Fibromyalgia - why it aches so bad
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- Опубликовано: 24 апр 2023
- People with fibromyalgia have pain for no known reason. Camilla Svensson's group at Karolinska Institutet has discovered is that people with fibromyalgia have something in their blood that people without it are lacking, they have antibodies that seem to trigger the pain. Svensson's hypothesis is that they trigger the nerve cells, causing them to send constant pain signals.
This finding could mean that fibromyalgia will need to change its category. From pain where there is no physical explanation - and where some are not even believed - to pain that can be explained as a mis programmed immune system. 
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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 RUclips 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,”
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?
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.
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 😢
We need new studies of fibromyalgia, thank you
Yes indeed the medicine they prescribe does it do nothing. It’s like eating TicTac’s.
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
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.
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.
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
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
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 ❤
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 ❤
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 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
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 pray we can find a solution to our pain🎉
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.
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 👍
I cant express enough my gratitude for your research! I would love to have my life back and have purpose again
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
Thank you for continuing to do the research. Hopefully there is something that can help calm the constant pain.
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.
Thankyou!!! Please keep passing on your findings...
There is a reason! Trauma for one.
THANK YOU SO MUCH. PRAYING GOD CONTINUES TO BLESS YOU AS YOU ARE BLESSING US 🙏💕
Thank you for the work you do. 💜
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!
It all possibly could be cured by different diet. I have heard someone wrote on RUclips 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…😕)
I can’t take no more. Dr say they can’t help me
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!
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.
Hi I'm am thanking you for your help in your research for this disabling pain.
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
Yayyyy can't wait I'm so done living like this
Fibromyalgia is not only the pain, but it’s the migraines the heat sensitivity or cold sensitivity IBS on and on it goes
Thank you for help us. Im tearing up. Thank you ❤
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 ❤
Thanks for doing new research😭❤
thank you for this video ❤❤
I am tired of listening to aches and pains. Let me know when there is a cure.
What is the name of the antibody called
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 RUclips 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
ruclips.net/video/Tco6wHEOnE4/видео.htmlsi=YUhiZupsqITvsqXR
@@lillianrivera-kv1whlow dose naltrexone
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 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😔
Thank you! Is this something that my doctor can test me for. I want to contribute to research too!
ugh my back hurts so bad rn. I hate this illness. I might have something else too, but if it's just fibromyalgia ugh
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.
As antibodies are involved, I’d love to know if there is any correlation between fibromyalgia and rhesus disease.
Tell me how to do a wild & t= s stitch?
God healed me from this terrible, deliberating, painful illness 🙌🏼All glory to the kings of kings !!!!
It's it possible that people with autoimmune diseases are at higher risk? Does blood type or rh factor increase risk? 🤔
Explain to me how to create w & t for dummies ?
Thank you!!!!
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.
What meds
What do we do for it
maybe craniosacral therapy can help somewhat???
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
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. 😅
Me😢had it for two years😢😊
In fibromyalgia I give my patients planet ayurveda’s boswellia curcumin.
Coenzyme q10 and rhodiola❤
Depression causes it too
Never heard of this. Are you sure its fibromyalgia?
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 .
I was diagnosed with Fibro for over 25 years. I had the test in the Doctors office with the pressure points etc. Since I went Carnivore and got rid of all the carbs, sugar, frankenfoods, it is gone. No more pain, nor more fatigue, no more brain fog, memory etc. No more Gerd. No more high BP or BS. I sleep so good now I am even off my cpap.
And if I had any doubts, all I have to do is fall off my Strict ketovore diet (mushrooms, avocado, garlic and onions are ok) and eat potatoes or veggies or chips and I am hurting all over again. So this is not just a one time thing. The last 8 months I have cured my fibromyalgia with a carnivore diet. Thank you Dr. Ken Berry. Thank you PHD community. Thank you Dr. Chaffee. Thank you Dr. Baker.
Do you have hypomobility
You've hit the nail on the head - It's the reason we have an appendix ., we evolved to our current form Homo sapiens from eating ruminant animals., Nearly all, maybe all modern NCD's are from improper diet .
I don’t only suffer from widespread pain or fatigue but also severe IBS , sleeplessness and depression among other symptoms 😢 Anti bodies? This means autoimmunity drugs? I don’t think so because whenever I have my blood tested , nothing of the sort is proved .
. If the pharmaceutical companies are convinced , they may pay billions of dollars to fund research hopefully, otherwise, we’ll have to wait for the next generation to benefit from it.
culprit: microwaves, it can last a few years
I don't use microwave had CFS before fybromyalgia
I had fibromyalgia years before we had microwaves. Since’72. A living hell as it is progressive.
I don't know what to think. I'm constantly watching videos. My pain is bilateral on both wrist/forearms area and lower thigh/upper knee area. I looked up lupus because bloods showed that I had a high white cell count. But they say I'm just fighting a cold/flu.
I was feeling symptoms in the V and A , it’s as though people are trying to cyber harass me over the edge in addition to the mentally insane outside my door. Most women would fold . I will reiterate I can’t help you and your legacy is not my fault .