There’s a big elephant in the room in both fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) and it’s women. The fact that a lot more women than men have these diseases must mean something, yet except for Dr. Klimas’s and Gordon Broderick’s modeling in ME/CFS, few have attempted to ask why.
These researchers do. In “Immune System Sex Differences May Bridge the Gap Between Sex and Gender in Fibromyalgia“, they assert that the gender imbalance tells us something vital about a disease that has often stumped the medical community.
Do gender and autoimmunity hold the keys to fibromyalgia?
Fibromyalgia’s name suggests it’s a muscular disorder but it’s generally considered to be a central sensitization disorder. It’s a neurological disease – or at least a disease with a large neurological component – treated largely by rheumatologists. It’s a real disease that all too many doctors shove into the psychosomatic slot.
One has to look no further than three FDA drugs approved for FM for evidence that the medical profession doesn’t have a handle on what’s going on. The fact that none work particularly well (30% of patients get about a 30% benefit, the authors report) suggests the drug manufacturers have been looking in the wrong places for the answer to FM.
The idea that FM is a typical central sensitization disorder (i.e. a central nervous system pain amplification disorder) doesn’t cut the mustard, either. Yes, they argue, pain amplification is present in FM, but not in the way most researchers think.
A Neuropathy-Induced Autoimmune Disease
Instead, they propose that FM is a “neuropathy-induced autoimmune disease”. These Mexican researchers believe that damage – perhaps even a small amount of damage – to nerve cells triggered the immune system to mistakenly attack the parts of the central nervous system that produce pain and other symptoms.
They’re definitely in the minority with their autoimmune hypothesis, but with autoimmune models emerging in ME/CFS, small fiber neuropathy, and postural orthostatic tacyhcardia (POTS), they may not be for long.
The authors propose that nerve damage comes first – and kicks off an autoimmune process.
Autoimmunity has been discarded in FM, the researchers believe, because the inflammation found in FM is not similar to that found in many autoimmune diseases. The type of inflammation found in FM, they argue, however, is found in some autoimmune diseases. (In both MS and FM, the authors believe the inflammatory component researchers have long looked for does not show up in the blood because the disease is mostly taking place in the brain.)
Things Accumulate
Instead of being due to one specific cause, autoimmune diseases develop when risk factors accumulate. The authors
The authors laid out a number of factors which suggest an autoimmune process is present in fibromyalgia.
Being Female – Women may live longer than men but they’re also far more likely to come down with an autoimmune disorder. Approximately 80% of autoimmune patients are female.
It turns out that women are immunologically set up to have more issues with autoimmunity.
The ability to bear children has shifted women’s immune systems – making them more susceptible to autoimmune diseases. (Image by Dan Evans from Pixabay).
You can blame the kids. The Th2 immune bias which assists with fetal health also enhances the humoral (antibody) portion of the immune system that triggers much autoimmunity. Women also tend to have more of the immune cells that participate in autoimmunity while men tend to have more cells focused on keeping the immune system in check.
There is a plus side. Women, with their revved up immune responses, are generally better at fighting off infections.
Female Hormones – Estrogen, the main female sex hormone, is associated with enhanced antibody responses, and a reduced ability to filter out autoantibodies (weaker tolerance). Testosterone, the main male sex hormone, on the other hand, enhances immune tolerance (autoantibody removal) and reduces antibody production.
Age of Onset – The typical age of FM (and ME/CFS) onset – sometime in middle age – tracks with the authors’ autoimmune hypothesis, as well. Autoimmunity is a long process which often comes to fruition in middle age.
Increased Autoimmune Comorbidity – Autoimmune diseases like to play with each other and an astonishing array of autoimmune diseases have been reported increased in FM (rheumatoid arthritis, systemic lupus erythematosus, ankylosing spondylitis, Sjogren’s syndrome, vasculitis, polymyositis, spondylarthritis, inflammatory bowel diseases, celiac disease, and diabetes mellitus type 1).
Small Fiber Neuropathy (SFN) – a recent study suggests that the SFN commonly found in FM is very likely autoimmune in nature.
Others – A 2019 study found that a substance called VGLL3 which regulates immune response genes (and has nothing to do with sex hormones) is more abundant in women.
The Gist
- Fibromyalgia largely remains a mystery. We know that central sensitization is involved but how it came to be remains a mystery. Plus, other parts of the body are involved.
- These researcher propose that FM is an “neuropathy-induced autoimmune disease”; i.e. the disease starts with damage to the nerves and over time morphs into an autoimmune disorder when the immune system responds incorrectly to the “cellular debris” produced during the nerve damage.
- The authors note that women are much more likely to come down with FM and autoimmune diseases than men.
- Women are immunologically and hormonally set up to have more problems with autoimmunity.
- They produce more antibodies – the main drivers of autoimmunity – and are less effective at regulating them than men. (They also tend to be more effective at fighting off infections.)
- They produce more estrogen – which increases the antibody response – and less testosterone – which dampens the antibody response – than men.
- The common occurrence of FM during middle age also tracks with other autoimmune diseases.
- The authors proposed that researchers screen tissues, blood and cerebral spinal fluid for evidence of autoantibodies.
An Autoimmune Model
These researchers propose that an infection or some other factor which damages the nerves starts the autoimmune process off. The damage in and around the nerve may not be large at all but if it liberates too many antigens (the structures on cells that antibodies latch onto) for an antibody-dominant, poorly regulated immune system to handle, trouble may follow.
Antibodies that attack our cells are formed all the time but our immune system has ways to filter them out. It can get overwhelmed when too many antigens are present and form antibodies which mistakenly attack our cells.
The authors believe something similar to FM is happening in multiple sclerosis (MS). Multiple sclerosis, they report, can, in its early stages, be “more or less” controlled with antiviral drugs like interferon. As the immune system reacts more and more to the “cellular debris” produced by the infection, the disease changes. What began as a pathogenic attack has morphed into an autoimmune reaction.
Continuous stress provides another way to feed an incipient autoimmune process because ongoing stress suppresses the immune response (including apparently the part of the immune response which removes autoantibodies) leaving the body more open to infections and autoimmunity.
Proving Autoimmunity
If FM is understood to be an autoimmune disorder, treatment options would greatly expand. Proving that is going to take some doing, however, and we’ll see if the small FM research community responds to their call. The authors propose:
- Screening the tissues in the nervous system that are involved in pain amplification for autoantibodies.
- Screening of the blood and cerebral spinal fluid for autoantibodies or autoreactive white blood cells.
Time will tell if they’re right or not but the interest in autoimmunity in FM, ME/CFS and related diseases is growing. Check out some of the autoimmune doings going on in these diseases.
Autoimmune Doings In and Around Fibromyalgia
- A small paper recently charted the positive effects IVIG had on small fiber neuropathy in FM.
- Another study found that the type of small fiber neuropathy found in FM tends to be associated with autoimmune diseases.
- Novel Sjogren’s Syndrome autoantibodies were recently found in about a third of FM patients.
- Jill Schofield MD recently released a paper charting how she treats autoimmune small fiber neuropathy – a form of small fiber neuropathy that could be quite prevalent in FM and ME/CFS.
- Jonas Bergquist has reportedly confirmed Carmen Scheibenbogen’s autoantibody findings in FM.
- Dysautonomia International has launched an IVIG study in POTS – a disease with an apparently large autoimmune subset.
Treatment Takeaways
- Given the rapid and ongoing development of drugs to treat autoimmunity, showing that FM is an autoimmune disease would likely greatly expand the treatments available.
- A recent paper suggested that IVIG may be helpful for FM patients with small fiber neuropathy.
What is Fibromyalgia?
We’re left with the question: what is fibromyalgia? We know that central sensitization is present but why has that happened? And why is a peculiar form of small fiber neuropathy so common? How about the prominent gender imbalance? Why do so many people with other pain conditions develop FM? Why is migraine so common?
Mysteries abound in FM. Sympathetic nervous system activation, herpesviruses, mitochondrial problems, blood flows to the muscles, autoimmunity, hormonal issues, metabolic problems, etc. have all been posited to play a role. What seems clear is that like ME/CFS, FM is a complex disease that affects many systems. Whoever figures out FM will have to account for all of that. Autoimmunity is one hypothesis which probably could.
Interesting connections, especially if you have already been diagnosed with neuropathy.
I came to similar conclusions after reading your article on small fiber neuropathy and have focused more seriously on following an auto immune diet protocol.
After becoming close friends with someone with MS I saw so many similarities between our symptoms, plus EBV implications in triggering both diseases. Is Fibro just pre-MS? MS-lite?
And as an aside, MS seems as hard to diagnose definitively as CFS/FMS (or at least its very expensive – MRI’s etc). There is no simple diagnostic test for MS. So why aren’t MS patients as marginalized and blamed like in Fibro/CFS? Or is the damage just so much more severe it can be picked up in a MRI image? Bringing me back to is FM just Pre-MS, or pre-detectible MS?
I believe MS gets more credibility than ME/CFS/FM because signs of overt physical damage to neurons in the brain can often be found on MRI’s – as you suggested. MS wasn’t always treated so well. Rather incredibly at one time many in the medical community thought MS was a psychological disorder.
Yes, I believe MS used to be called “hysterical paralysis”. (WebMD lists hysterical paralysis as now called “conversion disorder”).
This 2015 article from the New Yorker (reporting on the IOM report) describes the history, referring to both ME/CFS and MS: https://www.newyorker.com/tech/elements/chronic-fatigue-syndrome-iom-report
Hi Cort
I am hoping a trial of LDN may shed more light on the autoimmune story.
Interesting thoughts. The new Yorker article is, I think, thoughtful and intelligent.
Currently there seems to be no incentive/sanction for disbelieving doctors to change their attitudes/practices.
I can’t see how doctors are not going to have to take responsibility for their inaction in the future. Their response is so pitifully ignorant and they’re so blissfully unaware of this.
Tracey Anne, amen to that.
Research suggests 36% of women who suffer from Endometriosis have co-morbid ME/CFS. Endometriosis is a very stigmatized disease also and it takes years to get a diagnosis it took me 28 yrs and only then after several bouts of ovarian torsion due to endometriomas. That was not the end of my struggle it was after this the gaslighting began in earnest over chronic cystitis, painful bladder syndrome being given meds for IBS when my symptoms were Endo related etc.
Nice to see an article about FM. I have both ME and FM and was diagnosed with FM years before ME. I find more doctors receptive to my FM than ME.
The two diseases, probably autoimmune overlap considerably and figuring out the etiology of either ME or FM will help with the other.
Interesting to read the possibility autoimmune disease may take years to show symptoms or for me the symptoms were mild for years. I diagnosed my own ME, reaffirmed by a specialist. However if there were treatments that actually worked for fibro I may not have also developed ME. Or I’ve had ME all these years. The treatment for FM was exercise and exercise, which I faithfully did until I literally crashed.
So any research on FM will surely help ME.
I agree that research on FM will help ME and vice versa. I look forward to more researchers recognizing the ties between these diseases and including them together in more studies.
Cort, I have been diagnosed with FM and CFS as well as many other things in the last 4 years since I was diagnosed with 3x Negative Invasive Ductile Breast Cancer stage 3. I went thru extremely strong doses of chemo (2 complete cycles with a lot of medical issues/side effects) and an extremely long and high doses of targeted radiation with extensive damage from burns on my chest. Since then I have been diagnosed with osteoarthritis, Barrett’s esophagus, degenerative disc disease in my spine, central nervous system disorder, ulcers in my throat and lungs, IBS, and more. I too have been told to keep moving and doing exercises. I work 50 to 70 hours a week doing marketing and having lots of stress. Due to all of this and the medical appointments I am up to my ears in medical debt which is causing large amounts of debt in everything else (normal life bills) that even though a make a really good living I can barely make my rent. I have medical insurance but I go to about 7 different specialists and I have had 20 surgeries and procedures in 4 years. Most nights I am in so much pain that I just sit and cry. I have been told that I have autoimmune issues but not what exactly. I have been told that my tests aren’t showing inflammation but I can barely move my joints at time. I sometimes have to use a cane and sometimes a Walker just to get around but many think it is all in my head, including the rheumatologist I went to. Any suggestions?
I’m in the same boat Kathryn. I have had FM for at least 24 years – diagnosed as a psychological condition (who wouldn’t be depressed and anxious…so that is what I was classified as and treated for). As you, I kept moving…working 18 hour days, making sure my hands were never free of work/activity. I was finally diagnosed, after changing doctors, in July, 2017. I got pneumonia in the fall of 2017, which was, apparently, the last trigger ME needed to emerge. I was diagnosed with ME in March 2018 and have been functioning somewhere between 20% and 50% of my pre-illness capacity ever since. My hypothesis is also that if I had been treated appropriately for FM that I would not have continued to push, push, push until I collapsed and that I might never have “developed” ME.
My understanding is that ME is genetic but that it takes stressors for it to emerge (I am a research psychologist but NOT at all an expert on ME or FM…I just have them). I’ve had a lifetime of “stressors”…extended trauma if I’m being completely truthful, and that time in my life, 2017, when my dad passed away and I was responsible for his care, was one of the most intense emotional situations of my life. Perhaps ME had been present my entire life just waiting for the right circumstances to show itself. There is so much I don’t know…I’m just trying to figure out how to live with it.
My doctors are now accepting of both (I kept giving them research papers on ME and FM when I first met them and the interns informed me that they get no training on autoimmune issues in their medical education…I go to a teaching hospital clinic). Some of the interns have become interested in ME/FM as a potential specialty (yeah!) and my PCP warns every new intern that I will try to recruit them to FM/ME research/treatment….it’s a gentle running gag with a strong serious note. They now work with me to try and manage my health and life circumstances in a holistic way. That makes me a very fortunate person in the land of FM/ME. It doesn’t hurt that one of them has ME and is a psychiatrist…no doubt on their part at all. But more credible research, widely distributed in a manner that is easy to absorb, will go a long way. Kept it up Cort!
Stress, and trauma. Definitely resulted in my FM. My husband was diagnosed with small cell cancer of the bladder-extremely rare w/no known effective treatment. We went to Vanderbilt, and then MD Anderson. It was an awful journey-I could literally write an expose about our experiences with the medical profession. During this 4 year period, impossible family conflicts on a constant basis. Simultaneously, my mother was diagnosed with ALS, and my dad was already suffering from Altzheimers. Stress was overwhelming, I could not sleep. I functioned in a gray out for years. My body was like a car in overdrive, racing, which couldn’t be kicked down. During this time, I began to have the tingling and pain in the legs. Brain fog. Pervasive sleeplessness and nothing helped. I could relate to Michael Jackson resorting to an IV of lorazapam. I took that for a while but it made my brain fog worse and I wasn’t getting any deep sleep at all. I didn’t have a minute to consider my own health or have time to question what was going on – I just attributed it to the long-term stress and trauma. Every single minute of every day, I had a headache and pure exhaustion. When I look back, I don’t know how I functioned at all! After my husband died, I noticed the sensations moved up to my hands and the pain in the legs was worse than ever. It was only then that I started to search for answers, to see rheumatologists, neurologists, eventually making my way to a support group for FM. This FM was confounding, and very worrisome, with so many seemingly unrelated symptoms, it seemed impossible they could be related. Central nervous system could certainly explain a lot. Even in my FM group, my symptoms didn’t mirror others’, though there was a considerable overlap of symptoms. Eventually I went to Dr Oaklander and had the small fiber neuropathy test which was positive. Honestly, the doctors I had seen over 2-3 years were not helpful. I don’t think my experience was unique. Your always your own best advocate. That certainly was the case with my husbands cancer. And healthrising has been very useful and informative. It was the result of an article here that I made my way to Dr. Oaklander. At my worst, I was gravely concerned I was going to end up on disability. With a number of prescriptions, trial and error, I am grateful to be i n a fairly stable state with most symptoms managed via meds. Very grateful. For me, my FM came to fruition as a result of trauma, stress, and lack of restorative sleep (for years). I don’t know how one would be considered for Dr. Pidgen’s trial…. it seems very worthwhile and promising. Thanks Cort for all you do for our community. You’ve helped more people than you’ll ever know. Thank you.
I can’t tell you how tired I am of hearing doctors tell me there’s nothing they can do for my FM. They don’t even try. I wanted to be part of the new trial study but my insurance doesn’t cover it. I hope they come up with something soon!
Hi Cort- this is very interesting. I’d like to look into the Mexican researchers. I don’t see their names or the citation? Could you please provide? Thank you for all that you do!!
Thanks for letting me know. I forgot to put it in – which I just did – and here is the link – https://pubmed.ncbi.nlm.nih.gov/32009888-immune-system-sex-differences-may-bridge-the-gap-between-sex-and-gender-in-fibromyalgia/?from_term=fibromyalgia+immune+gap&from_pos=2
Thanks for asking, Barbara, and for providing the citation, Cort. Perhaps you might swap out one instance of “researchers” or “Mexican researchers” with their names, as in : “researchers Meester, Rivera-Silva, & González-Salazar assert that the gender imbalance tells us something vital about a disease…”
I’m sure many of us will be keeping an eye open for future work done by Meester, Rivera-Silva, & González-Salazar.
There is another aspect to the predominance of women with FM/ME/CFS, and that is our cultural context. Whilst this may not apply to all female sufferers, research has shown that women who have experienced domestic abuse (Including emotional mistreatment and coercive control) are twice as likely to develop fibromyalgia.
https://www.birmingham.ac.uk/news/latest/2019/12/domestic-abuse-chronic-pain-tiredness.aspx
It’s interesting the effect that adverse events like that have on the immune system!
Margaret, thank for posting this link and the article! I was abused, in many ways, when I was a child. It went on for several years. Also I have been in toxic and abusive relationships. I’ve had fibromyalgia since the last eighties and early nineties! Of course, back then 4 out of 5 doctors said that it was in my head! I know from many years of counseling that the sexual, emotional and physical abuse left me with symptoms of ptsd. I knew that there had to be a correlation between them. I was also diagnosed with CFS/ME at that time. I appreciate that you shared the article here! It helped me to understand more about these diseases!
Trauma is inflammatory I have heard so that makes a lot of sense
And females are more often abused than males so that could be why too!
I agree there may be a connection between being a domestic abuse survivor. One need not ever be physically abused to be that; emotional, verbal, mental abuse and coercive/gaslighting/narcissistic based abuse definitely made me physically ill. First came the FM diagnosis after a lifetime of being athletic and healthy, then the ME. I have also believed for a long time that FM and ME may well be one and the same conditions, manifested differently in many patients.
’emotional, verbal, mental abuse and coercive/gaslighting/narcissistic based abuse definitely made me physically ill.’
Yes, I believe this is what tipped me over the edge too, RivkaC.
I was, I believe already susceptible – immune issues in the family, adverse childhood experiences, Epstein Barr and being a middle aged female.
However it was the extraordinary level of psychological stress/trauma I experienced due to what I would call repeated psychological assaults by an authoritarian and powerful individual, that pushed me into another realm. Like going through a non-return valve – there was no way to get back.
I was actually a trainee counsellor/psychotherapist and the authoritarian and powerful individual was one of the trainers They were then backed up by their colleagues…
There’s nothing quite like a psychological training to equip someone to be a skilled expert in abuse, psychological or otherwise and to be able to get away with it…
That said, their time may be up, as I’ve been involved in making formal complaints for many years. My first three complaints fell on deaf ears but I believe my last complaint (ongoing for almost two years now) has hit home. I’ll see…
Take care,
Tracey
I have thought this all along and the Mexican research in my opinion is spot on. I had done my usb research in the hormonal link as this would explain, why more women!! I pushed for oestrogen, progesterone and testosterone treatment after testing low in all 3. I have since had a reduction and in some cases a disappearance in the following; temperature sensitivity, pain upon touch, all over muscle pain and flu type symptoms. Inability to exercise, fatigue, insomnia, depression, mood swings, brain fog and lack of creativity and procrastination, food sensitivities, oh and libido issues. I am by now means cured, I still get mini flares, plus fatigue, but, I am a million times better!! I look forward to seeing the output of the continued research. The hormones I take are top quality and are plant (yam and soy) based, that mimic the bodies own hormones, on prescription only, NOT herbal.
Don’t forget Thyroid and Adrenal connection.
Thyroid is highly sensitive to environment.
TSH lab test is next to worthless.
RonP, correct. Some DO’s and naturopaths will do the far more extensive thyroid testing needed to get to the real root of thyroid issues.
Finding a doctor to discuss the very real condition of adrenal fatigue is nearly impossible, and that includes endocrinologists.
I am a 64 year old male who was diagnosed with FM at age 40. I believe it is autoimmune and there are generic markers as such. My father had Lupus and my grandmother had issues that could not be diagnosed. My daughter has now been diagnosed with FM. That is why I suspect a genetic connection.
Hello, your post is of huge interest to me, is there any chance you could point me in the rightdirection to be tested for hormones and given a prescription? Xxx
My fibromyalgia has improved in a lot of ways over the years, and was at its worst in my teenage years when my hormones were probably highest. I’m now 30 and since age 25 I’ve been a lot better in many ways. However, each month now, like clockwork, when I am ovulating my skin feels on fire and all my symptoms return for a couple of days. With mild symptoms then returning around the start of my period. I find this fascinating as this is when oestrogen peaks! There’s definitely something in the hormone effects for sure!
Thank you Lorna for sharing this post, and it is truly inspiring and its always good to hear from someone experienced.
It may or not be autoimmune it may be in the back of the throats from what researchers in Japan have been saying for a while now NASOPHARYNGITIS as much as 80% was Cured of long mouth swabs dabbing in the nose or throat using a
special medicine, some had to be treated twice it came back…Every time I brush my teeth & gargle I spit out clear red blood or maybe the Eagle Syndrome bone is causing the tears in my throat…I just saw my Dentist saying possible TMJ but most
diagnosed with this condition go on to get the diagnosis of Eagle Syndrome he did say the Bone left side is dangerous around my Cortnoid area, maybe if the bone is removed I would stop spitting clear blood from the throat or it is Nasopharyngitis
all along & not an infection. Some who were Cured were in wheelchairs they also Published a Paper as well. I have a History of whiplash & a concussion to my Jaw getting struck with a Hydraulic bar that slipped while jacking some hatch covers on
a Ship & these can cause TMJ in some…He suspects Eagle Syndrome but if Nasopharyngitis there is a treatment that works but it takes time with repeated applications on the swabs
Aidan: I take that you have been diagnosed with FM. If you have the association between both TMJ disorder and chronic nasopharygitis (NPh) AND FM are significant i.e. more people with TMJ and NPh are diagnosed with FM than “normals” (people free of these conditions. See my notes below.
http://www.livingwitheagles.org
While FM may not be one disease it does have some simple associations. I do not agree that the main pathology is central i.e. in the brain. The association of FM with chronic pain conditions is high e.g FM occurs far more in people with a history of pud (peptic ulcer disease) and duodenal ulcer than in “controls”. People with chronic spinal pain conditions have a far higher incidence of FM than “controls”. People with any chronic pain condition have a higher risk of FM. Accepting that FM diagnoses are a correct identification of the condition: We must accept these associations as relevant.
What has changed in these conditions? There is clear evidence that the peripheral nociceptors in small fibers has changed. These nociceptors (probably TRP receptors) are being affected by an IGg antibody. It is a well known auto-immune mechanism which accounts for a number of immune system disease triggers eg in nephropathy the cause is an interaction between an IGa and an IGg immunoglubulin causing damage to the small fibers in the kidneys (usually associated with diabetes.) The renders the condition to be an auto-immune generated disorder.
In most cases of FM a similar attack is made by an IGg antibody on the nociceptors which have been “ravaged” by chronic pain signals. In a sens the immune system is now identifying the protein structure of the nociceptors as foreign protein. In ME the protein receptor so far implicated is the TRPM3 receptor which is “multi=functional” because it has 12 variants.
To make headway in both FM and ME more research is needed to identify the changes to TRP channels. The research MUST occur at this biochemical level.
Thank you for this info, Dr. Hodgson. I’ve done a bit of reading about IGg antibodies and will be doing more research on the matter, and have never read about the plasma membrane of cells being potentially involved in FM/ME.
Along with severe FM (Rheumatologist diagnosis),ME, & every associated disease, disorder & symptom, I’ve also had 3 sets of PE’s with the past 9 years & on anticoagulants for life. Due to this, I cannot have any form of hormone treatment . The GP’s do not seem to care. I have given up. I have no one, can do nothing & am nothing but an existing burden. No current medication works, Morphine only relaxes my muscles & dampens my excruciating pain, but it never goes, ever. I’m never prescribed enough, could do with 1-200ml more every 4 weeks. I get 500ml, it lasts +\- 3 weeks & don’t even take it as often as I truly need it. As well as long-term insomnia, I now have constant ‘’painsomnia”, so much so I either cannot get to sleep, wake up screaming in agony or become too scared to even try. I seriously need some help & there seems to be no one. I am sorry to everyone who has read this far, I never used to be negative, things have just gone too far for far too long.
I’m really sorry for your suffering Lucy. Is an enormous burden to carry. I hope you find appropriate care soon and some form of treatment that helps ease the pain. Gentle hugs
Lucy,
What you describe sounds like an absolute nightmare…
No need for an apology – I find being able to express my thoughts and feelings really helpful.
I hope that a cohort of caring, emotionally intelligent, patient centred doctors will emerge out of this cold, uncaring, dismissive and cruel era in doctor/patient relations.
I have ME/CFS, not fibromyalgia, but I’ve experienced a small improvement in symptoms since starting a progesterone-only birth control pill. Perhaps the extra progesterone (although a synthetic version) is creating a better progesterone-oestrogen balance. I wanted to try this because I had read that progesterone helps the body to break down histamine, and I have mast cell issues.
I’m curious how you know for sure you don’t also have FM. Do you have pain? Everyone I know with ME does have pain, often intense and debilitating. Glad the progesterone has helped you. 🙂
Do you think oestrogen makes us worse ?
These are the same diseases. ME/CFS is the new term for fibromyalgia. So you indeed have fibromyalgia.
Maybe I wright my question along with the wrong blog post, but I wonder whether SFN might be causing the autonomic nervous symtoms in ME/CFS?
I have not read anything about it, what I remember, but when you mentioned the connection POTS and SFN and those autonomic symtoms in FM it is so?
Is there any papers on that? ME/CFS and SFN?
No papers yet but Systrom has stated one indicating it is present in ME/CFS is coming out, so it is possible
This is still on Mayo Clinic’s page about ME/CFS. I check from time to time out of curiosity.
“Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.
Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.”
I will write to them but can’t one of the scientists with lots of letters behind her/his name and an affiliation with a top university write to them to correct this info? Lots of people consult Mayo because of its name and because of the ease of reading their website.
Please forgive any spelling or grammatical errors___crashing with heavy brain fog. Sounds like an airplane going down. Feels like one too.
Graded exercise is a baloney treatment for ME. It’s the standard in the NHS in the UK and has made many thousands of patients worse and increased their debility. This is one time when Mayo is uninformed and off the mark.
Yes, it seems peculiar to me that a profession, generally regarded as being intelligent, can be so largely uninformed and so oblivious/unconcerned to the harm they are inflicting with their misinformation.
There are exceptions around the world but these interested, caring and better informed doctors are unfortunately in the minority.
I live in Ireland and the Health Service Executive (HSE) here is still referring people viewing their website on ME/CFS, to the National Health Service (NHS) in the UK. The NHS still promotes CBT/GET as a part of the treatment.
Apparently the review of these treatments will report in October 2020.
I would have thought that if there was serious doubt over the safety of a treatment, that alarm bells would go off – but apparently not.
I don’t know if anyone’s seen, or is able to see, The Bleeding Edge on Netflix. It’s looking into medical devices/implants that are placed in the body and the devastating effect this is having on the health of some people with these medical interventions.
The medical profession does seem to be floundering…
I don’t know about ME/CFS but a graded exercise approach 100% works for me. Gradually increasing exercise makes a world of difference in my case. The more immobile I am the more pain I’m in and eventually I get to the point where I have a flare up.
Exercise produces BDNF so in theory should repair damage in the brain and is anti inflammatory so theoretically for FM it should help.
Thank you for this info, Dr. Hodgson. I’ve done a bit of reading about IGg antibodies and will be doing more research on the matter, and have never read about the plasma membrane of cells being potentially involved in FM/ME.
The unfortunate co-occurrence of aforementioned risk factors elicits an autoimmune disease. It is important to highlight that the initial trigger may be transitory, but the induced autoimmune response is chronic due to the memory of the adaptive immune response. Aforementioned risk factors all apply to FMS (see Section Fibromyalgia: Introducing the Autoimmune Hypothesis and Figure 1 ).
Dear Cort my left side of body get paralyzed is cfs or something other
Yesterday I walk around 6 km and bike ride around 40 km since then I am completely bedridden I have mktg job but I am not enjoy it I have severe weakness in my left side of body trunk back left leg .
I think funding for fibromyalgia/ cfs got off to a bad start decades ago when research for women’s diseases was poorly funded. Research for female cancers got turned around.
People with cfs have a hard time getting past Go in the game of life. Funding for the disease is in the same rut.
For the last 35 years I be been diagnosed with lupus 3or 4 times and Ms 3 times every time I’ve improved with treatment. Once methotrexate and nutritionional supliment iv’s. Several times with steroids, once with long term low dose steroids , and once with planiquil,. Methotrexate injections and eventually a biologic. Each time I was eventually undiagnosed with the disease. Only to start over and get worse and worse. I also have a diagnosis of fibro/cfs/me and am on disability for these, whatever it is acts a lot like Ms, but the lessions I had in the spine have resolved. It’s obviously autoimmune.
I’m a polymyositis patient with fibromyalgia! Reading this (and the comments) made me feel so much less alone. I thought I was one in a million with this combination of illness, but it turns out it’s more common than I thought!