a teenager. After watching this video I understand how profoundly this syndrome affects her.
My daughter was bed bound from age 12 to 29. She had late stage disseminated Lyme disease, contracted at age 7 from a tick attachment. She had a string of ailments after age 7, was tested for Lyme twice which was interpreted as negative. Then her health collapsed at puberty.
I’ve had fibromyalgia for over 18 years it’s horrible there are days sometimes weeks when I’m unable to get out of bed because I’m in excruciating pain I’m blessed with having a wonderful family who help me every day I’ve just been diagnosed with polimyalgia as well and I’ve got arthritis but I’m one of the lucky ones because what I’ve got is not a terminal disease i thank the lord every day for looking after me my advice to anyone who has just been diagnosed with it talk to other patients because it truly helps my prayers are with you all x
I really appreciate you sharing this info about fibro. It's completely debilitating some days and I wish more people understood just how bad it really is, not only physically but mentally as well. I honestly gave up going to the drs. I was diagnosed in 2015 but the dr said i probably had fibro a lot longer than that. I got tired of being accused of being a pill popper because I was trying different meds and nothing was working. Lyrica makes me itch really badly, gabapentin doesn't work at all, I've tried creams, patches, steroid shots, acupuncture, tens units, regular physical therapy, aqua therapy, etc. I've even had one dr at the cheyenne va scream at me saying "there's no way in hell I'm giving you pain meds because you're a liar", while my husband is yelling back at her trying to explain why I was bruised because I was crawling to the bathroom because I couldn't stand upright. It was absolutely horrible. The last physical therapist I went to told me my pain would go away if i did deep breathing and imagined all the pain pouring out of the bottom of my feet. I walked out of his office and never looked back. Forget talking to the dr about any other symptoms. Majority of the drs I've seen honestly just don't care.
Even after all these years they still don't get it. I have gone through this for years. It's hard to kick a trail for a new disease or syndrome. PMS was the same way. It's the pain medication abusers that have ruined it for us that are truly ill.
Can I suggest you give Curcumin a try. I was diagnosed with Ulcerative Colitus some years ago, I already had Fibromyalgia. The drugs they prescribed me for the U.C. gave terrible side effects so my G.P. suggested I try an old South African "cure" which was Curcumin ( the natural and active compound in Turmeric). It effectively relieved my U.C. pains but also my Fibromyalgia problems. Just check it out it may help, I hope it does. From Australia.
I'm a fibro person, too. I feel so badly that you've had such bad experiences! I was diagnosed in 2020 by my doctor who totally knows about fibro. Gabapentin helps me alot. I hope you find a better doctor. ❤
@MhMsScrapbook - I know ALL TOO WELL what you're talking about... The Medications are there to be Prescribed when needed & the Pros outweigh the Cons, yet Drs still Refuse, at our Expense, to do anything about it bc of what Others have done. I have THE WORST Anxiety & my Dr has No Qualms Suggesting Antidepressants, but forget about getting any Quick Acting Anti-Anxiety Medications to take as needed. Too many Drs Automatically act as though you're a Drug Addict or get Mad/Insulted if you tell them you've been Researching or give your Opinion on what you Believe will Work Best for the Symptoms you're Feeling, you might get the Stink Eye & their Entire Demeanor seems to Change in a Millisecond!! It's absolutely Absurd!!! I'm tired of Paying the Price for the Illegal Actions of others, bc I'm already Exhausted w/out adding anything else. However, I can Sympathize for the People who actually do need Medications from a Dr, got Ignored & they sought out what they needed due to a Flawed Medical Communities, Systems, Networks& Drs who might as well use the Oath they took, "To do No Harm", as Toilet Paper!!
31 years l have had this,took around 20 years to get diagnosed,it was a relief in many ways to get that diagnosis.Struggling to keep working now,takes all my days off to get myself to the point when l can start my shifts again. It's such a drag,the chronic fatigue and pain are just draining.
"Don't be ridiculous, it's all in your head." "Faker - just looking for attention." "Lazy" "Never any help from you hmmm - should've known better." "Tests are negative." . . My whole bloody life - I was never lazy, or anything else people said to me. I moved furniture - even to 3rd floor apartments. I learned to keep on trucking with EVERY "non-symptom" - I had no choice, no help and was so unbelieved. I'm 60 now and some days I feel 120 but people still don't get it, not even family !! Sad but hey 50 years later I'm ready so ... . . Good luck all !!
Bless you. There are many enduring what you describe. Yes,even family think you're lazy,or some say u don't have enough faith,or it's hubris. It's a disease or syndrome that may not kill you but makes u sometimes wish it would. I worked two jobs,had kids,was active and then nearly bedridden. Once I tried support groups but still am too exhausted to even plan to go. U are in my thoughts. Stay strong
I was diagnosed at 17 after years of going back and forth trying to find an answer for the severe pains i was getting. What was thought to be just growing pains turned out to be fibro flares. Ive developed other symptoms of it as ive gotten older but its good to know there are people who acknowledge that it is a real illness and not just psychological
I've had this for yes and would like to know if there are any new pain medications out there or are they treating this disease differently now with out the pain meds?
I found that menopause does aggravate it. I used to feel like that like growing pains at the back of My legs. My wrists u can't touch them like b4. It first started in my fingers. And escalated.
Thank you for validating my experience. I was diagnosed with “Primary Fibromyalgia” back when I was 24. I am now 60. Sooooo many symptoms since then ascribed to “stress”.
Thank you and your compassionate understanding.23 years in. Am currently having a debilitating relapse. Awake for an hour, then sleep four, awake an hour, sleep round the clock. So tired, sore, weak and dizzy.
Excellent video on symptoms. I do also have to add many of us suffer from low vitamin D, and in some cases folic acid. I have great days and days where I can't get out of pain due to low back pain, and bursitis. More needs to come out about this horrible horrible thing and Drs really need to be educated. I got lucky, my Dr tested me right away to rule out other things before saying I had fibro. And for those who don't understand, it's not a pity party for us, we would rather not have this and have our lives back. Prayers to all of us who suffer.
Make sure you not B12 deficient, being B12 deficient can cause a lot of these symptoms. I know, I was, since taking mega doses of B12 a lot of these symptoms have subsided. Especially fatigue
Bursitis low back pain can be symptoms of Ankylosing Spondylitis. Many many many patients are undiagnosed. My friend is 45 needs a Walker to get around with a chair to rest, her eyes are damaged, she needs steroids to function and is still being told she has fibro even though AS runs in her family and they all have the genetic marker, her inflammatory markers are high and her spine shows a lot of degeneration and her stubborn rheumatologist refuses to admit his original diagnosis may be wrong. Her primary doc now needs to send her 4hours to a different specialist so she can get the treatment she deserves and desperately needs so she can have some quality of life. I think fibro is diagnosed too often and they often dont eliminate other causes first like they are supposed to. I was very lucky my rheumatologist is an expert on AS and knew straight away what was wrong with me. Otherwise I'd still have no treatment and be pushed into the fibro pile
I was diagnosed 5 years ago.. The consultant told me, it's not in your head, it is an actual condition, you have to learn to pace yourself, gentle exercise when I feel up too it.. Such a relief to hear those words.. I have all these symptoms, I cabt concentrate, forgetful exhausted, pain all over, hate loud noises & bright lights. My life changed so much I just don't feel me any more..
I was diagnosed with fibro 21 yrs ago and the past 3 yrs have been misery. Ive never had anyone describe my life so closely as this video did. From the types of pain, to getting out of bed each day at 3am, to the EXTREME fatigue and brain fog that causes me to forget the simplest things. leaving water running, forgetting my childrens birthdays to forgetting many of my symptoms when asked, even when I can feel it at the time, i still forget.
Me too?! I forget my symptoms, too, OR I remember them but I have soooo many I'm not sure which ones are most important (to that particular "professional" also) because there's been the time's I just ramble off everything that hurts, from the hairs on my head down to the stabbing pains in my feet, and see the doctor looking pitiful at me and usually interrupting with questions about my "mood" or "anxiety/stress level". Medical psychiatrists? Idk, I give up, they win? I've wondered if I just have a low pain tolerance due to these dismissals by these "professionals" but pretty darn sure I don't. I was in 'active labor' for 5 days with my son (due to a inverted pelvic bone) before asking for "meds" and a day later to be induced and get him outta there on my birthday and Mother's Day, lol... I'm really sorry to hear of your suffering and hope you're able to find some relief somehow, someday! Till then, please take care and know you're not alone! I'm new to this online, with videos and such, but can already see it's a village here!!! Supportive, knowledgeable, caring, compassionate and.. Validating! Thank you, and I'm sorry for all your suffering, too 💙🙏💙
Me too. Sometimes I think I’m going mad because I’m forgetting things and it’s so frustrating. Lately my fatigue and pain has been off the chart probably because we’ve had such a poor summer here. I always suffer when the weather changes…. The video has definitely helped me understand why I have so many diverse symptoms. Hugs to fellow sufferers xx
@@karenyoung4608 And me too! "Yes" to variations of all the above! This video has been the most helpful - just being affirmed in what you know is true! Comments are encouraging and kind. Sending love and peace to all who suffer with this. It's not fun when you long for a hug, but know it will hurt on most difficult days. xoxo 🙏
My family had trouble with me all my life, in and out hospital and nothing. I found out I had fibromyalgia at 26. I couldn't move without crying. Doing better right now.
What is your most frustrating symptoms besides pain? Whilst there is no cure, people do have partial and full recoveries from the illness - have you listened to any recovery stories? You can find them here: th-cam.com/play/PLYGv2houTixlgFeJ5WHMIMA-BGpDfE8vv.html
The most frustrating thing for me is the variety of symptoms I experience in one day-waking up, having a plan and not knowing how my day start or if I’ll get anything done, or even out of bed. 😢 Lately, nausea, vertigo, and fibro fog have presented a lot of challenges. Why am I nauseous…oh, it’s just my fibro. (Like you said to be cautious of)
I enjoyed your video. Thank you!
This is tough since I have many that are on the list. The Chronic IBS affects my daily life, as well as the difficulty sleeping and difficulty concentrating . It was difficult having doctors dismiss me for years, passing me along to others as they couldn’t figure out what was wrong with me. It just contributed to any anxiety that already existed . The countless MRIs, spinal injections and physical therapy have been both exhausting and expensive, as in some cases they weren’t covered by insurance.
I hate when I bend over and I get shooting pains in my back and getting to the loo by the time I get there I'm so out of breath I feel dizzy
Insomnia. And fatigue. They strike badly unexpectedly. Last night, I had no tea, coffee or other stimulants during the day. I took 2 trepilene, 2 L theanine, a Gabapentim and a Phenergan, hoping to catch up some sleep. At 2 am, I took 2 Valium and 2 Allergex and eventually fell asleep about 3am. I was awake at 6, but too tired to get up. I then unfortunately had to have coffee to get through the day. The other day, because I could not be groggy the next day, I only took a melatonin and a trepilene. I barely slept, then was so fatigued the next day I couldn't function anyway. But if you look at me, I look very healthy for 60, my hubby is the same age and most people think he is much older than me. It is very frustrating, a phantom condition. I used to love swimming and the sea, now I have to force myself to bath or shower. My temperature control is ridiculous, I can have sweat streaming down a side of me facing the sun, and goosepimples on the side facing away. Everything about this condition annoys my husband, from not being able to tolerate the sun (i travel in the car with a reflective shield over me) to not having the energy for things when I'm feeling like I've slammed into a brick wall. He thinks I'm depressed when I can't get up or lie down during the day. The pain and inflammation I've got fairly well controlled, and have been able to mostly drop the Tramadol and Arcoxia with a mainly whole food plant based diet. I've developed a strange new symptom lately - occasionally, I will feel as though I've taken methamphetamine, or 10 double espressos, its as if my blood is racing and I talk and move fast, can get through my chores quickly, but can't sit calmly or focus, I'm wondering if its perhaps panic attacks? I keep on forgetting to see what my heart rate is doing. Tonight I'm trying 2 Brazapam and an Ativan, I had a decaf coffee today, wish me luck!
One question I have is about gait. I always had a very graceful gait (I'd done dance training when I was younger and was also a runner), but in recent years I have observed myself on home security footage and now my gait is more of a waddle/lumbering gait even though I am a normal weight and quite active. Does this indicate fibromyalgia? Do you know anything that could help improve my gait? Could I also have these gait problems from CFS (rather than fibro)?
My most frustrating symptoms are malaise, bloating, brain fog, and poor aerobic conditioning. I am also frustrated because I live an extremely healthy lifestyle but am still less healthy than I would like to be. I have always put effort into eating a lot of fruits and vegetables, exercise, sauna, etc. ANYTHING for good health I have put the effort in. So it's frustrating to not feel anything close to 100%.
I wake up like I never slept. Drs treat us like it's all in our head.
I also suffer from this, it sucks
Me, too re sleep issues. Fibromyalgia/ME since 1991 (when a university professor working 16-20 hours/day AND thoroughly enjoying every minute of it before ME). Peripheral neuropathy also diagnosed in 2020.
Not all doctors.
@@mckenna9489
Same , it’s awful 😞
Me too
And don't you all just hate this statement: "You don't look sick!"???
10 minutes in the body of a fibro sufferer would devastate them.
Oh yes...
Yes, yes yes, especially from my horrible mother in law.
Another favourite ‘well, you were ok yesterday’
How about “maybe you’re just lazy”
@@lorannamoody7011 nobody has ever said this to me except myself. I feel like I'm lazy and my husband has to reassure me that I'm not.
The profound fatigue is no joke. I used to be a very active person and a night shift nurse. This latest flare has been so bad I’m exhausted and in pain from just holding my head up. Prayers for all of us.
I'm a night shift nurse as well, with FMS about 25 yrs. Been a nurse nearly 30 yrs now and it's getting harder and harder to function. Fibro ain't for sissies!! This is no joke, like u said.
I know how you feel! So hard and painful 😖 I was a very active Gymnast and made it almost to the top when I got so much pain in my legs that I could (sadly still) barley walk (2017). I was diagnosed with fibromyalgia 14 (2018). I just have gotten worse... but I believe that there is light in the end of the tunnel!! Next week I am going to the hospital to help my pain go less!
God bless you all!!
Love from Iceland 🇮🇸
Try vitamin B12 injections. They worked somewhat for me but after 2nd dose I reacted and can't have them anymore. There has been some longterm relief. B12 is now common usage for Fibromyalgia.
Crazy Kansan I hear you and feel the same 🙏
So you being a nurse, have you tried nerve meds for your fibro symptoms? It is a central nervous system disorder.🤷
I was diagnosed with fibromyalgia from head to toe in 1988. I was 37 then .. I have learned to live with this and I am now 72. The secret is to do exercises keep mobile no matter how you feel. This can be very hard but remember you do not die of fibromyalgia you die with it. Keep smiling you have a life to live. Make it enjoyable. Carole
Thank you i really enjoy your energy and enthusiasm. Some people however have different complicated issues like arthritis in your spine and feet. Its horrific. But i do understand your message and it does give hope. ✌🙏💗
I totally agree. You figure out a way to live with it. Moving is the secret weapon we all can use. I have dealt with this for over twenty years and had to figure this out myself because sadly there is no magic pill for this
@danuta very easy how some people say get up get going. Maybe her symptoms isn't as bad as yours. I was the most energetic person u could think of. The very people who told me that...asked where I got all that energy. Are the people that can't understand. Would I fake my pain and acne...really. after being one of the strongest woman known. I could pic any one up in one arm. At the age of 48 it just changed. I got pre-menopause but I think it's mixed with fibromyolgia. I get so much pain it has been since I was 48....I am now 55. Gotten worse. Everyone calling me an addict trying every pain killer I can find. Every week I got a new symptom. Just wen I am getting over one thing. Something else happens. This kinda makes sense wat I have. My friend suffers terribly with shingles her bones have twisted. Her shoulders gone forward. She must weigh 42kg. The pain this woman goes through. She drinks Hrt. Because if she leaves it.. she can't even move.
Have been living w fibromyalgia for about 30 years. I have pain , fatigue, stiffness and tingling all over my back arms legs. I combat this by swimming and taking strength and balance training classes. You have to keep moving. Fibromyalgia is worst when you don’t move. Be brave. Fight it.
Thank you for your lifting up... Hugs ☺️
My family's response when I told them that I had been diagnosed with fibromyalgia was,. "stop feeling sorry for yourself, there's people out there who are really sick and they don't complain about how they feel every day.."
When your family says this kind of thing, when you are letting them know that you're struggling to do some of the physical things that you used to do easily before, it really makes me wonder where I can turn to for emotional support, after all that's what family is supposed to give you isn't it.? 😢
my answer always is a smile and "fine thankyou"... no one really cares and doesn't want to hear.
You have to smile and bear it.
I have had it for 35 years from lymne disease.
But divert the mind with music and beauty around you.
Cold pool at the Y keeps me going. Helps pain and brain fog.
You need a new family
Hugs Hugs. This is my family as well. My husband thought it would be a good idea to get 3 more German Shepherds. Now I find myself apologizing to the dogs because I cannot care and play with them as they need😶. Can't even care for myself properly. Have to take a break and lay down after a shower.
They are supposed to, but most people are so self-absorbed that they can't find real compassion for anyone else. Most people dont have tv families, when it comes to their own family they are awful.
Other people's pain doesn't negate your pain or mine.
I"ve had this for over 30 yrs and it does get worse. I sleep very little, and it's a major job just to take a shower. You go through a lot of stages. It's very hard to lose the person you used to be. My pain is through the roof. Good video, Thank You!
I would love to analyze your blood work and diet!
@@chacha3209
You must not be a physician.
You are me.. I've been diagnosed for 15 years.. the shower thing, on the nose.. my depression is so out of control because my fatigue is so awful, I'm not living, I'm barely existing ya know... it's awful.
Same here 😢
@Mandy Wathen you are not alone. I also experience these symptoms among others. It's devastating at times. God bless you💛
I wish I could find a doctor that is educated in fibromyalgia.
moondancer2go yeah me to
Doctors are dummer than we are!My old doctor has retired but the new one doesn't seem to know what fibromyalgia is!He gives me medecine and shows me the door and I don't feel that he understands.So I make sure the prescriptions are for a twelve month period and I go see him once a year!
@@zeldagliches96 Me too!
Good luck. It is very difficult.
Me too...I feel alone...😑 I can see that my doctor doesn't know what to do... He just wants me to take the my tablets...as he thinks most of the pain is on my head....
I’m so sick of being tired. The guilt of not being able to function is weighing heavy on me. My back, hip and leg hurt so much from standing and walking-grocery store is terrible. I’m used to being physically fit but that’s off the table right now. The depression isn’t fun either. I pray for everyone touched by this disease
🙏🏻🌷🙏🏻
Exactly! The chronic fatigue alone is so disheartening, then layer on the pain, and life has lost it’s joy!
Thank you sweetie 😊and prayers for some relief to you .🙏
I understand ❤ the only thing that gets me through each day is Jesus. If it weren’t for Him, idk what I’d do. Life is very bitter, but He makes it sweet, too. Prayers 🙏 ❤
Totally agree. I work and come home exhausted. Sometimes, it is all I can do. I get so tired of it.
Thank you, Fibromyalgia sufferer.
Fibromyalgia has completely taken my life away from me . I have lost my identity my marriage my friends my business even family . It’s a lonely existence and chronically debilitating. I’ve had it all my life and now SLE Lupus. It’s by the grace of god I’m still alive but boy is it a struggle . . It’s a lonely lonely life
I feel you, boy do I feel you
The same . But meditation pray retreat helpe Me alot . Doing sipirtuell jeurny
Hopono prayer . Stress relief musik .
Join som healer Thierry Manny ön TH-cam. Dont gives upp mat be it is a messege to us to finns happenes in a differens way. I realy Chang event if take time . I Hoppe you pease and love
Very lonely : (
I’m sorry to hear that. I know how you feel. I think I’ve had fibromyalgia for years, and I know it has changed me, I just never put all the separate symptoms together and I’m a Nurse Practitioner! It’s been really hard because all the symptoms are so different on spectrums. I feel that the fatigue is the worst. Nobody understands in my family and friends and they think it’s all mental.
Yes I can completely understand. I'm not yet diagnosed, 30 years now, cervical spondylitis, spinal stenosis, and every Fibromyalgia indicator, skin sensitivity pain, all forms of.
Bowel, bladder, co- ordination, loss of strength, extreme exhaustion, poor and disturbed sleep the list is endless.
However, try to push for help, and have faith. X
My chronic fatigue is also awful for years now. Can”t make plans because I don’t know how will feel from day to day. My house has never been so unattended.
Jutta Hollar I am so with you, dear! My house!! My bedroom ....is just unbelievable!! I cannot put clothes away. .... everything is everywhere and I barely have a path to get to my bed!! I know that sounds just terrible! It IS TERRIBLE! Makes you not really even care to get up in the morning I can tell you that much. I sleep a lot!
Nan Branham Me too!! I used to put everything away but for the past 2 years just throw my clothes on my ottoman. Dig thru it for clothes that have now fallen to the floor where they're staying. Don't even care anymore.
I'm with you but I push myself to keep going
I'm the same it's no joke
I agree with you. When I tell people that I can't make plan for tomorrow I don't think they understand. It's stressful when you make plan and on the day you have to call to cancel because you can't make it. You become isolated because you are not able to social. You go to bed so exhausted and feeling sleepy but when you get in the bed you stay a wake until 5am with headache and when fall asleep you it's hard to wake up or have light sleeper where little noise wakes you up and you don't go back to sleep
I’m so lucky because I’ve got a brilliant doctor who LISTENS
Wow,someone, who actually knows the different symptoms. I’ve been dealing for over 30 years.
I am 76, and I have struggled with fibromyalgia since I was 50. At first it was manageable to a certain extent. Twenty years ago I lost my brother to cancer. The shock of his loss just did it to my body. I understand all that you have said. My day begins at noon and ends by five or six. It’s not that I was sleeping late. It’s that I was trying to get up! Well, you guys know the drill. My internist has been very supportive. I can’t say the same for my friends. The thing is, if I had been in a wheelchair all of these years, I would have weekly visitors who would sing my praises for being so strong in the face of adversity!!
I’m 71 and I’ve had fibromyalgia for six years. The last three years every week I probably stay in bed at least 1 to 3 days. I was told by one doctor that it could be the trauma that I experienced in my childhood. And that did make sense, but I don’t know what to do to not have these symptoms. I eat completely organic, I’m very careful about anything that goes to my body, but I don’t know what to do about it and I don’t know where to go and I just now ran into this website which I think I’ll do a lot more reading.
When I was still working. My late husband would have to come to the car and help me get into the house and get into bed. But, the person I am married to now probably wouldn't know if I died.
we, fibro suffers, are really a 'tuff' group of spirits, cause we do function and we do go on in spite of the suffereing that we can't describe and others do not understand, and we do look well....and we do spend effort helping others...today, i have just now heard about the vegas nerve in the crainial area and how fibromyalgia and whole body areas are affected by this...i have been needed to massage my scalp daily with essential oils, warming types: cinnamon, pepperment, etc. for a soothing effect....
@@TheLightbright01 so very sorry that you’re suffering alone. My fibromyalgia has lasted 50 years now and so many things make it unbearable. First, I don’t look sick; people don’t believe you can be in such pain without visable signs or a common disease such as cancer. Second; I now have sleep apnea which my doctors can use for excuse in refusing sleep and pain help. Third: my disease is definitely progressive with no HOPE of death any time soon. Therefore, I, like increasing thousands of chronic pain sufferers are agonizing over the prospect of suicide. I can’t bear the constant all body pain, the frightening nights of painful awakefullness and the “nervous wreck “ feelings without sleep. Each new day is a repeat of inhumane suffering with Kaiser here in California just saying “sorry, there’s nothing we can do.” It seems that only those with Covid receive attention and all else are kicked to the curb. If I take my life it will hurt my family and future generations. Breaks my heart. I don’t expect life to be without challenges and suffering but I have held on longer than I can bear. Death is on my mind daily. I a jealous when I hear of a death by accident or illness. Sad. No help. And I will not try therapy over a phone or with those things that cover our faces but do not stop something as small as a virus.
I do also believe fibromyalgia can be triggered by trauma of some sort I feel for any one with this condition it messes with your mental health big time
Fibromyalgia + C-PTSD= hell unless you can hide from the world. Thank you for this video I often feel very alone because people don’t understand what it’s like to try and function with these conditions .
Me too Tracy😞
You aren’t alone ❤
@@connieturvey3952 me 3 Connie 😞
Unfortunately, you aren't!
Oh yes...they say agoraphobia, I say I'm hibernating. 😏 but seriously, it's a vicious combination. 🌹
I have had this for decades. Some days I pray to finally "come home". I am so freaking tired and the pain never goes away. The brain fog is so embarrassing sometimes.
I'm with you also we suffer so much
@@ellenharvey5371 Yes!!! We really do suffer, i've had this over 25yrs.
I used to be an "on the go" person, Fibromyalgia has made me
feel lazy and worthless. I have wanted to go to "sleep" and "not
wake up" too many times.
I want to die too. Every day that's all I think about. This year I missed my Mother-In-Laws 93 birthday, our family vacation (I stayed home alone), Thanksgiving, my husband's birthday dinner and Christmas. I can hardly fully shower anymore, it's too painful and exhausting. I only leave my home for doctor appointments. None of my friends ask me to do things anymore because I've canceled plans so many times or I'm late or they're afraid I'll have a seizure (I'm also Epileptic). Yep, I'm done with this shit. Absolutely finished w/ no shame. I'm 56.
Nice information
I am so with you! I’ll meet you at home one day!
I had to go to the emergency room a few years ago and I had a male nurse who attended me. He was almost hostile to me and he kept asking me questions about the pain medication I take which are prescribed for me by a pain management doctor for another condition and he was talking to me as if I was an addict because I take a oxycodone rather than something less strong and when I explained to him that I have fibromyalgia and it's caused me to develop sensitivities to many things drugs included and oxycodone is the only opioid I can tolerate. His response was that fibromyalgia is not a real disease but just something that doctors call it when they don't know what's wrong with you. As a retired RN myself I couldn't believe that a healthcare professional would be that uninformed in this day and age. I just looked at him and told him that he needed to go back to school if he didn't know any better than that. I also asked for another nurse since I had no confidence in his ability to take care of me since he was so obviously uneducated about something that is now well known to be a very real disease.
I’m 81 years old I suffer with the fibromyalgia all my life. Like you, I’ve been told all kinds of funny crazy stuff. I finally decided to Lear to cope with it in my own way and dint even mention it to doctors anymore especially the constant muscle pains, the extreme fatigue, and the rest of all the symptoms the doctor mentions. It all happens when weather changes, too much physical exercises and out of no where. Since it’s only debilitating it doesn’t kill you I learned to live with the condition and here I am 81.
On better days when I have some energy. I try to catch up on my chores pushing myself, then for the next couple of days, I am so tired for exerting myself, I can't get out of bed. It's horrible.
I know exactly how that is. But try explaining that to people. It is very real, and it has changed my life forever. 🤗 Sending you a hug.
How did you get a diagnosis. I have symptoms but whenever I mention it to my dr the Pooh Pooh it. My legs won’t work like they used to sometimes I feel like they won’t lift up as I stumble. I get stabbing and burning pain in mostly my right leg but do suffer flare ups of sciatica. Sleep is crap. Wake up exhausted. Brain fog and loose track of conversations. I suffer high anxiety and depression and take meds for those. But they don’t feel enough.
Me too
@@pennylane5404 I was eventually referred to a rheumatologist. It took many appointments with several specialists to get a diagnosis. It was amazing that finally I was able to get the right meds to take the edge off. Like many people who have fms I struggle with many daily activities, just vacuuming 1 room can wipe me out. On days when I can't do housework I remind myself of a saying my mum used to tell me "the housework will still be there tomorrow, you may not". I know it sounds a bit defeatist but it's more about me giving myself permission to leave things alone and not feeling like I'm "giving in" to the fms. I've invested in a tens machine as an addition to my meds, feels like it's helping a bit but it may just be psychological, only time will tell. I'm not sure where you live but if your doctor won't refer you then I'd ask to meet with the practice manager or change doctors. I'm eternally grateful that I have an excellent doctor who can pick up on changes either in person or in a phone consult. I wish you all the luck with your medical journey and I hope that you can reach a diagnosis and get treatment soon x
@@pennylane5404
Get blood work ran for Epstein-Barr Virus, cytomegalovirus, echovirus, go on a yeast free diet (helps with fatigue, pain & fibro fog)✌❤🌏
I had to go 10 hours from home to be properly diagnosed. I cried when the doctors told me because I FINALLY FELT HEARD!😭
Same!
You could've diagnosed yourself if you were your own Doctor like I've been promoting for 40 years and guess what 50 years ago Janet Travell left humanity precise 34 part recipe daily behaviors restorative therapies you must do yourself when obeyed guarantee to eradicate all the hundred and 22 signs and symptoms of PTSD cured with megadoses of TLCs works perfectly miraculously precisely helping mother nature do her best while you get good nights of sleep wake up refreshed pain free mental clarity battle ready.
Same here
Yes, same.
I went to a rheumatologist and he told me I had fibromyalgia after he did a few things. He’s a well known doctor too in Washington state
So, so tired of being tired. This never ending circle of aches, pains, fog and sleeplessness. I’m 50 in two days, I’ve been tired since I was 15. The fun is always tainted.
Yup. If you dare have fun it’s bed for you for a week or more.
I'm in pain as I type this to you. We're all in this together. Stay strong and healthy hun!
Fun times ahead for me then 😖
I totally understand. My brain fog is really bad and frustrating, I have to speak really slowly to get the sentence out. The really bad part is that there are several times I have blank spots, meaning that I lose the word and image I am trying to say, and then boom it pops up. I have to say other words to get to the point. It makes me so angry and frustrated.
I'm 75 and have had severe fibromyalsia since I was in my teens. I was a super achiever until I was about 20 but it's been a steady spiral downward since then.I'm immensely strong willed to have survived continual physical he'll. The pain is unbelievable. The fatigue is crushing...and must I go on with the other symptoms? YET I have joy each moment my heart beats. WHY? I belong to Christ.
amen Amen AMEN
Amen
Hooray 🎉❤
Amen thank you for sharing this
!im 65 and also have fybromyalgia plus other .just had a full hip replacement, only 2nd day in with recovery, but getting through the days is knowing we are very precious to out lord,xxamen,,sending blessings 🙏
I don't suffer from fibromyalgia but I wanted to know what it was. My heart feels for everyone of you. This made me feel so sad reading the comments. Am a believer. 💗
Thank you Dear
♥️🙏😩 thank you
Thanks it means a lot.
Thank you!
Thank you for your compassion
I have been living with this for 46 years .Not easy.Prayers to everyone suffering from this.🙏💕
Prayers you mention, for 2 years I pray for my pains from fibromyalgia that kept me moving or not the pain was there. One night praying por healing a Bright light in my head sparkle, all my body move like in a shake for I was in bed. Immediately all the pain was gone 🙌 . This was 10 years ago and since then no pain!!
In my understanding is the nervous system. Because it was like a clear rest brain was again functioning.🙌
🙏
Bless you I know what you are going through I was a child when I first knew something was up
The level of dismissal, disbelief and lack of compassion by my people is enlightening and also, to be honest, just crushing to me inside. Never felt so alone in my whole life ... and I've been homeless before.
It's ignorance more then malice - but tough to deal with for sure - I think most of us feel like you do at some point during our journey - you hear people talk about that all the time in the recovery interviews: cfsunravelled.com/cfs-fibro-recovery-stories/
Same here, my own sister doesn't believe me, ...I quite frankly became tired of explaining my simptomes, nobody hears my crying for help 😒
Your not alone.
I in the same boat im worried i loose my job
Hate when people are like "well you look ok to me" when you try to tell them you don't feel well enough to go out or whatever. I've known people who have been berated for parking in handicap spaces because they "don't look sick" to some random stranger who can't just mind their own business.
The worst thing about Fibro is NOT the pain. Its having to constantly explain why I am too exhausted to want to do ANYTHING at all. To me, a successful day includes getting dressed, cooking, watering my plants and getting the mail.
Me too ,just taking a shower is sometimes a chore 😢
It really depends, for exemple for me it’s the pain cause it’s so bad that I often collapse even in the middle of the street due to the pain, no one experience the same symptoms and with the same intensity
That IS a successful day!!! I hear you!!
I was the same way till I started taking lyrica and it changed my life. I feel amazing n myself again of course with limitations n such still but I have less pain, mind blowing improvement in fatigue and fibro fog.
same here! i am using hemp oil which seems to help..
One symptom not mentioned in this video is itching. I itch from head to toe with very little relief. This itching is in addition to fatigue, joint pain, and poor sleep. This has been going on since about 2014 and as I approach my 80th birthday in about a month, I wonder if I will ever feel normal.
I know that I don't know you. But I can feel your pain I have fibromyalgia too. I wish I could be normal like everyone else too. I have to get off my pain medication before
I know that I don't know you. But I can feel your pain I have fibromyalgia too. I wish I could be normal like everyone else too. I have to get off my pain medication before
Me, too! The itching is unbearable. 18 years.
I had no idea I was not the only person with this itching that seems to be more noticeable as I crawl into bed at night. I just thought it was the soap I was using or from dry skin. As a sufferer of fibromyalgia for many years, it impacted my ability to work effectively as a Medical Lab Technologist. The noise, stress of working, the body pain, and as I've come to realize, the lighting in the Lab became unbearable, and I had leave my job and go on disability. I always hesitate to disclose my fibro diagnosis to medical staff, as I am always unsure of what their beliefs are when it comes to Fibro. But, we soldier on.
@@adalovelace7806 i have a lot of itching too but it could be my liver.......i would love to have 8 hours straight sleep!
There is also the reverse: doctors nearly always write off my symptoms as fibromyalgia. In fact, my cancer diagnosis was delayed by at least a year because my symptoms--which I did seek medical care for from more than one doctor--were never assessed, but were simply labeled as new-to-me fibromyalgia symptoms.
It's the medical community that needs to be educated about this, not fibro patients.
If you don't mind me asking, what kind of cancer did you have and what were your symptoms? I think I'm going to be pushed into the fibro corner soon but don't think that's whats happening.
YES!!!
I'm so sorry you went through that. :(
You are absolutely correct.
first, I am so sorry for your experience and my own has shown that is likely not uncommon in the least, though terrifying. My thoughts to you and you recovery.
But...Yes, Yes, Yes! I have been gaslit and dismissed more by medical"care" staff (from specialists on down the line) than any "layman" has ever displayed to the chronic conditions I suffer from. It is has been horrifying the way my symptoms are disregarded and untreated and my symptoms ignored.
For instance I have had night sweats for over a year with swollen lymph nodes, I ask, "is this the autoimmune conditions? Is this the fibro?". They order a blood test, it's normal, so I get no answer, no follow up and complete dismissal of these symptoms which I keep bringing up.
I am going so far as to move in hopes of seeking better care, this is killing me. I feel completely alone and really uneducated, my husband and I are trying to learn as much as we can on our own, it's been a crash course of "omg, that's why that has been happening!, thanks doc".
I have MS and I find everything is by the dr put down to that
Thank you so much, I’m a 53 year old male. I’ve been suffering for many years. I think I’m crazy and so alone with this awful thing. I was diagnosed along time ago never heard of it before that. I don’t want to live most the time, feeling like a week person. I pray a lot. Hearing this brings me to tears, I’m not crazy or alone. Thank you.
You’re not crazy or alone. Super validating. Hang in there, you really matter!
I do yoga and take Kratom for my pain, helps quite a bit....can be addictive.
🙏🏻🥰
As a man it's often a case of having insult added to injury - wrote about fibromyalgia in men some time ago: cfsunravelled.com/fibromyalgia-in-men-effects-beyond-the-symptoms/
So many mentioned support... I have some now but it's almost like too little too late.?? The support I have comes and goes along with apparently my believability! I have depressive bi-polar and the one person I have in my life will occasionally shoot me down saying that I don't have it! He claims all including fibro never existed before so in his all-knowing wisdom it is 'made-up' now.
I have lost so much of my life and now my body is totally worn out, my knees, hips, back and neck are so bad I can't walk straight and my strength is failing. I used to be strong and able to do so much I am 55 and feel 105.
I’m 71 and I’ve had fibromyalgia for six years that I know of, I was on medication for two of them, something called Neurontin, which worked a little bit. But you are not crazy and you aren’t alone, but it is hard to get support from people when from the outside we look fine.
If you ever need to talk to someone, I live in Denver Colorado and If any of you want to talk to someone that understands you can reach me at 310-405-5021.
Hello , I have a great niece she is 16 years old and has been diagnosed as having fibromyalgia. The NHS say as she is no longer a child then they will not treat her. She has been told that she cannot receive treatment for 2 years as she is not considered to be an adult either !!! How is this possible that they will leave a young girl in pain untreated because they say that she falls between being a child and an adult . Her mother is gobsmacked by this and so am I . I would welcome your opinion on this , have you come across such a situation in your experience. Do you have any advice please
I have been diagnosed with Fibromalgia about 5 years ago. It took decades for someone to actually give this condition a name. We don't look ill. We are tired and hurting... every day. Lord I wish I could have one night of good painless sleep. Memories of a painless day are fading. It is horrible to be tired because of pain, every day.
Having watched my wife go through this I can confirm how bad it can be. If particular the fatigue and brain fog. Memory retention is shocking. We were told it was brought on my the sudden death of our son. It’s been ter,rib,e watching her go from a fit and healthy lady to what she is now. Shadow of the woman I fell in love with. Heartbreaking.
So thankful for her that you love her still. My x hated that it stunted his life.
sorry MG about your wife. trama can make fibro worse, infact it can trigger it if you have it but not too severe. i was diagnosed in the 80's, my doctor then said to stay as active as possible and as fit as possible..as i did till about 14 years ago someone fell into me and broke 2 of my ribs. and then the fibro flared and has been a constant pain and other symptoms in my body since. they say it can go in remission, but so far no luck. i do find taking B vitamins helps to a degree, and staying away from sweets and artificial sweeteners, and ingredients i no longer use margarine, or eat a lot of packaged snacks due to the whatever they put in them. all it takes for me is to have that candy bar or slice of pie. much hugs to your wife. i wish her some comfort.
At least you care. Many men just get mean.
Thank you for being an understanding and sympathetic husband. My husband just doesn't get what I'm going through
My sincere condolences on the loss of your son. I have 2 and I just can't imagine the heartbreak. But, the most important thing for those of us with FM, is a good support system and just someone who loves us enough to really understand. You're a good husband. Bless you both.
I’m 30years in with Fibromyalgia and now ME. It’s true what you say, I get into many arguments with my husband and family because I won’t go to the doctors just to be told “it’s Fibromyalgia “. The guilt I have is horrendous because I can’t get out often. Family parties etc just fly by me. It gets to the stage where invitations are far and few between. The thing is different people have different symptoms, what helps one person doesn’t help another. Sometimes I just want to put a big sign on me I may look ok but my body is screaming! I pray that as time goes on someone somewhere will find a cure, till then I’m plodding on. God Bless all of you out there who are suffering and God Bless the family who are watching your decline because they are suffering too. Xx
Hi Patricia, sorry to hear you have been unwell so long. Look, given the nature of the condition , I don't' think we will see some magic panacea cure (there aren't a whole lot of cures out there for anything). However, people recover their health anyway, both partially and fully. I have been sharing how they do this in the recovery interviews for a decade now - check out some of the interviews! Also, check out some of the other resources on the cfsunravelled.com site, like the book - to learn how these recoveries happen so that you can personalise your own action plan.
Im that way now as well. I dont go anywhere but doctors visit. And after a trip into town i will sleep the next 2 days. I will have anxiety attacks the day before because i know how bad its going to hurt and how utterly useless i will be for days after. I still have teens at home. My doctor says the anxiety before leaving the house is akin to ptsd from the pain and situation. I have days i sleep 4 hours while the pain meds work...up 4 or 5 hours till the pain meds wear off then back to sleep for 4 or 5 hours. Its so bad my dr got me a home health nurse so that my b injections and blood work could be done at home. I have several other disorders as well. I have several drug allergies and the drugs for anxiety work the opposite on me. They cause extreme anxiety, intrusive thought, hallucinations and fear response. So i stay away from them. I have been to pain management after pain management clinc...always end up back on opiates. They are the only thing that settles the pain and anxiety..doesn't get rid of it just settles it for me to continue with life. Showers are impossible. Same temp water coming out of shower on place it feels like ice water another it feels scalding. And it hurts having it hit me...like stones hitting me. Then theres the chill afterwards that lasts hours..no getting warm. Which hurts and flares the pain to 9. I live at a 5 even on meds. The hope is to keep me out of the rafters. Many times i have went to rafters and have had iv meds to back it off. I also get infections...like feeling great and 5 hours later in an ambulance being wisked to the er. I once had a blood draw that was clean, 12 hours later i am in icu on 2 different antibiotics and my husband getting the "its up to her and God" speech. 5 times in 5 years and 8 in the last 12 years my family has heard the speech from "flash infections " except once with a reaction to the antibiotics....and once to my hemoglobin dropping to 3.3( yes you read that right). It was during the height of the lockdowns and they had to give me A- blood when im A+ they were calling the state dept or someplace like that to get blood from Canada for me. But luckily the found 2 matches in my area that donated and my body kicked back in. I have always been anemic and had b vitamin issues.
I use lidocaine gel, lidocaine/prilocaine cream, diclofenac and pressure points to deal with the odd sharp pains. I say its like someone has a voodoo doll of me just sticking pins, nails or railroad spikes in me. The arthritises are no help either. 3 months ago i ended up in the hospital because my kidney was so full of pus and the dr who drained it said it was thick as toothpaste. Had to have a stint put in an at home iv antibiotics after a week in hospital with massive antibiotics. I never hurt in my stomach. I hurt in my shoulder for days before. I thought i had mucked up my shoulder again...nope referred pain. I had even been to the doctor for it. But no blood test...now every time i go in for anything they will run a screen on me. Since where i hurt isnt going to tell me whats going on. Its so bad that when the urologist and my infectious disease doctor cam in i called her by her first name and she mine...the urologist said its not good or normal to be on a first name basis. She asks about my kids and me about her dogs.
I used to be an outgoing balls to the wall person. Never sick. Worked full time and went to high school and college while being married my senior year. Plus did debate and forensic and the school plays. I never slept more than 5 hours..couldn't. After my divorce work 60+ hours a week and did things with my kids. Then remarried had more kids did the whole from scratch cooking, canning , gardening and homeschooling. Never slowed down. Not even after my month in the hospital with the flesh eating bacteria. Came home with skin grafts healing and took one hydrocodone. I could deal with pain no problem. Then the fibro hit. I am totally a different person.
@@mordeys I finally put two and two together when I had a horrible case of sciatica last year. I realized that the lidocaine cream and gel was actually making my pain worse. I hope this is not happening to you. I enjoyed reading your experiences. This health condition is definitely a puzzle.
@mordeys, where do you live? What works for me I can't get cause everyone is trying to rid the world of opioid perceptions. That's why I was wondering where you live. Prescriptions.
I do understand everything you are saying. I have M.E.on top of that and pernicious anaemia. I have a wheelchair which I never used as I was determined to not use it. I had so many falls due to my spine I have arthritis there so falling seems to happen but I nearly died from last years fall when I split my skull open after a fall went unconscious then into shock I had 8 stitches but lost a lot of blood. I'm in the uk and I'm crying out for help but the pain of my spine is getting worse so I can't get outside without some help and my family just let me rot. I still try to do things for myself but there's only so much we can do. I ran a bath last week but I had no energy to get in and I had to pull the plug out! It's things like that. I watch summer pass into season after season dying to get out- dying to live but no one is there to help. There are many like us I still think we could be helped more. Please know that I know you are somewhere out there and I will pray for you and all our amazing Fibro Fighters! 🙏 ❤ 💐
I was diagnosed with fibromyalgia about 15 years ago. I thought it was only a muscle syndrome until i saw this list of things that you went over in the video. I am in awe..... you have TRULY answered SO MANY questions that i have had for a very long time. 😭 . I have so many of the symptoms that i wouldve never thought would be linked to my fibromyalgia. But i have overly fatigued and brain fogged every single day. I dont sleep well. I have restless leg syndrome, migraines, sweats, hair loss, IBS, sciatic nerve pain, but i also have disc degenerative disease so that could be part of that. Im only 49 and my vision is blurring. And yes, ALOT of places on my body, if you touch, are EXTREMELY painful. Sounds, loud TV, children, etc. Im more sensitive than I used to be. I wouldnt wish this misery on anyone . 😭😭
♥️&🙏 I know :)
I didn't know sweating could be a symptom of fibro! I sweat profusely and am years from menopause and noone can explain my sweating. I have poor sleep, joint pain, and sciatica. I am wondering if I have it or something similar?
EXACTLY SAME- situation…severity.. symptoms.. sciatica & sadness of ALL of this. May you, all of us find much healing and more comfort in each other’s knowledge and empathy. ❤️🩹☮️✨
Same here and I'm only 34 years old. I feel like I'm 90. It's ridiculous. I just want energy and to be able to do fun things.
My mother also has degenerative disc disease and fibro. She struggled all our lives to give us the best life she could manage, and now that I'm also developing symptoms on top of being autistic, I see now how hard the struggle to maintain some semblance of a normal life really is. You should be proud of yourself for making it this far despite it all.
Im 55 got told at 15 it was all in my head and heres amytriptiline.. 2 years ago saw a locum doctor who listened and said sounds like fibro to me. For the first time in years i felt heard no longer invisible. To all suffering i see you i hear you ❤ from scotland x
It took me 2 hours from waking up,to showering,to get down the staircase and get to the kitchen. Im nearly 60 and cried for my mother. People say,oh bring the dog for a walk,get some fresh air into you,you'll be fine. What am i to do when i cant hold her lead or she pulls on it and my arm screams in agony. Its bloody awful,so dont take our "good days" for granted.
I feel for you it's such a overwhelming condition to live with..CBD oil is so good for the pain. I was prescriped many pain killers..which I won't take I replaced them with cannabis oil..my pain levels and symptoms have changed remarkably.. I have abit of a life now... blessing from me to you.. keep strong...
@@madambutterfly4352 do u experience nausea ingesting cbd oil?
It's a chore to stand and shower! I'm so depressed...I hate being unproductive. I don't know what to do. My daughter is only 5
Me too, I am so sorry 💜 I want my MOM ❣
@@ShaniOnSinai I'm so sorry😔
I have had this invisible disease for almost 30 years and do get tired of being looked at sideways when I feel ok one minute and terrible the next. Thank you
I understand. I've dealt with fibromyalgia for over 50 years. I wasn't diagnosed until I was in my sixties. I'm 75 now and my Dr understands why I need mild pain meds. It's true about trying to make plans and then your body says, "not today!" I don't look sick, but few people in my life understand how tough some days are for me. I do the best I can every day. 😊
I have had fibromyalgia for 25 years. I have been taking amitriptyline for about 20 years and It has been a life changer. I don’t get as many flare up as I used to, and obviously stress adds to it. I hope this helps.
Its invisible so nobody understands
I have 6 auto ammune deseses.30years ago I only had cronic skin problem.got put on syclasporin then I got crone's deseas.got part of my bowl removed.steroids and morphen.then two bone deseases ousteperosis.then framalga.. when lockdown happened I got a really bad flu.. I've had pluracy before,but doctor said to stop my meds as I had pain in my lung's..that was one half year's ago and not been on meds since.i have no illness no crone's no pain nothing..I Will never take Meds again..and I will never take a virus test or the shot.i lost 30 year's of my Life in cronic pain and suffering like broken bones.noe I feel free from poison..and take holy communion and pray for the whole world..amen,🙏❤️🙏
Ann Elliott Thankyou so much for sharing! Glory be to God! This helps me to remember that God is in charge. In Christ by Mary, from Bernadette.xxx
I had heard that having fibro is like having the flu every day of your life. Sometimes it's like that, but other times I'm so wiped out that I couldn't possibly identify anyone illness. What I most appreciated about this video was the reassurance that regardless of how people - - my friends and my own family - - - regard me and my symptoms, they are real (the symptoms, that is). Thank you for providing this.
That's how it feels for me. I spent 20 years taking cold medicines almost year round and thinking I was just sick all of the time!
Carla,
I see you! I believe you!
You are not alone.
It is very difficult for people who don't have the condition to really "get it".
It doesn't go over very well when someone asks you "How are you today?" And we want to say, "Well, my mitochondria isnt processing very well today". That would produce a strange look of disbelief and confusion. But it's true! Every cell in your body is messed up and not producing energy effectively, but it's not easily observable by the other person.
We really need a test that they can see... and a famous person to champion the disease to give it visibility. The problem is that people with moderate to severe ME/CFS don't usually become famous because there stuck at home, exhausted and bedridden.
There's a long way to go.
My best to you, friend.
YES!!!
😢😢😊❤
That's what I tell everyone it is like having the flu all the time.
I relate to most of these comments. And what bothers me the most is when we are not supported by our loved ones. I’ve learned to manage & live with the pain, mostly, but the pain my heart, mind & soul feel from being expected to do things I am physically not capable of & being demeaned for it is what is hardest for me. Especially because these people KNOW I am a giving, caring person because I have helped them so much in the past. Now that I need help tho they seem confused. I am such a doer that it’s very hard for me to sit on the sidelines & not be able to help save everyone like I always have. Ironically, these people that are giving me a hard time are also some of the people that caused the overwhelming stress that caused the fibromyalgia in the first place. Anyway, the emotional and mental strain is what’s the hardest most of the time for me. Thanks for the video & forum to express ourselves!
I've gotten to the point where I dont want people to touch me because it hurts. Clothing hurts. The cold & extremely hot kills me. So tired 24/7 and the sugar cravings you get from having fibromyalgia are nuts.
I'm so tired of doctors not being educated in fibromyalgia. Being treated like an idiot by doctors.
I educate myself on fibromyalgia it's sad when you know more about it then doctors do.
Join fibromyalgia support groups this helps you and adds to education for yourself.
I've been denied my pain meds because a doctor told me at a pain management appointment I went to that pain pills dont help.
I advised him yes they do and you have absolutely no clue what your talking about.
I've learned to watch what I eat and try to stay away from stress, meditation, and honor myself on bad days and good days.
Praying for everyone out there fighting this fibromyalgia battle 🙏
Vicki C by watching what you eat do you mean you are on a certain diet? I have heard good things about paleo and about fosmaps- I think both of them are elimination diets that you reintroduce foods, find what’s bad for you and tailor the diet to your body.
@@abbzeh137 yes cutout all sugars carbs only eat 2 to 8 ounces of meat. High veggie diet. It really helps
Can you recommend any support groups?
Ty n I'm right there with you
@@janetscofield7740 of you are on FB at all I suggest typing it in and start joining groups. You'll find what groups work for you or not. If your looking for a group in your city. I suggest looking at fibromyalgia groups in your city that your from.
I'm not on FB anymore otherwise I could give you a list of names of groups
Sciatica is my most aggravating symptom besides the pain I have all over. I have had Fibro for 18 years now, and I believe mine worsened even though they say that's not true. I have many things you mentioned, like the sensitivity to touch. The brain fog, pain all over, not enough sleep even though you sleep it's not deep sleep. It's truly horrible to live with, and I don't think anyone would lie and say they have such syndrome or disease. Nobody will ever want this disease. No way. 😔
Yes you right I have had fibro,and CFS,and sciatica for 65,years its hell!!
It does get worse or can as we get older. Anyone who says differently has no clue what they are talking about.
@@MomeGnome how about gluten free oats?? Any issues ?? Thxx
4000 years ago Hippocrates left humanity females precise 34 part recipe to treatments behaviors therapies mitigate eradicate cure #fibromyalgiasciatica bone-on-bone chronic pain immune deficiencies mental health spiritual health psychological health chronic fatigue PTSD deadliest to females 10 to 1 male lickety-split no failures as long as you follow the recipe!
@@MomeGnome I’m
Was diagnosed eventually with fibromyalgia I am in so much pain and tiredness I just want to lie in bed all day it doesn’t help having anxiety and depression also crushed and slipped discs and arthritis in my spine but I do try to get ready but most days I end up in my nightclothes all day it’s a terrible illness and I say prayers for all of us who suffers God bless
I have the same. Arthritis on my spine, knees and serious bursitis and degenerative disk disease and degenerative joint disease. That with fibromyalgia is almost to much to bare some days.
My wife is the same. She has all of what you just described!
All of what you said and more. Feels like a neverending punishment.
BE WELL GODBLESS YOU TOO✝️✝️✝️✝️✝️
I totally understand, I also get tired of hearing go out and get some exercise you'll sleep better and feel ,😖😖😖😖
I've had ME/Fibromyalgia for 30yrs and 1month now. I am constantly in chronic pain, have severe tinnitus, unable to sleep etc etc. Absolutely sick of it! 😢
Same
Also I don't know about others but it got sooo much worse after having covid in 2020.
@@jenniferg7713
It might have also gotten worse without covid. People's health tends to get worse, especially with stress.
I have developed Tinnitus (Ringing in the ears) do you think Fibro has caused this??? Been looking for answers and I'm glad I saw this comment. I blamed side effects of medication for Tinnitus and blame myself for feeling tired, exhausted, irritable all the time. It's hard to accept my health issues and I blame myself and say it must have been something I did... But I have been praying to God for wisdom and understanding and God knows all and he is my great physician.
🙏 Prayers for all who suffer
Same here
I’ve noticed that most illnesses that I get are instantly blamed on my fibromyalgia. It’s very annoying how some people don’t believe it’s a thing. Thanks again for your video
It's ridiculous - I have been thinking about making a video about this, so look out for that.
Fibromyalgia is real alright!!!!! I manage mine by staying clear of all white shaded food group--- no white spuds-- pasta--- sugar---flour---salt--- it suppresses yr immune system and also can flare up yr fibromyalgie---- eat fisg-- nuts--- fruit and vegetables and eggs---- I went gluten free and that helps also--- I make my own gluten free cakes--- stay clear of citrus -- 🍋 lemons can be a culprit also--- what we eat is who we are--- GOOD LUCK GIVE IT AGO AND FEEL THE BENIFITS---
Dybeates--- ibs---- fibromyalgia---- weak auto immune system --- I was told they all stem frm each other --- I have all of them---
@CFS Unravelled they blame everything on us having fibro.
My Doctor said that amongst my other illnesses, there is something else wrong but well don't know what....
@@quinnitaj4653 oh yeah, It’s a thing, but I don’t want to respond to “What hurts?” anymore. Everything hurts! The best way to explain it is that it feels like my blood is on fire. That’s all I can think of. Who can relate to that?
My fibromyalgia was caused by a trauma. I found myself finishing your sentences before you did. Very well explained. But there needs to be more acceptance of causes too, and that trauma can play a big part.
Yes, after decades I've learned that complex trauma, complex ptsd and fibro are no coincidence. The pain, physical, mental, emotional and spiritual...I call it a pain soak.
I feel my health issues fibromyalgia being one of them was triggered by coming home from work and finding my husband deceased. He had beginnings of dementia, and other health issues for a year and getting weaker. From that day I have seen my health decline. I have anxiety, sensitivity to light and noise. Migraines, Hashimoto Thyroiditis, pernicious anemia, and fibromyalgia. I am in pain everyday. Fibromyalgia is real.
I feel for you because my father had fibromyalgia .
Emotional pain eventually manifests into physical pain
@@mh.1568I'm sorry that happened to you. That has to be so painful.
I become so fatigued that even strolling through no more than 3 stores with my husband wipes me out. He does everything for me and can spot a flare immediately. My heart aches for women who have a husband that doesn't care or won't take the time to understand. How I wish that I could sleep all night. Very often I wake myself up grunting in pain. It encompasses my entire body. 💔💜
You have a very sensitive husband with your illness. Mine not so. Doesn't believe I have that problem. Calls me names and requires me to do more when so tired. I now have diabetes also with heart problem High blood pressure thyroid and more. Oh well. I'm sure many of us have problems and illness.
@@pjmjdmurdach4792 I’m hypothyroid, I have fibromyalgia and IBS, but my symptoms have diminished over time. Stay away from white bread and sugar they are your worst enemy…alcohol doesn’t help either. I’ve been diagnosed with IC also…I think it’s worse than fibro. So now I can’t have any caffeine, or sodas or citrus drinks. I believe it’s all environmental…God did not intend for us to have so many man made chemicals in our water, food, and all around us really…I’m sorry you don’t have someone to lean on…I will pray for you!!
It is terrible that doctors do not care to treat the pain away from you when it is possible with modern medicines to take it all away and reset the system.
@@Warrior4Him
I came across some info about CRPS or RSD or Causalgia/allodynia and how the pain spreads in the body. The pain mechanism seems to be the same in the spine and in the spreading way and it is not in the head but in the spine. The nerve irritation can be for example a trapped nerve, nerve damage or a chemical or continuous electrical irritation, which makes the body oversensitive especially the skin. It helps for some people to get away from big cities and the sources of certain molds, which usually starts it all. Then chemicals, wood, glued new furnitures with holes, ink paper and even electric fields (some people get shocks from TENS (pain treatment device) after several days of its usage without having a break) can be too much.
It has gotten better for some, who avoid all the sources of stress to the body whether that is the lack of sleep, scents, certain chemicals in the air and skin - natural or manmade.
ONLY the medicine, which works for central nervous system seems to work like fast opiates and brain medicines except antipsychotics, from which I heard make the nerve pain worse. Acupuncture, tricyclines and gabapentine has helped many.
@@Warrior4Him What do you think? There was also a document in Netflix from a genetic metabolism problem called CPT2 disease, carnitine palmitotransferase type 2.
I’m so tired of being exhausted
Me to . I'm so exhausted everyday all day.
The fatigue is truly the worst symptom for me, along with the brain fog😔
Can't think under stress. My mind is confused and I don't remember things. I was forgetting to put soap in washing machine for months when I first got diagnosed. Funny I was remembering fabric softener. Couldn't figure out why clothes weren't getting clean then one day I caught myself
I feel the same. Fatigue, brain fog, unable to relax, feel tired, joint pain, swelling of my body, hands and feet. If I sit too long I can hardly get on my feet from the pain in my legs and lower back. My neck is sore and shoulders as well. I react to foods. Sometimes I feel that I'm being pricked with needles in my feet and other parts. Or stabbed on my back. The inside organs are affected as well. I can never stay still because I feel itchy, tickled everywhere. Sensitive even to fabric rubbing my body. Loud noises bother me and more. However, I say to the Lord "all for your glory, for you my Jesus" because He suffered more than I could ever in this life.
My friend I feel for you. May the Lord strengthen you and give you great faith to withstand any sufferings. Life is short compared to eternity.🙏
That and having to pee all the damn time😶
Minister pain and not sleeping
Trying to explain this to people is so difficult
And always always being tired. And being looked at and treated as a "drug seeker" it was horrible...
rita Daniel I can relate to you Rita. I got very hurt when my GP called me “crazy” I felt depressed at that point not before but he has already put me on ante depression meds which I felt was not needed at all. Mine is a big story, no time to go on about it. But please know you are not alone in this horrible journey.
Tamil Ruzaika I am on Cymbalta, which is an depressant, but also prescribed for fibromyalgia pain.
I live in Northern Illinois. I had a hip replacement back in 2007 and it went bad, would go out on me while I was walking, etc.! after 11 months. I went in to my doctor. He took x-rays. He said the hip was “perfect” and that I was there “looking for drugs“. A doctor at the University of Iowa did my revision surgery on that hip. The ball joint had been loose, which does not show up on x-rays!! It was a 2 1/2 hour drive for us, but so well worth it! They treat you there like you’re human!!!
I was accused of displaying "attention - seeking behaviors", and my GP screamed at me that he "believed I was sick.. SICK IN THE HEAD!!!" And I gave him an earful before storming out of his office. Now, I'm truly afraid to go to the doctor.
It so sad 😞 that people treat us this way and I truly understand how you feel 🤦♀️😢I’m so sorry
Yes. My name is Tina. My whole family thought I was a hypochondriac until I was diagnosed in 2010 just 6 months after my mom died of accidental overdose from the pain caused by fibromyalgia. I have often said the pain is like having the "flu on crack" x 365 days per year. It's absolutely horrible. And I never get to sleep until my body just gives out. It's terrible. God bless you all. Thansk for this video.
Flu on crack was a perfect discrimination ever.❤❤ Heads on over drive in a body that is stuck in netural. 😊
LOL rolling on the floor and everything else that comes when you do not spell check I did not mean discrimination I meant description this is why you don't reply on Ambien oh my goodness.
When I was diagnosed it was a relief, was thought to be a hypochondriac for a very long time as well.
Same here, I feel achy all the time. On top of having Fibromyalgia, I also have RSD Reflex Sympathetic Dystrophy it is painful and having both is awful.
So sorry for your loss.
My cousin has fibromyalgia and tried going gluten-free, which actually helped with some of the pain and fibro fog. Going gluten-free, for whatever reason, does seem to help many fibro sufferers, so that's something to consider trying.
Also, having a weighted blanket seems to help with her sleep problems.
The struggle is real, I know. Hugs and purple butterflies to all who suffer.
Funny how we all seem to suffer differently. I cannot have weight on me so I use the electric blanket instead. Love to your sister from a fellow sufferer and thank you for being there for her.
I'm glad that worked for them. Gluten free didn't help and a weighted blanket would cause me more pain.
I've most of the symtoms that's horrible.the most that bothers me is my skin feels like it's on fire n in the shower the water feels like shattered glass hitting me.I pray some day they find a cure or something to relieve the deliberate pain.thank you for this video
That’s sweet, thank you! ❤
Unless a person has fibromyalgia they have no idea what we go through. 😢
I also forgot to mention how many times people have said to me, "You sure don't look sick."
I’ve heard that too ...have to bite my tongue not to say , you don’t look like an insensitive idiot
So true!! And people not believing that hugs hurt!
I know right?
I always respond with "and you don't look stupid... aren't looks deceiving?"
Or "You can’t hurt THAT bad!"
Or the pharmacy looks at you like a drug addict and make you feel "guilty" for being on opiates!!
Thank you for this! Fibromyalgia is demoralizing. I especially like you you mentioned the fact that we chase down symptoms with no answers until we just give up and go crawl under a rock somewhere. What makes me mad are acquaintances who say "I get it" when they absolutely do NOT get it. They have not so much as listened to a video or read an article. They don't understand why some days I feel that I have the bandwidth to function well, and other days I fight to get out of bed. Some days I start out thinking I can do things and then crash hard. When they see me, I seem "fine" so they demand commitments of me when I can't make them. It's so frustrating you just want to scream sometimes. No wonder depression and anxiety often accompany fibro!
I’m right there with you.
I'm right there with you, Vickie Richter and many many others also...
I've had it for about 15 years and got a confirmed diagnoses after 100's of suppositions! The fatigue- I liken it to a hoover being put to the bottom of your feet and sucking the energy out of your body. It's affected my spine now as well and I can't walk very well and I live alone. My family show little interest and even less care. So it's hard to have a conversation about how I feel when it's clear it's a taboo subject for them. I wouldn't wish this illness on my worst enemy * if I had any which I don't * however I'm still positive and take each day as it comes. I find my spiritual beliefs helps. Sending love to all fibro fighters out there! ❤
Thanks LadyAnna. I'm pretty much in same position , I fight every month for pain medications with no family support. Medicare and Medicaid both have free to you in NV State , maybe your State also that will pay a caregiver to come help and visit in home several times a week. Some will do lite house work, like cleaning , cooking on their own while visiting , others will so some grocery shopping, cooking, help getting up, dressing. And they just get paid to come sit and visit but have been know to do other extra things around house and take you to doctor appointments . States pay into these programs from Federal funds. They will also pay family member that comes or lives with you on regular bases. Human Resources Dept.. Try talk to them for help. May be worth a try as in younger age and older people these symptoms are extremely debilitating at times where its hard just to get out of bed and walk. They also pay for walkers, elec chair ,,etc when doctor prescribe them but you have to ask doctor to order it. Best Luck..Vonnie in Vegas
Look into Psoriatic Arthritis. I have Fibro too. The back pain is very much a Psoriatic Arthritis issue.
Wonderful analogy about the Hoover! The fatigue is undescribable and so is the depression. I can't walk very well anymore, my feet & legs are like wet noodles. At 60 years of age I'm giving a wheelchair a lot of thought. I certainly can relate to your exhaustion its horrible n my family believes I'm lazy or "put on" these symptoms.,😖. It's all very frustrating!
@@donnalowe5791 I know it's the most cruel misunderstood illness. If anyone ever asks how you are say " From the neck up I'm fine!" That excludes the rest of you which is not fine. I was given a wheelchair years ago when I was still able to walk they said " you'll need it" I don't use it as I have no one to push me and if they did it would be downhill!! I'm thinking of getting one of those smart mobility scooters. I live here in the uk where care is abysmal. Because you look ok people think you are ok- well from the neck up most of us are fine! I hope and wish for you all the best. I will remember all you fibro warriors here in my prayers. Stay strong! ❤ 🏴 ❤
@@westwinds6034 Thank you for your lovely reply. I live here in the uk where care is abysmal. Its a lonely cruel misunderstood illness and we are real warriors if you ask me. My family don't understand either or care to understand. There's nothing we can do except carry on as best we can. Take one day at a time, tiny steps we cannot do more than that. I'm thinking of getting one of those smart mobility scooters as I never get out. I don't like the thought of them but I'm a prisoner in my own home! Just stay as positive as you can I know it difficult, not easy at all. I will remember you in my prayers as well. ❤
This video brought me to tears. Just hearing someone finally agree with what I've told my doctors for the last 20yrs. Chronic illness and pain are not make believe. Getting quality care to help you seems to be. Thank you for making this video.
I agree, I've got so many of these symptoms and get so depressed bc ppl(mostly family) say when aren't you sick,like I want to feel like this. Have pain a lot of time severe almost daily and God forbid anyone gives you anything, haven't slept more than 3hrs straight in yrs. Part of the video that got to me the most was the feeling of sunburn when touched,it comes and goes and it's in different areas, Dr had no clue, basically thought I was nuts!🤯
THANK YOU!! You’re the only person who has talked about the “sunburn” pain. People think I’m nuts when I describe it.
I get it too and it's horrible
That sunburn comparison is right on point. As a redhead, I have had enough actual sunburns to compare the skin sensation to.
You aren't alone!
I get it too. I had a great rheumatologist who wasnt satisfied with the fibro diagnosis & kept digging & doing more tests. He found I had mast cell disfunction/dysregulation. Apparently this is not uncommon in people with pain disorders (migraines which I also have) it is very common. Over production of mast cells can cause a lot of GI, skin & allergy symptoms that many fibro patients have as well neurological & joint pain. The sunburn feeling is most likely vasodilation possibly caused by release of mast cells.
I have extreme burning in my thighs and arms. It’s so painful.
I wish I could change bodies with my doctor for five minutes. If they had to go through what we do they wouldn't make it.
and maybe take it more seriously and school themselves about it.
I'm a doctor with fibromyalgia. None of my colleagues take it seriously.
Amen!
I wish that every time I see my Dr. I'd like to see how much he believes "it's all in his head" if he had to live it for an hour.
Ima quigmire I always say I wish who ever says that to me could live in my body for a day on a good day, then let them try it out for a day on a bad day.
I wish every doctor was familiarized with Fibromyalgia. It's more wide spread than anyone knows!
Very true. I wished ppl would get educated on it
Cus of toxic GMO in food and pills and vaccine and water ....ect
They are, they just ignore it because they don't understand. Then it's easier to ignore or say 'it's between your ears'. Imagine a doctor has to say 'I don't understand but you're sick'. Many doctors (luckily not mine) won't do that, they're too arrogant for that.
It's linked to Narcissism pathology and CPTSD, but medecines as science devides things into compartments and so miss to make the right connections to understand how to treat it!!!
I just wish more Drs believed it is real. I think most of them still think it is just a catch all for hypochondriacs.
I have had this for decades, from soon after a complicated pregnancy and delivery. Within a couple of years there were days I was unable to get out of bed the pain was so bad. When the pain got somewhat better I stiI ll had to deal with the chronic fatigue and bowel symptoms; very hard to hold down a job with those.
I am now 65 and still have most of the symptoms but less often and less severe, only now have severe arthritis thrown into the mix. Damn.
I've learned so much more in this 10 minute video than I have the past 15years going to Dr's and dealing with fibromyalgia. Thank you so much!
I agree it’s a lonely disease as no one gets it.
Me too.
This has to be one of the saddest comments I've ever seen on TH-cam. I'm so sorry its been so hard for you. I juat found out I have fibromyalgia recently coupled with MTHFR gene. Still learning about everything, thought the way I felt was just normal for who knows how long. I thought it was just a part of getting older and im 31 haha
I only clicked on this because lady gaga has this and I wanted to learn more about it. But seeing how many people suffer with fibromyalgia is very eye opening. I hope everyone can get better.
yes no Thank you so much, but for us severe sufferers like myself, it was upsetting! It’s taken Lady Gaga to get ill for it to become more known & in the news............Unfortunately this doesn’t help us fibromyalgia warriors, what helps is kind people like you taking a interest, thank you & gentle hugs 🤗 x
I've heard that Morgan Freeman is also a sufferer.
The thing about celebrities having it is that they can afford to see doctor after doctor and get the help they need.
The rest of us can't.
@@pjaypender1009 There is no help or relief for people who suffer with Fibro😢
@@pjaypender1009 I can, we have healthcare here, but it's no use. They don't know what causes it. Healthcare or not, there's no answer. Yet.
Thanks for presenting the symptoms. I was diagnosed with Lupus in 2008 and then Fibromyalgia in 2010. I don't sleep well, skin feels bruised all the time and am totally fatigued all the time. People need to know that we are not seeking attention. It's real.
wow yes, "my skin feels bruised" that's exactly the expression, totally!
I was recently diagnosed with fibromyalgia, so I wasn't sure of all the symptoms. But thanks to this I understand my diagnosis so much more. All the pain, fatigue, migraines and bowel issues...
I sometimes also get very dizzy and faint, normally accompanied with a sensation like I'm dreaming - like I'm not quite inside my body. Does anyone else get this?
i do, it's all very frightening and debilitating.
Yes, and no one gets it. I am tired and sick and sick and tired of people having a negative reaction to my “complaints 9:42 .” This hurts almost as much as the physical pain.
Pain chock according to my neurologist. Look at anti- inflammatory supplements and Bach flowers rescue remedy to start figuring out what you need.
Got the same symptoms but no diagnosis yet!
Yes. I have had that sensation. Like a slow motion fade to black faint and yes, separate from my body. Then i faint.
I can still hear, but can't move a muscle or open my eyes. It's frightening. It can last 10 minutes or several hours.
Good luck. I have no suggestions other than get as much rest as possible. Start a food log, just in case some foods flare up your symptoms.
Heat helps me with the pain.
Finally someone the understand how a person feels!
Thank you for this informative video. I have had fibromyalgia for 32 years. Having this debilitating disease is hard enough. Dealing with people's ignorance, judgement, and denial of this very real condition makes things so much more difficult.
My symptoms are ALL you mentioned. Diagnosed in 2014. I always feel like my life energy has drained out of me. Pain from touch, muscle pain, brain that feels like chemo brain, hair loss, inability to sleep more than 2 hours at a time, extreme fatigue etc. When I finally got a diagnosis, I was relieved that I really wasn't crazy because docs kept saying it was all in my head.
I found a doctor who actually treated me for fibro. He has retired, so I am screwed. I took Ultram, Soma for pain and Doxepin and Ambien 5mg for sleep. It helped. If I can sleep 6-7 hrs I feel like I can face the day better. I am being shipped off to a pain control doctor. New rules for controlled substances. I know I am going to be treated like a criminal. Not looking forward to it.
I have a very great doctor who understands. I have to take OxyContin for my pain. If used correctly, this pain medication really, really works well.
Alot of Drs still think it's not real.
I found marijuana helps the most.
I went to the ER with a panic attack one time...thought I was having a heart attack! The female attending doctor took my symptoms and my vitals and got really close to my face when she told me...ITS ALL IN YOUR HEAD. I looked at her as closely as I could lying downn on the bed and said, NO, ITS NOT ALL IN MY HEAD, ITS IN MY WHOLE BODY!!! That was like 2000...I wonder if there is anymore positive info out there for those of us that suffer with it???
@@csc8697 Some wine for me, at night of course.....
This condition destroy people's lives 😭💔💔💔 it's so hard to keep going 🤷🤦🤦🤦🤦
LIFE 🤦🤦🤦
I totally agree with you Miriam. It does destroy lives. It is very hard to keep going when all you see is more pain etc. Gentle hugs, xx
It really is.
Exactly!
I hear ya I wish I new one person who has this so we could talk
I've had this for many years but didn't get diagnosed until February 2020, my family don't understand and get so frustrated with me for being so tired all the time I'm called lazy and they blame a lot of my chronic fatigue on my medication, today I'm going to make all my family watch this TH-cam video, and thank you so much for making this video on behalf of myself and everyone else who suffers from fibromyalgia because it's so hard explaining how I feel and what I'm going through my son rolls his eyes every time I mention its because or it is a symptom of fibromyalgia 😢❤
I'm 66 years old. I can recall having many of these symptoms since my early 20s. No one else in my family had them. And because I was active my symptoms were considered 'no big deal'. I first began to wonder about my problems when I saw an article in a newspaper about a doctor in Sweden, I think, who discovered and named the disorder Fibromyalgia because his wife went from being 'vibrant' to being bed ridden. But I 'soldiered on' because I was young. Eventually, I was told I was lazy. Then when I started having panic attacks, I was told I was depressed. I actually asked the doctors, 'Depressed about what? I don't have anything to be depressed about.' And I was told I was born with it because of a chemical imbalance. So, I took antidepressants for many years. (Then I had to deal with those side effects.) The Fibro symptoms, very slowly, continued to get worse. Then, in 1991 I was rear ended by a vehicle at a stop light. My neck was broken. Believe it or not, I eventually recovered from that. BUT, by 1994, my fibromyalgia symptoms hit me like a freight train. The doctors told me my symptoms were due to my job requirements. Then I began being told, 'you're not getting any younger!' When I started researching my symptoms, I read an article that stated 'a trauma can activate autoimmune disorders.' I've never been actually diagnosed with anything. I believe I have Fibro, CFS, and Sjogren's Symdrome. I haven't been able to find a doctor who would conduct the correct tests. The only test performed was a rheumatoid blood work. And both times, I was told there is nothing wrong with me. My family doesn't understand why I hate going to doctors. And no one that I know understands the brain fog. I believe they all think I've just become stupid. 25 years ago, I stopped eating all sugar, that means all sweets not just the white stuff! Then I stopped eating all meats. It's made a huge difference in my life. It hasn't cured me, and I continue to develop more symptoms as time goes by, but no sweets nor meats has made a difference. And, yes, it was difficult to stop! But trust me when I tell you, it makes a difference. And, yes, we're all different. My best advice to everyone... research, research, research. When I started researching, there were no household computers. 😊 Do all that you can do for yourself. Don't just lay down and die, even though you may feel like it some days!! In the midst of all of this, I've had a heart attack, a TIA, and I've lost all of my teeth. I'm only 66 years old. I take no medicine any longer. I do everything natural and organic that I can possibly do. That's not to say that you shouldn't take meds, but remember, all meds have side effects. Good luck everyone. Continue to fight the good fight! Some day there may be a cure!
I can so relate. Seems as though I was the only one of my friends who had to endure so much pain all the time.
Research CBD oil made from hemp. It has helped me. I buy Colorado made oil because that state has the most experience in making it. Best wishes.
paula null I’m from
England suffer like many could I get this delivered I tried every medicine bought cream and capsules of Internet had an awful 4 years lost my husband and grandson which has made me worse trying to be strong for my daughter but any help would be good I’m 68 I know loosing my grandson made it worse drs don’t help 🙏
I totally understand. I, too am 66. When I was in my 30’s I started having issues. Spring forward to 60 years old and I was diagnosed with fibromyalgia by a Rhumatologist. I also have a very rare form of leukemia.
Caz Espino you can find very good CBD oil in Holland & Barrett, unfortunately it sells fast, it’s also available on Amazon. Hope this helps.
It's great to hear that fibromyalgia is being recognized as an actual syndrome. I suffered for years with it back 1999 through 2000 before a holistic rheumatologist diagnosed it. I had visited at least 6 other doctors, including a neurologists, and they all made me feel like it was all in my head.
I had one "doctor" actually say, " it's all in your head." I had been in a car wreck and flipped my car 3 times when a tire blew on the highway. My fibromyalgia symptoms came on after a few years. This doctor said if i did the physical therapy after the accident, i should be fine, the pain i was feeling was imaginary from the trauma of the accident.
Never went back to the quack.
Used eastern medicine, including accupressure and accupuncture with good results.
Best wishes.
I was told it was some kind of muscular arthritis🤣
Have been living with for 50 years and it is a challenge.
I was speaking to a dr and mentioned that I've been to the support groups for FM, and she just tapped her head and said it's all up here..i thought how ignorant some drs are, but her husband is a dr there too, and completely different, how they remain together, i don't know..
Everyone that doesn’t understand what you (we) are going through should be sent this video. It’s the best explanation I have seen or heard in my 30 years of dealing with this problem.
If you are having trouble with people understanding, you should check out this video: th-cam.com/video/kXKDwHMq8Xs/w-d-xo.html
I was diagnosed in 2000. I have horrible insomnia, wake up
at 3:00 every night. Fatigue is so bad some times I feel like I’m gonna fall asleep driving. Some times the pain and fatigue and fybro fog gets so bad I just go to bed. I get up to eat and than sleep 3 hours. Get up go to the bathroom and sleep 3 hours. Some times the fatigue would last for days. I’ve thought about un a-living myself many times.
God Bless You!! Praying you find the strength to cope with this terrible madness🙏🏼💜HUGS!
Take your pain and fatigue to God. His loving care and healing will sustain you. He is the Great Physician. I have a different disease-mixed connective tissue disease- along with degenerative disc disease and restless leg pain and sciatic pain so I have many of those same symptoms. I will pray for you to find the right doctors to help you. I have extreme fatigue especially when I'm having a flare. It has moved to my hands and fingers recently so I have to be careful shaking hands. I can do this, but I'm so afraid my daughters or grandkids will also end up with autoimmune diseases. Praying for others helps me get through my own struggles. ❤
❤
Living with FM is like playing medical “Wack-A-Mole.”
Good analogy....Wack-A-Mole just about sums it up
Hhh that's it.
That's true!
Best explanation I have ever read!!
I actually giggled at your analogy. I appreciate the smile you gave me during a major flare up ☺️
waking up exhausted after sleeping 14 hours has got to be even more frustrating than being in pain all the time. i just want to feel awake.
Eliminate white flour/white sugar from your diet and take a body toxin remover.
I was like you sleeping all that time and still shattered. I avoided sugar, all wheat flour products, pasta, rice and potatoes. Made Keto bread if i wanted any bread.Bought Benfotiamine ( vitamin B1 ) feel loads better. I hope this will help you 🙏🙋🏻♀️
@@teresaspensley5640 good advice I hope it’s tried.
I'd rather be sleeping then in pain
I was reading all the comments I also have fibromyalgia and lupus they usually go together I take Adderall for both so at least I can stay awake especially when driving I also take methadone and have for 22 years I am 60 now just saying it works for me
Fibromyalgia has changed my entire existence. The pain, rashes, feeling like acid is running through my veins and coming to the surface of my skin, dry nose, RLS, digestive issues, food intolerance, sudden medicine allergies, insomnia, depression... and so many others...
Bluebird lane , ur comment is very interesting. My daughter has the pain in her veins and them coming to the surface! We have been trying to see a diagnosis of vasculitis but all tests say no .. This is the first time I’ve heard about the vein symptoms.. She has all the symptoms of fibromyalgia but the vein thing threw us! Can u tell me more about your vein symptoms..
Do you hurt deep within your lower legs when you walk?
The reason I'm asking is that it seems as if the fibromyalgia has settled in my lowers legs to the place where it is extremely painful when I walk.
Sometimes to the point that I can only walk 5 mins at a time.
I'm a 56yr old woman. After suddenly experiencing some of the symptoms described by you and so many here...originally thought that it was because I was going through menopause. My PC doc just made the connection and made the diagnosis of fibromalga just last week. The reason that I started researching. This video is the best so far... I've watched several of your videos on other topics. This video has put the pieces of the puzzle together for. I've had most of the symptoms you described for the past 2yrs. I had just brushed them off.... but couldn't anymore...as they became worse. The joint, body aches and fatigue is debilitating. I've just started this journey. It's good to have someone like you who understands and can put out such helpful information. Thanks to everyone here who shared there stories and suggestions.
I was just recently diagnosed with fibromyalgia. I was so upset and cried over the diagnoses. I have always thought of it as “no body knows what’s wrong so you have this, and it’s something crazy people have”. I’m so thankful for your video and others like it that educate us about our syndrome. Thank you so much. I don’t feel ashamed of it after being educated.
Goodness, it's definitely not something 'crazy people have' - although when people make you feel that way, well that can kind of drive you crazy - right? 😀 Start to get educated and work towards gettting your health back - no magic cures, but lots of people recover as shown in the interviews on the chanel.
It's such a comfort to hear someone who knows and understands how difficult this illness is, and how much effort and strength most of us have to exercise, just to marely live a semi pleasant life.
I just want to say thank you. Some times I feel like all my complaints are not understood. Glad there someone that does.
You have stated all the ways I suffered for 34 years. I have had more and more symptoms as I have gotten older. I feel so grateful for this video because I don't feel like I'm going crazy or am a hypochondriac. Thank you so much x a million. 😊
Many of us feel like that - it's hard not to when you have a different new symptom every other week. Once you understand why there are so many different symptoms, you can let go of the angst around that - at least that was my experience.
Yes, this video is the most information I've found on Fibro. I only wish my pain management Dr. admitted that Fibro exists. I was diagnosed years ago by a sports medicine Dr. and reported that to my pain mngmt. Dr., only to be told he does not believe in Fibro so I should never talk about that again. So defeating. At least I know I'm not crazy either. I wish you all the best with your symptoms.
Have u had or do u have a tremor by any chance?
@@littlem39 time to change doctor if he/she doesn't believe in FMS❣️
@tamb7587 yes I have developed a tremor. It is called involuntary tremors and can be hereditary. Gabapentin is sometimes prescribed. However, I take it already for restless leg syndrome. I know this video was old, but it is spot on. I have been suffering for 35 years and wouldn't wish it on my worst enemy!!!
Having Fibromyalgia isn't bad enough. I had Covid in 2021 and I am still suffering from long Covid. It is miserable. I am a little better now. I know that God will get me through it.
I am a nurse and I absolutely believe that fibromyalgia is real and I have seen first hand, just how debilitating it is to patients lives.
thank god hopefully u can help educate. I am a former RPN myself and have fibro as well as my son 29 who is also an RN and was diagnosed with it at 17. his late father had it also. thank god neither of us gets the brain fog or memory issues but the constant throbbing aching pain sugar cravings for me skin sensitivity to touch the bad sleep and other symptoms are so draining. then the fight for pain meds that actually work in doses that work for me with a high drug tolerance is ridiculous. i can't take any of the fibro drugs bad side effects. my son can't take pain meds at all due to being a working nurse so he suffers with just stuff like robaxacet to help him. he is 6 ft 6 in and been in pain since age 2.5 yrs. i wish more doctors would realize just how bad life can be with this disorder esp when combined with other things like spinal damage, disc disease, arthritis etc. and stop telling us we have nothing wrong with us.
I hate when other people act inconvenienced by my symptoms, especially when I'm flaring up at a time that isn't good for them. I think that's one big factor as to why a lot of people don't believe that this condition is real.
I have people in my life who are oh, so _inconvenienced_ by _my_ illness. As if I'm causing _them_ such suffering by being a bad sick person. I've cut so many people out of my life because they were making me sicker. The anxiety of worrying about their outbursts towards my "hypochondria" was wearing my adrenals down... It gets lonely, though.
I absolutely empathise with this. There have been quite a few times I've been left feeling sad and guilty for being too exhausted and/or in pain to do something that's been asked or expected of me by someone who doesn't take fibro seriously.😔
That sounds awful im sorry you have to go through that. My girlfriend has fibromyalgia and i’m doing as much research as i can so i know how i can support her.
I relate to the “other people finding it inconvenient” thing as i am autistic and spent my childhood constantly treated like a burden on everyone else. Can’t go to huge parties, can’t make eye contact particularly well, often speak very loud or very quiet. All of this is apparently “embarrassing” for other people. I won’t pretend to know what its like to suffer from fibro (and autism is pretty different since its in some ways a disability and in some situations a huge advantage) but yeah. Always seems like non disabled people think my disability is *their* big sob story. Everyone wants to “cure” autism - not because they give a toss about autistic kids, but because they don’t like changing their plans or slightly altering the way they speak in a way that mildly inconveniences them.
Thank you for posting this video! It is so very important that people within the medical community, as well as the general public, stop viewing Fibromyalgia as just "Hypochondria On Steroids", and start treating this condition as a complex, interconnected syndrome with a highly individualized list of seemingly unconnected symptoms. People suffering from this debilitating condition are sick and tired (quite literally!) of having their very real symptoms dismissed as something "imagined", "invented", "attention-seeking" or "just a minor pain" which has been blown out of proportion. While the list of Fibromyalgia symptoms was scrolling down the page on the video, I was mentally ticking them off one by one and realizing that I had experienced all of them in my 65 years of misdiagnosis by tens of doctors, some of them considered to be top experts in their various fields. For me, the most frustrating symptom is the relentless, debilitating, utter exhaustion, when just moving your body very slightly feels like trying to move a ten ton truck with one hand tied behind your back. And its very true that we often just "give up" on the medical profession and try and manage on our own. It's a very lonely condition, Fibromyalgia; family and friends get tired of you constantly being unwell with something so undefined and "invisible" ... And I often wonder exactly how many people suffering from this syndrome end up in mental asylums, misdiagnosed as "just delusional"...
Exactly the same with me.
I wonder how many just plain give up and end it all!
Today is January 7, 2024 and I’m literally in tears. I fell out of a window during a fire (Arsen) in 1991. I broke 3 of my vertebrae, cracked my pelvis, and had some neck trauma. I am now 54 and I have been in this Fibromyalgia pain for almost 30 years. I am also going through Perimenopause. Add those pains to my Fibromyalgia pain I feel absolutely terrible. It angers me when my family sees me trying to walk, sleep, or do anything in so pain debilitating pain and looks at me as if it’s nothing wrong with her. 😢😢😢It hurts me because they can never imagine all the pain I’m feeling and it’s worse this time of the year. There is not a part of my body that is not in pain. I don’t take Any medications. I just sit in extreme pain rocking myself and waiting when it to be over
When you find a doctor who recognizes fibromyalgia it is amazing. Shop for a doctor that believes in it and will treat you. This video is excellent.
I was diagnosed today..... And I'm crying from the blessing of having a name and a treatmean. I was misdiagnosed with bipolar disorder because od this ....ive been in pain since i was a kid. I thought it was normal...and finally....a doctor looked beyond the stain of a mental disorder that plagued me at 18.
My Mum and Cousin has Fibromyalgia, I can't imagine how much pain they go through I bless anyone who has this condition.
Two years ago I was diagnosed with the rare autoimmune condition of Primary Biliary Cholangitis. It has pretty much the same symptoms. I've had fibromyalgia since 2005. I'm 75 now and can barely make it thru a day. There was a time I didn't believe I had fibromyalgia. Over time I saw three doctors who all confirmed I had fibromyalgia. As it got worse I was tested for PBC.
My daughter has fibromyalgia. She is 42. I truly believe she has had it since early childhood because even then she was super sensitive to touch and tired unusually easily. Just a few moments on a slip n’ slide left her in pain for a couple of days whereas the other kids were having fun.
You're a good❤️Mum Ursala.
I've suffered through the same as your daughter when I was young. Playing hard with the other competitive kids is difficult for fibro sufferers to keep up with. Tiring easily and over playing took it's toll and I'd be in pain for days after playing for just a couple of hours. I thought it was "normal".
I wasn't diagnosed properly until I was 36yo and was told I had it all of my life and I was so relieved to know it wasn't all in my head, like so many have said to me. Family and friends backed away and Doctors only wanted to prescribe anti-depressants, that in my case never worked but only caused me to suffer more.
Us fibro sufferers must treat ourselves as gently as a🦋butterfly or we end up losing the powder on our wings and can't fly.
🌹You're daughter's blessed to have you for a❤️Mum and I will pray for both you and your daughter, Mum's feel their child's pain even💔more.
Please look into Autism and EDS (ehlers danlos syndrome). They are commonly comorbid and may be a better explanation for your daughter’s illness. Doctor’s often slap on the label of fibromyalgia when they don’t know what’s wrong with a patient and claim “there’s not much we can do about it” when there are much better explanations and actual treatments for other conditions.
50 years ago Janet Travell left humanity precise 34 part recipe daily behaviors restorative therapies you must do yourself when obeyed guarantee to eradicate all the hundred and 22 signs and symptoms of PTSD cured with megadoses of TLCs works perfectly miraculously precisely helping mother nature do her best while you get good nights of sleep wake up refreshed pain free mental clarity battle ready.
@@maddienoelle22 💯 agree, but also Neurodiversity in general. I have just been diagnosed with ADHD and also on pathway for ASC assessment.
I believe my FM has been caused by years of masking due to being ND
Interesting. I have been suffering from pain all through my body since I was a child. When people just barely touch me, I really hurts. It was hard to play with my siblings or classmates because I always kept say "Ouch". Sounds hurt me and light also. Too much stimulation period hurts me. I don't understand and I don't have the money to get test for Autism, but maybe it's not that. I have all of the other symptoms also and the older I get (I'm 53) the worse it gets.
I have gone to drs about my digestion problems and the drs say it's psychosomatic. I am too stressed. I have been dealing with this since I was born. I get so frustrated. Sorry, didn't mean to go on, it just frustrates me no end.
I've had this curse for 20yrs+, this is by far the kindest video! The suffering from the outside world is the loneliest. My sarcasm to loved ones, the plight of having an invisible illness. When a dr casually told me I had this thing, there was no internet and I just brushed it off...because everyone else did. I can not express the humiliation of most doctors noting me as unstable. I still, to this day am just as alone. I have no doctor, I am in my early 50s now, I am so tired from fighting it, I did a bloody good job but now its getting the better of me. Thank you, for this video, for once I am acknowledged, even if we haven't spoken.x
Hun, I know exactly how you feel. I, too, have given up. Sick since 2003, given up since 2015. I fought hard for a long time, but I'm almost 60 and I'm tired. I can't fight this illness and everyone else, as well. I'm on disability since 2018 for 5 herniated discs. They tell me my back is pretty bad. Guess what? My fibromyalgia pain is so bad that it drowns out the pain in my neck. I don't even feel the pain from my herniated discs, stenosis or degeneration. That's how bad fibromyalgia is.
I hear you Natasha. I have been suffering for 10 years and no doctor or specialist seems to be able to say what’s what. I feel like when I mention what’s wrong or the pain, skin burning feeling, stiffness, brain fog it’s just like I’m a nut job. I get you, I hear you 🥹.
My granddaughter, who is just 21, was diagnosed with fibromyalgia when she was a teenager. After watching this video I understand how profoundly this syndrome affects her.
My daughter was bed bound from age 12 to 29. She had late stage disseminated Lyme disease, contracted at age 7 from a tick attachment. She had a string of ailments after age 7, was tested for Lyme twice which was interpreted as negative. Then her health collapsed at puberty.
I’ve had fibromyalgia for over 18 years it’s horrible there are days sometimes weeks when I’m unable to get out of bed because I’m in excruciating pain I’m blessed with having a wonderful family who help me every day I’ve just been diagnosed with polimyalgia as well and I’ve got arthritis but I’m one of the lucky ones because what I’ve got is not a terminal disease i thank the lord every day for looking after me my advice to anyone who has just been diagnosed with it talk to other patients because it truly helps my prayers are with you all x
I really appreciate you sharing this info about fibro. It's completely debilitating some days and I wish more people understood just how bad it really is, not only physically but mentally as well.
I honestly gave up going to the drs. I was diagnosed in 2015 but the dr said i probably had fibro a lot longer than that. I got tired of being accused of being a pill popper because I was trying different meds and nothing was working. Lyrica makes me itch really badly, gabapentin doesn't work at all, I've tried creams, patches, steroid shots, acupuncture, tens units, regular physical therapy, aqua therapy, etc. I've even had one dr at the cheyenne va scream at me saying "there's no way in hell I'm giving you pain meds because you're a liar", while my husband is yelling back at her trying to explain why I was bruised because I was crawling to the bathroom because I couldn't stand upright. It was absolutely horrible. The last physical therapist I went to told me my pain would go away if i did deep breathing and imagined all the pain pouring out of the bottom of my feet. I walked out of his office and never looked back. Forget talking to the dr about any other symptoms. Majority of the drs I've seen honestly just don't care.
Even after all these years they still don't get it. I have gone through this for years. It's hard to kick a trail for a new disease or syndrome. PMS was the same way. It's the pain medication abusers that have ruined it for us that are truly ill.
......and the majority of sufferers have a vagina in a still highly misogynistic field.......
Can I suggest you give Curcumin a try. I was diagnosed with Ulcerative Colitus some years ago, I already had Fibromyalgia. The drugs they prescribed me for the U.C. gave terrible side effects so my G.P. suggested I try an old South African "cure" which was Curcumin ( the natural and active compound in Turmeric). It effectively relieved my U.C. pains but also my Fibromyalgia problems. Just check it out it may help, I hope it does. From Australia.
I'm a fibro person, too. I feel so badly that you've had such bad experiences! I was diagnosed in 2020 by my doctor who totally knows about fibro. Gabapentin helps me alot. I hope you find a better doctor. ❤
@MhMsScrapbook - I know ALL TOO WELL what you're talking about... The Medications are there to be Prescribed when needed & the Pros outweigh the Cons, yet Drs still Refuse, at our Expense, to do anything about it bc of what Others have done. I have THE WORST Anxiety & my Dr has No Qualms Suggesting Antidepressants, but forget about getting any Quick Acting Anti-Anxiety Medications to take as needed. Too many Drs Automatically act as though you're a Drug Addict or get Mad/Insulted if you tell them you've been Researching or give your Opinion on what you Believe will Work Best for the Symptoms you're Feeling, you might get the Stink Eye & their Entire Demeanor seems to Change in a Millisecond!! It's absolutely Absurd!!!
I'm tired of Paying the Price for the Illegal Actions of others, bc I'm already Exhausted w/out adding anything else. However, I can Sympathize for the People who actually do need Medications from a Dr, got Ignored & they sought out what they needed due to a Flawed Medical Communities, Systems, Networks& Drs who might as well use the Oath they took, "To do No Harm", as Toilet Paper!!
31 years l have had this,took around 20 years to get diagnosed,it was a relief in many ways to get that diagnosis.Struggling to keep working now,takes all my days off to get myself to the point when l can start my shifts again.
It's such a drag,the chronic fatigue and pain are just draining.
"Don't be ridiculous, it's all in your head."
"Faker - just looking for attention."
"Lazy"
"Never any help from you hmmm - should've known better."
"Tests are negative."
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My whole bloody life - I was never lazy, or anything else people said to me. I moved furniture - even to 3rd floor apartments.
I learned to keep on trucking with EVERY "non-symptom" - I had no choice, no help and was so unbelieved.
I'm 60 now and some days I feel 120 but people still don't get it, not even family !! Sad but hey 50 years later I'm ready so ...
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Good luck all !!
Hope you are doing good!👍
Yes so familiar....Could you tell me symptoms please if you don't mind.
I ferl the same.
Heard all of these from different doctors
Bless you. There are many enduring what you describe. Yes,even family think you're lazy,or some say u don't have enough faith,or it's hubris. It's a disease or syndrome that may not kill you but makes u sometimes wish it would. I worked two jobs,had kids,was active and then nearly bedridden. Once I tried support groups but still am too exhausted to even plan to go. U are in my thoughts. Stay strong
I was diagnosed at 17 after years of going back and forth trying to find an answer for the severe pains i was getting. What was thought to be just growing pains turned out to be fibro flares. Ive developed other symptoms of it as ive gotten older but its good to know there are people who acknowledge that it is a real illness and not just psychological
I've had this for yes and would like to know if there are any new pain medications out there or are they treating this disease differently now with out the pain meds?
I found that menopause does aggravate it. I used to feel like that like growing pains at the back of My legs. My wrists u can't touch them like b4. It first started in my fingers. And escalated.
Thank you for validating my experience. I was diagnosed with “Primary Fibromyalgia” back when I was 24. I am now 60. Sooooo many symptoms since then ascribed to “stress”.
Thank you and your compassionate understanding.23 years in. Am currently having a debilitating relapse. Awake for an hour, then sleep four, awake an hour, sleep round the clock. So tired, sore, weak and dizzy.
Sorry to hear that Helga - did you see this podcast episode? th-cam.com/video/i3edUvZURHY/w-d-xo.html
@@CFSUnravelled1 Thank you, I certainly will watch it.
Excellent video on symptoms. I do also have to add many of us suffer from low vitamin D, and in some cases folic acid. I have great days and days where I can't get out of pain due to low back pain, and bursitis. More needs to come out about this horrible horrible thing and Drs really need to be educated. I got lucky, my Dr tested me right away to rule out other things before saying I had fibro. And for those who don't understand, it's not a pity party for us, we would rather not have this and have our lives back. Prayers to all of us who suffer.
I find Magnesium helps me with the "bone" pain in my legs
It's becoming more and more main stream but takes ages to get a diagnosis
How do they test for fibromyalgia?
Make sure you not B12 deficient, being B12 deficient can cause a lot of these symptoms. I know, I was, since taking mega doses of B12 a lot of these symptoms have subsided. Especially fatigue
Bursitis low back pain can be symptoms of Ankylosing Spondylitis. Many many many patients are undiagnosed. My friend is 45 needs a Walker to get around with a chair to rest, her eyes are damaged, she needs steroids to function and is still being told she has fibro even though AS runs in her family and they all have the genetic marker, her inflammatory markers are high and her spine shows a lot of degeneration and her stubborn rheumatologist refuses to admit his original diagnosis may be wrong. Her primary doc now needs to send her 4hours to a different specialist so she can get the treatment she deserves and desperately needs so she can have some quality of life. I think fibro is diagnosed too often and they often dont eliminate other causes first like they are supposed to. I was very lucky my rheumatologist is an expert on AS and knew straight away what was wrong with me. Otherwise I'd still have no treatment and be pushed into the fibro pile
I was diagnosed 5 years ago.. The consultant told me, it's not in your head, it is an actual condition, you have to learn to pace yourself, gentle exercise when I feel up too it.. Such a relief to hear those words.. I have all these symptoms, I cabt concentrate, forgetful exhausted, pain all over, hate loud noises & bright lights. My life changed so much I just don't feel me any more..
I was diagnosed with fibro 21 yrs ago and the past 3 yrs have been misery.
Ive never had anyone describe my life so closely as this video did. From the types of pain, to getting out of bed each day at 3am, to the EXTREME fatigue and brain fog that causes me to forget the simplest things. leaving water running, forgetting my childrens birthdays to forgetting many of my symptoms when asked, even when I can feel it at the time, i still forget.
Me too?! I forget my symptoms, too, OR I remember them but I have soooo many I'm not sure which ones are most important (to that particular "professional" also) because there's been the time's I just ramble off everything that hurts, from the hairs on my head down to the stabbing pains in my feet, and see the doctor looking pitiful at me and usually interrupting with questions about my "mood" or "anxiety/stress level". Medical psychiatrists? Idk, I give up, they win? I've wondered if I just have a low pain tolerance due to these dismissals by these "professionals" but pretty darn sure I don't. I was in 'active labor' for 5 days with my son (due to a inverted pelvic bone) before asking for "meds" and a day later to be induced and get him outta there on my birthday and Mother's Day, lol... I'm really sorry to hear of your suffering and hope you're able to find some relief somehow, someday! Till then, please take care and know you're not alone! I'm new to this online, with videos and such, but can already see it's a village here!!! Supportive, knowledgeable, caring, compassionate and.. Validating! Thank you, and I'm sorry for all your suffering, too 💙🙏💙
Me too. Sometimes I think I’m going mad because I’m forgetting things and it’s so frustrating. Lately my fatigue and pain has been off the chart probably because we’ve had such a poor summer here. I always suffer when the weather changes…. The video has definitely helped me understand why I have so many diverse symptoms. Hugs to fellow sufferers xx
What kind of specialist should I seek. Typically they send me to a rheumatologist who can only prescribe
Gabapentin
@@karenyoung4608
And me too! "Yes" to variations of all the above!
This video has been the most helpful - just being affirmed in what you know is true! Comments are encouraging and kind. Sending love and peace to all who suffer with this. It's not fun when you long for a hug, but know it will hurt on most difficult days.
xoxo 🙏
I wish he was my doctor! He's one of the few doctor's that really understand fibro.
My family had trouble with me all my life, in and out hospital and nothing. I found out I had fibromyalgia at 26. I couldn't move without crying. Doing better right now.