Ladies, please hear me out. I have fibromyalgia and I cannot sit in a hot bathtub of water. It feels as if my body is boiling in pain. So I assumed that a hot tub jacuzzi would be the same. It is not! I married my husband who has a jacuzzi and almost every night I get in it and afterwards I sleep like a baby. Thank God I didn't assume all hot water is the same. I wish I could give all Fibromyalgia sufferers a jacuzzi, because it helps so much. Maybe it's the moving water that's not in a typical bathtub. Having said that, jacuzzis are not the answer. We need medication and funding. This illness has devastated my life, because the medical community has failed us. It's not in our heads and addressing that misconception should be a priority. Good luck everyone.
Go on to Cbd drops Start with 5mg after 3 days if no improvements go to 10 mg I don't take opiods at all I also use the OTO machine Foot reflexology an the tenz machine
Darling I stopped Gabapentin Lyrica ampitrytaline 4 yrs now... Because I take cannibi,s ..CBD Relieve by Rethink made in South Africa I take the drops it has tumeric and Unicaria in it
I cant stand a tenz machine its like torture. Tried that drug they came out with and the first 12 hours were great, felt like everything was relaxing. As the next few hours went on the feeling just kept increasing until i felt like i was going to explode. It was awful. i had to stop taking it immediately. My pain jumps around from place to place. I can have pain for a year in one area, then one day its just gone. Next day i have pain in a different spot. My doctor retired snd left me having to find a doctor who wants to take me off the painkillers. Im panicking inside. No idea how im going to handle the pain. I feel like i may be pushed into something that could ruin my life. It's a terrible disease and no one really understands what im going through. Edit: I remembered, it was Lyrica.
I also tried Lyrica and immediately wanted to kill myself (literally). I had to call 911 to have them take me in on a 5150 so that I didn't actually kill myself.
I definitely didn’t want to get this diagnosis because as a RN who worked in hospitals most of my career, I saw how terribly many nurses talked about patients who came in with a diagnosis that included Fibromyalgia…”You’re getting a patient in 206 with Fibro….have fun doing the Narc count later.” I kid you not! That’s probably the nicest way I’ve heard it talked about and these are nurses of all people! I have Osteoarthritis, Inflammatory Arthritis, Juvenile Discogenic Disease, Myofascial Pain Syndrome, and Fibromyalgia. I think my back is what caused it to develop along with extreme stress at the time. I had to stop working by age 42 because the pain and exhaustion were so bad I just couldn’t get up and go anymore. The last place I was working at before I altogether stopped was so horrible on my mental health that it damn near killed me, again, the people who treated me the worst were my own peers which really did a number on me mentally. That was a nursing home where I was the Clinician Nurse Manager for a locked 25 bed Dementia unit and the adjacent 30 bed unit…I went to this job thinking it would be easier and more manageable 😂 I was only there 6 months before I stopped working altogether and never returned. That was the lowest point of my life because I was in the process of going to Doctors trying to figure out what was wrong with me so I had to miss some work or leave early for appointments, so it was very problematic for my new employer who saw me as a problem and were not nice about it to say the least. It wasn’t just me though who thought they were extreme jerks because 16 LPNs and a new RN Graduate all quit in that same 6 month period. They treated their staff who worked extremely short on a daily basis, like crap. I ended up in bed for 6 months and lost my appetite from the pain and depression which left me loosing 40 pounds and looking like death warmed over…in fact, my kids were scared that I actually was going to die. Thankfully I got on some antidepressants and eventually pain medicine that pulled me back from the brink, but it’s been a long 11 years trying to figure out how to live with constant pain and all the other symptoms. I only recently accepted my fate which tells you exactly how hard it is to deal with on a multitude of levels. I’ve found the most difficult part of this illness is the way other people treat you and talk about you which in turn has caused me to become antisocial to a certain extent. I have brief periods where I rally but seem to always end up back in a rut and living in the coldest and most humid states certainly doesn’t help things, but I don’t want to live far away from my kids and grandkids so I have to deal with it. To anyone suffering or having a hard time managing their life because of Fibromyalgia, or any other illness, I hear you and hope that you will find a way to live your life the best way that you can. Hopefully there will eventually be some medical breakthroughs to make this condition more manageable or maybe even a cure!
Same same same! RN here, and extremely painful 100% of the time. This has been decades long. It’s exhausting. I have NEVER awoke feeling refreshed, instead, I wake up and cry tears, wishing the day will fly by so I can get back to bed. I’m terrified to add this dx to my list, because of the stigma, but I’m at my wits end and naming it may be a tiny bit therapeutic.
I too a RN and have this dreadful debilitating disease… It hit me in my late 20’s.. but I continued on working FT.. till age 50.. it came on with a roar.. sciatica, couldn’t stand to be hugged, massaged, touched. With animals on me.. omg I wanted to throw them off me.. 😢.. nothing has helped.. I’m allergic to Gabapentin & Lyrica my whole body swelled.. my legs the worse.. Savella.. same reaction. Now there are days my jaw locks up.. I have a tanning bed.. that I get in fully clothed towel over my face.. A hot tub too.. heated mattress pad.. I have to push myself to do anything… Also I’m sensitive to electricity.. I get shocked a lot.. I’ve even had a electrician to my new house to make sure all is well.. I’m the only one that gets shocked.. Another issue.. Dental.. they can give me Novocain forever and the signs are there the medication was given but the effects hasn’t taken place.. I can talk normal.. seems my nose & back of my head gets numb but not my mouth… Finding treatment will be greatly appreciated 😊😢
Ditto!!!! RN of 20 years and before that an LVN. If you had asked me about fibromyalgia 25 years ago I’d roll my eyes and say that I didn’t think it was real. Ironically, I was suffering from chronic muscle pain, extreme fatigue, insomnia and brain fog back then 🤦🏽♀️. I had to stop working at 51 due to debilitating depression and a year later when I felt mentally ready to go back to work, I had become physically disabled from inactivity. It’s impossible to get adequate care but I’ve found that physical therapy has been the best remedy so far. Heating pads, deep tissue massage and Rolfing has been lifesaving as well.
Ladies, I was diagnosed with this terrible disease years ago when I was in my early 40's. I worked until I couldn't anymore. Idk what to do about the pain, I also have multiple other diseases to go along with it, I live in a small town and, my family doctor thinks I'm crazy for asking for pain meds, idk what to do, can someone please help me,? I can't take it anymore 🙏
@@naomiwarner7117 I know this kicks your butt.. when it flares I’m down like I have the flu… I was 3 days in bed… Food does have a lot to do with flares… but I’ve not changed anything to know what it would be.. I do a lot of plant based meal replacements.. and that’s for protein.. it’s something I have to choke down.. caffeine don’t bother me..I’ve been using Premier Protein powder w/ caffeine / energy coffee flavor mixed with coffee .. 32oz 30mg of protein.. Also Nestle Good Night 10mg cozy cocoa .. take a hot shower and have my coffee to go walk… I walk twice a day 2 miles in the morning 2 in the evening.. and cleaning house I get the10,000 steps in.. but when I’m flared.. I don’t want to move.. Doctor you have is a male I assume… and they do look at you like you’re nuts.. Let me say.. the only thing you can do is ask for prescription to try.. I was allergic to all of them.. Lyrica and Savella.. Gabapentin aka Neurontin.. ( don’t take this long term) Cymbalta.. anti-depressant but it also helps with hunger.. good luck keep us informed..
It's very good news about heat helping people with Fibromyalgia. I've had Fibro for 39+ years. I've used a Thermophore heating pad successfully, as well as warm water baths/ foot baths with Epsom salts. I agree that working on calming down a hyper-body-mind system at night certainly helps create more successful sleep. The sincerity here in each of you in providing excellent resources and techniques is heart warming. Thank you very much! ❤
Since the first time I started seeing testimonials about you Dr Igho you gave me full confidence and trust that i bought your herbal medicine that cured & took away my pain permanently, just as you stated in our interview, i finally got to say thank you so much and I highly recommend him to anyone looking for a qualified specialist.
I've had fibro for about 40 years, arthritis for 54 years. By trial and error, I have found that gentle water aerobics/stretching, in a warm pool, followed by 15 minutes in a hot tub, followed by a nap really helps me. It helps reduce stress, gave me better sleep and more mobility. It very important to get up and move periodically especially in a painful flare (which is the last thing you want to do).
Dityo here. 87 and have had fibro for 35 years after lymne disease Ymca.. hot tube water walking backwards in cold pool and bike. Days I cannot get out of bed but the Ymca. keeps me looking healthy even when I can barely move. People always give compliments no matter how miserable I feel. It feeds the ego but I still feel like hell.
@@anne-no2ic I hear you there. I’m 60 years old and I had a gentleman tell me he thought I was 30. I chuckled and said only if my body felt 30 instead of 90. Lol. But that was good for my ego. So I know what you mean. I can barely walk a block I have people pulling over asking if I’m ok. I thank them and just say it’s pain through my body. Strangers can be so kind at times.
Thank you for this. I've suffered from disabling fibromyalgia for more than 20 years (and many years before I became disabled). It is heartening to me that you are sorting through this perplexing syndrome. Someday people will not need to suffer the torturous life I live.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I’ve been on a carnivore diet for a month and my pain is soooo much better as well as my arthritis. I’ve had Fibromyalgia for over 50 years and this is the first time I have had relief.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I just recently was diagnosed with fibromyalgia. I honestly want to die because I'm in excruciating pain every day. I can't sit or stand, but lying down gives me a little relief. I hate taking pain pills, plus they don't really work. I've also experienced the stigma of being a patient with this disease. Thank you for the work you do in support of this debilitating disease.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing is also critical in order to recover. 🙏🏻❤️🙏🏻
What a breath of fresh air to hear a conversation with two actual fibromyalgia specialists on new treatments! Dr. Lipton, it sounds like we’ve lived with this puzzle about the same amount of time, and both had a great deal to work out on our own. Dr. Chadwick, I’m in Kansas City, so why have I never come across your practice before? I’ll be looking into it tomorrow! I’m a moderator on a Facebook group with over 7,000 members. Another member posted this video tonight and I’m very glad they did. Hopefully many members will be as happy as I am to hear about new treatments and an actual research lab! Thank you all for this wonderful chat.
I was diagnosed about 25 years ago with Fibromyalgia, CFS, all the things that normally go along with Fibro. Could you please tell me the name of your group? I would love to look into it. TIA
@@lisamatson9915 Hi, I had posted it above, but it's gone now. It's called Fibromyalgia Support and the logo has a large purple butterfly. We have over 7K members and it's monitored extremely closely, no selling, no false information, we insists members treat each other respectfully, and so on.
I don't think you'll get in to see Dr. Chadwick. I had an appointment scheduled and was waiting, but the office called to say she had to cancel all new patients because she had been asked to take part in a study, possibly the one she is talking about but I thought they had told me back pain. So I see one of the other doctors there for pain meds and occasional injections but not any other things related to fibromyalgia.
I live on the beach in UK and I swim all year round. Cold water gherapy has helped me reduce my painkillers. I am definitely influenced by changes in barometric pressure/weather changes.
Learn from my experience. I was diagnosed with Fibromyalgia in 1999. A few years ago, I went gluten free and my IBS and migraines disappeared completely. Pain disappeared 80%. I have my life back again. Please try doing this for yourself, it's worth it. I've also eliminated sugar, soy, seed oils and processed foods which has also helped. Eat like you live on a farm, fresh foods only! God bless.
@@lubalaurens4003 Hi, sorry I did not see your reply until just now. When I initially went gluten free, I noticed an improvement after about 2 weeks and felt 80% better after 3 weeks. I didn't try eliminating the other stuff until about a year later because I didn't realize it would make a difference but after I finally tried, I noticed even more improvement. It's definitely worth a try! I hope you have great results like I did! :)
I just want the pain to stop. In all it’s forms. We’re not crazy, we’re not lazy, and we are NOT drug addicts. We want answers and solutions. Not snickers and stigmas. I am in pain and tired. I want my life back.
I get it. I had to look at emotional pain from my childhood and let go of a lot of fear and resentments. I had magnesium infusions at a pain clinic. I go to a heated magnesium pool when I can. I still have lots of magnesium before I sleep (mag glycinate from a compounding chemist that specialises in fibromyalgia). They recommend taking PEA. I have 10 Vic D3. per day and that helped a lot. I no longer have strong pain meds. I try to restrict my carbs and dairy intake. I got better I believe you can too. Focus on having a cup half full rather than half empty.
Omg Sarah! You said EXACTLY what I've felt for 20+ yrs. I'm lucky to have a primary care physician that I've been going to for almost half my life, and he 100% understands that fibromyalgia is real. He has been treating me lately with Gabapentin, and since I am resigned to having to take SOMETHING or I'd lose my mind and will to live. Actually I've already been close to giving up at times. But having a dr that knows my issues are real helps more than I can say. I also have a partner who knows what I'm dealing with is NOT something anyone would choose. Life can be difficult enough, especially now with all the insanity in the world. I can't imagine not having my dr and partner in my life. I hope you have similar support 💜
I have had fibromylagia for about 15yrs and been all every med out there with no relief. I have been taking Low Dose Naltrexone for over a year now and am no longer on any other meds. It had truly been a blessing
Fortunately I have an amazing PCP, compassionate and supportive, unfortunately my husband of nearly thirty years doesn’t understand that I am doing the best I can. He’s angry and impatient. I went from primary bread winner and primary parent to struggling to function. I stuck it out as long as I possibly could. I’ve tried providing my husband with information about fibromyalgia (I also have other diagnoses) through videos and books and articles, he is just not interested. THAT, combined with my inability to work are the worst aspects imo… I have no hope left nor the strength to seek hope. I genuinely feel like a waste of space and a tremendous burden on my family. Fibro robs you of the opportunity to live.
Do you have a support group /people other than your husband? The first person should be him yes, and I can image how disappointing, overwhelming and painful your journey with these life changing circumstances. Fight for you, give yourself patience, don’t tolerate being devalued, your people will come when you focus on learning to cope first then have protocol for your flareups
I'm so very sorry to hear that your husband isn't supportive. I bet you feel so lonely. Do you have any loved ones who do understand and help support you? Please don't feel like you are a burden to your family. You are important! Yes, this damn disease is a hidden monster. Sometimes I wish I had cancer instead because I'd have more access to medical staff support, compassion, treatment and drugs. And if treatments or drugs didn't work then I could pass on instead of living in terrible pain for 30 more years. You are blessed to have a doctor who cares about your well-being!!!! Please don't forget that you are worthy of help from your husband.
Thank you all for your kind and supportive comments. I am on SSDI, while I don’t want to seem ungrateful because I am very much appreciative of it, SSDI doesn’t support a family of four. The ability to support my family was a sense of pride and accomplishment for me that is still a struggle to overcome. I cut off all ties with my family of origin years & years ago. Unfortunately, when one faces adversity of any type in life, true friends are revealed. While some hung in there longer than others, I have no friends remaining. I understand. It’s hard to understand what it’s like to have a broken body that is unpredictable. All the best intentions will not make this body function at a specific moment in time so attempting to make plans to maintain friendships failed miserably. I do not complain or whine but sometimes, a lot of times, it is literally a struggle to get out of bed. Since I first posted my above comment, my husband has taken baby steps towards being understanding. Unfortunately, we have a long way to go and with progress comes backsliding. Maybe it just needs more time, although I received the first of my many diagnoses nearly two decades ago, I managed to keep my employment for the first decade or so. I guess he liked his life better before, when I was responsible for nearly everything and he only had to work once in a while. He did not anticipate the drastic changes that awaited us, in all fairness neither did I. I pushed through the pain and exhaustion until I literally couldn’t. My bosses both local & corporate as well as both corporate and local HR sat down with me to discuss their concerns, they could see the changes in me and could see how much pain I was in without me saying a word. Fortunately, that played a role in receiving SSDI the first time I applied. Kinda weird to think that supervisors, even supervisors who did not interact with me regularly, could see my struggles and the man I chose to spend my life with couldn’t. Gosh, I’m just rambling away here. So sorry! You are all so kind to offer your thoughts. I really appreciate it! I do get support from my psychologist and my doctor, I am genuinely grateful for them, far too many times people cannot find support in the medical community. Again, thank you, all of you! ❤️
I have fibromyalgia for over 30 years, i find when I lay down in warm water my pain gets better while I’m under the warm water but it comes back right away when I come out.
I am 69 & had fibro all my life. Diagnosed at Mayo Clinic in MN. I've tried many things & the only thing that helped was Tramadol which stopped working after about 7 years. Had to quit work & I just do minimal. Now only take occasional tylenol or ibuprofen. It's been a rough life.
Becky Dee I’m sorry it’s been a rough life. I’m in the same boat as you I had to leave a multi million dollar billing company plus I bar tendered and waitressed working 7 days a week. I was a single mother of 2. All at once I was getting diagnosed with Fibromyalgia, Thyroid cancer, Ovariectomy, bladder suspended I wonder why I was in pain! I had all that going on at 36 years old. I’m 60 now with bulging disc in my back. Arthritis in my knees and I had separated my big toe from my foot so I have my toe put together with metal. I was put on opiates and got addicted. August will be 6 years clean from opiates. I try to move everyday but there are some days I can’t put my feet on the ground. I pray 🙏 for all my fellow suffering brothers and sisters that we get some relief from pain. If only I could have 1 hour a day I would be so happy. Much love to you all ❤️
Thank you for all of the medical professionals who are tackling this problem on behalf of those of us who have suffered for many decades with this affliction. And thanks to everyone who comments on here because it was a very lonely world 43 years ago to think that no one else understood what I was going through, and now I have friends that I have never met, who understand what I live with. thank you for just being here. !
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I was diagnosed in 1996 when I was fifty, after going from doctor to doctor looking for what was wrong. I was originally thought to have lupus, but that was ruled out. I finally found a doc that said to me…”I have good news and bad news”…it won’t kill you, but you will be in pain for the rest of your life! He was right on the one hand, I’m still alive at 77, but I have managed to understand over the years what triggers my pain and how to deal with it. I’m mostly affected by weather changes, and when I eat carbohydrates. November and March are the worse months for me, besides changes in the barometer. When the days and nights are mostly around the same temps, I have less pain, so spring and late fall are the most painful for me. I especially don’t eat lots of carbs during those times just to try and avoid any bad days. As I look back pre diagnosis, I realize I had fibro long before I was diagnosed, tiredness, and the big one was when someone hugged me, it was painful, as my main symptoms were in my upper body and hands, and I eventually avoided hugs, which was unfortunate.
I've been suffering for 30+ years. My Dr. doesn't know much about fibromyalgia, even though he did diagnose me. I live in constant pain and I'm always exhausted as well.😊
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Oh please dear lord let there be a breakthrough for this evil disease. I’m sooooo tired. I’m 66 yrs old I live in Australia and am soooo desperate to have someone listen to me. 😢 I cry so much with the all over pain have been diagnosed with fibro about 5 yrs ago Any info/ support would be greatly appreciated. I really valued this video. Good job girls and a BIG THANK YOU 🦋 God Bess
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I was diagnosed in 2013. In 2011 I had complications after major abdominal surgery. My wound opened and became necrotic. Wound therapy treatment for several months and it took a year for the wound to close. I battled with anxiety attacks, sleep problems and all over pain. I was finally diagnosed by a Rheumatologist in 2013. I find that many health care providers don't have a clue about this condition. Do you think that Fibromyalgia needs a new name? The stigma is definitely there and I believe affects the quality of care we receive.
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing and calming the nervous system are also critical in order to recover. 🙏🏻❤️🙏🏻
I’m an RN and was assaulted at my place of employment. I suffer from PTSD and from there dx with fibromyalgia . I haven’t worked since the assault in 2019. Medications have nit been effective. I’m from Ontario Canada and it’s really not taken seriously . I’m isolated and hopeless .
I am so sorry to have read your text that you feel hopeless I have fibromyalgia also some other autoimmune issues. I'd be happy to talk to you or text you or support you
Many times, illnesses don't get properly researched until an actual doctor or researcher or someone close to them is stricken with it. That's the motivator to get the powers that be to pay attention to it.
Agree with you ...and sadly I have to say that I'm glad some medical professionals have had to face what we face and now we are getting the attention that we need. And don't forget that a few celebrities have it too. I believe Lady Gaga and Morgan Freeman both have it.
I have been diagnosed with Fibromyalgia, CFS/ME and Small Nerve Fiber Neuropathy. When I heard you talk about hot baths....I had to comment. That would be torture for me. I couldn't can't think of anything worse that have a hot bath! I cannot stand being in or near hot water. So much so that I cannot have baths. Instead, I have barely warm showers. When I had hot showers, I struggled to dry myself as I'd sweat profusely for upto 20 to 30 minutes which was so frustrating to get dried. I even struggle washing dishes because having my hands in hot water affects me in that I feel so uncomfortable, faint and sweaty.
I also cannot tolerate very hot showers or baths. I get faint, dizzy, nauseous, and weak. I enjoy hot tubs but no way I could sit in one for 45 minutes....10 to 20 min. at most, and the air needs to be cool or cold.
I dread bathing and showering because of how it feels and afterwards. I put it off and put it off, which is mentally draining. Why can't I just get washed like a normal person aaaaaah.😢
Thank you both for what you are doing for Fibromyalgia. I have Fibromyalgia for 35 years, LDN has changed my life, try it, and see the benefits for yourself. God Bless all my Fibromyalgia Family ❤
@@lisae6725 low dose naltrexone. Normal dose is 50mg. Low dose is 2.5-4.5mg daily. You can only get the normal dose of 50mg from your local pharmacy. Low dose is provided by compound pharmacies. They make it to order. In Australia it costs about $85 for 100 tabs.
YES, heat makes a HUGE Difference!! What a discovery in this video. I'm a male & have had Fribro for over 20 years. after being around the world with all kinds of specialists & drugs, my new Doctor (for 2 years) made the suggestion of LDN even though she knew I have had some very bad experiences with drugs. Yes, it is off label here in Australia too! (compounded) I'm 5 months into the trial & I have to say it has dropped the pain a small amount, but as with anyone with Fibro will tell you, that means heaps!! STRESS & Depression is a HUGE one for me (of course I've just lost my job so things are not good there!!) For years there has been almost no help ! I've even had Doctors say it's not real!! Try being a MAN with a disease that's usually in women! This has been GREAT !! Thank you!
@@deberiggs5204OMG 😢this is terrible, i have one brother out of 4 and myself who have it. What is this guy talking about ? He said [LDN]? Do you know what this is?
Im on year three, medication free!! I take 1 valarian root tab for relaxation, 2 or 3 for sleep, and take epsom salt baths 3 xs a week and use 100% castor oil as an after bath ĺotion. My nervous system has reversed its 'lightening bolt' responses and my brain no longer hyper focuses on pain which has ultimately rid me of anxiety! My immune system is no longer in fight mode!!
Amazing! Thank you for posting this. I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Trauma healing is also critical in order to recover. I will also try what you suggested. 🙏🏻❤️🙏🏻
@@EmergeAndSeeTherapeuticsThe 1st food ingredient to reduce as much as possible is sugar. I had a positive effect with switching to monk fruit as a sweetener & using honey. I’m allergic to artificial sweeteners.
Sleep absolutely agree. We sleep so poorly. But on good day when we are.awake and then actually sleep at night the next day if 100% better Pain is less, motivation increases brain fog reduces. When sleep os consistently poor the opposite is true
I was 36 years old and I was in so much pain! It felt like it was in the bones. But once my primary came out saying I had Fibromyalgia but she wanted me to get a second opinion with a Rheumatologist. It was strange because the day I got diagnosed so didn’t everybody else in the waiting room. I swear it felt like an epidemic of fibromyalgia. I am now 60 years old and have been suffering my whole life. When I take a shower it feels like I’m being shot at. Not that I know what being shot feels like. I did a study which I did Ta chi. That made me feel worse. Me personally I feel that if you were abused as a child your nervous system gets attacked. Then when your an adult your pain has tripled or more and your nervous system is really far gone now. Your nervous system has gone haywire. It’s a shame when I first got diagnosed I was treated like it was all in my head. I know my own body! I do know the difference between pain and no pain. Which here you are now discussing it. I’ve already figured it out 25 years ago but it’s all about the money. Oh let’s do this test let’s do that test. Enough already be straight about it. I’ve been addicted to pain meds. Then it’s pulled away from you cuz doctors got scared. I have been off the opioids for going on 6 years. Be honest with people!
Your right! Nothing those people/ doctors on here is of any help, we’ve heard it all before,none of it works. The only meds that helped me was steroids, I take less now,and I’m back to square one. It’s autoimmune disease and I’ve two others. I can do very little now without suffering. You give up in the end knowing there’s no help. Steroids are the only things that works when your on the right amount,but doctors are not happy for you to keep using them,and after 10 years I’ve had no side effects. I’m only on 3 mg now which is not enough but I have to go off them gradually. 😢
@@maureenrees636 I totally understand. Since being diagnosed with Fibromyalgia I also got Thyroid cancer, I had an ovariectomy. I had a lumpectomy in my breast I now have cirrhosis of the liver.. I have a cyst on my pancreas and a mass on my kidney. On top of bulging disc in my back I’m suppose to have metal taken out of my toe and have a bone infusion. But the day before I went to get clearance for surgery I got bite by a bug and bleed for 30 mins. I had to put elastics on my arm to stop the bleeding. The next morning I told my doctor what happen about bleeding and told her to check my coagulation. She had the nerve to tell me the surgeon didn’t put that on the paper. I was upset and said to her maybe you didn’t hear me! I bleed for 30 mins! She checked the coagulation and she texted me telling me not to have the surgery at this time. I have been thru so much I know my own body! Your absolutely right about the auto immune. These doctors want to tell you that you have this wrong with you but then they do nothing else to take care of you.. I could write books as you can see by my text. You hang in there. I will be praying.for you. 🙏Good luck sweetie. Much love ❤️
I was diagnosed in 2008, after I was hit by a drunk driver. It's 2023 and I still suffer from flares and chronic pain. I hope one day we all get relief and help. 😢
Thank you for hosting this informative webinar. You are correct that some doctors shy away from treating fibromyalgia patients. And the doctors that do don’t seem to be up to speed on latest treatments. The hope is that more providers become interested in educating themselves so patients can have better quality of life.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
In the grand scheme of things, i feel it's only safe to hope there will be effective treatments by the time my daughters are adults. I'm sadly part of the generation that will suffer while it's being figured out. But i hope to live long enough to see that day come and know there will be effective solutions for future sufferers and God forbid, my kids. Thank you for your continued studies. I didn't know anyone was even interested. 🙏🙏🙏
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I am 20 years old and have been diagnosed with fibromyalgia. All through my high school years I had immense pain and fitigue we spent 5 years looking for answers but got none. I literally felt like I was loosing my mind or that I was imagining things. But then I finally found the answer and have tried so many things to reduce the pain but to no success. I have pain almost every day all day and some days I can't even climb stairs or drive my car. So glad these are doctors are trying to find some answers.
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing is also critical in order to recover. 🙏🏻❤️🙏🏻
Soul sister Fibro friends 💗 love it Thank you both 🙏🏻 I cannot say this enough but having a doctor “hear me” validate me” is beyond therapeutic. It has brought me to tears, sobbing with gratitude. I have been diagnosed many years ago but have never been treated for it. Instead I am given additional DX such as insomnia, anxiety, MMD, depression, IBS & PTSD. Oh and we cannot forget about arthritis. This isn’t everything but it’s enough. I have isolated, disassociated myself, procrastinate, lack motivation & energy ….. it’s debilitating I suffer with chronic pain but don’t say so because I have all this other stuff. It feels hopeless 😞
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I was diagnosed with Fibro 39 years ago, before l was diagnosed my family including my mother thought l was a hypochondriac. Our local Arthritis Association started a Fibromyalgia clinic and l insisted all my family attend with me, even my daughter in law's went, they then wanted to do everything for me, but l told them they would turn me into a cripple that l was to young and l had to keep myself busy, l stayed working l was very lucky l was in business with my ex-husband so l could go in later in the morning. I am different with heat, l hate summer l have the air conditioner on 24/7 l also get a concession from the Australian government towards my electric bill. I am retired now but have COPD, Scoliosis plus Osteoporosis, it's a struggle but l haven't given up, l miss working in my garden but still do knitting for my little great grandsons.
I’ve been a critical care nurse, charge nurse, ER nurse, Recovery nurse, nursing instructor, and resident instructor. I’ve been dealing with a rare form of arthritis for more than 40 years, which was initially misdiagnosed and treated. It finally was properly diagnosed only 2 years ago. About that time, I was also diagnosed with fibromyalgia. I’m sorry to say I was one of those people who didn’t trust that it was a physical disorder. I was never disrespectful to a patient because I’ve understood chronic pain all my life, so I could relate to that. My rheumatologist was the one that helped me truly get a better picture of what it is. She explained it as nervous system overdrive and hypersensitivity. Like your whole nervous system is inflamed. Since that time, I have been seeking medical information that is most current. Thank you for bringing your information online for public study. And if you need a volunteer near Chicago for an expanded hot tub study, I’m in! 🤣🤣
An interesting listen. Having had fibromyalgia for about 15 years, here in the UK there is little interest from the medical profession. I have been refused any help with the pain, done long sessions with a pain clinic, which did not help at all. Have been made to feel like a time waster by my GP and refused an appointment by a hospital in an attempt to get some sort of help. Unless you have the money to explore other types of help or treatment you are doomed. I am retired now and resigned to a much reduced existence until the end.
I developed fibromyalgia after injuries in my early twenties. It has been a struggle my entire life. I changed my career from nursing to education and just pushed through the pain. It has been a tough journey. I appreciate your insight. Keep up the good work!
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
About 20 yrs ago I was dx with fibromyalgia. My gp and rheumatologist had me try different medications, but they stopped working after a while. Cymbalta worked really well for 9 yrs then it stopped helping. I finally found a dr in my area, who specialized in fibro, but he stopped seeing fibro patients a few weeks after my first visit. I've been accused of being an opiate seeker. The last dr i saw told me there was no reason i should have any chronic pain, that it was all in my head. I've given up seeking help. I'm not working anymore and more days are bad than good. I'm so depressed.
@@MultiFastie thank you for responding. I take the mag malate at the bottle recommended dosage. I'll check out the vit B increase. I take a B complex already, but 25:years ago I saw a naturopath who told me my body didn't absorb it very well. I took weekly B shots for a while until I couldn't pay for anymore treatment. Maybe since then, better absorbing supplements are available.
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The minute I saw Dr A Chadwick I jumped on this youtube. Dr Chadwick thank you for the youtube fibro talk at one of the lupus foundations, it made me feel like I am not crazy. Thank you for acknowledging the pain I’m experiencing was real. Dr Lipton in South Africa GPs and Specialists still treats Fibro as a disease that doesnt exist. Just a week ago the GP gave me some pain meds and told me that I only have menstrual cramps. So I asked her but what about my other intense pain I have all over and she brushed it off.
I have a problem with extreme weather conditions. The hot tub really helped, it was outside in MA, it was wonderful even in the winter. Unfortunately we are now in an apartment so we can’t have a hot tub. It used to help me sleep much better
It’s been such a frustrating journey to find a Dr here in the Cincinnati area, one that will even see someone with Fibromyalgia. Rheumatologist groups just refer you to somewhere else. The only Fibromyalgia-centered place has one doctor and she’s been on an extended leave - and won’t accept new patients. Tried to call their recommended alt doctor and they won’t answer the phone, haven’t called back. It’s not fun to keep hitting and missing and just try to deal with it myself. I’m seeing my orthopedic this week for this incredible neck/shoulder/arm pain and see if he can help and maybe direct me. 🤞 Thank you for all of the information you have shared!! 😊
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing and calming the nervous system are also critical in order to recover. 🙏🏻❤️🙏🏻
Such a great discussion and this helps me realize that people are still working on this condition. I have had Fibro for 13 yrs and very early on I was given treatment of Vitamin Infusion. It really helped me because it reduced my fatigue and allowed me to focus on other treatments. This is a amazing treatment option.
It's interesting you've mentioned Long Covid. My primary issues / decline began when I received the Covid Vaccine. When I look back on my health history, I've had mild symptoms for years, but it seems the Covid Vaccine kicked it into overdrive.
Me too I had my first COVID vaccine on January 06, 2021 then came home and found that the nation's capital was under siege. All that was so much stress and then I woke up the next day with what I believe was fibro though the doctor called it PMR polymyalgia rheumatica. But then later they said I had fibromyalgia.
This has been such an encouraging conversation! I have had fibromyalgia for the last 15 years and it has been and endless process of frustration that has been minimally overcome by my own self advocacy. Dr Liptan, i am buying 2 copies of your book so i can have one and will give the other to my pcp! I am super encouraged about the research that is happening!!!
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I in Western Canada and been diagnosed with fibromyalgia once when I was 30 again when I was like 42, and then again, after that, her a few years later. Everybody tries to give me advice on how to deal with it when they don't even have it or don't even know much about it they think they do. I'm glad that I ran across this webinar or talked with these two young ladies and all three you guys I should say it's been heartfelt, I do take that one drug which helps my mood swings trying to deal with the pain Cymbalta. It's it's helped me stabilize my pain a bit and I don't I don't baked I don't get teary-eyed but thank you so much I will be watching and little watching and listening to other things that you guys might have available about fibromyalgia. I hope this all makes sense. I am a little bit dyslexic. Thank you and much peace and love to everybody out there that listens to you guys and look out for that book and again thank you. ❤
I am one of those patients who has been diagnosed with fibromyalgia, but also possibly an undifferentiated connective tissue disease, or maybe even Bechets. My pain doctor started me on a compounded low-dose naltrexone, but it wasn't covered by any of my insurance. So, my regular doctor prescribed me 1/4 of a 50 mg tablet once a day, which is very close to the compounded version and it actually worked the same as the compounded version.
Thanks for this conversation, I'm so glad people like yourselves are investigating fibromyalgia. I was diagnosed 7years ago and feel that it is still looked down upon, the day to day is just see what gets thrown at me lol and cope as best I can
Thank you for believing your patients and listening to them. I feel embarrassed and uncomfortable telling new Dr’s I have been diagnosed with fibro because I never know what response I’m going to get. Physical therapy didn’t work for me but it started me on a path of movement in a pool and jacuzzi soak which has really helped my energy level. Unfortunately I moved to a very small town with no local pool so I had to stop a few months ago and I’m feeling the difference. I’ve been on low dose Neltrexon for a few months and you’re right, it cuts the pain, but I still have flares and there is always pain somewhere in my body. I’m excited about the research you are doing and hope there will be continued improvement in available treatment options. I’m so Glad to meet some new fibro friends.😊
Have been dealing with fibro for 43 years and am thrilled that it is finally being taken seriously. It's a shame that so much of my life has had to be devoted to dealing with this in addition to just trying to live a productive life... but at least my teenage relative who has had fibro for 8 or so years will have a brighter future.
I have found that half a cup of yoghurt and half a tsp each of cayenne. Cinnamon. Turmeric and ginger. Mix together and take every day. It definitely helps
Similar to Dr. Chadwick, my fibromyalgia symptoms began after being treated by a chiropractor I had never been to before, the day after I was rear ended from behind at a stop sign. I had received chiropractic treatment for many years but had moved to a new area. I believe he tore something in my neck, it burned and was so painful. I was never the same since then. This was 1998 and it took over a year to get a diagnosis. When I heard Dr. Chadwick mention the words, tear and neck I immediately connected it to that day.
Twenty-five years or so ago, I was taking so much pain medicine when I read that removing vegetable oils and margarine from my diet would help. Also adding selenium made a difference. Those changes made such a difference and I haven’t needed a prescription pain medicine since.
Thanks ! I am 77 have FM and also have chronic Lyme plus other ortho issues and circulatory problems. I also have had Covid. I was told when I was younger it was mental. Keep up the great work ! Nutrition was not mentioned but feel it is very important. Dr put me on immune protocol diet. Since taking out certain foods as a result it has helped.
I have had fibro for 60 years. I cannot do hot water. It feels good while I’m in the hot tub, but it greatly lowers my blood pressure. Because I’m on tramadol and want to get off of it, I tried low dose naltrexone. Both times I tried it, it flared my fibromyalgia for weeks. I was in absolute agony on the lowest dosage. Other medications have too many side effects. I have had four pulmonary embolism events over the past four years. That has affected my heart rate and fatigue negatively. My fibro pain and fatigue is now continuous. My lung damage has caused me to be on oxygen 24/7. I am blessed to have a close friend with fibro. I can vent to her on bad days and celebrate good days. It means the world to have someone close who understands.
Fibromyalgia is killing me, i have found as i got older i have more episodes of suffering and pain, hurt all over, been like this for many years, yes i am a man, stuff has ruined my life. I hope you medical people can help , its real...
Since it's rare to be seen by a doctor nowadays, the Nurse practitioner I asked for LDN warned me that I'll never be able to get pain meds if i am on LDN and have surgery one day. I had to practically arm wrestle her and still left without her permission/ prescription for LDN. I insisted she research it. I never went back and sought out a doctor who knew about LDN and was happy to give me permission to take it. It's given me significant relief. Long story short, be prepared to fight for LDN and possibly change doctors. (Low Dose Naltrexone)
Hi what country are you in , my doctor won’t give me LDN. So I just have to suffer you’d think a medication that helps people like us thy won’t give it ,…. But thy would rather give vaccine that’s not approved 😡
@@BernadetteDevlin-l6w I'm in the U.S. in the Midwest. Here is an idea, find a pharmacy that also does "Compounding" prescriptions. Compounding just means that pharmacy also actually makes some medicine themselves. Ask one of those pharmacists for a list of doctors who are prescribing LDN near your area. They are likely compounding the low doses of naltrexone for doctors in the area. You might even find a doctor who's willing to do a virtual visit with you if you can't travel to them. Also, google "naturopathic" doctors in your area and call their offices. I bet you'll find one who's heard of it and knows where to direct you. Main stream doctors are closed minded and stick to their dated, dusty textbooks from eons ago. I had to keep looking and begging and crawled my way until I found someone. I was actually prepared to travel to Texas where I knew there were doctors who prescribed it. It would've involved a long wait list but I was desperate. Luckily I found a doctor minutes from home who prescribes it to many of their patients and didn't give me any grief over trying 1 mg of LDN. They were happy to prescribe it for me. I do pay about $50 us dollars per month for it. But once you get your dosage figured out, they can compound a 3 month supply at a time and give a discount- but not all pharmacies may do that. Typically, it's prepared in a capsule form. I take mine as a, "trochie", which is just a sublingual tablet that dissolves under my tongue. My body absorbs it best that way but the capsules may work fine for you. I started noticing a slight difference within a couple weeks and continually my pain lessened. Started out with 1 mg and eventually worked up to 3 mg. I think you can go as high as 5 or 6 mg. Once you can find a doctor who is educated enough to prescribe it, they'll tell you all about that. My only side effect was drowsiness so I take it at night. No weight gain or other side effects for me. But although I'm mostly pain free, it doesn't help with fatigue. It was a YT video where compounding pharmacists and physicians were discussing the success they'd witnessed with patients taking LDN. They were all in Texas and that's why I mentioned TX. But there are more and doctors, mostly naturopaths- who have medical doctor degrees, who are prescribing LDN to patients. Good luck! It's hard to advocate for yourself when your body is so run down and in pain.
Thanks for the open conversation between two professionals ladies! I feel really terrible in the morning! Suffering since a teen...much worse in my old age😊
When I was able to use a hot tub for 30 full minutes every 3 days my pain, brain fog,depression and fatigue was extremely improved. During Covid that stopped and now my fibromyalgia is so severe I can't go.
I am game to be in clinical trials. I’ve had this for close to 40 years and suffer everyday. I’ve taken all kinds of medications and nothing helps. I am so tired of suffering. I’m willing to try anything.
Great discussion, thank you! I am also hopeful that the focus on long Covid may have flow-on benefits for fibromyalgia and CFS patients. I also use hot water therapy but I've found it most helpful with alternating cold water plunging. About 9 months ago I moved to be near sea baths with a thalassotherapy pool which is kept at 37 degrees Celsius. The water is filtered, heated sea water and very buoyant. I do ten minutes in the hot pool doing gentle stretching and loosening exercises, then go out and plunge in the sea to cool off, and repeat for three spells in the hot pool with two cold plunges. In winter the water in the bay is around 11-13 degrees Celsius, which is kind of shocking getting in but when you get out you feel like you've had six shots of espresso, no "fatigued" feeling! And getting back into the hot pool you tingle all over, which feels amazing. I find my pain is significantly reduced for three to four hours afterwards. During summer the bay is too warm to do the icy plunge so it's more of a lazy paddle, which isn't quite as effective. Unfortunately I haven't seen many swimming pools outside Scandinavia with cold plunge pools, so not many people would have access to this. A cold shower doesn't seem to have the same effect as immersion - I know because I've tried that on a few days when the beach has been closed due to a pollution event.
I am doing a remodel with an attached garage. I want to do a "bath" space eith warm cold water, and sauna. This vomment makes me think i want to make the baths big enough for four. We HAD a saltwater pt pool and they eemodelled snd it fidappeared. Its in a wharehouse somewhere close by and im trying to find it. .its stainless with a four foot area and a 6 foot space to immerse in. Perhaps i can get it myself then charge a nominal membership fee for keep up. I already do one on ones gor my doc when a new patient is fiagnosed to be jonest about how the work is THEIRS, NOT THE DOCTORS. who know mothing unless they have it too. The piint it IS in your head to GET UP.. regardless of pain. You MUST get up. May take an hour maybe two, but keep trying. Every move releases adrenaline, dopamine, ect.. you need to Stay Up.
The fact that many of the things that hep Fibromyalgia aren’t covered by insurance is really problematic with millions of people not being able to afford things that provide comfort and make their quality of life better and functioning better. There’s a lot wrong with our healthcare system to say the least. Then there’s the problem of trying to get on disability benefits which was another 3 years of hell and damn near made me feel like ending it. When you go from working to nothing, it is so extremely stressful because the wait time on average is over 2 years and there’s no guarantee that they will grant it to you either, so it makes for a very difficult time in more ways than one, especially if you have young children, or are a single parent. I wouldn’t wish any of this on anyone.
My fibromyalgia started after months of having costocondritis. I don't have pain, but I have chronic muscle fatigue all over my body. The costocondritis keeps my upper-body with constant rib stiffness/arthritis, while the fibromyalgia makes my muscles constantly weak and tired. This has changed my life, but I have to just deal with it. ... Nobody understands what my body feels. It's constant discomfort. I have to always take breaks to rest from the simplest activities. I exercise and stretch still, but very gently. I can only walk at a slow pace because I immediately get stiff and weak. Lying down is like paradise. ....I know doctors know little about this and have no solutions and little advice. Why waste the time and money?
After years of referrals, testing, labs with not answers to my struggle I was referred to a Pain Doctor. Magic! He validated me and my battle, and I was prescribed LDN. It has been a great adjunct my other meds, PT, Acupuncture, Message, Chiropractic Care, Heated Pool therapy and more. Thank you for your work on the disorder.
You both have blown my mind, after 25 years of no significant help - I have some hope again that this horrific condition will find answers. Thank you for all that you do! I believe I got fibro after getting partial transverse myelitis.(viral immune component ). 🙏🙏🙏
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
Yes I've had a therapedic hot tub which does air bubbles not jets!!!! I've research and have to be in my spa every morning at 103 for 10 minutes !!! I've been trying to get this on the medical supply list. I'm so glad you have seen what these spas do!!! It has saved my life and lowered the use of drugs.
I don't want to sound disrespectful, but having had fibro for some years now, I worked out almost immediately that a warm bathtub helps, as it does with other painful joint/muscle conditions. This has been part of my routine every morning, not a shower but a soak in the bath. Not sure just how this proves anything though, except something which has always been known - that warm water relieves pain.
Over ten years with the F word 😂 My healing was very difficult and long but, living was far from what I was doing! I used the SHINE PROTOCOL which means Sleep, hormones, infections, nutrition, exercise I started on AIP for a year then reintroduced foods one at a time and waited 2-3 days if no symptoms occurred added them back in to my diet. Weight lifting, yoga and what ever else my body could handle. Nervous system work is a must too. Bloodwork was a must to start off with low vitamin D, C reactive proteins SIBO/leaky gut is found in most people with Fibromyalgia too. Healing gut/brain is key 🔑 Now I follow a paleo lifestyle without seeds and nuts they still bother me to this day. Healing is a whole body approach. LDN is a great tool to start off with while you heal. ❤
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Thank you so much! I have been struggling with getting answers….you both have really helped me❤
I find this incredible I have always sat in hot bath I just new it helped,I have been without a bath for 2yrs and have been very sick pain and chronic fatigue
Love this video! Wish drs were more informed & caring. 10 years ago was dx with fibro, (age 50) I think I had it for many years before being diagnosed. I have had life of trauma which I believe triggered my poor health. I’ve moved to diff states so have seen new drs every few years. Many don’t believe in or understand fibro or cfs (which I believe I have- so does my therapist). My dr past 2 years blaming my weight & lack of exercise- makes me feel like I’m doing this all to myself so I just eat more cause I’m depressed & in pain- vicious cycle! I’m on cymbolta but doesn’t help with fatigue pain ibs brain fog migraines etc My biweekly massages are the only relief I get. But it’s very temporary. So frustrating to not live a full happy life and feel so unheard. I can’t get help or relief. Im in Upstate NY and am tired of going to dr after dr. Test after test. No answers & no help- loose weight. Well it’s not that simple. I don’t even make my own meals- hubby does everything for us. Shops for food, cooks, and works 2 jobs. I don’t eat well & don’t move around much. We are working on a better life plan - but it’s not like I want this- to be overweight, tired, and in pain. That’s all drs see. A lazy fat 60 yr old. That don’t know that I was a working mom of 3 always going doing everything for everyone. Ran my own business, was 100 lbs lighter and worked out at the gym- all before I got sick with mono/EBV then Fibro. Who would choose to become what I am now? It happened to me & drs I have seen- many- don’t see it that way.
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I was diagnosed w Fibrous in the '90 s, when most MD's, including my own husband at the time did not even acknowledge it as a 'real' illness. Thx to a Wonderful Rheumatologists I received the proper diagnosis and treatment In addition to medication.I found swimming in warm wayer, daily hotub for 20-30 min and massage. This I regimin helped be immensely😅❤
I’m almost 70, and have tried every treatment under the sun. The most effective Fibromyalgia treatment for me and many others was destroyed a few years ago by a movement begun by a meddling psychiatrist from the Northeast. I’m now back in bed almost all the time.
Doing what they did to us when we were young as part of Polio treatment at Sister Kenny Hospital. So now I have both Post Polio Syndrome and fibromyalgia
Fantastic discussion. Hubby supported our investment in a hot tub last year and I do daily, morning 45-minute treatments. And I do yoga and easy movements in the hot tub. Incredible. Hopefully with this upcoming study I can petition CRA (canada) to let me claim the annual expense in the medical part of my taxes. The hot tub coupled with LDN has been game changing for me. Took my from daily 9 to 6-7. To get LDN I had to educate my doc about it and luckily I found the 1 pharmacy in town who could do it. I had to experiment with titration. Turned out I had to do .5mg a time. And I have to take it exactly 2 hrs before bedtime and my nightly NDAID. So people need to play around to find what works for them. And it’s not covered by insurance regardless of how much I fight with them and it runs $100/mth. But worth it. Thanks for continuing the fight ladies. 😘😘😘😘
Appreciate you ladies. No one in our city wants to see fibro pts. Belbucca has helped me more than anything. Just need it more frequently since I am a ultrarapid metabollizer
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I was diagnosed over thirty years ago, and over time I have become in the severe Fibromyalgia and no way could I sit in a hot tub and feel relief on any level. I am mentally and physically drained just taking a hot shower. I find more relief using clay ice packs, and believe because our nerve and nervous system are the main focus, numbing nerve pain is very positive vs hot tubs and hot baths.
GOD bless you. I am a retired R.N. I can personally tell you Fibromyalgia is real. Honestly, when i first acquired it, I didn't believe I had that diagnosis. I was always very strong and a self motivated go getter. But, I learned the hard way how real it is. I follow Long Covid now. It is interesting. I absolutely know the immune system is intricately related. The body is a whole system unit so all fields of medicine are needed.
Wondering how one can try the methotrexate. How do we reach one of the doctors in your group. Also, is there on online support group for fibromyalgia. I am so happy to have come across this video, and to have come across such knowledgeable and charming women who understand this condition and are willing to think outside the box. Thank you. I am subscribed.
I've been on the maximum dose of methotrexate has not helped at all. Plus it is dangerous with certain other meds so check that with your pharmacist, just a suggestion...
Methotrexate gave my mom Fibrous in her lungs and she passed away from it. Look at the side effects! She was taking it for her RA. She also had FM. I would not do Methotrexate or meds in the same class, they decrease your immune response so you are also more likely to catch viruses including Covid
Hi amazing webinar Thank you for what you’re doing! You know that I found out (on my self) few years ago that Buprenorphine and Naloxone helped for fibromyalgia! I’ve been taking it with Lyrica and it really been helping a lot!
Since I went to new dr who gives me shots in mainly my shoulders--has tremendously helped my fibromyalgia pain😊 P.S. Nicole Villeneuve your my distant cousin did my genealogy 😊
I go to Aqua Therepy in a 95° Small pool with a few jets 2X per week and it helps tremendously! I've been doing it for 2 years. I would be in a wheel chair without it!. So glad I watched this!
I have lived in a hot climate for twenty years. For twenty seven years I have suffered with Fibromyalgia and latterly Arthritis. We thought that by moving to a warmer climate would help. When the temperatures get hotter, I suffer far more.
I'm dealing with my own medical mystery in 4 months my pain level 10. I have primary hyperparathyroidism 4mm nodule. I'm having more test done in 3 weeks. I'm hoping it's not fibromyalgia. Everything else has been ruled. This webinar was very informative. I want to thank Dr. Liptan and Dr. Chadwick for their hinesty.❤
I’m a 66 year old woman previously VERY active athlete, clean eater diagnosed with fibromyalgia 6 yrs ago at Mayo Rochester. 2 yrs ago diagniosed with motor sensory polyneuropathy. With in the 6 yrs I’ve had 2 fist full of other autoimmune conditions such as: costochondritis, IBS, interstitial cystitis, migraines, occipital migraines, osteoporosis to name a few. An ongoing and progressive symptom I have that I can’t seem to get an answer on is I have what I call attacks with an electrical build up that expodes into full body muscle spasms with involuntary tremors. With these explosions no matter what part of my body it originates it travels to my head into debilitating vertigo. When I feel an attack (most at night) I try deep breathing etc. but it often doesn’t help. Once I know it’s going into full blown attack I’ll take 10MG Baclofen which is very hard to swallow. If that doesn’t calm me with an hour all choke down another (thank God they are tiny.) I’ve had ALL the test: MRI, eeg, blood work & more run by my current Florida neurologist with NO answers other than….I don’t treat fibromyalgia 😢. The only other thing I take is CBD oil or gummy before bed to relax me. My hubby is the BEST care giver. He knows just what I need during these attacks. Raised bed (head), lots of pillows (I have to keep my arms & legs straight or the joint pain magnifies 10 fold), ice chips, weighted blanket to hold me down, gently massage (or NO). My question is….are full body muscle attacks a symptom of fibromyalgia and/or polyneuropathy? Thank you for ANY advice💜
I have had fibromyalgia for at least 33years that I know of. I think that I have every symptom possible to fibromyalgia. I hurt day in and day out. I had to go on disability due to the pain had gotten so bad about 11 years ago just before I turned 40 (I had such a hard time getting disability). My PCP had been so good working with me until I got bad and since then I have been at a pain clinic and in past year I finally was able to see a doctor who studied fibromyalgia, but my pain is still at a 10(-)6 on a good day which is very rare. I’m tired of taking all of the medication to help with different symptoms of fibromyalgia and all of the spinal injections and nerve blockers , to tell the truth they just don’t work. I hope that there is something found soon to help ease the pain or block it. I had been told back when I was in Science class for Nursing school that the worst thing to happen to the nervous system is to cut the the nerve to block our body from pain, but being at a pain of 10+ is the same thing, so if they seem to think a cut nerve is something that they have to fix then why can’t they find something to help me. I can be sitting on something hard or sharp and not feel the pain. I have burned my fingers so many time with my hot glue gun or wood burning tool, where if it was many others they would be in severe pain I do it and look at my fingers and go on. How can we get help that is actually going to help😢
After hearing the symptoms from Long Covid in 2021, I was hoping this would bring attention to FM…more awareness and treatment options. 🤞🏻 bring invisible illness to the surface finally.
Ladies, please hear me out. I have fibromyalgia and I cannot sit in a hot bathtub of water. It feels as if my body is boiling in pain. So I assumed that a hot tub jacuzzi would be the same. It is not! I married my husband who has a jacuzzi and almost every night I get in it and afterwards I sleep like a baby. Thank God I didn't assume all hot water is the same. I wish I could give all Fibromyalgia sufferers a jacuzzi, because it helps so much. Maybe it's the moving water that's not in a typical bathtub. Having said that, jacuzzis are not the answer. We need medication and funding. This illness has devastated my life, because the medical community has failed us. It's not in our heads and addressing that misconception should be a priority. Good luck everyone.
Go on to Cbd drops
Start with 5mg after 3 days if no improvements go to 10 mg I don't take opiods at all
I also use the OTO machine
Foot reflexology an the tenz machine
Darling I stopped Gabapentin Lyrica ampitrytaline 4 yrs now...
Because I take cannibi,s ..CBD Relieve by Rethink made in South Africa I take the drops it has tumeric and Unicaria in it
I cant stand a tenz machine its like torture. Tried that drug they came out with and the first 12 hours were great, felt like everything was relaxing. As the next few hours went on the feeling just kept increasing until i felt like i was going to explode. It was awful. i had to stop taking it immediately.
My pain jumps around from place to place.
I can have pain for a year in one area, then one day its just gone. Next day i have pain in a different spot.
My doctor retired snd left me having to find a doctor who wants to take me off the painkillers.
Im panicking inside. No idea how im going to handle the pain. I feel like i may be pushed into something that could ruin my life.
It's a terrible disease and no one really understands what im going through.
Edit: I remembered, it was Lyrica.
@@lorimiller4301 I feel the same about the tenz!!! It’s like a torture device!!
I also tried Lyrica and immediately wanted to kill myself (literally). I had to call 911 to have them take me in on a 5150 so that I didn't actually kill myself.
I definitely didn’t want to get this diagnosis because as a RN who worked in hospitals most of my career, I saw how terribly many nurses talked about patients who came in with a diagnosis that included Fibromyalgia…”You’re getting a patient in 206 with Fibro….have fun doing the Narc count later.” I kid you not! That’s probably the nicest way I’ve heard it talked about and these are nurses of all people! I have Osteoarthritis, Inflammatory Arthritis, Juvenile Discogenic Disease, Myofascial Pain Syndrome, and Fibromyalgia. I think my back is what caused it to develop along with extreme stress at the time. I had to stop working by age 42 because the pain and exhaustion were so bad I just couldn’t get up and go anymore. The last place I was working at before I altogether stopped was so horrible on my mental health that it damn near killed me, again, the people who treated me the worst were my own peers which really did a number on me mentally. That was a nursing home where I was the Clinician Nurse Manager for a locked 25 bed Dementia unit and the adjacent 30 bed unit…I went to this job thinking it would be easier and more manageable 😂 I was only there 6 months before I stopped working altogether and never returned. That was the lowest point of my life because I was in the process of going to Doctors trying to figure out what was wrong with me so I had to miss some work or leave early for appointments, so it was very problematic for my new employer who saw me as a problem and were not nice about it to say the least. It wasn’t just me though who thought they were extreme jerks because 16 LPNs and a new RN Graduate all quit in that same 6 month period. They treated their staff who worked extremely short on a daily basis, like crap. I ended up in bed for 6 months and lost my appetite from the pain and depression which left me loosing 40 pounds and looking like death warmed over…in fact, my kids were scared that I actually was going to die. Thankfully I got on some antidepressants and eventually pain medicine that pulled me back from the brink, but it’s been a long 11 years trying to figure out how to live with constant pain and all the other symptoms. I only recently accepted my fate which tells you exactly how hard it is to deal with on a multitude of levels. I’ve found the most difficult part of this illness is the way other people treat you and talk about you which in turn has caused me to become antisocial to a certain extent. I have brief periods where I rally but seem to always end up back in a rut and living in the coldest and most humid states certainly doesn’t help things, but I don’t want to live far away from my kids and grandkids so I have to deal with it. To anyone suffering or having a hard time managing their life because of Fibromyalgia, or any other illness, I hear you and hope that you will find a way to live your life the best way that you can. Hopefully there will eventually be some medical breakthroughs to make this condition more manageable or maybe even a cure!
Same same same! RN here, and extremely painful 100% of the time. This has been decades long. It’s exhausting. I have NEVER awoke feeling refreshed, instead, I wake up and cry tears, wishing the day will fly by so I can get back to bed. I’m terrified to add this dx to my list, because of the stigma, but I’m at my wits end and naming it may be a tiny bit therapeutic.
I too a RN and have this dreadful debilitating disease…
It hit me in my late 20’s.. but I continued on working FT.. till age 50.. it came on with a roar.. sciatica, couldn’t stand to be hugged, massaged, touched. With animals on me.. omg I wanted to throw them off me.. 😢.. nothing has helped.. I’m allergic to Gabapentin & Lyrica my whole body swelled.. my legs the worse.. Savella.. same reaction.
Now there are days my jaw locks up..
I have a tanning bed.. that I get in fully clothed towel over my face.. A hot tub too.. heated mattress pad.. I have to push myself to do anything…
Also I’m sensitive to electricity.. I get shocked a lot.. I’ve even had a electrician to my new house to make sure all is well.. I’m the only one that gets shocked..
Another issue.. Dental.. they can give me Novocain forever and the signs are there the medication was given but the effects hasn’t taken place.. I can talk normal.. seems my nose & back of my head gets numb but not my mouth…
Finding treatment will be greatly appreciated 😊😢
Ditto!!!! RN of 20 years and before that an LVN. If you had asked me about fibromyalgia 25 years ago I’d roll my eyes and say that I didn’t think it was real. Ironically, I was suffering from chronic muscle pain, extreme fatigue, insomnia and brain fog back then 🤦🏽♀️. I had to stop working at 51 due to debilitating depression and a year later when I felt mentally ready to go back to work, I had become physically disabled from inactivity. It’s impossible to get adequate care but I’ve found that physical therapy has been the best remedy so far. Heating pads, deep tissue massage and Rolfing has been lifesaving as well.
Ladies,
I was diagnosed with this terrible disease years ago when I was in my early 40's. I worked until I couldn't anymore. Idk what to do about the pain, I also have multiple other diseases to go along with it, I live in a small town and, my family doctor thinks I'm crazy for asking for pain meds, idk what to do, can someone please help me,? I can't take it anymore 🙏
@@naomiwarner7117 I know this kicks your butt.. when it flares I’m down like I have the flu… I was 3 days in bed…
Food does have a lot to do with flares… but I’ve not changed anything to know what it would be.. I do a lot of plant based meal replacements.. and that’s for protein.. it’s something I have to choke down.. caffeine don’t bother me..I’ve been using Premier Protein powder w/ caffeine / energy coffee flavor mixed with coffee .. 32oz 30mg of protein.. Also Nestle Good Night 10mg cozy cocoa .. take a hot shower and have my coffee to go walk… I walk twice a day 2 miles in the morning 2 in the evening.. and cleaning house I get the10,000 steps in.. but when I’m flared.. I don’t want to move..
Doctor you have is a male I assume… and they do look at you like you’re nuts..
Let me say.. the only thing you can do is ask for prescription to try.. I was allergic to all of them..
Lyrica and Savella..
Gabapentin aka Neurontin.. ( don’t take this long term)
Cymbalta.. anti-depressant but it also helps with hunger..
good luck keep us informed..
The stigma is most definitely still around, unfortunately 😢Thanks to these wonderful doctors for trying to help people who are really suffering.
DR RORPOPOR HERBAL ON TH-cam have the best fibromyalgia CURED in Africa..... natural herbs are the best...... ✍️
It's very good news about heat helping people with Fibromyalgia. I've had Fibro for 39+ years. I've used a Thermophore heating pad successfully, as well as warm water baths/ foot baths with Epsom salts.
I agree that working on calming down a hyper-body-mind system at night certainly helps create more successful sleep.
The sincerity here in each of you in providing excellent resources and techniques is heart warming. Thank you very much! ❤
I can't even get my family to understand how it effects me. 😕
Since the first time I started seeing testimonials about you Dr Igho you gave me full confidence and trust that i bought your herbal medicine that cured & took away my pain permanently, just as you stated in our interview, i finally got to say thank you so much and I highly recommend him to anyone looking for a qualified specialist.
@@tinadunbar4577same here. They think I am just malingering and plain lazy😩
I've had fibro for about 40 years, arthritis for 54 years. By trial and error, I have found that gentle water aerobics/stretching, in a warm pool, followed by 15 minutes in a hot tub, followed by a nap really helps me. It helps reduce stress, gave me better sleep and more mobility. It very important to get up and move periodically especially in a painful flare (which is the last thing you want to do).
I begin every day with a hot bath. I wake up so stiff, sore and achey, it really helps, most of the time. I have days when nothing helps.
Dityo here. 87 and have had fibro for 35 years after lymne disease
Ymca.. hot tube water walking backwards in cold pool and bike.
Days I cannot get out of bed but the Ymca. keeps me looking healthy even when I can barely move.
People always give compliments no matter how miserable I feel.
It feeds the ego but I still feel like hell.
Contact DR RORPOPOR HERBAL ON TH-cam and get cured totally 💯 good luck ✍️
@@anne-no2ic I hear you there. I’m 60 years old and I had a gentleman tell me he thought I was 30. I chuckled and said only if my body felt 30 instead of 90. Lol. But that was good for my ego. So I know what you mean. I can barely walk a block I have people pulling over asking if I’m ok. I thank them and just say it’s pain through my body. Strangers can be so kind at times.
In the winter time hot water bath is helpful but in summer time what do you do??
Thank you for this. I've suffered from disabling fibromyalgia for more than 20 years (and many years before I became disabled). It is heartening to me that you are sorting through this perplexing syndrome. Someday people will not need to suffer the torturous life I live.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I’ve been on a carnivore diet for a month and my pain is soooo much better as well as my arthritis. I’ve had Fibromyalgia for over 50 years and this is the first time I have had relief.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
@@conniehavlovick5263 can you mention doses?
I'm seeing a lot of very positive stories regarding carnivore for fibro. Keto did help me get back to my preillness weight level which was helpful.
I just recently was diagnosed with fibromyalgia. I honestly want to die because I'm in excruciating pain every day. I can't sit or stand, but lying down gives me a little relief. I hate taking pain pills, plus they don't really work. I've also experienced the stigma of being a patient with this disease. Thank you for the work you do in support of this debilitating disease.
I’m disabled from fibromyalgia and I’m only 41. Thank you to you all for doing what you do for all of us
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing is also critical in order to recover. 🙏🏻❤️🙏🏻
What a breath of fresh air to hear a conversation with two actual fibromyalgia specialists on new treatments! Dr. Lipton, it sounds like we’ve lived with this puzzle about the same amount of time, and both had a great deal to work out on our own. Dr. Chadwick, I’m in Kansas City, so why have I never come across your practice before? I’ll be looking into it tomorrow!
I’m a moderator on a Facebook group with over 7,000 members. Another member posted this video tonight and I’m very glad they did. Hopefully many members will be as happy as I am to hear about new treatments and an actual research lab! Thank you all for this wonderful chat.
Hi! What's the name of the Facebook group?
I was diagnosed about 25 years ago with Fibromyalgia, CFS, all the things that normally go along with Fibro. Could you please tell me the name of your group? I would love to look into it. TIA
@@lisamatson9915 Hi, I had posted it above, but it's gone now. It's called Fibromyalgia Support and the logo has a large purple butterfly. We have over 7K members and it's monitored extremely closely, no selling, no false information, we insists members treat each other respectfully, and so on.
I don't think you'll get in to see Dr. Chadwick. I had an appointment scheduled and was waiting, but the office called to say she had to cancel all new patients because she had been asked to take part in a study, possibly the one she is talking about but I thought they had told me back pain. So I see one of the other doctors there for pain meds and occasional injections but not any other things related to fibromyalgia.
I live on the beach in UK and I swim all year round. Cold water gherapy has helped me reduce my painkillers. I am definitely influenced by changes in barometric pressure/weather changes.
Yes me too, very affected by both. Living in a constantly changing environment is terrible.
DR RORPOPOR HERBAL ON TH-cam have the best fibromyalgia CURED in Africa..... natural herbs are the best...... ✍️
@@lorimiller4301 Contact DR RORPOPOR HERBAL ON TH-cam and get cured totally 💯 good luck ✍️
Yes i enjoy both the hot and cold water therapies... and definitely notice the weather/ barometric changes
I think weather is key
Learn from my experience. I was diagnosed with Fibromyalgia in 1999. A few years ago, I went gluten free and my IBS and migraines disappeared completely. Pain disappeared 80%. I have my life back again. Please try doing this for yourself, it's worth it. I've also eliminated sugar, soy, seed oils and processed foods which has also helped. Eat like you live on a farm, fresh foods only! God bless.
Did you feel improvement quickly ?
@@lubalaurens4003 I started to notice improvement after about 3 weeks of changing my diet. And slowly felt better and better as time passed.
Zasto to niste odmah uradili kada su vam dali dijagnozu?,nego posle 20god.
Me too! Same results 🤗... And stretching/ mediation too
Eat what grows on the earth and drink lots of water....
@@lubalaurens4003 Hi, sorry I did not see your reply until just now. When I initially went gluten free, I noticed an improvement after about 2 weeks and felt 80% better after 3 weeks. I didn't try eliminating the other stuff until about a year later because I didn't realize it would make a difference but after I finally tried, I noticed even more improvement. It's definitely worth a try! I hope you have great results like I did! :)
I just want the pain to stop. In all it’s forms. We’re not crazy, we’re not lazy, and we are NOT drug addicts. We want answers and solutions. Not snickers and stigmas. I am in pain and tired. I want my life back.
I get it. I had to look at emotional pain from my childhood and let go of a lot of fear and resentments. I had magnesium infusions at a pain clinic. I go to a heated magnesium pool when I can. I still have lots of magnesium before I sleep (mag glycinate from a compounding chemist that specialises in fibromyalgia). They recommend taking PEA. I have 10 Vic D3. per day and that helped a lot. I no longer have strong pain meds. I try to restrict my carbs and dairy intake.
I got better I believe you can too. Focus on having a cup half full rather than half empty.
Omg Sarah! You said EXACTLY what I've felt for 20+ yrs. I'm lucky to have a primary care physician that I've been going to for almost half my life, and he 100% understands that fibromyalgia is real. He has been treating me lately with Gabapentin, and since I am resigned to having to take SOMETHING or I'd lose my mind and will to live. Actually I've already been close to giving up at times. But having a dr that knows my issues are real helps more than I can say. I also have a partner who knows what I'm dealing with is NOT something anyone would choose. Life can be difficult enough, especially now with all the insanity in the world. I can't imagine not having my dr and partner in my life. I hope you have similar support 💜
I have had fibromylagia for about 15yrs and been all every med out there with no relief. I have been taking Low Dose Naltrexone for over a year now and am no longer on any other meds. It had truly been a blessing
That’s what I’ve been saying, But my GP won’t prescribe 😡
Fortunately I have an amazing PCP, compassionate and supportive, unfortunately my husband of nearly thirty years doesn’t understand that I am doing the best I can. He’s angry and impatient. I went from primary bread winner and primary parent to struggling to function. I stuck it out as long as I possibly could. I’ve tried providing my husband with information about fibromyalgia (I also have other diagnoses) through videos and books and articles, he is just not interested. THAT, combined with my inability to work are the worst aspects imo… I have no hope left nor the strength to seek hope. I genuinely feel like a waste of space and a tremendous burden on my family. Fibro robs you of the opportunity to live.
If you are unable to work, you should apply for Social Security Disability. You will need to go see a Rheumatologist and get diagnosed first.
Do you have a support group /people other than your husband? The first person should be him yes, and I can image how disappointing, overwhelming and painful your journey with these life changing circumstances. Fight for you, give yourself patience, don’t tolerate being devalued, your people will come when you focus on learning to cope first then have protocol for your flareups
I totally understand
I'm so very sorry to hear that your husband isn't supportive. I bet you feel so lonely. Do you have any loved ones who do understand and help support you? Please don't feel like you are a burden to your family. You are important! Yes, this damn disease is a hidden monster. Sometimes I wish I had cancer instead because I'd have more access to medical staff support, compassion, treatment and drugs. And if treatments or drugs didn't work then I could pass on instead of living in terrible pain for 30 more years. You are blessed to have a doctor who cares about your well-being!!!! Please don't forget that you are worthy of help from your husband.
Thank you all for your kind and supportive comments. I am on SSDI, while I don’t want to seem ungrateful because I am very much appreciative of it, SSDI doesn’t support a family of four. The ability to support my family was a sense of pride and accomplishment for me that is still a struggle to overcome. I cut off all ties with my family of origin years & years ago. Unfortunately, when one faces adversity of any type in life, true friends are revealed. While some hung in there longer than others, I have no friends remaining. I understand. It’s hard to understand what it’s like to have a broken body that is unpredictable. All the best intentions will not make this body function at a specific moment in time so attempting to make plans to maintain friendships failed miserably. I do not complain or whine but sometimes, a lot of times, it is literally a struggle to get out of bed. Since I first posted my above comment, my husband has taken baby steps towards being understanding. Unfortunately, we have a long way to go and with progress comes backsliding. Maybe it just needs more time, although I received the first of my many diagnoses nearly two decades ago, I managed to keep my employment for the first decade or so. I guess he liked his life better before, when I was responsible for nearly everything and he only had to work once in a while. He did not anticipate the drastic changes that awaited us, in all fairness neither did I. I pushed through the pain and exhaustion until I literally couldn’t. My bosses both local & corporate as well as both corporate and local HR sat down with me to discuss their concerns, they could see the changes in me and could see how much pain I was in without me saying a word. Fortunately, that played a role in receiving SSDI the first time I applied. Kinda weird to think that supervisors, even supervisors who did not interact with me regularly, could see my struggles and the man I chose to spend my life with couldn’t. Gosh, I’m just rambling away here. So sorry! You are all so kind to offer your thoughts. I really appreciate it! I do get support from my psychologist and my doctor, I am genuinely grateful for them, far too many times people cannot find support in the medical community. Again, thank you, all of you! ❤️
I have fibromyalgia for over 30 years, i find when I lay down in warm water my pain gets better while I’m under the warm water but it comes back right away when I come out.
I am 69 & had fibro all my life. Diagnosed at Mayo Clinic in MN. I've tried many things & the only thing that helped was Tramadol which stopped working after about 7 years.
Had to quit work & I just do minimal.
Now only take occasional tylenol or ibuprofen. It's been a rough life.
May I ask how many Tramadol you took in a day?
DR RORPOPOR HERBAL ON TH-cam have the best fibromyalgia CURED in Africa..... natural herbs are the best...... ✍️
Becky Dee I’m sorry it’s been a rough life. I’m in the same boat as you I had to leave a multi million dollar billing company plus I bar tendered and waitressed working 7 days a week. I was a single mother of 2. All at once I was getting diagnosed with Fibromyalgia, Thyroid cancer, Ovariectomy, bladder suspended I wonder why I was in pain! I had all that going on at 36 years old. I’m 60 now with bulging disc in my back. Arthritis in my knees and I had separated my big toe from my foot so I have my toe put together with metal. I was put on opiates and got addicted. August will be 6 years clean from opiates. I try to move everyday but there are some days I can’t put my feet on the ground. I pray 🙏 for all my fellow suffering brothers and sisters that we get some relief from pain. If only I could have 1 hour a day I would be so happy. Much love to you all ❤️
Diane what do you think of the low dose Naltrexone? Since you are off opiods maybe you are a good candidate ?
@@cyyoung9175 ime in it 6 months effects mood though no help with skeleton pain but helps ibs
Thank you for all of the medical professionals who are tackling this problem on behalf of those of us who have suffered for many decades with this affliction. And thanks to everyone who comments on here because it was a very lonely world 43 years ago to think that no one else understood what I was going through, and now I have friends that I have never met, who understand what I live with. thank you for just being here. !
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I was diagnosed in 1996 when I was fifty, after going from doctor to doctor looking for what was wrong. I was originally thought to have lupus, but that was ruled out. I finally found a doc that said to me…”I have good news and bad news”…it won’t kill you, but you will be in pain for the rest of your life! He was right on the one hand, I’m still alive at 77, but I have managed to understand over the years what triggers my pain and how to deal with it. I’m mostly affected by weather changes, and when I eat carbohydrates. November and March are the worse months for me, besides changes in the barometer. When the days and nights are mostly around the same temps, I have less pain, so spring and late fall are the most painful for me. I especially don’t eat lots of carbs during those times just to try and avoid any bad days. As I look back pre diagnosis, I realize I had fibro long before I was diagnosed, tiredness, and the big one was when someone hugged me, it was painful, as my main symptoms were in my upper body and hands, and I eventually avoided hugs, which was unfortunate.
WOW, someone who has voiced how I feel. Hugs do hurt, handshakes are the worst.
I've been suffering for 30+ years. My Dr. doesn't know much about fibromyalgia, even though he did diagnose me. I live in constant pain and I'm always exhausted as well.😊
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Oh please dear lord let there be a breakthrough for this evil disease. I’m sooooo tired. I’m 66 yrs old I live in Australia and am soooo desperate to have someone listen to me. 😢 I cry so much with the all over pain have been diagnosed with fibro about 5 yrs ago Any info/ support would be greatly appreciated. I really valued this video. Good job girls and a BIG THANK YOU 🦋 God Bess
Have a go at mushroom very much effective , you can easily get some mushroom supplements through albovegateway, very much effective good for brain chemistry and overall wellness
How do I reach them?
On Instagram.
There is a cure for fibromyalgia it's on TH-cam recently
I was diagnosed in 2013. In 2011 I had complications after major abdominal surgery. My wound opened and became necrotic. Wound therapy treatment for several months and it took a year for the wound to close. I battled with anxiety attacks, sleep problems and all over pain. I was finally diagnosed by a Rheumatologist in 2013. I find that many health care providers don't have a clue about this condition. Do you think that Fibromyalgia needs a new name? The stigma is definitely there and I believe affects the quality of care we receive.
100% agree. Change the name!
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing and calming the nervous system are also critical in order to recover. 🙏🏻❤️🙏🏻
I’m an RN and was assaulted at my place of employment. I suffer from PTSD and from there dx with fibromyalgia . I haven’t worked since the assault in 2019. Medications have nit been effective. I’m from Ontario Canada and it’s really not taken seriously . I’m isolated and hopeless .
I am so sorry to have read your text that you feel hopeless I have fibromyalgia also some other autoimmune issues. I'd be happy to talk to you or text you or support you
🙏🏻
I'd be happy to talk to you. I sometimes feel the same way you do.
Many times, illnesses don't get properly researched until an actual doctor or researcher or someone close to them is stricken with it. That's the motivator to get the powers that be to pay attention to it.
Agree with you ...and sadly I have to say that I'm glad some medical professionals have had to face what we face and now we are getting the attention that we need. And don't forget that a few celebrities have it too. I believe Lady Gaga and Morgan Freeman both have it.
@@phyllisjulian7101 and so many more men are being diagnosed. That will really help since lazy doctors blame so much on female problems.
@@phyllisjulian7101 and more men are getting it. And long COVID suffers. Those two groups have really turned up the heat for us imo.
I have been diagnosed with Fibromyalgia, CFS/ME and Small Nerve Fiber Neuropathy. When I heard you talk about hot baths....I had to comment. That would be torture for me. I couldn't can't think of anything worse that have a hot bath! I cannot stand being in or near hot water. So much so that I cannot have baths. Instead, I have barely warm showers. When I had hot showers, I struggled to dry myself as I'd sweat profusely for upto 20 to 30 minutes which was so frustrating to get dried. I even struggle washing dishes because having my hands in hot water affects me in that I feel so uncomfortable, faint and sweaty.
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I also cannot tolerate very hot showers or baths. I get faint, dizzy, nauseous, and weak. I enjoy hot tubs but no way I could sit in one for 45 minutes....10 to 20 min. at most, and the air needs to be cool or cold.
I dread bathing and showering because of how it feels and afterwards. I put it off and put it off, which is mentally draining. Why can't I just get washed like a normal person aaaaaah.😢
Thank you both for what you are doing for Fibromyalgia. I have Fibromyalgia for 35 years, LDN has changed my life, try it, and see the benefits for yourself. God Bless all my Fibromyalgia Family ❤
What is LDN if I may ask?
@@lisae6725 low dose naltrexone. Normal dose is 50mg. Low dose is 2.5-4.5mg daily. You can only get the normal dose of 50mg from your local pharmacy. Low dose is provided by compound pharmacies. They make it to order. In Australia it costs about $85 for 100 tabs.
I didn’t find it helpful for me, but many have found relief. I’m happy that you are one of them!
What is LDN?
@@kotabell8173 Low Dose Naltrexone (LDN)
YES, heat makes a HUGE Difference!! What a discovery in this video. I'm a male & have had Fribro for over 20 years. after being around the world with all kinds of specialists & drugs, my new Doctor (for 2 years) made the suggestion of LDN even though she knew I have had some very bad experiences with drugs. Yes, it is off label here in Australia too! (compounded) I'm 5 months into the trial & I have to say it has dropped the pain a small amount, but as with anyone with Fibro will tell you, that means heaps!! STRESS & Depression is a HUGE one for me (of course I've just lost my job so things are not good there!!) For years there has been almost no help ! I've even had Doctors say it's not real!! Try being a MAN with a disease that's usually in women! This has been GREAT !! Thank you!
My entire family has it, including my brother.
@@deberiggs5204OMG 😢this is terrible, i have one brother out of 4 and myself who have it. What is this guy talking about ? He said [LDN]? Do you know what this is?
Im on year three, medication free!! I take 1 valarian root tab for relaxation, 2 or 3 for sleep, and take epsom salt baths 3 xs a week and use 100% castor oil as an after bath ĺotion. My nervous system has reversed its 'lightening bolt' responses and my brain no longer hyper focuses on pain which has ultimately rid me of anxiety! My immune system is no longer in fight mode!!
Amazing! Thank you for posting this. I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Trauma healing is also critical in order to recover. I will also try what you suggested. 🙏🏻❤️🙏🏻
@@EmergeAndSeeTherapeuticsThe 1st food ingredient to reduce as much as possible is sugar. I had a positive effect with switching to monk fruit as a sweetener & using honey. I’m allergic to artificial sweeteners.
@@cavgrey8 thank you. I’m working on that. Monk fruit is great. Already feeling better. 🙏🏻
Sleep absolutely agree. We sleep so poorly. But on good day when we are.awake and then actually sleep at night the next day if 100% better
Pain is less, motivation increases brain fog reduces. When sleep os consistently poor the opposite is true
Yes!! Find a solution to help us sleep!!! Everything is better with sleep! That is the answer to the cure!!
I was 36 years old and I was in so much pain! It felt like it was in the bones. But once my primary came out saying I had Fibromyalgia but she wanted me to get a second opinion with a Rheumatologist. It was strange because the day I got diagnosed so didn’t everybody else in the waiting room. I swear it felt like an epidemic of fibromyalgia. I am now 60 years old and have been suffering my whole life. When I take a shower it feels like I’m being shot at. Not that I know what being shot feels like. I did a study which I did Ta chi. That made me feel worse. Me personally I feel that if you were abused as a child your nervous system gets attacked. Then when your an adult your pain has tripled or more and your nervous system is really far gone now. Your nervous system has gone haywire. It’s a shame when I first got diagnosed I was treated like it was all in my head. I know my own body! I do know the difference between pain and no pain. Which here you are now discussing it. I’ve already figured it out 25 years ago but it’s all about the money. Oh let’s do this test let’s do that test. Enough already be straight about it. I’ve been addicted to pain meds. Then it’s pulled away from you cuz doctors got scared. I have been off the opioids for going on 6 years. Be honest with people!
Your right! Nothing those people/ doctors on here is of any help, we’ve heard it all before,none of it works. The only meds that helped me was steroids, I take less now,and I’m back to square one. It’s autoimmune disease and I’ve two others. I can do very little now without suffering. You give up in the end knowing there’s no help. Steroids are the only things that works when your on the right amount,but doctors are not happy for you to keep using them,and after 10 years I’ve had no side effects. I’m only on 3 mg now which is not enough but I have to go off them gradually. 😢
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@@maureenrees636 I totally understand. Since being diagnosed with Fibromyalgia I also got Thyroid cancer, I had an ovariectomy. I had a lumpectomy in my breast I now have cirrhosis of the liver.. I have a cyst on my pancreas and a mass on my kidney. On top of bulging disc in my back I’m suppose to have metal taken out of my toe and have a bone infusion. But the day before I went to get clearance for surgery I got bite by a bug and bleed for 30 mins. I had to put elastics on my arm to stop the bleeding. The next morning I told my doctor what happen about bleeding and told her to check my coagulation. She had the nerve to tell me the surgeon didn’t put that on the paper. I was upset and said to her maybe you didn’t hear me! I bleed for 30 mins! She checked the coagulation and she texted me telling me not to have the surgery at this time. I have been thru so much I know my own body! Your absolutely right about the auto immune. These doctors want to tell you that you have this wrong with you but then they do nothing else to take care of you.. I could write books as you can see by my text. You hang in there. I will be praying.for you. 🙏Good luck sweetie. Much love ❤️
And steroids is not a pathway you can take when you are diabetic ...it wreaks Havoc with your blood sugar
I was diagnosed in 2008, after I was hit by a drunk driver. It's 2023 and I still suffer from flares and chronic pain. I hope one day we all get relief and help. 😢
Thank you for hosting this informative webinar. You are correct that some doctors shy away from treating fibromyalgia patients. And the doctors that do don’t seem to be up to speed on latest treatments. The hope is that more providers become interested in educating themselves so patients can have better quality of life.
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
In the grand scheme of things, i feel it's only safe to hope there will be effective treatments by the time my daughters are adults. I'm sadly part of the generation that will suffer while it's being figured out. But i hope to live long enough to see that day come and know there will be effective solutions for future sufferers and God forbid, my kids. Thank you for your continued studies. I didn't know anyone was even interested. 🙏🙏🙏
This is the way that I feel ... I too have a young relative who has been diagnosed with fibro
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I am 20 years old and have been diagnosed with fibromyalgia. All through my high school years I had immense pain and fitigue we spent 5 years looking for answers but got none. I literally felt like I was loosing my mind or that I was imagining things. But then I finally found the answer and have tried so many things to reduce the pain but to no success. I have pain almost every day all day and some days I can't even climb stairs or drive my car. So glad these are doctors are trying to find some answers.
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing is also critical in order to recover. 🙏🏻❤️🙏🏻
Soul sister Fibro friends 💗 love it
Thank you both 🙏🏻
I cannot say this enough but having a doctor “hear me” validate me” is beyond therapeutic. It has brought me to tears, sobbing with gratitude.
I have been diagnosed many years ago but have never been treated for it. Instead I am given additional DX such as insomnia, anxiety, MMD, depression, IBS & PTSD. Oh and we cannot forget about arthritis. This isn’t everything but it’s enough. I have isolated, disassociated myself, procrastinate, lack motivation & energy ….. it’s debilitating
I suffer with chronic pain but don’t say so because I have all this other stuff.
It feels hopeless 😞
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Good luck 😊
Your description is identical to me.
How old are you Kim?
@@Atom-56 late 50’s
@@GiMom19 good luck ❤️
I was diagnosed with Fibro 39 years ago, before l was diagnosed my family including my mother thought l was a hypochondriac. Our local Arthritis Association started a Fibromyalgia clinic and l insisted all my family attend with me, even my daughter in law's went, they then wanted to do everything for me, but l told them they would turn me into a cripple that l was to young and l had to keep myself busy, l stayed working l was very lucky l was in business with my ex-husband so l could go in later in the morning. I am different with heat, l hate summer l have the air conditioner on 24/7 l also get a concession from the Australian government towards my electric bill. I am retired now but have COPD, Scoliosis plus Osteoporosis, it's a struggle but l haven't given up, l miss working in my garden but still do knitting for my little great grandsons.
Thank-you doctors for working on this,so many of us are suffering and need heroes like you!
I’ve been a critical care nurse, charge nurse, ER nurse, Recovery nurse, nursing instructor, and resident instructor. I’ve been dealing with a rare form of arthritis for more than 40 years, which was initially misdiagnosed and treated. It finally was properly diagnosed only 2 years ago. About that time, I was also diagnosed with fibromyalgia. I’m sorry to say I was one of those people who didn’t trust that it was a physical disorder. I was never disrespectful to a patient because I’ve understood chronic pain all my life, so I could relate to that. My rheumatologist was the one that helped me truly get a better picture of what it is. She explained it as nervous system overdrive and hypersensitivity. Like your whole nervous system is inflamed. Since that time, I have been seeking medical information that is most current. Thank you for bringing your information online for public study. And if you need a volunteer near Chicago for an expanded hot tub study, I’m in! 🤣🤣
An interesting listen. Having had fibromyalgia for about 15 years, here in the UK there is little interest from the medical profession. I have been refused any help with the pain, done long sessions with a pain clinic, which did not help at all. Have been made to feel like a time waster by my GP and refused an appointment by a hospital in an attempt to get some sort of help. Unless you have the money to explore other types of help or treatment you are doomed. I am retired now and resigned to a much reduced existence until the end.
Hi you are in UK did you try LDN .?
I developed fibromyalgia after injuries in my early twenties. It has been a struggle my entire life. I changed my career from nursing to education and just pushed through the pain. It has been a tough journey. I appreciate your insight. Keep up the good work!
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
About 20 yrs ago I was dx with fibromyalgia. My gp and rheumatologist had me try different medications, but they stopped working after a while. Cymbalta worked really well for 9 yrs then it stopped helping. I finally found a dr in my area, who specialized in fibro, but he stopped seeing fibro patients a few weeks after my first visit. I've been accused of being an opiate seeker. The last dr i saw told me there was no reason i should have any chronic pain, that it was all in my head. I've given up seeking help. I'm not working anymore and more days are bad than good. I'm so depressed.
@@MultiFastie thank you for responding. I take the mag malate at the bottle recommended dosage. I'll check out the vit B increase. I take a B complex already, but 25:years ago I saw a naturopath who told me my body didn't absorb it very well. I took weekly B shots for a while until I couldn't pay for anymore treatment. Maybe since then, better absorbing supplements are available.
I agree and good luck everyone watching.
I have had fibromyalgia since 1997, and back at that time Dr's didn't know what to think about it I suffered 😢
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The minute I saw Dr A Chadwick I jumped on this youtube. Dr Chadwick thank you for the youtube fibro talk at one of the lupus foundations, it made me feel like I am not crazy. Thank you for acknowledging the pain I’m experiencing was real.
Dr Lipton in South Africa GPs and Specialists still treats Fibro as a disease that doesnt exist. Just a week ago the GP gave me some pain meds and told me that I only have menstrual cramps. So I asked her but what about my other intense pain I have all over and she brushed it off.
I have a problem with extreme weather conditions. The hot tub really helped, it was outside in MA, it was wonderful even in the winter. Unfortunately we are now in an apartment so we can’t have a hot tub. It used to help me sleep much better
It’s been such a frustrating journey to find a Dr here in the Cincinnati area, one that will even see someone with Fibromyalgia. Rheumatologist groups just refer you to somewhere else. The only Fibromyalgia-centered place has one doctor and she’s been on an extended leave - and won’t accept new patients. Tried to call their recommended alt doctor and they won’t answer the phone, haven’t called back. It’s not fun to keep hitting and missing and just try to deal with it myself. I’m seeing my orthopedic this week for this incredible neck/shoulder/arm pain and see if he can help and maybe direct me. 🤞
Thank you for all of the information you have shared!! 😊
Hi. I’m in the NKY area. Dr Varghese is my rheumatologist near Thomas More. She’s wonderful.
@@jodiwood1905 thank you!!
Have you found ones? Please share his name.
I’m doing a ton of research and I’m about to start an overhaul on my diet and I am finally feeling hopeful that this will have a significant improvement on my health. Some days are so brutal. Up until a year ago I was a fitness and yoga teacher. I can’t work anymore. I refuse to accept this as my fate. Don’t give up. Trauma healing and calming the nervous system are also critical in order to recover. 🙏🏻❤️🙏🏻
Such a great discussion and this helps me realize that people are still working on this condition. I have had Fibro for 13 yrs and very early on I was given treatment of Vitamin Infusion. It really helped me because it reduced my fatigue and allowed me to focus on other treatments. This is a amazing treatment option.
It's interesting you've mentioned Long Covid. My primary issues / decline began when I received the Covid Vaccine.
When I look back on my health history, I've had mild symptoms for years, but it seems the Covid Vaccine kicked it into overdrive.
Me too I had my first COVID vaccine on January 06, 2021 then came home and found that the nation's capital was under siege. All that was so much stress and then I woke up the next day with what I believe was fibro though the doctor called it PMR polymyalgia rheumatica. But then later they said I had fibromyalgia.
Stop the cvd19 nonsense.
This has been such an encouraging conversation! I have had fibromyalgia for the last 15 years and it has been and endless process of frustration that has been minimally overcome by my own self advocacy. Dr Liptan, i am buying 2 copies of your book so i can have one and will give the other to my pcp! I am super encouraged about the research that is happening!!!
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
I in Western Canada and been diagnosed with fibromyalgia once when I was 30 again when I was like 42, and then again, after that, her a few years later. Everybody tries to give me advice on how to deal with it when they don't even have it or don't even know much about it they think they do. I'm glad that I ran across this webinar or talked with these two young ladies and all three you guys I should say it's been heartfelt, I do take that one drug which helps my mood swings trying to deal with the pain Cymbalta. It's it's helped me stabilize my pain a bit and I don't I don't baked I don't get teary-eyed but thank you so much I will be watching and little watching and listening to other things that you guys might have available about fibromyalgia. I hope this all makes sense. I am a little bit dyslexic. Thank you and much peace and love to everybody out there that listens to you guys and look out for that book and again thank you. ❤
I am one of those patients who has been diagnosed with fibromyalgia, but also possibly an undifferentiated connective tissue disease, or maybe even Bechets. My pain doctor started me on a compounded low-dose naltrexone, but it wasn't covered by any of my insurance. So, my regular doctor prescribed me 1/4 of a 50 mg tablet once a day, which is very close to the compounded version and it actually worked the same as the compounded version.
Thanks for this conversation, I'm so glad people like yourselves are investigating fibromyalgia. I was diagnosed 7years ago and feel that it is still looked down upon, the day to day is just see what gets thrown at me lol and cope as best I can
Thank you for believing your patients and listening to them. I feel embarrassed and uncomfortable telling new Dr’s I have been diagnosed with fibro because I never know what response I’m going to get. Physical therapy didn’t work for me but it started me on a path of movement in a pool and jacuzzi soak which has really helped my energy level. Unfortunately I moved to a very small town with no local pool so I had to stop a few months ago and I’m feeling the difference. I’ve been on low dose Neltrexon for a few months and you’re right, it cuts the pain, but I still have flares and there is always pain somewhere in my body. I’m excited about the research you are doing and hope there will be continued improvement in available treatment options. I’m so Glad to meet some new fibro friends.😊
Have been dealing with fibro for 43 years and am thrilled that it is finally being taken seriously. It's a shame that so much of my life has had to be devoted to dealing with this in addition to just trying to live a productive life... but at least my teenage relative who has had fibro for 8 or so years will have a brighter future.
I've had Fibromyalgia for 23 years. I was diagnosed when I was 24yrs. This has been so insightful. Thank you so much! Great video 😊
I have found that half a cup of yoghurt and half a tsp each of cayenne. Cinnamon. Turmeric and ginger. Mix together and take every day. It definitely helps
Similar to Dr. Chadwick, my fibromyalgia symptoms began after being treated by a chiropractor I had never been to before, the day after I was rear ended from behind at a stop sign. I had received chiropractic treatment for many years but had moved to a new area. I believe he tore something in my neck, it burned and was so painful. I was never the same since then. This was 1998 and it took over a year to get a diagnosis. When I heard Dr. Chadwick mention the words, tear and neck I immediately connected it to that day.
Twenty-five years or so ago, I was taking so much pain medicine when I read that removing vegetable oils and margarine from my diet would help. Also adding selenium made a difference. Those changes made such a difference and I haven’t needed a prescription pain medicine since.
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amazon has sauna blankets for approximately 160 dollars that will give you the heat laying on a bed very similar effect as a hot tub.,
I use a heating blanket under me it’s cheaper and does really help pain.
Thanks ! I am 77 have FM and also have chronic Lyme plus other ortho issues and circulatory problems. I also have had Covid. I was told when I was younger it was mental. Keep up the great work ! Nutrition was not mentioned but feel it is very important. Dr put me on immune protocol diet. Since taking out certain foods as a result it has helped.
You had a common cold.
Thank you I’ve had fibromyalgia for about 47 yrs
I have had fibro for 60 years. I cannot do hot water. It feels good while I’m in the hot tub, but it greatly lowers my blood pressure. Because I’m on tramadol and want to get off of it, I tried low dose naltrexone. Both times I tried it, it flared my fibromyalgia for weeks. I was in absolute agony on the lowest dosage. Other medications have too many side effects. I have had four pulmonary embolism events over the past four years. That has affected my heart rate and fatigue negatively. My fibro pain and fatigue is now continuous. My lung damage has caused me to be on oxygen 24/7. I am blessed to have a close friend with fibro. I can vent to her on bad days and celebrate good days. It means the world to have someone close who understands.
Fibromyalgia is killing me, i have found as i got older i have more episodes of suffering and pain, hurt all over, been like this for many years, yes i am a man, stuff has ruined my life. I hope you medical people can help , its real...
Since it's rare to be seen by a doctor nowadays, the Nurse practitioner I asked for LDN warned me that I'll never be able to get pain meds if i am on LDN and have surgery one day. I had to practically arm wrestle her and still left without her permission/ prescription for LDN. I insisted she research it. I never went back and sought out a doctor who knew about LDN and was happy to give me permission to take it. It's given me significant relief.
Long story short, be prepared to fight for LDN and possibly change doctors.
(Low Dose Naltrexone)
Hi what country are you in , my doctor won’t give me LDN. So I just have to suffer you’d think a medication that helps people like us thy won’t give it ,…. But thy would rather give vaccine that’s not approved 😡
@@BernadetteDevlin-l6w I'm in the U.S. in the Midwest. Here is an idea, find a pharmacy that also does "Compounding" prescriptions. Compounding just means that pharmacy also actually makes some medicine themselves. Ask one of those pharmacists for a list of doctors who are prescribing LDN near your area. They are likely compounding the low doses of naltrexone for doctors in the area. You might even find a doctor who's willing to do a virtual visit with you if you can't travel to them.
Also, google "naturopathic" doctors in your area and call their offices. I bet you'll find one who's heard of it and knows where to direct you. Main stream doctors are closed minded and stick to their dated, dusty textbooks from eons ago. I had to keep looking and begging and crawled my way until I found someone. I was actually prepared to travel to Texas where I knew there were doctors who prescribed it. It would've involved a long wait list but I was desperate. Luckily I found a doctor minutes from home who prescribes it to many of their patients and didn't give me any grief over trying 1 mg of LDN. They were happy to prescribe it for me. I do pay about $50 us dollars per month for it. But once you get your dosage figured out, they can compound a 3 month supply at a time and give a discount- but not all pharmacies may do that.
Typically, it's prepared in a capsule form. I take mine as a, "trochie", which is just a sublingual tablet that dissolves under my tongue. My body absorbs it best that way but the capsules may work fine for you. I started noticing a slight difference within a couple weeks and continually my pain lessened. Started out with 1 mg and eventually worked up to 3 mg. I think you can go as high as 5 or 6 mg. Once you can find a doctor who is educated enough to prescribe it, they'll tell you all about that. My only side effect was drowsiness so I take it at night. No weight gain or other side effects for me. But although I'm mostly pain free, it doesn't help with fatigue.
It was a YT video where compounding pharmacists and physicians were discussing the success they'd witnessed with patients taking LDN. They were all in Texas and that's why I mentioned TX. But there are more and doctors, mostly naturopaths- who have medical doctor degrees, who are prescribing LDN to patients.
Good luck! It's hard to advocate for yourself when your body is so run down and in pain.
Thanks for the open conversation between two professionals ladies! I feel really terrible in the morning! Suffering since a teen...much worse in my old age😊
Great discussion! I love the synergy of Dr. Chadwick and Dr. Liptan! Thank you Nicole and Swing Care team.
When I was able to use a hot tub for 30 full minutes every 3 days my pain, brain fog,depression and fatigue was extremely improved. During Covid that stopped and now my fibromyalgia is so severe I can't go.
I am game to be in clinical trials. I’ve had this for close to 40 years and suffer everyday. I’ve taken all kinds of medications and nothing helps. I am so tired of suffering. I’m willing to try anything.
Same here. I'm so sick of being in pain all the time. 40+years doctors aren't helping.
Great discussion, thank you! I am also hopeful that the focus on long Covid may have flow-on benefits for fibromyalgia and CFS patients. I also use hot water therapy but I've found it most helpful with alternating cold water plunging. About 9 months ago I moved to be near sea baths with a thalassotherapy pool which is kept at 37 degrees Celsius. The water is filtered, heated sea water and very buoyant. I do ten minutes in the hot pool doing gentle stretching and loosening exercises, then go out and plunge in the sea to cool off, and repeat for three spells in the hot pool with two cold plunges. In winter the water in the bay is around 11-13 degrees Celsius, which is kind of shocking getting in but when you get out you feel like you've had six shots of espresso, no "fatigued" feeling! And getting back into the hot pool you tingle all over, which feels amazing. I find my pain is significantly reduced for three to four hours afterwards. During summer the bay is too warm to do the icy plunge so it's more of a lazy paddle, which isn't quite as effective. Unfortunately I haven't seen many swimming pools outside Scandinavia with cold plunge pools, so not many people would have access to this. A cold shower doesn't seem to have the same effect as immersion - I know because I've tried that on a few days when the beach has been closed due to a pollution event.
I am doing a remodel with an attached garage. I want to do a "bath" space eith warm cold water, and sauna.
This vomment makes me think i want to make the baths big enough for four.
We HAD a saltwater pt pool and they eemodelled snd it fidappeared. Its in a wharehouse somewhere close by and im trying to find it. .its stainless with a four foot area and a 6 foot space to immerse in.
Perhaps i can get it myself then charge a nominal membership fee for keep up.
I already do one on ones gor my doc when a new patient is fiagnosed to be jonest about how the work is THEIRS, NOT THE DOCTORS. who know mothing unless they have it too.
The piint it IS in your head to GET UP.. regardless of pain. You MUST get up. May take an hour maybe two, but keep trying. Every move releases adrenaline, dopamine, ect.. you need to Stay Up.
45 min is way too long
The fact that many of the things that hep Fibromyalgia aren’t covered by insurance is really problematic with millions of people not being able to afford things that provide comfort and make their quality of life better and functioning better. There’s a lot wrong with our healthcare system to say the least. Then there’s the problem of trying to get on disability benefits which was another 3 years of hell and damn near made me feel like ending it. When you go from working to nothing, it is so extremely stressful because the wait time on average is over 2 years and there’s no guarantee that they will grant it to you either, so it makes for a very difficult time in more ways than one, especially if you have young children, or are a single parent. I wouldn’t wish any of this on anyone.
My fibromyalgia started after months of having costocondritis. I don't have pain, but I have chronic muscle fatigue all over my body. The costocondritis keeps my upper-body with constant rib stiffness/arthritis, while the fibromyalgia makes my muscles constantly weak and tired. This has changed my life, but I have to just deal with it.
... Nobody understands what my body feels. It's constant discomfort. I have to always take breaks to rest from the simplest activities. I exercise and stretch still, but very gently. I can only walk at a slow pace because I immediately get stiff and weak. Lying down is like paradise.
....I know doctors know little about this and have no solutions and little advice. Why waste the time and money?
After years of referrals, testing, labs with not answers to my struggle I was referred to a Pain Doctor. Magic! He validated me and my battle, and I was prescribed LDN. It has been a great adjunct my other meds, PT, Acupuncture, Message, Chiropractic Care, Heated Pool therapy and more. Thank you for your work on the disorder.
You both have blown my mind, after 25 years of no significant help - I have some hope again that this horrific condition will find answers. Thank you for all that you do! I believe I got fibro after getting partial transverse myelitis.(viral immune component ). 🙏🙏🙏
I suffered 7 years until I took These supplements, which worked for me in 2 days! --> Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
Yes I've had a therapedic hot tub which does air bubbles not jets!!!! I've research and have to be in my spa every morning at 103 for 10 minutes !!! I've been trying to get this on the medical supply list. I'm so glad you have seen what these spas do!!! It has saved my life and lowered the use of drugs.
I don't want to sound disrespectful, but having had fibro for some years now, I worked out almost immediately that a warm bathtub helps, as it does with other painful joint/muscle conditions. This has been part of my routine every morning, not a shower but a soak in the bath. Not sure just how this proves anything though, except something which has always been known - that warm water relieves pain.
ABSOLUTELY!!!! Duh!!
I can't get out of the tub once I get in, so the hot baths are not an option for me. 😢
I'm still convinced that our myofascia is part of the puzzle to fibro pain.
Over ten years with the F word 😂 My healing was very difficult and long but, living was far from what I was doing! I used the SHINE PROTOCOL which means Sleep, hormones, infections, nutrition, exercise I started on AIP for a year then reintroduced foods one at a time and waited 2-3 days if no symptoms occurred added them back in to my diet. Weight lifting, yoga and what ever else my body could handle. Nervous system work is a must too. Bloodwork was a must to start off with low vitamin D, C reactive proteins SIBO/leaky gut is found in most people with Fibromyalgia too. Healing gut/brain is key 🔑 Now I follow a paleo lifestyle without seeds and nuts they still bother me to this day. Healing is a whole body approach. LDN is a great tool to start off with while you heal. ❤
Thank you so much!
I have been struggling with getting answers….you both have really helped me❤
Thanks to all. This was an excellent discussion. Well done.
I find this incredible I have always sat in hot bath I just new it helped,I have been without a bath for 2yrs and have been very sick pain and chronic fatigue
Love this video! Wish drs were more informed & caring. 10 years ago was dx with fibro, (age 50) I think I had it for many years before being diagnosed. I have had life of trauma which I believe triggered my poor health.
I’ve moved to diff states so have seen new drs every few years. Many don’t believe in or understand fibro or cfs (which I believe I have- so does my therapist).
My dr past 2 years blaming my weight & lack of exercise- makes me feel like I’m doing this all to myself so I just eat more cause I’m depressed & in pain- vicious cycle!
I’m on cymbolta but doesn’t help with fatigue pain ibs brain fog migraines etc
My biweekly massages are the only relief I get. But it’s very temporary.
So frustrating to not live a full happy life and feel so unheard.
I can’t get help or relief. Im in Upstate NY and am tired of going to dr after dr. Test after test. No answers & no help- loose weight. Well it’s not that simple. I don’t even make my own meals- hubby does everything for us. Shops for food, cooks, and works 2 jobs.
I don’t eat well & don’t move around much. We are working on a better life plan - but it’s not like I want this- to be overweight, tired, and in pain.
That’s all drs see. A lazy fat 60 yr old.
That don’t know that I was a working mom of 3 always going doing everything for everyone. Ran my own business, was 100 lbs lighter and worked out at the gym- all before I got sick with mono/EBV then Fibro.
Who would choose to become what I am now? It happened to me & drs I have seen- many- don’t see it that way.
Africa's, doctor's like DR RORPOPOR fibromyalgia on TH-cam who cured I and my boyfriend herpes ❣️ we have been having this sickness for 4 year's now, but with the help of DR RORPOPOR HERBAL on TH-cam we are free ✨✨✨✨✨
I was diagnosed w Fibrous in the '90 s, when most MD's, including my own husband at the time did not even acknowledge it as a 'real' illness.
Thx to a Wonderful Rheumatologists I received the proper diagnosis and treatment
In addition to medication.I found swimming in warm wayer, daily hotub for 20-30 min and massage. This I regimin helped be immensely😅❤
DR RORPOPOR HERBAL ON TH-cam have the best fibromyalgia CURED in Africa..... natural herbs are the best...... ✍️
I’m almost 70, and have tried every treatment under the sun. The most effective Fibromyalgia treatment for me and many others was destroyed a few years ago by a movement begun by a meddling psychiatrist from the Northeast. I’m now back in bed almost all the time.
Why the secret? What treatment?
Doing what they did to us when we were young as part of Polio treatment at Sister Kenny Hospital. So now I have both Post Polio Syndrome and fibromyalgia
Fantastic discussion. Hubby supported our investment in a hot tub last year and I do daily, morning 45-minute treatments. And I do yoga and easy movements in the hot tub. Incredible. Hopefully with this upcoming study I can petition CRA (canada) to let me claim the annual expense in the medical part of my taxes. The hot tub coupled with LDN has been game changing for me. Took my from daily 9 to 6-7. To get LDN I had to educate my doc about it and luckily I found the 1 pharmacy in town who could do it. I had to experiment with titration. Turned out I had to do .5mg a time. And I have to take it exactly 2 hrs before bedtime and my nightly NDAID. So people need to play around to find what works for them. And it’s not covered by insurance regardless of how much I fight with them and it runs $100/mth. But worth it. Thanks for continuing the fight ladies. 😘😘😘😘
Re LDN cost. I dilute a 50mg tablet and it cuts cost from 1$ a day to .25
We will be moving this summer to a one level home- no stairs! A hot tub is on top of my list. Enjoy yours
Not everyone with fibro can handle the heat. My body does not do well in heat.
Florida humidity was a killer
Appreciate you ladies. No one in our city wants to see fibro pts. Belbucca has helped me more than anything. Just need it more frequently since I am a ultrarapid metabollizer
Africa's, doctor's like DR RORPOPOR fibromyalgia on TH-cam who cured I and my boyfriend herpes ❣️ we have been having this sickness for 4 year's now, but with the help of DR RORPOPOR HERBAL on TH-cam we are free ✨✨✨✨✨
I was diagnosed over thirty years ago, and over time I have become in the severe Fibromyalgia and no way could I sit in a hot tub and feel relief on any level. I am mentally and physically drained just taking a hot shower.
I find more relief using clay ice packs, and believe because our nerve and nervous system are the main focus, numbing nerve pain is very positive vs hot tubs and hot baths.
In 1984 my mother was put on prednisone, she lost 4 inches of height. Prednisone ruined her health.
GOD bless you. I am a retired R.N. I can personally tell you Fibromyalgia is real. Honestly, when i first acquired it, I didn't believe I had that diagnosis. I was always very strong and a self motivated go getter. But, I learned the hard way how real it is.
I follow Long Covid now. It is interesting. I absolutely know the immune system is intricately related. The body is a whole system unit so all fields of medicine are needed.
Wondering how one can try the methotrexate. How do we reach one of the doctors in your group. Also, is there on online support group for fibromyalgia. I am so happy to have come across this video, and to have come across such knowledgeable and charming women who understand this condition and are willing to think outside the box. Thank you. I am subscribed.
I've been on the maximum dose of methotrexate has not helped at all. Plus it is dangerous with certain other meds so check that with your pharmacist, just a suggestion...
Methotrexate gave my mom Fibrous in her lungs and she passed away from it. Look at the side effects! She was taking it for her RA. She also had FM. I would not do Methotrexate or meds in the same class, they decrease your immune response so you are also more likely to catch viruses including Covid
Hi amazing webinar
Thank you for what you’re doing!
You know that I found out (on my self) few years ago that Buprenorphine and Naloxone helped for fibromyalgia! I’ve been taking it with Lyrica and it really been helping a lot!
Since I went to new dr who gives me shots in mainly my shoulders--has tremendously helped my fibromyalgia pain😊
P.S. Nicole Villeneuve your my distant cousin did my genealogy 😊
I go to Aqua Therepy in a 95° Small pool with a few jets 2X per week and it helps tremendously! I've been doing it for 2 years. I would be in a wheel chair without it!. So glad I watched this!
I would love aqua therapy
I have lived in a hot climate for twenty years. For twenty seven years I have suffered with Fibromyalgia and latterly Arthritis. We thought that by moving to a warmer climate would help. When the temperatures get hotter, I suffer far more.
I'm dealing with my own medical mystery in 4 months my pain level 10. I have primary hyperparathyroidism 4mm nodule. I'm having more test done in 3 weeks. I'm hoping it's not fibromyalgia. Everything else has been ruled. This webinar was very informative. I want to thank Dr. Liptan and Dr. Chadwick for their hinesty.❤
Praying for you ❤ I’m going through my medical mystery right now too.
I’m a 66 year old woman previously VERY active athlete, clean eater diagnosed with fibromyalgia 6 yrs ago at Mayo Rochester. 2 yrs ago diagniosed with motor sensory polyneuropathy. With in the 6 yrs I’ve had 2 fist full of other autoimmune conditions such as: costochondritis, IBS, interstitial cystitis, migraines, occipital migraines, osteoporosis to name a few. An ongoing and progressive symptom I have that I can’t seem to get an answer on is I have what I call attacks with an electrical build up that expodes into full body muscle spasms with involuntary tremors. With these explosions no matter what part of my body it originates it travels to my head into debilitating vertigo. When I feel an attack (most at night) I try deep breathing etc. but it often doesn’t help. Once I know it’s going into full blown attack I’ll take 10MG Baclofen which is very hard to swallow. If that doesn’t calm me with an hour all choke down another (thank God they are tiny.) I’ve had ALL the test: MRI, eeg, blood work & more run by my current Florida neurologist with NO answers other than….I don’t treat fibromyalgia 😢. The only other thing I take is CBD oil or gummy before bed to relax me. My hubby is the BEST care giver. He knows just what I need during these attacks. Raised bed (head), lots of pillows (I have to keep my arms & legs straight or the joint pain magnifies 10 fold), ice chips, weighted blanket to hold me down, gently massage (or NO). My question is….are full body muscle attacks a symptom of fibromyalgia and/or polyneuropathy? Thank you for ANY advice💜
I have had fibromyalgia for at least 33years that I know of. I think that I have every symptom possible to fibromyalgia. I hurt day in and day out. I had to go on disability due to the pain had gotten so bad about 11 years ago just before I turned 40 (I had such a hard time getting disability). My PCP had been so good working with me until I got bad and since then I have been at a pain clinic and in past year I finally was able to see a doctor who studied fibromyalgia, but my pain is still at a 10(-)6 on a good day which is very rare. I’m tired of taking all of the medication to help with different symptoms of fibromyalgia and all of the spinal injections and nerve blockers , to tell the truth they just don’t work. I hope that there is something found soon to help ease the pain or block it. I had been told back when I was in Science class for Nursing school that the worst thing to happen to the nervous system is to cut the the nerve to block our body from pain, but being at a pain of 10+ is the same thing, so if they seem to think a cut nerve is something that they have to fix then why can’t they find something to help me. I can be sitting on something hard or sharp and not feel the pain. I have burned my fingers so many time with my hot glue gun or wood burning tool, where if it was many others they would be in severe pain I do it and look at my fingers and go on. How can we get help that is actually going to help😢
YES !! These Docs get it !! Thanks so much. Real Fibro Warriors !
I had Covid and that same month my tongue started tingling, I had a nervous breakdown, and then a couple of months later, I got hit with fibromyalgia…
After hearing the symptoms from Long Covid in 2021, I was hoping this would bring attention to FM…more awareness and treatment options. 🤞🏻 bring invisible illness to the surface finally.
Stop the covid 19 stupidity.