It’s worse because we need help and when people don’t believe you, they won’t help you. If we had a visible disease, churches and government helps you get the food and housing you need.
Worst, when I cane to ER in pain and feeling as though a wire is stuck in my throat, they decided that I was delusional “unspecified psychosis” and locked me up in a mental hospital for 3 weeks, cut my Wellbutrin and Amytriptaline cold turkey. I don’t dare to go to ER ever since and started studying all related medical conditions.
I had symptoms of Crohn's disease for years but didn't have insurance. When I got insurance I went to the Dr and found out it was absolutely Crohn's disease.since January 2024 I have been in so much pain.it started in my arms. Boe it's going into my whole body. I can't get out of bed, it's so hard to even take a shower on my own. I am 41 years old,female from Washington state. I'm using my boyfriends TH-cam haha 😊. I am so sick everyday.I am about to start a caregiving job. M so nervous. It's going to be rough
Prophet Mohammed ( p.b.u.h) said , “there is healing in black seeds ( nigella seeds) for every thing except death “. We Muslims generally use nigella seeds and honey for cure of every disease and that helps a lot . Give it a try , just few seeds every day , around 7 or 9 seeds every day first thing in the morning, chew them and drink little warm honey water . Honey should be around 1/2 a teaspoon 🌸
I suspect that fibromyalgia is an autoimmune disorder of some kind. I have a different autoimmune disorder and have most of the same symptoms that people with fibro get, but not as severe. Something causing chronic inflammation, if I had to guess.
Fibromyalgia is a disfunction of the pain system. What is a nociplastic pain? "Nociplastic Pain is a term used to describe persistent pain that arises from altered nociception, despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors, or evidence for disease or lesion of the somatosensory system causing the pain."
It really takes someone like this lady to dedicate their time to study, and hopefully find, the reason for such a challenging disorder. Family doctors seem very tight-lipped about it, evading questions related to it, as if they're not quite convinced of its reality. I'm inclined to believe it is a Central Nervous System issue, possibly related to osteoarthritis of the spine and other areas; multiple areas in the body affected by the syndrome would appear to be overloaded with pain signals, as well as stiffness, poor sleep, heat intolerance, tinnitus, peripheral neurophy, various sensitivities, sleep apnea, thirst, etc., and of course, severe fatigue. It would be marvellous if this study brought forth the key to unlocking the mystery. It would be life changing for millions of people around the world. So glad it is being so closely studied. Thank you.
What is a nociplastic pain? "Nociplastic Pain is a term used to describe persistent pain that arises from altered nociception, despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors, or evidence for disease or lesion of the somatosensory system causing the pain." Fibromyalgia is a disfunction of the pain system. I've been ill since 1982, almost 43 years. I've spent most of that time studying, investigating and researching Fibromyalgia.
Thank you for your research. The worst thing someone says to me is “you don’t look like you’re in pain”. no one seems to truly understand unless they have it as well. I took pain meds for awhile but then you start to rely on it more and more. It didn’t take away the pain as much as I wanted but for awhile it helped me mentally deal with the depression from constant pain. But eventually I realized it was changing who I was. Having an alternative medicine would be amazing. I can barely work with out the meds but addiction isn’t worth it. I fight the pain on a daily basis I get down more often but my head is clear. Again thank you for giving me hope for a pain free life.
I have had fibromyalgia for almost 25 years. I really think I had it many years before. When I was first diagnosed, there was only one book to read about it. As I read the book the author explained her pain and how she felt daily. It was exactly the way I had explained mine to other people. Being hit by a Mac truck etc. Thank you for researching fibromyalgia.
Oh yes! I have said many times that I feel as though I have been slammed by a semi, thrown through the air and slammed onto the concrete. Or I feel that I have been beat by strong men using cement bats. No joke. Since ‘72. The pain has steadily worsened until I cry and beg for death. Cruel!
I was hyper mobile but it has caused so much arthritis that my joints are no longer very mobile. I was diagnosed in 1998 after my first son’s birth. I thought it would help if the doctors knew but it was the opposite. I stopped telling even the doctors until lyrica made adverts and doctors were better informed.
I was recently diagnosed with Fibromyalgia. Prior to my diagnosis, I told my doctor that I felt like my autoimmune system was broken, triggering my inflammatory to go haywire. She sent me through a battery of tests… which led to a diagnosis: Fibromyalgia. I was thrilled to hear that after a lifetime of pain, I finally had a diagnosis. However, after learning about what it was and that there was no cure, I was depressed for a few weeks. I am currently on my own journey of vitamin D and K supplements, Magnesium Glycinate supplements, gentle stretches, and a clean diet of colorful fruits and vegetables. I am hopeful that this lifestyle change will help my body to heal. Much blessings to us, to be able to wake up just “one” morning, able to get a full body stretch, feel rejuvenated from a good nights sleep, and enjoy a new day.🥰
I lost my entire active life. I had to underperform throughout the life, like a handicapped person. Please do good research and find a solution for this problem so that the coming generations are a bit relieved.
When I was told I was in remission with my Lupus, shortly afterward I was told the pain I was having was fibromyalgia. I live in pain every day and nights are the worst. Can't remember the last time I slept through a night without chronic pain and meds are useless. My estranged mother says I'm making it up to seek attention. I keep it to myself as much as possible to avoid being accused as being a hypochondriac. It's not only physically debilitating but emotionally debilitating and there is no quality of life. PLEASE FIND A CURE.
The FDA is in the process of approving a new drug for fibromyalgia called tonmya. You should talk to your doctor about it soon. It is supposed to be approved in the next few months if all goes well with the FDA trials.
I have so many issues and I’m currently in the midst of a MECFS attack. I don’t know where to turn I have been fighting for 41 years now. It started with an accident then degeneration if the spine. Next was treatment, traction, PT, injections and eventual surgery. All that was prior to the diagnosis of fibromyalgia. Ff years injections, medication constant malaise and limited mobility, a dozen MRIS a dozen doctors, ultrasound plus plus. Finally in November of 2018 I was really struggling. I couldn’t eat anything I couldn’t tolerate any heat including showers, leaning to the right and losing strength in my arm. I besides maximum pain and malaise I felt like someone was squeezing my rib cage and grabbing it underneath to twist my torso. To this point the GP was useless. She was a PA she made fun of me . Anyway I googled everything I was experiencing together and I found a document on the MS HUG . This fit my symptoms nearly perfectly. I asked for the Gp to get it ruled out. Fast forward to the Neurologist and omg 😳 I nearly fainted in her office. Pinched nerves bulging and collapsed disc’s Neuromuscular Scoliosis 😮 huh I had 12 MRIs. Of course I had Fibromyalgia,arthritis, bursitis, tendinitis, MECFS, CPTSD, osteoarthritis, osteoporosis, anemia carpal tunnel and thats not all. I think you get the grim picture. I have had 5 surgeries and that has helped me a bit but its good day bad days. I can’t exert my body past basic needs. I know this is a year old but maybe you will see it. I’m desperate for help and thank you for your support and dedicated fight. 🤗
Oooo 😮 thank you 🙏 I’m a fibromyalgia patient ❤ Luckily my Doctor is a good one and believes me and helps but I have no friends left as they think I’m a liar 😢
Been suffering for over 3 and a half years. Still not diagnosed they say nothing is wrong and I can’t even get out of bed anymore. Every single symptom too even had one doctor say fibromyalgia was not a real condition
Thank you and your team for taking on the mystery of fibromyalgia. I am a 58 year old male who had Lyme disease 28 years ago and now I have been dealing with fibromyalgia for 15 years now. I had my aortic valve replaced (mechanical valve) at age 36 and have been on blood thinners since and will be for the rest of my life. That means I an unable to take NSAIDS to help with the pain. I have been on opioids since 2012. They do help a lot and I do not get any kind of high from taking them. That with Wellbutrin and Gabba allow me to have reduced pain 4 out of 10 most days. I have most symptoms associated with fibromyalgia especially low back and neck pain both areas showing DDD. For those of us that have been struggling with this for a long time feel alone and understood. I have hope after seeing this video that some day I will be normal.. Thank you again for your much appreciated work and dedication.
I am so happy to know this wonderful Lady is trying to find ways of helping people with Fybromyalgia I am 68 years old and have suffered with this since I was 40 years old. I found that using a hand drill helped my pain because of the vibration. After 2 months of using a drill gave me back movements in my arms and shoulders. Good Luck.
This made me so happy. I have had fibromyalgi 10 years, and I have no life qualite left. Singel mum, working and thats is what I cope. My Dreams is that your science can find som medicin who can help us. Good work ❤
This worked in 2 days!!!!!!! (I suffered 7 hellish years.) 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.
Be very careful with vit. B6. About 60% of us have at last 2 MTHFR gene mutations and we can be poisoned by relatively low levels of B6, even the best P5P type of B6. I took all the things you did and got permanent nerve damage in my feet from only taking 1/3 of the amt. of B6 I was told to take. I am still taking the others, though I found Mg bisglycinate works better for me than Mg threonate. I've had FMS for 38 years. We are all so different!
I am going to try this. 34 years plus of pain and misery. B6 has helped with some symptoms in past years. Tired of prescriptions that only do so much. Sleep helps. Less stress. Prayers and meditation and family and pets. God Bless all who are suffering. You are not alone. Keep the faith.
Excellent combo of supplements, but please be careful with the amount of B6. It is not truly water soluble like the other B vitamins, and if you have any MTHFR gene mutations, and most people with Fibro have a couple of them, you could get B poisoning at the doses often recommended. I did, and I have permanent neuropathy in my feet as a result. The Neurologist told me she wished she had a C-note for every case of B6 toxicity she'd had to diagnose that year (2016) and told me never to take more than the RDA again, which is only 2 mgs. If not previously tosic, she said you can get away with about 15 mgs. maximum. This includes the preferred form of B6, P5P. I used P5P and still became toxic.
I have had fibromyalgia since’72. The chronic pain has progressively worsened. I feel as though I am in a terrible nightmare. No answers, no help and my Kaiser pain specialist asked me, “you do know that Euthanasia is legal in California.”. That was his comment when I asked what people like me (all chronic pain sufferers!) were supposed to do when we are denied pain relief. Kaiser in Northern California.
Im am so so sorry those words were even said to you. Just horrific. 💔💔💔💔 sending you a virtual butterfly ((hug)). You matter. I matter. We have to keep going forward
I’ve been where you are am very sorry you’re suffering so bad. I’m using Low dose naltrexone and it’s made a difference to the suffering I use to go through. It can be a great help and I can’t recommend more to look into it and possibly give it a try. Wishing you the best.
Thank you for your dedication to understanding this syndrome. It’s living hell! More doctors need to do this. Many doctors know nothing about fibromyalgia and it’s a shame.
I was diagnosed with fibromyalgia about eight years ago but the pain was there many years before that and my doctor does believe the pain is there but keeps telling me its all stress and anxiety related and i get the feeling like he is saying to me its all in your mind😔
I was diagnosed with fibromyalgia in my late 30s. I swear not one Dr has addressed this condition. I had a stroke at 59 the left side is paralyzed it hurts 24/7. I was diagnosed in my forties with Lupus. By blood tests. Honestly not one Dr will give me pain meds for fear of addiction. I can't wait to die! I have no life! I cry everyday with pain. My nerves are shot, loud sound, I scream! Crying kids I go to pieces. I don't have an electric cart so I'm in house 24/7 but for Dr appts. I've been diagnosed by Cleveland Clinic with severe heart failure I have chest pain, rapid heat, erratic beating. I so wish I could afford to go to Switzerland for assisted death. No human being should feel pain 24/7 and be denied pain meds! I'm going to die anyway. It's cruel and unusual punishment. I'm afraid of street pain meds cause they can cause death, I'm not suicidal but I can't die this way it's suicide and goes against God's words 🙏🏼 🛐😭💔😢
Vicki I’m so sorry. You must fight for pain management here in California. I’m in Riverside and it took years and years to finally get some help. It’s still awful, but at least now, I feel more hopeful.
I have had fibromyalgia for a long time and I have also had an autoimmune condition triggered by gluten and certain other foods as well. I have long thought by observing my own body and my symptoms that inflammation and the nervous system are heavily involved. Camilla Svensson's work makes perfect sense.
It took 10 years to be diagnosed with Fybromyalgia. In my prospective Fybromyalgia is caused by stress and anxiety. After getting a new Office Manager she became very nasty towards me finding fault in anything and everything I did this went on for 3 years. My pain got so bad that if anyone just touched my skin it would hurt so bad. On a scale of 1-10 it was 10 plus. No one in my entire family suffers from any kind of pain. But my life was destroyed by this horrible disease I couldn't come my hair change my clothes or even walk. The meds made my sick and made me sleep. But I have came a long way. MEDITATION and YOGA helped me regain my life back. It's still there and hurts but not to the point I can't continue what I am doing.
Yes, but then It’s important to find out why this happens. Treating the root cause. That said it’s a wonderful thing what she’s doing. Cheering for her!
Have your IGG4 antibodie level checked And take note if your finger tip oxygen saturation level is slightly lower than normal Avoid caffeine in your diet limit "your reaction" to stressful situations as best you can ❤
I have pain for over 10 yrs or before. I just stop counting. Til just recently a Dr diagnosed me with fibromyalgia but said i needed to be on meds for the rest of my life. I cant do that. I was going to the gym last yr and it help a lot with the pain. But one day i injured my right knee, then my left knee then my right arm! Or thought i injured the. Seems like my entire body is injured!! I am soooo tired of feeling pain. One Dr even said its not fibro its just old onjuries thats resurfacing at this age.hmmm
Thank you so much for your ongoing work. I have gotten to the point of not even telling some doctors I have Fibromyalgia. Most of the time all I get is a blank vacant stare. It would be great to know our pain and fatigue is at least validated. Please keep up the work. ❤
I'm grateful my doctor believed me. She has been my angel. Fibromyalgia started for me was after a bad car accident. Makes sense about the antibodies. My doctor told me this exact same thing. Hope is all we have. Being strong isn't an option. ❤ Pushing through everyday with this horrible diagnosis is hard. But it has made me so much stronger. Fight fellow warriors❤ that's just what we do ❤
hello everyone I am a future nutritionist in my last year of graduation. For my seminar I was researching about firbomyalgia. so i came across a study that showed a positive effect on reducing the pain with the use of probiotic supplements. You all can check with your doctors for the same. Just trying to help here. PLEASE CHECK WITH YOUR DOCTORS BEFORE INTAKING ANY PROBIOTICS.
I’m in the middle of such a C horrible flare up and I am just in bed whimpering in pain! This goes me hope! Please don’t stop… we need doctors like you. I have long since thought it was an autoimmune disease! 😢❤
My providers won’t even treat it. They acknowledge it, label it self-limiting and send me on my way. 35 years of suffering and reduced capacity for work and life.
It all possibly could be cured by different diet. I have heard someone wrote on TH-cam that strict keto diet with no any grains sugar or starch healed him completely. Worth trying. Fibromyalgia could be an illness due to combination of a prolonged stress and wrong good we eat.
35 yrs plus if being in contsrant various levels of pain to the point i get bed ridden. Want to chop my leg off. Feel like im being scalded, or, the opposite in the atlantic freezing. Run over by trucks stampeded by elephants . Electric current torture . Hip pain. And to top it arthritis too and compressed disc top and bottom spine. I cry with the pain.😢 i truly hope my family dont get this disease.
@Carly1515 bless you carry I truly understand yiur pain fatigue weight gain all what you've said. It's very lonely people don't understand. Here anytime you need to chat. I'm going through flare ups due to move I'll health can't say what for on here as don't want my son and partner worrying just yet. I need to get final results deal with it myself ten possibly tell them. Feel free to chat to me anytime. Wishing you a painfree Christmas as possible. Gentle hugs. 💜
So terribly sorry! I have cried with my pain for so many years that my tears are nearly gone. Terrible suffering and tragically Fibromyalgia is NOT fatal. I can’t wait for death.
You are on the right path.... I have been diagnose with this terrible fibromyalgia it's no joke nothing helps or works... I have had singles four times and ever since the cronic pain has got worse my body has been going backwards. I'm only 65 have suffering for more than 20 years... My mussels also are very weak some days I can nearly move so most of my days I'm lying on my bed. Every move is painfully and hurting. May you find the remedy for this horrible pain. I'm Louiza from SA
Praying more Doctors are aware of Fibromyalgia, so a Patient can start to heal, the crazy look I got from my doctor's gave me in the past and being misdiagnosed and ignored. My pain was severe. Thank you Dr. Silvera, wherever you are for acknowledging Fibro is a complicated Real Illness. Thanks for the awareness on Fibromyalgia.🙏
I have had fibromyalgia for all my life. I was only diagnosed 12 years ago,when they could not find reasons for my pain. I also have arthritis in my hips and back and because you can see these things on an MRI it is the only reason the pain specialist would see me. I take opiates to control the pain and this gives me the freedom to live a somewhat normal life. When i say that I don’t know which pain is worse and if the pain in my hips may be muscle pain of fibromyalgia he said that he would never give me pain meds for fibromyalgia! So this tells me he doesn’t think the pain is that bad and that it doesn’t desearve treatment. Now that opioids are the new devil, he has also told me I will never get another dose increase even though he and i both know this dose will stop working for me. It is very disheartening to know that even a pain specialist thinks this is a nothing disease. Since so many doctors wont prescribe these medicines, I I am afraid to switch doctors. I have tried every other medicine and procedure, but nothing else works. Please keep us this research and give us some answers! And some treatment!
Bless this women I was diagnosed with this in 2017 and I'm a man it is agony I still just about manage to work. We need people like this lady to find a way to prove this illness is real so people are believed I wouldn't wish it on my worst enemy it is hell most days if this lady is watching thankyou for what you are doing 👍
LDN is the only thing that has helped my fibromyalgia and me/cfs Keep up the research!! We all have different castes and sources and that’s why we all respond differently to treatments!
@@lashaeleaf8842 it takes a minimum of two weeks to kick in and start feeling benefits and works best about 6 months in. It’s not like popping an Advil or pain killer. It works with your body and your body will respond in its own way as you get use the medication. I highly recommend that you watch a TH-cam video on how LDN works for pain because it will help you understand what it’s actually doing. Don’t give up on it yet.
It hurts! Just part of my life now. I don't even bring it up now.I just feel invisable, and sometimes judged because I can't do all stuff people want me to.
The biggest problem for me is the brain fog, I keep thinking I've got some form of dementia, sometimes I just can't recall words at all, I get very frustrated.
Have you heard of the new research from Duke University Medical Center? They think they may have pinpointed the culprit -recently published studies reveal a group of nervous system cells called glia. There's more to be learned about this and a glimmer of hope that they may be able to find a way to treat unending, relentless pain. I pray for all of us who continue to suffer for years. Maybe some day soon.!?🥴
I am a 23 year old man muscular, I have abs everyone assumes I feel great and I can’t get out of bed most mornings, I can’t hold a job or any relationships or friendships
My personal theory is long term antidepressants result in fibromyalgia. Antidespressants do affect the dorsal root ganglia in providing an anti-inflammatory effect, however, if you have no physical pain and perhaps your brain is not inflammed then what are the effects? I could get into the science of it but it's not likely that most people want to hear that. I also suspect the amount of chemicals in our environment also plays a contributing role. Interesting it appears that there is a correlation between the introduction of these agents (antidepressants & herbicides) and fibromyaglia / allergies / and other immune disorders becoming common place.
I have chronic pain that ticks all the boxes for a plethora of diagnoses, neurologists don't have any answers. They are clueless. How to differentiate between fibromyalgia and neuropathic pain syndrome seems impossible as none of these are detectable in blood work or lab tests, if some day it will be possible to actually identify the cause and reasons it would be revolutionary.
I was just diagnosed with this. But have 2 buldging disc's in my back that inflame if I sneeze too hard or cough when sick. I went because I am sick far too often, have rashes often on my hands snd arms that linger and need topical medication. I get fevers when I get these rashes, and sickness lasting over a month, from anyone with a cold or flu. I just catch things instantly. I don't believe this is my true diagnosis because I need pressure in my body to find peace and pain relief. I like heavy blankets, and relief when someone lays on my back. I have a very high pain tolerance to injuries, tooth pain, period pain, so in my eyes my diagnosis for fibromyalgia makes zero sense. I had double pneumonia and didn't feel it until I coul no longer breathe properly. Is this normal for fibromyalgia? I'm not convinced. My blood work shows positive for lupis snd schrogens and something is stealing moisture from my cells. That's why I was sent. I just figure when a specislist can't figure things out, they just say fibromyalgia. It's frustrating.
For my mom it was a car accident in '74 (sorry, idr the nature of the accident). I'm pretty sure I have it, either from a car accident (t-bone) when 13 weeks pregnant or it was giving birth. 😅
Thank you for discussing fibromyalgia. I struggled with constant pain and fatigue, but after taking Planet Ayurveda’s Joint Aid Plus and Boswellia Curcumin Capsules, my pain levels dropped significantly. Anyone with fibromyalgia should give their herbal remedies a try!
IS this another "modern disease " that comes down to poor diet ? Do we have any fibro sufferers here eating primarily red fatty meat? I''ve been doing the carnivore diet for 5 months now and it's helping enormously with Arthritis of the neck, it's healed my guts . LCHF diet is the way forward people .
We “feel” we are not believed? No, we are TOLD we are making it up!
It is very, very sad, nobody believe us and we are desperate from all sufferings.
It’s worse because we need help and when people don’t believe you, they won’t help you. If we had a visible disease, churches and government helps you get the food and housing you need.
Worst, when I cane to ER in pain and feeling as though a wire is stuck in my throat, they decided that I was delusional “unspecified psychosis” and locked me up in a mental hospital for 3 weeks, cut my Wellbutrin and Amytriptaline cold turkey. I don’t dare to go to ER ever since and started studying all related medical conditions.
@@victoriagreen8728 Sad...very very sad.....
I had symptoms of Crohn's disease for years but didn't have insurance. When I got insurance I went to the Dr and found out it was absolutely Crohn's disease.since January 2024 I have been in so much pain.it started in my arms. Boe it's going into my whole body. I can't get out of bed, it's so hard to even take a shower on my own. I am 41 years old,female from Washington state. I'm using my boyfriends TH-cam haha 😊. I am so sick everyday.I am about to start a caregiving job. M so nervous. It's going to be rough
Please keep searching for new findings for us sufferers
I lost all hope..... I guess it's what God has given us as punishment. For some unknown reason only he would know. 😞
@@bobbygomes2195man,I’m so sick of this disease! I honestly can’t take it anymore
Prophet Mohammed ( p.b.u.h) said , “there is healing in black seeds ( nigella seeds) for every thing except death “.
We Muslims generally use nigella seeds and honey for cure of every disease and that helps a lot .
Give it a try , just few seeds every day , around 7 or 9 seeds every day first thing in the morning, chew them and drink little warm honey water .
Honey should be around 1/2 a teaspoon 🌸
@@bobbygomes2195get a therapist?
@@bobbygomes2195 “the LORD tests the righteous,”
Fibromyalgia is not only the pain, but it’s the migraines the heat sensitivity or cold sensitivity IBS on and on it goes
I suspect that fibromyalgia is an autoimmune disorder of some kind. I have a different autoimmune disorder and have most of the same symptoms that people with fibro get, but not as severe. Something causing chronic inflammation, if I had to guess.
Fibromyalgia is a disfunction of the pain system.
What is a nociplastic pain?
"Nociplastic Pain is a term used to describe persistent pain that arises from altered nociception, despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors, or evidence for disease or lesion of the somatosensory system causing the pain."
Do you have hypomobility heds autism ADHD is the cause of alot ime diagnosed late
It really takes someone like this lady to dedicate their time to study, and hopefully find, the reason for such a challenging disorder. Family doctors seem very tight-lipped about it, evading questions related to it, as if they're not quite convinced of its reality. I'm inclined to believe it is a Central Nervous System issue, possibly related to osteoarthritis of the spine and other areas; multiple areas in the body affected by the syndrome would appear to be overloaded with pain signals, as well as stiffness, poor sleep, heat intolerance, tinnitus, peripheral neurophy, various sensitivities, sleep apnea, thirst, etc., and of course, severe fatigue. It would be marvellous if this study brought forth the key to unlocking the mystery. It would be life changing for millions of people around the world. So glad it is being so closely studied. Thank you.
Something new in studies?
What is a nociplastic pain?
"Nociplastic Pain is a term used to describe persistent pain that arises from altered nociception, despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors, or evidence for disease or lesion of the somatosensory system causing the pain."
Fibromyalgia is a disfunction of the pain system.
I've been ill since 1982, almost 43 years.
I've spent most of that time studying, investigating and researching Fibromyalgia.
Thank you for your research. The worst thing someone says to me is “you don’t look like you’re in pain”. no one seems to truly understand unless they have it as well. I took pain meds for awhile but then you start to rely on it more and more. It didn’t take away the pain as much as I wanted but for awhile it helped me mentally deal with the depression from constant pain. But eventually I realized it was changing who I was. Having an alternative medicine would be amazing. I can barely work with out the meds but addiction isn’t worth it. I fight the pain on a daily basis I get down more often but my head is clear. Again thank you for giving me hope for a pain free life.
I hear that a lot especially family they don’t even do the research to know what we’re going through sending soft hugs
I am now using MCB oil from Selena Health in NZ. Has made a huge difference.
Research kratom for pain relief without addiction
I have had fibromyalgia for almost 25 years. I really think I had it many years before. When I was first diagnosed, there was only one book to read about it. As I read the book the author explained her pain and how she felt daily. It was exactly the way I had explained mine to other people. Being hit by a Mac truck etc. Thank you for researching fibromyalgia.
Me to are you hypermobile
Oh yes! I have said many times that I feel as though I have been slammed by a semi, thrown through the air and slammed onto the concrete. Or I feel that I have been beat by strong men using cement bats. No joke. Since ‘72. The pain has steadily worsened until I cry and beg for death. Cruel!
I was hyper mobile but it has caused so much arthritis that my joints are no longer very mobile.
I was diagnosed in 1998 after my first son’s birth. I thought it would help if the doctors knew but it was the opposite. I stopped telling even the doctors until lyrica made adverts and doctors were better informed.
That’s exactly what I say. Feels like I been hit by a Mac Truck 😢
I was recently diagnosed with Fibromyalgia. Prior to my diagnosis, I told my doctor that I felt like my autoimmune system was broken, triggering my inflammatory to go haywire. She sent me through a battery of tests… which led to a diagnosis: Fibromyalgia. I was thrilled to hear that after a lifetime of pain, I finally had a diagnosis. However, after learning about what it was and that there was no cure, I was depressed for a few weeks. I am currently on my own journey of vitamin D and K supplements, Magnesium Glycinate supplements, gentle stretches, and a clean diet of colorful fruits and vegetables. I am hopeful that this lifestyle change will help my body to heal. Much blessings to us, to be able to wake up just “one” morning, able to get a full body stretch, feel rejuvenated from a good nights sleep, and enjoy a new day.🥰
I lost my entire active life. I had to underperform throughout the life, like a handicapped person. Please do good research and find a solution for this problem so that the coming generations are a bit relieved.
I am so thankful for you and your research. This disease takes away so much from so many of us.
Good morning sweetheart yes it has thank god I have a supportive husband
We need new studies of fibromyalgia, thank you
Yes indeed the medicine they prescribe does it do nothing. It’s like eating TicTac’s.
When I was told I was in remission with my Lupus, shortly afterward I was told the pain I was having was fibromyalgia. I live in pain every day and nights are the worst. Can't remember the last time I slept through a night without chronic pain and meds are useless. My estranged mother says I'm making it up to seek attention. I keep it to myself as much as possible to avoid being accused as being a hypochondriac. It's not only physically debilitating but emotionally debilitating and there is no quality of life. PLEASE FIND A CURE.
I cant express enough my gratitude for your research! I would love to have my life back and have purpose again
The FDA is in the process of approving a new drug for fibromyalgia called tonmya. You should talk to your doctor about it soon. It is supposed to be approved in the next few months if all goes well with the FDA trials.
I have so many issues and I’m currently in the midst of a MECFS attack. I don’t know where to turn I have been fighting for 41 years now. It started with an accident then degeneration if the spine. Next was treatment, traction, PT, injections and eventual surgery. All that was prior to the diagnosis of fibromyalgia. Ff years injections, medication constant malaise and limited mobility, a dozen MRIS a dozen doctors, ultrasound plus plus. Finally in November of 2018 I was really struggling. I couldn’t eat anything I couldn’t tolerate any heat including showers, leaning to the right and losing strength in my arm. I besides maximum pain and malaise I felt like someone was squeezing my rib cage and grabbing it underneath to twist my torso. To this point the GP was useless. She was a PA she made fun of me . Anyway I googled everything I was experiencing together and I found a document on the MS HUG . This fit my symptoms nearly perfectly. I asked for the Gp to get it ruled out. Fast forward to the Neurologist and omg 😳 I nearly fainted in her office. Pinched nerves bulging and collapsed disc’s Neuromuscular Scoliosis 😮 huh I had 12 MRIs. Of course I had Fibromyalgia,arthritis, bursitis, tendinitis, MECFS, CPTSD, osteoarthritis, osteoporosis, anemia carpal tunnel and thats not all. I think you get the grim picture.
I have had 5 surgeries and that has helped me a bit but its good day bad days. I can’t exert my body past basic needs.
I know this is a year old but maybe you will see it. I’m desperate for help and thank you for your support and dedicated fight. 🤗
Try high dose Vitamin B1 which is thiamine.
Oooo 😮 thank you 🙏 I’m a fibromyalgia patient ❤
Luckily my Doctor is a good one and believes me and helps but I have no friends left as they think I’m a liar 😢
I was diagnosed 20 years ago with fibermyalgia and now I have neuropathy it doesn't seem to end.
Been suffering for over 3 and a half years. Still not diagnosed they say nothing is wrong and I can’t even get out of bed anymore. Every single symptom too even had one doctor say fibromyalgia was not a real condition
Thank you and your team for taking on the mystery of fibromyalgia. I am a 58 year old male who had Lyme disease 28 years ago and now I have been dealing with fibromyalgia for 15 years now. I had my aortic valve replaced (mechanical valve) at age 36 and have been on blood thinners since and will be for the rest of my life. That means I an unable to take NSAIDS to help with the pain. I have been on opioids since 2012. They do help a lot and I do not get any kind of high from taking them. That with Wellbutrin and Gabba allow me to have reduced pain 4 out of 10 most days. I have most symptoms associated with fibromyalgia especially low back and neck pain both areas showing DDD. For those of us that have been struggling with this for a long time feel alone and understood. I have hope after seeing this video that some day I will be normal.. Thank you again for your much appreciated work and dedication.
Possible you have a tarlov cyst. A board certified neurologist can determine and locate the cyst. Unlike fibromyalgia is treatable
I am so happy to know this wonderful Lady is trying to find ways of helping people with Fybromyalgia I am 68 years old and have suffered with this since I was 40 years old. I found that using a hand drill helped my pain because of the vibration. After 2 months of using a drill gave me back movements in my arms and shoulders. Good Luck.
This made me so happy. I have had fibromyalgi 10 years, and I have no life qualite left. Singel mum, working and thats is what I cope. My Dreams is that your science can find som medicin who can help us. Good work ❤
This worked in 2 days!!!!!!! (I suffered 7 hellish years.) 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.
May I ask you who advised you to take a combination of these specific supplements? Thanks
Hi Connie, please let me know, what's the dosage that one should use of these supplements? Many thanks
Be very careful with vit. B6. About 60% of us have at last 2 MTHFR gene mutations and we can be poisoned by relatively low levels of B6, even the best P5P type of B6. I took all the things you did and got permanent nerve damage in my feet from only taking 1/3 of the amt. of B6 I was told to take. I am still taking the others, though I found Mg bisglycinate works better for me than Mg threonate. I've had FMS for 38 years. We are all so different!
I am going to try this. 34 years plus of pain and misery. B6 has helped with some symptoms in past years. Tired of prescriptions that only do so much. Sleep helps. Less stress. Prayers and meditation and family and pets. God Bless all who are suffering. You are not alone. Keep the faith.
Excellent combo of supplements, but please be careful with the amount of B6. It is not truly water soluble like the other B vitamins, and if you have any MTHFR gene mutations, and most people with Fibro have a couple of them, you could get B poisoning at the doses often recommended. I did, and I have permanent neuropathy in my feet as a result. The Neurologist told me she wished she had a C-note for every case of B6 toxicity she'd had to diagnose that year (2016) and told me never to take more than the RDA again, which is only 2 mgs. If not previously tosic, she said you can get away with about 15 mgs. maximum. This includes the preferred form of B6, P5P. I used P5P and still became toxic.
I have had fibromyalgia since’72. The chronic pain has progressively worsened. I feel as though I am in a terrible nightmare. No answers, no help and my Kaiser pain specialist asked me, “you do know that Euthanasia is legal in California.”. That was his comment when I asked what people like me (all chronic pain sufferers!) were supposed to do when we are denied pain relief. Kaiser in Northern California.
How terrible.
Im am so so sorry those words were even said to you. Just horrific. 💔💔💔💔 sending you a virtual butterfly ((hug)). You matter. I matter. We have to keep going forward
He should be reported
I’ve been where you are am very sorry you’re suffering so bad. I’m using Low dose naltrexone and it’s made a difference to the suffering I use to go through. It can be a great help and I can’t recommend more to look into it and possibly give it a try. Wishing you the best.
I'm 20, and I have this. It destroyed my life. I am so tired.
Thank you for your dedication to understanding this syndrome. It’s living hell! More doctors need to do this. Many doctors know nothing about fibromyalgia and it’s a shame.
I was diagnosed with fibromyalgia about eight years ago but the pain was there many years before that and my doctor does believe the pain is there but keeps telling me its all stress and anxiety related and i get the feeling like he is saying to me its all in your mind😔
I was diagnosed with fibromyalgia in my late 30s. I swear not one Dr has addressed this condition. I had a stroke at 59 the left side is paralyzed it hurts 24/7. I was diagnosed in my forties with Lupus. By blood tests. Honestly not one Dr will give me pain meds for fear of addiction. I can't wait to die! I have no life! I cry everyday with pain. My nerves are shot, loud sound, I scream! Crying kids I go to pieces. I don't have an electric cart so I'm in house 24/7 but for Dr appts. I've been diagnosed by Cleveland Clinic with severe heart failure I have chest pain, rapid heat, erratic beating. I so wish I could afford to go to Switzerland for assisted death. No human being should feel pain 24/7 and be denied pain meds! I'm going to die anyway. It's cruel and unusual punishment. I'm afraid of street pain meds cause they can cause death, I'm not suicidal but I can't die this way it's suicide and goes against God's words 🙏🏼 🛐😭💔😢
I am so very sorry you are going through so much. I pray you find some relief...
Vicki I’m so sorry. You must fight for pain management here in California. I’m in Riverside and it took years and years to finally get some help. It’s still awful, but at least now, I feel more hopeful.
So sorry to hear this😢
I have had fibromyalgia for a long time and I have also had an autoimmune condition triggered by gluten and certain other foods as well. I have long thought by observing my own body and my symptoms that inflammation and the nervous system are heavily involved. Camilla Svensson's work makes perfect sense.
It took 10 years to be diagnosed with Fybromyalgia. In my prospective Fybromyalgia is caused by stress and anxiety.
After getting a new Office Manager she became very nasty towards me finding fault in anything and everything I did this went on for 3 years. My pain got so bad that if anyone just touched my skin it would hurt so bad. On a scale of 1-10 it was 10 plus. No one in my entire family suffers from any kind of pain.
But my life was destroyed by this horrible disease I couldn't come my hair change my clothes or even walk.
The meds made my sick and made me sleep. But I have came a long way. MEDITATION and YOGA helped me regain my life back. It's still there and hurts but not to the point I can't continue what I am doing.
I agree with you Huge amount of stress caused me a depression, then later an anxiety, and now I am suffering from fibromyalgia
Yes, but then It’s important to find out why this happens. Treating the root cause. That said it’s a wonderful thing what she’s doing. Cheering for her!
🎉I pray we can find a solution to our pain🎉
I’ve been n the merry go round for 40 years. It never goes away. No matter what I try and believe me I’ve tried it all, in all continents!
Oh, if they find the problems that causes fybro, mabye they find a cure? I don't remeber how it is to be pain free
I had kids before I was diagnosed. My daughter and granddaughter also have fibromyalgia. Feel very guilty that it started with me.
What is the name of the antibody called
Have your IGG4 antibodie level checked And take note if your finger tip oxygen saturation level is slightly lower than normal Avoid caffeine in your diet limit "your reaction" to stressful situations as best you can ❤
Thank you for the work you do. 💜
I have pain for over 10 yrs or before. I just stop counting. Til just recently a Dr diagnosed me with fibromyalgia but said i needed to be on meds for the rest of my life. I cant do that. I was going to the gym last yr and it help a lot with the pain. But one day i injured my right knee, then my left knee then my right arm! Or thought i injured the. Seems like my entire body is injured!! I am soooo tired of feeling pain. One Dr even said its not fibro its just old onjuries thats resurfacing at this age.hmmm
It is sad because nobody believe us with fibro pains.
Thank you so much for your ongoing work. I have gotten to the point of not even telling some doctors I have Fibromyalgia. Most of the time all I get is a blank vacant stare. It would be great to know our pain and fatigue is at least validated. Please keep up the work. ❤
I'm grateful my doctor believed me. She has been my angel. Fibromyalgia started for me was after a bad car accident. Makes sense about the antibodies. My doctor told me this exact same thing. Hope is all we have. Being strong isn't an option. ❤ Pushing through everyday with this horrible diagnosis is hard. But it has made me so much stronger. Fight fellow warriors❤ that's just what we do ❤
What meds help you ?
Israeli research showed 41% of Fibro cases started with neck injury from a car accident. It was the number one trigger for it.
@@meagiesmuse2334 that's so true! Been a nightmare 😔
Thankyou!!! Please keep passing on your findings...
hello everyone
I am a future nutritionist in my last year of graduation. For my seminar I was researching about firbomyalgia. so i came across a study that showed a positive effect on reducing the pain with the use of probiotic supplements. You all can check with your doctors for the same. Just trying to help here. PLEASE CHECK WITH YOUR DOCTORS BEFORE INTAKING ANY PROBIOTICS.
THANK YOU SO MUCH. PRAYING GOD CONTINUES TO BLESS YOU AS YOU ARE BLESSING US 🙏💕
I’m in the middle of such a C horrible flare up and I am just in bed whimpering in pain! This goes me hope! Please don’t stop… we need doctors like you. I have long since thought it was an autoimmune disease! 😢❤
Thank you for help us. Im tearing up. Thank you ❤
My providers won’t even treat it. They acknowledge it, label it self-limiting and send me on my way. 35 years of suffering and reduced capacity for work and life.
Thank you for continuing to do the research. Hopefully there is something that can help calm the constant pain.
I fibromyalgia and rheumatoid arthritis, so my immune system up the creek
It all possibly could be cured by different diet. I have heard someone wrote on TH-cam that strict keto diet with no any grains sugar or starch healed him completely. Worth trying. Fibromyalgia could be an illness due to combination of a prolonged stress and wrong good we eat.
Yes . Another one is the FODMAP diet is a good elimination and healing diet.( can I adhere to it though? Well…😕)
35 yrs plus if being in contsrant various levels of pain to the point i get bed ridden. Want to chop my leg off. Feel like im being scalded, or, the opposite in the atlantic freezing. Run over by trucks stampeded by elephants . Electric current torture . Hip pain. And to top it arthritis too and compressed disc top and bottom spine. I cry with the pain.😢 i truly hope my family dont get this disease.
@Carly1515 bless you carry I truly understand yiur pain fatigue weight gain all what you've said. It's very lonely people don't understand. Here anytime you need to chat. I'm going through flare ups due to move I'll health can't say what for on here as don't want my son and partner worrying just yet. I need to get final results deal with it myself ten possibly tell them. Feel free to chat to me anytime. Wishing you a painfree Christmas as possible. Gentle hugs. 💜
So terribly sorry! I have cried with my pain for so many years that my tears are nearly gone. Terrible suffering and tragically Fibromyalgia is NOT fatal. I can’t wait for death.
@@AlipotamusI feel the same 😢way
You are on the right path.... I have been diagnose with this terrible fibromyalgia it's no joke nothing helps or works... I have had singles four times and ever since the cronic pain has got worse my body has been going backwards. I'm only 65 have suffering for more than 20 years... My mussels also are very weak some days I can nearly move so most of my days I'm lying on my bed. Every move is painfully and hurting. May you find the remedy for this horrible pain. I'm Louiza from SA
Praying more Doctors are aware of Fibromyalgia, so a Patient can start to heal, the crazy look I got from my doctor's gave me in the past and being misdiagnosed and ignored. My pain was severe. Thank you Dr. Silvera, wherever you are for acknowledging Fibro is a complicated Real Illness. Thanks for the awareness on Fibromyalgia.🙏
Hi I'm am thanking you for your help in your research for this disabling pain.
I think the fatigue bothers me most of all.
ugh my back hurts so bad rn. I hate this illness. I might have something else too, but if it's just fibromyalgia ugh
I have had fibromyalgia for all my life. I was only diagnosed 12 years ago,when they could not find reasons for my pain. I also have arthritis in my hips and back and because you can see these things on an MRI it is the only reason the pain specialist would see me. I take opiates to control the pain and this gives me the freedom to live a somewhat normal life. When i say that I don’t know which pain is worse and if the pain in my hips may be muscle pain of fibromyalgia he said that he would never give me pain meds for fibromyalgia! So this tells me he doesn’t think the pain is that bad and that it doesn’t desearve treatment. Now that opioids are the new devil, he has also told me I will never get another dose increase even though he and i both know this dose will stop working for me. It is very disheartening to know that even a pain specialist thinks this is a nothing disease.
Since so many doctors wont prescribe these medicines, I I am afraid to switch doctors. I have tried every other medicine and procedure, but nothing else works. Please keep us this research and give us some answers! And some treatment!
Bless this women I was diagnosed with this in 2017 and I'm a man it is agony I still just about manage to work. We need people like this lady to find a way to prove this illness is real so people are believed I wouldn't wish it on my worst enemy it is hell most days if this lady is watching thankyou for what you are doing 👍
Yayyyy can't wait I'm so done living like this
LDN is the only thing that has helped my fibromyalgia and me/cfs Keep up the research!! We all have different castes and sources and that’s why we all respond differently to treatments!
Hello! I just started 3 mg yesterday and so far I’m not getting any relief.
@@lashaeleaf8842 it takes a minimum of two weeks to kick in and start feeling benefits and works best about 6 months in. It’s not like popping an Advil or pain killer. It works with your body and your body will respond in its own way as you get use the medication. I highly recommend that you watch a TH-cam video on how LDN works for pain because it will help you understand what it’s actually doing. Don’t give up on it yet.
Hi what is LDN
th-cam.com/video/Tco6wHEOnE4/w-d-xo.htmlsi=YUhiZupsqITvsqXR
@@lillianrivera-kv1whlow dose naltrexone
I can’t take no more. Dr say they can’t help me
Hello Augusta, I hope you are ok. I am praying for you. Know that you will be healed in the name of Jesus.
I am tired of listening to aches and pains. Let me know when there is a cure.
It hurts! Just part of my life now. I don't even bring it up now.I just feel invisable, and sometimes judged because I can't do all stuff people want me to.
The biggest problem for me is the brain fog, I keep thinking I've got some form of dementia, sometimes I just can't recall words at all, I get very frustrated.
There is a reason! Trauma for one.
Have you heard of the new research from Duke University Medical Center? They think they may have pinpointed the culprit -recently published studies reveal a group of nervous system cells called glia. There's more to be learned about this and a glimmer of hope that they may be able to find a way to treat unending, relentless pain. I pray for all of us who continue to suffer for years. Maybe some day soon.!?🥴
Thank you for trying to help us against a very debilitating illness of constant pain.
Thanks a lot. Please, keep on... 💖🌹
I am a 23 year old man muscular, I have abs everyone assumes I feel great and I can’t get out of bed most mornings, I can’t hold a job or any relationships or friendships
My personal theory is long term antidepressants result in fibromyalgia. Antidespressants do affect the dorsal root ganglia in providing an anti-inflammatory effect, however, if you have no physical pain and perhaps your brain is not inflammed then what are the effects? I could get into the science of it but it's not likely that most people want to hear that. I also suspect the amount of chemicals in our environment also plays a contributing role. Interesting it appears that there is a correlation between the introduction of these agents (antidepressants & herbicides) and fibromyaglia / allergies / and other immune disorders becoming common place.
Mine came on after Covid. Finding any correlation?
The lady I saw Rhumatology said that she was seeing a lot more people with Long COVID now coming to her for Fibromyalgia assessment.
It's it possible that people with autoimmune diseases are at higher risk? Does blood type or rh factor increase risk? 🤔
Bruce Lipton explains the cause of pain and Dr. Sarno explains how to overcome it 😊❤
I have chronic pain that ticks all the boxes for a plethora of diagnoses, neurologists don't have any answers. They are clueless. How to differentiate between fibromyalgia and neuropathic pain syndrome seems impossible as none of these are detectable in blood work or lab tests, if some day it will be possible to actually identify the cause and reasons it would be revolutionary.
Totally true....I had major trauma which sent my body in a downward spral.
Thank you for all your work and reserach. How can a fibro patient get this blood test that shows these antibodies please?
I was just diagnosed with this. But have 2 buldging disc's in my back that inflame if I sneeze too hard or cough when sick. I went because I am sick far too often, have rashes often on my hands snd arms that linger and need topical medication. I get fevers when I get these rashes, and sickness lasting over a month, from anyone with a cold or flu. I just catch things instantly.
I don't believe this is my true diagnosis because I need pressure in my body to find peace and pain relief. I like heavy blankets, and relief when someone lays on my back. I have a very high pain tolerance to injuries, tooth pain, period pain, so in my eyes my diagnosis for fibromyalgia makes zero sense. I had double pneumonia and didn't feel it until I coul no longer breathe properly. Is this normal for fibromyalgia? I'm not convinced.
My blood work shows positive for lupis snd schrogens and something is stealing moisture from my cells. That's why I was sent. I just figure when a specislist can't figure things out, they just say fibromyalgia. It's frustrating.
Opioids help,but now new docs are lowering dose ,and frowning down apon use. So wrong! 😔
As antibodies are involved, I’d love to know if there is any correlation between fibromyalgia and rhesus disease.
Thanks for doing new research😭❤
I wonder what kinda injuries that trigger Fibromyalgia?
Your father must be very proud of you !
For me It was a virus in 1997.
Stil sick
For my mom it was a car accident in '74 (sorry, idr the nature of the accident). I'm pretty sure I have it, either from a car accident (t-bone) when 13 weeks pregnant or it was giving birth. 😅
What kind of antibodies? Auto-antibodies?
We all thank you ❤
What about autism and fibromyalgia?
All my muscles have went soft and squishy i'm also getting big clumpy muscles and knots all over my body
Is this the begininging of fibromyalagia
Mine sent but knits move over time are you hypermobile any Asperger's add
@@Truerealism747 I'm hypermobile
Thank you! Is this something that my doctor can test me for. I want to contribute to research too!
Thank u, so interesting snd hopefully helpful
Explain to me how to create w & t for dummies ?
Tell me how to do a wild & t= s stitch?
1:30 exactly my mood now.
Fibromyalgia is the diagnosis you get when your doctor can't or won't do proper diagnostics and can't or won't look for the real cause.
maybe craniosacral therapy can help somewhat???
thank you for this video ❤❤
Thank you for this
Thank you for discussing fibromyalgia. I struggled with constant pain and fatigue, but after taking Planet Ayurveda’s Joint Aid Plus and Boswellia Curcumin Capsules, my pain levels dropped significantly. Anyone with fibromyalgia should give their herbal remedies a try!
IS this another "modern disease " that comes down to poor diet ? Do we have any fibro sufferers here eating primarily red fatty meat? I''ve been doing the carnivore diet for 5 months now and it's helping enormously with Arthritis of the neck, it's healed my guts . LCHF diet is the way forward people .
In fibromyalgia I give my patients planet ayurveda’s boswellia curcumin.
What do we do for it
please god help us
Thank you! 😭
Me😢had it for two years😢😊
What meds
I am a fibromyalgia suffer
God healed me from this terrible, deliberating, painful illness 🙌🏼All glory to the kings of kings !!!!
Pray for me I am suffering from it.