SCI Fibromyalgia may be a condition of the immune system not the brain – study

Melodi

Disaster Cat
Nightwolf has held this theory for a long time now, partly from living with me lol... but I am so glad they are finally finding some physical markers they can use even if it is early days.


Fibromyalgia may be a condition of the immune system not the brain – study
New research challenges widely held view of the condition and could pave way for better treatment

The findings, published in the Journal of Clinical Investigation, challenge the widely held view that the condition originates in the brain Photograph: Manjurul Haque/Alamy Stock Photo
Linda Geddes Science correspondent
Thu 1 Jul 2021 18.41 BST

Fibromyalgia – a poorly understood condition that causes widespread pain throughout the body and extreme tiredness – may be caused by be an autoimmune response that increases the activity of pain-sensing nerves throughout the body.

The findings, published in the Journal of Clinical Investigation, challenge the widely held view that the condition originates in the brain, and could pave the way for more effective treatments for the millions of people affected.

They could also have implications for patients suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and “long Covid”. “These different syndromes are symptomatically very similar, so I think it could be very relevant to both of these conditions,” said Dr David Andersson from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, who led the new study.

Fibromyalgia affects at least 1 in 40 people worldwide, although some estimates suggest nearly 1 in 20 people may be affected to some degree. It is characterised by widespread pain and crippling fatigue – often referred to as “fibro fog” – and usually develops between the ages of 25 and 55, although children can also get it. Similar to many autoimmune conditions, the vast majority of those affected (80% are women).

Current treatment tends to focus on gentle aerobic exercise, as well as drug and psychological therapies designed to manage pain. However, these have proven ineffective in most patients and have left behind an enormous unmet clinical need, said Andersson. “The widespread paradigm at the moment is that this is a disease that emanates from the brain, and I think our findings suggest that that’s not the case,” he said.

The development of new therapies has also been hampered by a limited scientific understanding of what causes the condition in the first place, but this could change with the discovery that the immune system is involved.

Andersson and his colleagues harvested blood from 44 people with fibromyalgia and injected purified antibodies from each of them into different mice. The mice rapidly became more sensitive to pressure and cold, and displayed reduced grip strength in their paws. Animals injected with antibodies from healthy people were unaffected.

Prof Camilla Svensson from the Karolinska Institute in Sweden, who was also involved in the study, said: “Antibodies from people with fibromyalgia living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings.”

The mice recovered once the antibodies had been cleared from their systems, which took a few weeks
. This suggests that therapies such as plasma-exchange, which are designed to reduce antibody levels and are available for other autoimmune disorders, such as myasthenia gravis, may be effective in fibromyalgia patients.

“Establishing that fibromyalgia is an autoimmune disorder will transform how we view the condition and should pave the way for more effective treatments for the millions of people affected,”
Andersson said. “Our work has uncovered a whole new area of therapeutic options and should give real hope to fibromyalgia patients. [Yeah like some doctors being forced to realize it is "real" - Melodi]

The next step will be to identify what factors the symptom-inducing antibodies bind to, said Svensson: “This will help us not only in terms of developing novel treatment strategies for fibromyalgia, but also of blood-based tests for diagnosis, which are missing today.”

Anderson said he also hoped to conduct similar experiments using antibodies harvested from people with ME/CFS and long Covid.

Des Quinn, the chair of Fibromyalgia Action UK, said: “The prospect of fibromyalgia being an autoimmune condition has been debated many times and this will add to that discussion. If these results can be replicated and expanded upon, then the prospect of a new treatment for people with fibromyalgia would be extraordinary. However, the results need further confirmation and investigation before the outcomes can be applied universally.”

It would also be interesting to investigate how these findings relate to other symptoms of fibromyalgia, such as fatigue, sleep disturbance, and cognitive issues, he added.

Topics
Fibromyalgia
Health
Long Covid
news
 

Freeholder

This too shall pass.
I thought it was KNOWN that fibro was an auto-immune disorder? Pretty sure I have it, though I don't have an official diagnosis (I have several other auto-immune conditions). Diet changes help; getting enough sleep helps a lot; reducing stress helps; a little exercise helps (but too much makes it worse).

Kathleen
 

SouthernBreeze

Has No Life - Lives on TB
I thought it was KNOWN that fibro was an auto-immune disorder? Pretty sure I have it, though I don't have an official diagnosis (I have several other auto-immune conditions). Diet changes help; getting enough sleep helps a lot; reducing stress helps; a little exercise helps (but too much makes it worse).

Kathleen

I was talking to my Rheumatologist about this on one of my visits. According to him, a lot of patients who have auto-immune diseases also suffer from Fibro as well. He didn't believe that Fibro was an auto-immune disorder by itself at that time, but who knows? This was a few years ago.
 

Melodi

Disaster Cat
I thought it was KNOWN that fibro was an auto-immune disorder? Pretty sure I have it, though I don't have an official diagnosis (I have several other auto-immune conditions). Diet changes help; getting enough sleep helps a lot; reducing stress helps; a little exercise helps (but too much makes it worse).

Kathleen
It has been a theory (that it was an auto-immune disorder) for some time now, but even though the "points" on the body are known (and taught for the US Medical School Exam- per Nightwolf) it has still been controversial. Partly because until this study there were few physical things that could be checked - now with the plasma injection into mice there is the first door to "prove" even to some of the old-line doctors (mostly male) who insist it is "simply a condition of lazy people" (which I've actually heard) or "the exercise adverse" (which I've also actually heard).

But after years of living with me and going to medical school, Nightwolf was convinced it was auto-immune already and it often appears in clusters with other auto-immune diseases; a person can have more than one at a time and that also complicates things.

The plasma may become the first "physical marker" that researchers can't point to, even if they don't know what to test for yet exactly; they have proven that the condition is not just the brain wiring going "wrong" and "over-reacting." That probably does take place, and people who have had severe physical pain, especially chronic pain are more prone to fibro even if the original condition turns out to be "fixable."

I also suspect that "Long Covid" really is starting to force the research on this and I hate to say it, but more men than women seem to be suffering from Long Covid (though both can get it) and well, diseases that affect men sadly still tend to be taken more seriously than those of women.

I mean if a woman is really physically too exhausted and in too much pain to make a cup of coffee or brush her hair because her (hair hurts) obviously we just have "overactive and oversensitive pain receptors" (subtext get out of bed you lazy old thing and just get on with it).

But if a man has exactly the same symptoms, especially if he was previously healthy and not known for crying jags when trying to take a shower (the water can hurt) or is in obvious physical agony (or ready to go back to bed) after getting dressed and arriving at work - then, in general, the medical establishment (and employers) suddenly take note.

This is a disease that "comes and goes" which also makes it hard to deal with for patients, families, and their employers.

I can't count the times I have a remission (sometimes of several months) gotten "on" with my life only to have it crash down suddenly and put me in bed for a week, no matter if I want to be there or not.

Again, when that happens to women, we tend to get shoved off with a suggestion we get some "meds" for depression; when it suddenly starts happening to men (as well as women) after even a mild illness and in large numbers - ops, perhaps there is a real problem out there?
 
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Freeholder

This too shall pass.
I often feel like I'm being lazy because I don't get up and get busy, but then I have a better day like yesterday (I can't really call it a GOOD day, because there was still pain to deal with) and realize that hey, when I'm feeling good and have some energy, I don't have any issue with getting up and getting busy! But it takes that contrast to show up how bad a normal day is. And that is even with being careful about what I eat (an anti-inflammatory diet), and getting enough sleep, etc. If I mess up on one of those, especially the sleep, I pay for it for weeks or months.

Kathleen
 

Melodi

Disaster Cat
I just talked to Nightwolf, he said this is an "absolute game-changer," as it now means that in fact there is a physical marker that can be noted. That should lead to finding a marker in the plasma now that they know there must be one, and hopefully coming up with a real diagnostic test.

A test that does more than just catalog symptoms (which is what is currently done). Obviously, they won't be testing people by giving mice fibro as a primary way of testing this out, but it does provide researchers with a physical way forward.

It may just, also lead to some actual treatments beyond the rather haphazard ones they have now. Which mostly consists of light exercise to those who can tolerate it, varying degrees of pain killer depending on your doctor (and your local governments' politics), some "alternative" treatments like massage or acupuncture, and anti-depressant medication (which does work in some people but if often relied on by busy doctors who use it as a first resort figuring the person is "really just depressed.)

It won't surprise me at all if something in SOME of the current antidepressants does something in the lab to whatever is found in that plasma. But right now it is always kind of a crap-shoot (I use either St. John's Wart or Saffron both natural SSRI's but don't use them at the same time) which clinically in Europe are considered the same as "first stage" antidepressant drugs and for me it helps (without the side effects).

But getting all doctors on board that this is a REAL medical condition like Lupus but perhaps not as life-destroying (for most people) is the first step towards either finding a real cure or at least reliable treatments to make life more livable and productive.

That last part, productive, is what I think is starting to panic governments with Long-Covid. Men like our friend who is a popular high school science teacher who may have to retire on disability after struggling to keep teaching with Long Covid are like canaries in a coal mine for what may become.

And that is just from the disease, not what other autoimmune disorders MAY come out of some of the experimental vaccines- there are almost always a few people that come down with those, even with the old, very safe for most people, injections, no just ones we know little about and that seem to be causing issues for some people already.
 

bev

Has No Life - Lives on TB
I was talking with my DH just the other night (don’t remember what got me started) and told him I don’t remember being pain-free. There were times, of course, before FM and before all my back issues and surgeries, when I felt “normal” and could work, play, and just live without pain. I remember doing all that, but I just can’t remember my body NOT feeling pain during those times, or not feeling like I need a long nap.

Mine started after a car accident in 1987. Most of *us* can generally pinpoint the date when our FM symptoms started. From my reading (not recent), most feel it started following some kind of trauma, severe stress, or an infection. In my case, the first-line treatment, after all the tests and imaging, was an anti-depressant. It does help, although for me, it came with about 40 very stubborn pounds. Several times I’ve tried to wean off, but my symptoms got much worse. Maybe that’s why docs feel like it’s in the brain. “It’s all in your head.” :rolleyes:

Thanks for posting!

OMG! Just for grins, I did the math, and I’ve had this for 34 years - that’s exactly HALF of my life! :shk::gaah::bwl::eek::mad:
 

fish hook

Deceased
It has been a theory (that it was an auto-immune disorder) for some time now, but even though the "points" on the body are known (and taught for the US Medical School Exam- per Nightwolf) it has still been controversial. Partly because until this study there were few physical things that could be checked - now with the plasma injection into mice there is the first door to "prove" even to some of the old-line doctors (mostly male) who insist it is "simply a condition of lazy people" (which I've actually heard) or "the exercise adverse" (which I've also actually heard).

But after years of living with me and going to medical school, Nightwolf was convinced it was auto-immune already and it often appears in clusters with other auto-immune diseases; a person can have more than one at a time and that also complicates things.

The plasma may become the first "physical marker" that researchers can't point to, even if they don't know what to test for yet exactly; they have proven that the condition is not just the brain wiring going "wrong" and "over-reacting." That probably does take place, and people who have had severe physical pain, especially chronic pain are more prone to fibro even if the original condition turns out to be "fixable."

I also suspect that "Long Covid" really is starting to force the research on this and I hate to say it, but more men than women seem to be suffering from Long Covid (though both can get it) and well, diseases that affect men sadly still tend to be taken more seriously than those of women.

I mean if a woman is really physically too exhausted and in too much pain to make a cup of coffee or brush her hair because her (hair hurts) obviously we just have "overactive and oversensitive pain receptors" (subtext get out of bed you lazy old thing and just get on with it).

But if a man has exactly the same symptoms, especially if he was previously healthy and not known for crying jags when trying to take a shower (the water can hurt) or is in obvious physical agony (or ready to go back to bed) after getting dressed and arriving at work - then, in general, the medical establishment (and employers) suddenly take note.

This is a disease that "comes and goes" which also makes it hard to deal with for patients, families, and their employers.

I can't count the times I have a remission (sometimes of several months) gotten "on" with my life only to have it crash down suddenly and put me in bed for a week, no matter if I want to be there or not.

Again, when that happens to women, we tend to get shoved off with a suggestion we get some "meds" for depression; when it suddenly starts happening to men (as well as women) after even a mild illness and in large numbers - ops, perhaps there is a real problem out there?
I dealt with this thinking from doctors many times until someone took the time to reach a diagnosis of my wife's M G. Sadly if one "doctor "charts it as mental the others tend not to look. I loudly fired more than one for trying to send her to a psychiatrist, instead of trying to find out what was wrong. Turned out it was her ophthalmologist that got one on the right track.
 

Freeholder

This too shall pass.
I don't remember a trigger event for mine. I've known for quite a while that I had some of the other auto-immune issues (psoriasis started when I was mid-teens, for example). But it was probably fifteen years ago when I was talking with a friend who has fibro; she was telling me about the pressure points, and reached over and pushed on the ones on the inside of my knees, and I realized that, hey, those spots hurt! And so did several of the other pressure points, though not all of them. Going on the auto-immune protocol diet, and making sure I got at least eight or nine hours of sleep every night helped a lot with the brain fog and the tiredness, and the hurting and stiffness when I get up in the morning. Nothing is perfect, but I'm certainly doing a lot better than I would otherwise, and the only 'medication' I'm taking is Vitamin D -- that does help.

Kathleen
 

KittyKatChic

Senior Member
So my rheumatologist says the proper diagnosis has always been Slow Progressing Autoimmune related Connective Tissue Disorder. Simply because it hasn't reached a level where it is picked up on various autoimmune tests. He says he doesn't know if it a new area or just the precursor to the existing defined autoimmune disorders.

It is his peeve actually. He thinks that fibro isn't "real" as a stand alone disease, but is the bodies way of trying to tell the practitioner that something is up and further investigation is needed. Which may allow the Dr. to either prevent or at least delay actual onset to of the true autoimmune disorder.

I tend to agree that it is autoimmune related. As everything seems to come back around to that for me. :hmm:
 

TBonz

Veteran Member
Always thought it was auto-immune related. Many who have fibro also have Lupus (not I, thankfully). I've noticed some even have issues with their spines, the cervical area.

I'd like a cure and I'd like that cure to NOT put on extra weight which many fibro meds do and which I always refuse to take.
 

SouthernBreeze

Has No Life - Lives on TB
When I first began to have health problems with pain in my joints, and a low grade fever, I was sent to my first Rheumatologist in Memphis, TN. She ran all kinds of tests, and came back with the conclusion that I had Fibro. She wrote me a prescription for an anti-depressent (Trazodone) to help me sleep more deeply at night, saying that my body wasn't getting enough rest. She told me that that's the only treatment for Fibro. I didn't like her at all. It was almost like she was telling me it was all in my head.

That wasn't the end to my story. I began to have more symptoms, and was sent to another Rheumatologist who ran his own tests. Diagnosis was Unspecified Connective Tissue Disease. I just wasn't getting enough of the markers for Lupus or any other specific disease in my blood work,yet. I was treated with steroids when I had a flare. That diagnosis was the best he could do.

Finally, several Rheumatologists, doctors, and a fortune of blood work later, I was diagnosed with Lupus, Sjogren's Syndrome, and Raynaud's Syndrome. It was my Opthamologist who made the diagnosis of Sjogren's Syndrome.

I do think there is a connection between Fibro and the early diagnosis or onset of other auto-immune diseases. It was in my experience.
 
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Zahowey

Senior Member
My DW suffers from Fibromyalgia, every Doctor she went to all said the same thing “it is in your brain”. After years of suffering with full time work, getting her 2 Masters degrees, raising a family, she would come home and sleep all weekend. Finally a Dr. told her about a Fibro clinic in Dallas, we went there every other month and they are the ones to help the most.

She also has Hashimoto disease and Epstein Barr.
 

CarolynA

Veteran Member
I've always felt that fibro was a byproduct of other problems. My Rheumatologist pretty much said the same thing when I was diagnosed 25 years ago. I had Sarcoidosis, several serious injuries, and Valley Fever. After recovering from all of those I had one big trigger event and have never had a good day since. It was like my body had just had enough!
One problem I had with fibro was restless leg. It was so bad that I wasn't getting any sleep and had constant brain fog. Doc put me on low dose Cymbalta and Tizanadine (muscle relaxant) at night and it has made a HUGE difference. I also take glucosamine, chondroitin, and Turmeric for my arthritis. It all helps!
 

Meemur

Voice on the Prairie / FJB!
I think they will find that it's ultimately related to hormones and how they impact some pathways in the brain.
 

colonel holman

Veteran Member
Auto-immune… the body decides to become allergic to some of its own proteins (such as collagen, in rheumatoid arthritis).

Hormones and gut chemistry affect brain function, a lot

Brain can become pain-automated. The more pain you have and the longer you have it, the more pain sensitive the brain becomes (hyperalgesia). You do not become “used to” the pain. That is more likely a depression effect. Once you reach a point where touch hurts, movement hurts, temperature changes hurt… the brain soon learns that these sensations are actually pain signals. In fact nerve fibers that conduct those signals actually grow fibers that connect to pain tracts in spinal cord, in response to pain overstimulation. At that point touch, movement and temperature all become active pain signals. This called allodynia.

Newly emerging pain management technique to reverse this is graded motor imagery and mirror therapy. These do modify brain’s ability to over-process pain. I have used it with some success on several patients. Not a cure for fibro, but a tool to help. These are used primarily for for chronic regional pain syndrome (CRPS), reflex sympathetic dystropy (RSD) but should carry over to FMS

and
 
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Melodi

Disaster Cat
There was a great poster I can't find anywhere now with a snarling Wolf on it that said:

The Only Thing Tough Enough to Defeat Me, is ME!

It was aimed at auto-immune disorders.

In my experience, while meditation and other techniques can help get through a fiber flare, as the only means of treatment they only help in the same way they would help anyone else in intense pain.

This is very important and not to be discounted at all, but it doesn't solve the physical problems that are taking place.

I am so glad researchers are finally finding at least the first physical marker for all this, because regardless of cause (and I suspect there are several of them at least, including chronic pain from other conditions) curing or at least managing it would make life a whole lot easier.

It isn't the doctor's fault there has been no reliable test (beyond symptoms and pressure points) or even real treatments for this, my own GP actually diagnosed me years ago (I'd never heard of it, I had to look it up on proto-google). But I do get annoyed when doctors "diagnose" things like "exercise aversion," or "red-haired people are often more sensitive to pain."

Neither is helpful when it is so painful to get out of bed you are holding your breath to try not to wake up your spouse or need painkillers to make it to a doctor's appointment.
 

Jez

Veteran Member
My DW suffers from Fibromyalgia, every Doctor she went to all said the same thing “it is in your brain”. After years of suffering with full time work, getting her 2 Masters degrees, raising a family, she would come home and sleep all weekend. Finally a Dr. told her about a Fibro clinic in Dallas, we went there every other month and they are the ones to help the most.

She also has Hashimoto disease and Epstein Barr.
I may have to find that clinic. My pain specialist and Rheumatologist have been playing spin the wheel of medications trying to find something that works for me. Apparently I'm one of those rare lucky men that have it. Not exactly the kind of lottery I'd like to win.
 

TBonz

Veteran Member
I've been lucky with doctors. None were condescending. Mine came about after I had human parvovirus. I woke up the day after a mild rash and could barely use my hands and feet. My husband had to brush my long hair for a few days. The hands and feet came back to normal in a few days but the fibro was permanent; it came and (over)stayed.

I have chronic low vitamin D, for which I take prescription strength vitamin D to put it to normal levels. No Lupus or other stuff and fingers crossed I never do get that.

I've had fibro for almost 30 years. It waxes and wanes. I am on a med for it now, as 2 years ago, it worsened for no good reason.
 

Digger

Veteran Member
If you have an autoimmune disease, Google the name and gut health. You will see the research that they are connected. I was on medication for hypothyroidism. I took it every day, went to the dr every 3 months to check my levels. But I felt awful. My joints hurt, I retained a lot of fluid, and was tired all the time. I was not enjoying life. I just tried to make it through the days. My friend kept suggesting i try Plexus Triplex. It is a drink mix that levels out blood sugar levels, a probiotic that actually works and corrects your gut flora, and a maganisum supplement that keeps your bowel movements regular. I put her off for 3-4 months. One day we were Christmas shopping and I just wanted to go to the truck because I hurt and my purse was feeling so heavy I wanted to cry. My friend made the suggestion again and I was desperate. I placed an order. Let me tell you, that was a life changing decision for me. Within a week I had my life back. My swollen knuckles returned to normal. It no longer hurt to cut the food on my plate. Several other symptoms disappeared. I had immediate results. Now everyone gets the Wow that I got. But I thank God for it. My dr approved of me taking Plexus along with my prescriptions. 7 years later I am off several prescription medications. I still take blood pressure medication and occasionally take some thyroid medication. I only see my dr every 6 months to a year. He checks my thyroid levels and I am holding at boarderline hypothyroid. But I daily take my Plexus and have for the last 7 years. I am still slowly improving my gut health. It takes a long time. I didn't get sick overnight and I can't get well over night. If I could only take one product, it would be the Probio5. There are lots of probiotics one the market. The Plexus one actually works. This is my autoimmune story. My hubby used to have to take off work when I needed to go to the dr because I was too tired to drive. I was so sick. I signed up as an Ambassador with Plexus to get the wholesale price. But I only sell a little. I don't try to sell. I know I never want to be that woman who was miserable ever again. I plan to take Plexus for life because without it life was passing me by.
 

amarah

Contributing Member
ETA I've also been on Ivermectin weekly since January.It is said to have anti-inflammatory properties so this may be contributing to my improvement as well.
 

Countrymouse

Country exile in the city
I thought it was KNOWN that fibro was an auto-immune disorder? Pretty sure I have it, though I don't have an official diagnosis (I have several other auto-immune conditions). Diet changes help; getting enough sleep helps a lot; reducing stress helps; a little exercise helps (but too much makes it worse).

Kathleen


Me, too. I had always heard it was in the same family as Lupus and RA---both auto-immune diseases, not nervous-system based nor brain-based.
 
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