While some people report that their fibromyalgia (FM) occurred after an infection, the idea that FM can be triggered by a pathogen and, in some cases, may be considered a post-infectious disorder really hasn’t made its way down to the FM research community at large.
In 2004 part of Bergen’s water supply was contaminated with Giardia lambdia
The Gist
- Long COVID presents a once-in-a-generation opportunity to learn about how infections can cause long-term health problems years after the infection has apparently been resolved.
- Another infectious event – an outbreak of giardiasis infection in Norway about 15 years ago – presented a similar opportunity. Studies since then have identified increased incidences of chronic fatigue syndrome (ME/CFS) and irritable bowel syndrome (IBS) in those infected.
- This study found an almost 3-fold increase in people with fibromyalgia after a Giardia lamblia infection. People who came down with fibromyalgia (FM) often also came down with irritable bowel syndrome and/or chronic fatigue but the same was not true for people who came down with IBS – as many people with IBS patients did not experience FM. This suggests that infectious events can produce a wide variety of outcomes – something the long COVID studies have the opportunity to pick up in spades.
- The study also suggested that post-infectious fibromyalgia may be worse than fibromyalgia which was triggered in other ways.
- This is the first study to show that infections can trigger a dramatic increase in the incidence of fibromyalgia – putting FM solidly in the post-infectious disease category for the first time.
- The huge long COVID studies underway should tell us much about how infections can trigger chronic illnesses of all types.
How good to see then, some dogged Norwegian researchers add FM to the list of conditions they’re tracking in people exposed to an infectious outbreak that occurred in Bergen, Norway back in 2004. Their recently published study “Prevalence of fibromyalgia 10 years after infection with Giardia lamblia: a controlled prospective cohort study” is one of the few to assess FM in the context of being a post-infectious disorder. The six papers they’ve produced over time make the Bergen Giardia lamblia cohort one of the most consistently followed cohorts of post-infectious patients seen.
This cohort is notable in that it meets the criteria for “cleanliness” (one pathogen attack at one point of time) that has so wowed researchers focused on the long-COVID patients. It all came to pass in 2004 when a water reservoir for the city of Bergen, Norway became contaminated with Giardia lamblia. About 2,500 of the almost 50,000 people of Bergen were subsequently treated for giardiasis. G. lamblia is a protozoan that often causes intestinal distress, but, at least in the scientific literature was not known to cause post-infectious illnesses until the Norwegian group published their findings.
In 2007, someone had the presence of mind to gather together a large cohort of people with confirmed giardiasis and track them and an even larger control group of unexposed controls. Several studies over the years have confirmed the association between exposure to Giardia and the subsequent development of chronic fatigue syndrome (ME/CFS) and irritable bowel syndrome (IBS).
The results were pretty stark. Ten years after the outbreak, no less than 43.1% of those Giardia exposed had irritable bowel syndrome (compared to 13.7% of controls). Twenty-six percent had chronic fatigue (compared to 10.5% of the controls). This is the first time they’ve asked whether the incidence of FM ticked up, as well.
They used the Norwegian version of the 2016 modified Fibromyalgia Survey Questionnaire (FSQ) – which they reported was a validated tool that could accurately assess fibromyalgia outside of a doctor’s visit. (The FSQ consists of a Widespread Pain Index (WPI) which assesses the number of painful body areas, and the Symptom Severity Scale (SSS) which assesses symptom severity.) They also assessed the presence of IBS using the Rome III diagnostic criteria, and fatigue using the Chalder Fatigue Scale.
Results
The prevalence of fibromyalgia almost tripled in those exposed to the Giardia pathogen.
The rate of fibromyalgia almost tripled in the Giardia exposed group (8.6%) compared to the unexposed group (3.1%). Digging a bit deeper, they found that coming down with FM almost always involved coming down with IBS (87%) and very often with “chronic fatigue” (69%). Almost 5% of those exposed to Giardia got a kind of triple whammy and met the criteria for FM, IBS and chronic fatigue ten years later. Only 0.4% of those in the control group later did.
The Giardia / FM combination suggested that a post-infectious onset be the worst way to come down with FM as people with both Giardia and FM were significantly more likely to have IBS and/or chronic fatigue than the people in the control group who developed fibromyalgia by other means.
This study clearly sets out what so many of us know but which has been documented in too few instances: that post-infectious illnesses can be severe and lasting. It also shows the different courses that post-infectious illnesses can take – something we will surely learn about in spades as the NIH and others follow their huge cohorts of long-COVID patients. Many people with post-Giardia IBS, for instance, didn’t experience widespread pain (16% had both). Similarly, people with severe fatigue often didn’t meet the criteria for FM (22% had both).
Post-Infectious Diseases: Fibromyalgia, ME/CFS, Long COVID, and Others
In contrast to ME/CFS where many pathogen triggers (EBV (infectious mononucleosis), Ross-River Virus, Coxiella burnetti, SARS CoV-1 and 2) Unfortunately, few studies have looked at post-infectious onsets of FM. An enterprising research group assessed the rate of fibromyalgia in chronic hepatitis, and in 2019 a French group concluded that people with post-treatment Lyme disease often look very much like fibromyalgia. That group, though, went so far as to say that “considering available data on fibromyalgia, one may wonder whether post-treatment Lyme disease syndrome described in Lyme disease should instead be considered as post-infectious fibromyalgia.” Of course, something similar could be said of post-treatment Lyme disease and ME/CFS.
Just how closely related all these diseases really are was the subject of a vigorous discussion at the recent Massachusetts ME/CFS and FM Association webinar. Some researchers posited that many different pathways to ME/CFS exist – all of which may end up in a common end state. Gulf War Illness (GWI) is a case in point as it has near-identical symptoms to ME/CFS but two appear to have quite different immunological pathways.
On a positive note, Nancy Klimas’s modeling efforts suggest, interestingly enough, that whatever the origins of ME/CFS and GWI, that the same treatment approach might work in both diseases. The use of etanercept/ mifepristone might – via resets of the immune/endocrine systems – be sufficient to boost both GWI and ME/CFS patients out of their illnesses.
In any case, it’s good, in the time of long COVID, that the potential for a post-infectious onset of fibromyalgia is being recognized. Of course, it goes beyond the infection itself. A post-infectious disease likely has a strong immune component – something that has been little researched in FM.
We have little idea how often or even which chronic diseases are triggered by pathogens. After noting that asymptomatic coronavirus infections can turn into long COVID, Maureen Hanson suggested that it’s possible that everyone with ME/CFS – even those who did not associate their illness with an infection – could have had an infectious trigger. Enteroviruses – ubiquitous pathogens often associated with the common cold – were one possible culprit.
We know that infections can trigger ME/CFS, FM, POTS, IBS, post-treatment Lyme Disease, post-Ebola Virus Syndrome, some autoimmune diseases, and I’m sure other diseases, but we don’t know how or how often. The huge long COVID tracking efforts should tell us much about the manifold effects an infection can apparently have on the body even long after it’s been seemingly resolved. The potential for an entirely new field of study has been opened.
We learned in the recent Mass webinar that the NIH’s Working Group for ME/CFS played a critical role in determining which symptoms will be tracked in the huge long-COVID studies. We don’t know what questionnaires are being used, but given the close relationship between ME/CFS and FM and the high incidence of pain found in ME/CFS, it would be astonishing if pain wasn’t being closely assessed – thus providing the opportunity to assess the incidence of FM in long COVID.
If it is, an entirely new slant on fibromyalgia may be revealed.
If you believe your FM was initiated or significantly worsened by an infection please let us know.
Absolutely! I had EBV as my triggering event and 8 months later was diagnosed with CFS and FM both, even though at the time, my exhaustion was the more immediate symptom. Now though, the FM has taken over since I’ve worked on helping the CFS for over 15 years and am really good at pacing. It seems the better my ME/CFS gets, the worse my FM becomes – I suspect due to higher activity levels.
I have always felt there was an infectious process behind FM. For what it is worth, between ages 5-25, I had three separate, lab documented cases of mono at ages 5, 13 and 25. In 1967, while working in a Microbiology lab, I was infected with Coxsackie viruses A21 and B3 which made me very ill. In 1987, it was suspected I had Lyme disease and in 1988, I was diagnosed with fibromyalgia. In addition, before the fibro diagnosis, I had dealt with annual bronchitis for almost 10 years and had had repeated episodes of pneumonia requiring hospitalization by the time I was 4.
Right before my FM symptoms started I had a respiratory virus and it felt like I just never fully recovered. It was initially diagnosed as mono but another Dr looked at the test results and said they didn’t indicate active infection with mono just that I had been exposed at some point.
My 17 year old daughter is having fibromyalgia like symptoms after covid earlier this year. So much pain, joint inflammation especially in knees and hips, and sleep disturbances are the most debilitating symptoms.
Have her doctor put her on gabapentin. I started it and my joint pain is getting so much better. Also do smoothies with beets, spinach, lemon, and berries and almost milk! I think beets were helping me, but gabapentin is incredible.
Really glad your smoothies and gabapentin are helping your pain. Gabapentin helps me slightly and makes me more tired if taken during the day. Get moderate pain relief from high dose of Cymbalta daily, altho nothing has alleviated sleep disturbances or low energy levels yet. Going to try ketamine for more effective pain relief. Maybe I need to look into your smoothies, too!
I’m now 63, had Covid 4 yrs ago. Identical post-Covid FM symptoms as your 17-YO daughter, along with ME/CFS. Blessed with exceptionally healthy life prior to Covid.
I developed fibromyalgia after a cat bite infection. It took two courses of antibiotics to clear up that infection. I have never been the same since.
I developed FIbromyalgia after a tick bite which revealed the tell tale bulls eye rash pointing to lymes disease. I wasn’t aware of the implications of this rash at the time and didn’t seek medical advice. I have never been the same since and I suffer with pain, fatigue, poor sleep, low mood and poor concentration. I have to manage my condition closely even after more than 12 years.
I like the elegance of this study and agree it has merit. I’ve had one chronic condition after another (a total of 35!) beginning in 1992: CRPS, FMS (1993), IBS, Erythromelalgia, sleep disorder and POTS (1994) are just a few. Researchers consider them all connected and the common denominator is likely viral. I don’t think it matters what particular virus attacks. Some researchers also think cancer can be initiated by multiple viral infections.
Mine was from long term untreated Lyme’s. I took the Epigenitics test and was 92% on their scale to be positive for Fibro.
Thanks Tim….It’ll be so interesting to see how all these diseases shake out. I so hope that long COVID will birth a vigorous post-infectious disease field. A lot will depend on whether the NIH decides to develop specific funding mechanisms that draw researchers into the new field so that it can grow. I won’t hold my breath but it’s certainly a possibility. I would hope that the role infections play in autoimmune diseases would be enough to spark their interest. Time will tell.
There also seems to be a generic disposition to Fibromyalgia. I have it, my mom had it and so does my sister’s daughter. It’s just another component of the mystery surrounding FM.
I also took the test and came back with 96%! I’ve been curious to see if others have taken the test and what their results were.
I had severe mono in 1968, got fibromyalgia 1990 during my brother’s death. I always suspect EBV set me for a lifetime of fibro pain.
My story is similar to yours, Steve. I had severe mono with jaundice in 1968. Spent that 16th birthday in the hospital with it. Fibromyalgia with chronic fatigue set in in 1993 and has worsened ever since. I believe it, too, was brought on by stress.
Very interesting, great to finally see some work being done and acknowledged in this area. For me it all started with a work related leptospirosis infection in 2009.
Since then I’ve been diagnosed with Fibromyalgia, or post-infectious fatigue (with chronic headaches), PTSD, or central sensitization all depending on the Doctor who making the diagnosis. Like a bunch of blind men trying to describe an elephant. One thing I do know and call it what you want, life has never been the same since 2009
There you go. It’s just crazy how the post-infectious field has been ignored. It would be illuminating to know how some fields get exposure while others struggle to get traction.
Or how different fields develop. ME/CFS has long been associated with infections and lots of immune studies have been done. FM has never been associated with infections and few immune studies have been done. More muscles studies have been done in FM than ME/CFS – which is just weird as exercise is much more limited in ME/CFS. Lots of central sensitization studies have been done in FM but few in ME/CFS. Many small fiber neuropathy studies have been done in FM and only one, I believe in ME/CFS.
Diseases take their own sometime baffling courses in the medical research field.
My question would be. What is it in our tissue/ nervous system that means we are susceptible to the virus. Not everyone exposed to the infection gets these syndromes. So it’s a virus reacting with smthg in my view
Bryn, may i ask what treatment you received for lepto, and if, at the time, it felt like the treatment helped at all?
Hey Sunie, I was unwell (with the lepto) for 10 days before any treatment was started, as at the time I thought I might of had a good dose of the flu. After a blood test p/u liver readings going through the roof and I started urinating blood it was the standard doxycycline of which I had a double dose. Lepto wasn’t officially diagnosed until a month or so later with follow up test (testing titres, sevor etc).
Since then it’s all been about symptom management of which I think I have tried most things. Currently on Topamax, low dose naltrexone (just started) and Tilray.
Dtrs say lepto should be long gone by now hence the other diagnosis but I know my body and I can name day/ time exactly when my life changed. One thing didn’t morph into another, I changed “bang” just like that.
Have you had a Leptospirosis experience? I would love to hear it.
Hi Cort I looked up etanercept and mifepristone out of interest, I’m wondering why mifepristone would be indicated as it’s used in second stage pregnancy for medical abortion?
@ Cort
I had seen the same, a pill used for aborting foetus, and causes associated vaginal bleeding, any idea how it is being used differently or off label use then?
Bryan, adding reply here as no reply button on your recent post.
Interest in lepto as animals can get it, and I worked with pets for years. So thank you for sharing how it made you feel. Interesting how doxycycline is such a go to medicine that helps such variety of illnesses.
( I even had a horse that was treated with doxycycline).
thanks again, sunie
Here is a link to an article Cort wrote several years ago on mifepristone and its use in ME/CFS.
https://www.healthrising.org/blog/2014/06/29/repurposing-ii-natural-killer-cell-drug-chronic-fatigue-syndrome/
I had my fibromyalgia diagnosed a year after having a chest infection that lasted for months and wouldn’t clear up. During the run if the chest I feel toon I also developed a kidney infection and that was followed by a severe bout of chronic urticaria with vasculitis and other complications. It was only via investigation into the urticaria that I was diagnosed with fibromyalgia and hypothyroidism
Yes, the same virus that caused my M.E, also caused fibromyalgia. It was a cold type virus. This was 2015. I notice that the day before I come down with a fever, the pain and fatigue lift considersbly- I feel almost normal. Ive always suspected these are both autoimmune conditions.
I also got PoTS from glandular fever in 1990, 25 years prior to getting M.E/fibro. Plus around the same time allergic asthma, a host of allergies, hayfever and IBS.
Thinking back, I think the IBS came first and rest followed.
Wow! Just wow! This sure explains a lot for me! I had severe food poisoning almost 30 years ago. I think it was within a year of that that I was diagnosed with IBS. Within two or three years later, I was diagnosed with fibromyalgia. Ten or so years after the fibro diagnosis came the ME/CFS diagnosis.
The interesting thing is I am currently treating both parasites & mold illness. In researching parasite treatments this past month, I finally discovered the cause of a strange symptom I have had off and on for years: giardia! I was tested for giardia & parasites years ago & the tests were negative. Turns out the tests are almost always false negative (which mine obviously were).
With parasites, you treat & if the treatment works, you have your confirmation of parasites, regardless of negative tests. Hopefully this info will help someone who may actually have parasites but doesn’t know because of a false negative test.
That is just fascinating Martha as I had a case of giardiasis a couple of years prior to coming down with ME/CFS. I tried one treatment which worked in part but had side effects and that was it. I would love to try it again.
My son had giardia at age 10, then a virus (unknown) at age 11, followed by three months in bed, then three months back at school part time. From then on he became worse and got ME/CFS dx.
Why am I not surprised? In 1962, just after my 30th birthday I had a series of 3 illnesses in a row. 1. Intestinal flu, 2 strep throat, 3 mumps.
With the mumps I got my first migraines. One month later I got fibromyalgia. Sixty years ago!! I am 89 now and still suffering. Help me
get well before I die!
Tested positive for covid Jan of 21, made full recovery. Experienced strange flu like illness (negative for covid) with high fever and severe body ache early March of 21. Seemed to recover fully. Awakened in the middle of the night late March with horrific pain head to toe. Many docor visits, x-rays, lab tests, steroids, and pain meds later I have just received diagnosis from a rheumatologist of post covid FM.
I’ve heard this again and again – seemed to recover and then either bam or a slow descent into long COVID. Sounds like you have a good rheumatologist. 🙂
Have you tried low dose naltrexone? I highly recommend this!
Hii
Do you have any improvement on fibro symptoms while you receive the anti parasite medication???
I was diagnosed with Fibromyalgia in 1997 after suffering from Glandular Fever (EBV). I always attributed the development of long term ill health to the delay between reporting extreme fatigue (Oct 95) and getting the diagnosis (Feb 96) – the doctor said it was “just” depression and told me to go back to work. By about 2005 it eased off but in 2010 I caught swine flu and within 6 weeks all the FM symptoms were back again.
So interesting to hear infections either causing or making FM worse. If anything is going to do it it’s infectious mononucleosis/glandular fever. When you’re a child your immune system is much more able to fight off EBV but by the time you’re an adolescent or adult it’s much harder to do so – hence the often long “recovery” times. How nice it would have been if someone had followed what was happening in your immune system over time as you got sick, got better and then got sick again. We could have learned so much.
I’ve often wondered about the immune connection and I’m very interested to read this – thanks very much.
I have a FM diagnosis, with some associated long term fatigue, which I have always privately linked with the Glandular Fever I had at 18 without ever feeling like there was much in it beyond a personal hunch. Came at the end of long series of chest type infections inc, plurasy, tonsillitis, bronchitis, etc.
Here’s the puzzle for me: I now also have joint issues which would seem to suggest excessive inflammation / over active immune system (provisional but I suspect not likely to be final / correct diagnosis of psoratic arthritis) but and also and concurrently an increasingly notable suseptabilty to infection, including skin, teeth, as well as throat etc leading to now a frustrating frequent need for antibiotics. Which intuitively suggests the opposite, ie underactive immune response.
I’ve been puzzled for a while about how both things could be a the case at the same time and if they are all linked to some immune disregulation. I’d be interested to know if anyone else who suspects post-infection FM also has this “too hot and too cold” immune situation.
I actually got giardia infection around 1988-1989. I was diagnosed with IBS a couple of years later. Then in 2002 I had a work injury that wouldn’t heal and was diagnosed with Fibromyalgia in 2004. Thank you for all your hard investigating work, it answers a lot of questions for me and I am sure for others too.
I had an upper respiratory infection, was on antibiotics, and came down with c-diff. Later I was diagnosed with fibromyalgia.
I developed fibromyalgia after a bad cold type virus in 2015. I have had m.e since 1998, but not fibro. I can honestly say it was horrible, and I still suffer with it, albeit less so than in those early days.
Hi Cort, have you come across anyone who had Valley Fever that caused lingering health issues? I was tested for it several times when living in AZ. Didn’t have it, but wonder if it has been a cause for CFS. Living in Nevada are you familiar with it? I don’t think it’s too well known outside the southwest.
Valley Fever here, never diagnosed or tested positive, but now have bilateral calcification in lung lower lobe on xray. Add in unknown virus in 1987, silicone implants imploding with silicone now sitting in joints. Diagnosed with SLE, bizarre ANA that subsided, chronic pain, chronic fatigue, endometriosis that nearly killed me, uterine fibroids, told to run, and quit complaining about my periods, get a treadmill, get on antidepressants, I have a stack of medical records 6 linear feet long.
This is great news!
Off topic: there’s a good podcast on long Covid, lyme, and me/cfs/fibro/other related diagnosis on Ezra Klein/New York Times
https://www.nytimes.com/2021/10/26/opinion/ezra-klein-podcast-meghan-orourke.html
Appears to be part of a bigger media push for their books. It’s good press for us and perhaps our skeptical friends, family, doctors, and other critics.
This is very interesting article indeed. I went travelling to South-East Asia on 1998 and while in Sumatra I got very sick, extreme diarrhea, stomach cramps, weak for days etc…..the typical tourist in tropics situation. After returning to my home country The Netherlands, I went to the doctor, explain that I spent the last 4 months in tropical areas, had ongoing issues with my stomach, lost about 10 kg etc. But at the time my GB did nothing. After a while I felt better but my stomach was not normal. Also my boyfriend complained that I have a very bad breath all the time.
Suddenly after 1 month from returning back home, I woke up one morning with massive swollen belly. I looked like 9 months pregnant and it all happened overnight.
Back to the doctor who then finally sent me to a infectious diseases department where they very quickly identified from my stool that I have giardiasis.
Most likely I had it for months. The parasites laid eggs in to my intestines which kept travelling up to my stomach, hence the constant bad breath, and when the eggs hatched, I woke up with extremely swollen and painful stomach. Like children in undeveloped countries.
This was all treated with very strong antibiotics.
After that my constant health and pain related issues started. I had normal life but I cannot remember time that I did not have pain somewhere. I just kind of get used to living with the constant pain.
But it took until 2017 when I was finally diagnosed to have Fibromyalgia and then 2018 I was diagnosed to have severe ME/CFS. At the moment I am 98% bed bound, mainly because of the pain.
I have often wondered where did all this come from. I am treated for symptoms but nobody never looks where does this all come from. This Giardia infection has come to my mind few times and I am wondering if I still have it? Lurking somewhere causing constant troubles. How do I get rid of it? Thank you
Wow. from international traveler to bed-bound. Of course, the vast majority of people are going to get over giardiasis quickly but some are not and come down with these conditions. Given how common Giardia is across the world millions of people must come down with every year with huge consequences over time – yet those have hardly never been studied. And that’s just one pathogen.
Again, one wonders at the holes in medical research and how they got there. My Giardia was attempted to be treated with flagyl, I think it was, and something else – metro something? Good luck with everything!
Where the people treated for the infection? Could the long term effects be from the treatment (antibiotics) and its effect on gut health, rather than the infection itself?
Wow!!! I often thought of connection with so many fibro people having glandular fever as I did in my late teens! And the collimation of many viruses laying dormant in the body till re triggered. I also suffered wth cold sores my entire life and found out I had chicken pox immunity without knowing that I’d had it.Are we just virus incubators?
I had EBV age 8 and was off school for many weeks…I have now been diagnosed many years later with Fibromyalgia and IBS and now Primary Biliary Cholangitis – an autoimmune liver disease.
I think it makes a lot of sense that there is an immune system connection with a likely infectious trigger. I was always sick as a child, having constant respiratory infections, strep, coxsackie B virus, you name it. I had shingles when I was 9. At 13 I was diagnosed with an autoimmune platelet disorder (ITP) and was being treated for that for quite some time. Then came the overwhelming fatigue which I thought might be related to the ITP but I was told no, and being a teenager most doctors waved it off as depression. But all my bloodwork was negative for Lyme, mono, other causes that would explain the fatigue and I was in remission from the ITP. I was diagnosed with CFS and then I started developing pain and was diagnosed with FM once a doctor assessed me for trigger points. I don’t see how these two things could NOT be related and also with my history of infectious illnesses and an autoimmune disorder it makes sense the FM is linked to that somehow.
I’ve had fibromyalgia since childhood (30+ years) but in 2020 got West Nile which has triggered a post viral CFS. The fatigue is worse than the pain which I’m used to living with. Being too tired (or knowing I’ll end up feeling so tired and nauseous) to do anything is really awful. My muscular fatigue even affects my vision as my eye muscles are too tired to focus for long.
I know that my FM, IBS, and ME/CFS have come from the same virus (histoplasmosis). I was just never the same after that sickness. I had a high fever for six months, as well as many other symptoms. It took a few years, but eventually, I was first diagnosed with FM, then IBS, then ME. It’s been a long road, but I fight and push, not unlike the others here, I’m sure.
My Fibromyalgia and Chronic fatigue started or worsened after I had EBV.
Off topic, maybe related. Dx at 16 with lupus, got older got more issues. I have frequently wondered if the lupus came from a virus. I have FM, CFS, and more. At 16, family moved into complex with a pool. I was in that pool everyday, my dx, issues came after that. Since lupus, FM, CFS all go hand in hand, anyone looking at a connection?
I watched the video of patients at the lupus.org
First symptom talked about:
feeling like a truck run me over upon waking up
second one:
pain all over
AS far as I understand –
there is not one test that says: you’ve got lupus.
What’s the difference?
I mean, seriously. Fatigue and pain… no test.
They all hypothyroid states..
1996: 2 tick bites. Not diagnosed. In the run of the next year: vague ailments and diseases. Tired to the bone but still working two jobs. Summer of 97: housemove and what seemed like a “summerflue”. Bedridden for two weeks. From there on stark down hill. Diagnosed fibromyalgia with the sneer “it was all in the head and we just give it a name so people will shut up”. 98: housemove because of wheelchair. It took me 2 years to get back to work and 6 years after that I was done working. No invalids pension as it was still “in my head”. I have inflammations, dead feet and hands, muscle spasms, can’t recuperate from physical exercise, brain fog, head aches, intestinal problems,live like an 80y old since I was 27.
Thank GODS for COVID because finally people are taking this more seriously. I’d love to try medication but don’t know who to turn to.
I had severe diarrhea on a daily basis for 10 years before I got sick (2020) and was subsequently diagnosed with ME/CFS and FM. I was an avid outdoorswoman and could easily have picked Giardia up at some point. I’ve had two dogs who had it. Anyway, doctors told me I had IBS. I was never tested for Giardia. I am stunned.
Two of my friends contracted developed after an episode of viral encephalitis.
Yes, got blastocystis hominis and developed IBS, had this for about 20 years without knowing why I had symptoms. Then a bad case of sushi food poisoning led me down the slippery slope to full fibromyalgia and chronic fatigue syndrome. I had a gut feeling that it was a gut issue but MDs just want to give antidepressants!
I had sudden chest pains in 2010, at work. Went to a walk-in clinic and had a congestion and was dx’d with costochondritis. So a cold of some kind brought on the costo? The costo never went away and I still have it to this day. Sometimes it just hurts to breathe. That pain had me on 15 weeks of sick leave in 2010 and I finally had to quit my job. I was never able to return to work. By the next year I was dx’d with FM “officially” and sought disability (which I was not able to get until 2016). I already had IBS but my major complaints became severe pain, severe fatigue and then that nasty costo pain the never truly goes away. I am on dilauded 12 hr pills and the same for breakthrough pain pills plus Cymbalta, Lyrica and others.
I absolutely feel that my fibromyalgia was caused by infection.
My appendix has burst while on vacation and it took hours and hours before I received care.
I had peritonitis.
Renee – you are the first person I’ve read about with a similar story to me.
I waited about 40 hours for an ’emergency’ appendectomy. I was fasted all that time and it was a most traumatic hospital experience. Unfortunately there was leakage.
They also found endometriosis and that flared up too. Diagnosed with fibro just over a year later after enduring surgery for the endometriosis and an awful long recovery from that.
My fibromyalgia – as with so many other people’s – was so obviously triggered by an infection that I’ve been bewildered ever since that so little has been done to investigate the phenomenon. It’s not as if it hasn’t been reported, repeatedly, for decades. So it’s great to feel that, finally, investigation of infection as a trigger for chronic illnesses has become a subject of urgent study. A tragedy that it took a lethal pandemic to bring this about. I was an extremely healthy person prior to what I assumed would be a brief, if savage, cold in February 1984. The fallout from that has been more than just fibro but several autoimmune issues too. To have gone from fit, energetic, and quick to recover from even the worst flu, to never being well again – almost literally overnight – couldn’t have made it more clear that infection pulled the trigger on my FM, and all that followed. Given that my family is unusually prone to autoimmune diseases (lupus, pernicious anaemia, rheumatoid arthritis) which also frequently follow infection, I’ve always expected that FM, and ME/CFS, and small fibre neuropathy, will eventually be found to have an autoimmune component too. I’m just so glad to have Health Rising to turn to for a detailed look at all the latest information. Cort, you do an invaluable job, not least in reminding us that investigations are gathering pace…and even, the lucky ones, getting that previously elusive thing called adequate funding! So, thanks, Cort, for you dogged hard work. It makes all the difference in the world to those of us who need to understand as much as possible about the diseases we have to live with.
I contracted West Nile in the late summer of 2000. Then was injured in a car accident on New Years Eve 2000. Whiplash and a mild TBI. Two days later, I was hospitalized with acute appendicitis, and had surgery to remove my appendix. Within 4 months, I was exhibiting signs of CFS. Then was diagnosed with FM 5 years later. During my this time, my Dr also tested for EBV, which came back positive for antibodies. I guess I had a perfect storm.
I was very interested to read of Emily’s ITP story. Same as mine. I had my spleen removed in the 70s. Ever since, I have suffered from fibromyalgia. Its autoimmune.
Thanks for all you do for us Cort. I really appreciate your articles.
Carmel
Carmel, this is the first time I have heard of another person having had ITP then fibro!! Not surprising to me, just wish the mechanism would be better understood and investigated.
I have Epilepsy since I was 5 yrs old. In 1989 I had Status Epilepticus seizures. I was diagnosed w/ high titers of antibodies …. Chronic Fatigue Syndrome. Years later Fibromyalgia, the last 7 years Neuropathy. I was vaccinated in January 2021 for the COVID, got COVID in July. I feel like I still have side affects from COVID.
Definitely my life changed in 1989. My seizures are semi-under control if I take care of myself, I take medication and CBD, it’s all debilitating. Thank you for the article 👍🏽
I developed fibromyalgia and a positive ANA blood result following covid vaccination.
This is such a pertinent topic! I just did a little Google search about previous viral or bacterial infections associated with the development of different and longer term diseases at a later date. The list is VERY LONG and covers just about every body system.
Too bad documentation over time is so difficult and this makes research problematic. I know with myself, each time I got a serious flu, my fatigue got a bit worse and lasted a bit longer until finally with the last infection (unknown, contracted in the Himalayas) I got my long term, full blown ME/CFS. Fortunately, no fibromyalgia–but the EDS makes up for that!
I also wanted to report I have taken Jubliance (oxaloacetic acid) at only 100mg. per day for almost two weeks and I do notice a difference. It’s a shame it is so expensive, but I plan to try taking a double dose soon and seeing how that goes. By the way, the added vitamin C is to stabilize it.
If I keep getting a good response, perhaps we can revisit the idea of a buyers club if others have similar successes.
My problems began in spring of 1988 (age 29) after being sick with EBV. I suffered from fatigue with bouts of intense fatigue (including after exerting myself), which improved slowly over many years. A couple of years after the EBV I was sick with viral encephalitis. Mostly, every time I was sick with a viral infection, it would be followed by 2 to 8 weeks of intense fatigue. I was never given a diagnosis. Then, in 1997 I started to develop pain. At first I characterized it not as pain but as intense relaxation – like no tone at all. Over the years, the experience of pain expanded to more of my body, more of the time. I was diagnosed with FM in 2002. Fatigue has been the more debilitating symptom. I don’t meet the criteria for a diagnosis of ME/CFS, but have felt that my problems represented both of these or that FM and ME/CFS are really different presentations of the same underlying response (involving the immune system) to a significant insult or stressor. Also developing over these last 30+ years – Hashimoto’s thyroiditis, microscopic colitis, plantar fasciitis, and peripheral neuropathy.
So so many of us….why won’t researchers and doctors hear our pleas. Me too. I got very ill with a flu back in late November/early December a few of years ago. It never went away and has been getting progressively worse over time. Was diagnosed with fm in March after that fateful December. I’ve always been susceptible to bronchitis since a child. I’ve also had significant stressors in my life. And have a host of other diseases now. I’ve always been hyperflexible and meet the criteria for EDS type 3 but never diagnosed. So who knows, maybe it was a perfect storm that fateful December. Fingers crossed that a cure is in the near future for all of us. Thank you so much Cort for keeping us up to date on all this research, very appreciated 🙏.
I too had a really bad case of the flu several years ago and never fully recovered. Eventually I was diagnosed with FM and IBS. I’ve been wondering if Covid would also be a trigger for FM.
I would be totally shocked if it wasn’t. Totally shocked.
I was attacked by a very large dog which having grabbed my jaw shook me by the head. and dragged me down a hallway.
I had hundreds of bites on my face and neck, legs and hand.
I was given heavy antibiotics against infection and still got infected. was on antibiotics for months. About 3 months in the fibro started to show. with fatigue, rashes, pain and sock and glove nerve thingy ( oh! and forgetting words like the word that begins with p for the nerve thingy, and the a word for losing words! hahaha! well that is clearly still on!)
I started reacting to light and sound, having migraines and flu like symptoms. over the next 6 months i developed a metabolic dysfunction where bp, lipids, blood sugar and pulse went up. I gained 30 lbs and began experiencing swelling all over my body and more extreme pain. would have episodes where, Say, on my way to work I suddenly wouldn’t know where I was
( luckily it never lasted more than 5 minutes) developed anxiety and depression as I couldn’t keep up with my life. Then came food reactions and exercise intolerance.
After 10 years I got my first flu shot because my mom had cancer, I had a severe virus after that and stayed bedbound for 2 months ( used all my vacation and sick leave then had to go back to work.
was so sick I went to a CFS specialist who ran extensive tests and put me on a shit ton of medications, antivirals, diabetic shots,, so many different injections a day.
very gradually got a little better. 5 years later I had what i call a remission… almost no exercise intolerance, metabolism went back to normal, lost the 30 lbs as quickly as they had gone on ( 3 weeks or so).
Right before Covid I caught flu. quite severe.
guess what? Same process all over again.
I hate it, but for me it has always seemed to follow a viral infection.
peace to all!
Elaine
Dear Elaine,
Wow! I read your message with my heart in my hand. I’m sure my FM/CFS/ME was genetic or inherited. I did inherit hypothyroidism,
my Grandma, had a large external goiter, my Mom had one internal & I have hypothyroidism without a goiter.
Mom said I started to walk, fell & did not try for a long time. She said that I was always tired & complained about pains in my legs, that they said, was growing pains. Early on I had pinworms & when I was 8, I had yellow jaundice & almost died. In the 1940’s I had all of the children diseases, chicken pox’s, measles 3 times, mumps, scarlatina, etc. Most of all I constantly had colds w/sore throat, aches, sneezing, runny nose, etc. I would try to sing for the kids at school, they thought it was funny. I sounded like a frog, the teacher stopped me from singing.
I grew up in rural country, in the Allegheny Mountains of the Appalachian Range, in a town of 200. The nearest doctor was 4 miles away & was the only doctor for the whole surrounding area. Dr. Davis only made house calls in an emergencies. We didn’t have a car so most of all our illnesses was handled by our family.
Fast forward to when I was 19 & working as a cashier in Baltimore, MD. I loved my job, was very happy, until they extended my hours to 10 PM. Standing at my cash register all those hours made my legs
hurt so badly, I’d cry. Ended up seeing a doctor who said I had to quit my job, get a desk job, wear support hose, & keep my legs elevated even at work. I started working in an office & got married.
I rode a streetcar to work, felt sick, got up to get off, it stopped behind cars & I fainted kicking a lady in the back. I came to as the conductor asked if I was okay & the lady in front said she was a nurse & would help me. This lady was taking me to a pharmacy right near for spirits of ammonia w/coke, but I threw up all over her fur coat, a man was hailing a taxi, she pushed him aside, saying I was sick & put me in the taxi. At home I called a doctor, went & found out I was pregnant, after researching this I found that what happened to me was really serious. After having my baby girl I ended up with boils on my private area. I got pregnant again & with my baby boy I suffered badly with edema in my left leg. It ended up with me not able to put on a footie because how badly my foot was swollen. He laid on my left leg & they used forceps to deliver him.
I went to many doctors trying to find out what was wrong with me. The usual answers, it’s a woman thing, it’s all in your head, you work to hard, etc. without any answers. During this time I saw my GYN who said I had a vaginal infection that he tired to clear up with medication, douches, burning the cervix, doing a D&C, then a hysterectomy. He also gave me diet pills to take for energy for my work & family.
Forward to my late 20’s & I had 3 major auto accidents in several years. The first I received a whiplash that repeated for years, the second I was thrown out of the car over the guardrails down an embankment, injured my left knee & leg, plus fighting edema & the last one I was hit by a tractor trailer while going through a green light, he caught the back of my car & threw me under another delivery truck, throwing me into the passenger side with my legs twisted up under the dash. I believe this is when my FM started to get worse.
My marriage was bad & I wanted to make it work. I decided that I would learn how to drink alcohol since he liked swingers. I did fall down several times but I was drinking. Anyway this lasted 8-10 years & I joined AA & now have 45 yrs. sober. I got divorced, met someone in AA, got married to a wonderful man & had a God blessed marriage.
However, my FM was getting worse little by little. I quit two jobs & was on my third where I had to stand, forgetting how my FM started.
Went to the doctor & again I had to quit work, period. Luckily I was able to travel with my salesman husband & I’ve been in all the states except Alaska. I had to stop traveling because I would be so fatigued & having terrible pain, I’d end up in the hotel bed & not with my husband.
My personal doctor who I saw for years was willing to learn about FM & keep me when I was diagnosed by a rheumatologist with FM.
He had been telling me to stop traveling, but I wanted to spent as much time with him as I could, so I pushed as we all do.
In 2000 I found that my spine was not connected to my sacrum. The surgeon did not believe in FM but was very good in putting me together. He said that this happened at birth. I don’t know if this caused any of my FM.
My wonderful husband passed on with COPD & my FM flared. Then I lost my daughter, 63 yrs. old due to a heart attach in her sleep, then my step daughter that I loved, due to breast cancer that she fought gallantly.
I didn’t want to live alone any more so I moved in with my son, who just had pneumonia, went to the emergency room ending up staying there. He has been released but has blood clots all through his body
& is on blood thinners. I pray & worry about him daily.
Recently I have had tests for my heart, my kidneys, my liver, my thyroid & they are okay, so they say & wonder at 85 yrs. how that can be. I have been taking a diuretic for many years & Elaine it supposedly can affect everything you listed in your messages. I told my doctor that I wasn’t taking anymore tests until she took me of this diuretic & put me on Lasix that I’ve taken before. So I’m now working on a two week trial period to see if hydrocholothiazide is creating all my problems.
My Fibrofog has me forgetting thing, so I probably forgot some things. However I’ve never written anything this long about my FM/CFS/ME. Forgive me.
Take care & peace with love to you Elaine.
Kay I am shocked by everything you have experienced and survived! You are definitely a strong woman and amazingly able to survive the worst kind of continual trauma. I cannot imagine. You really are amazing to have lived thru all of that. I am praying for your son and for your mind, body and spirit for healing and peace and some joy, in the midst of trouble.
Thanks Elaine for your message, it touched my heart. Today is good since the Lasix my doctor allowed me to take has been working. My belly flap is hanging lower, due to fluid lost & my abdomen is soft as I have lost fluid & my terrible legs have lost fluid. However, I thank God for helping me, so I am elated & praying for more relief. It is impossible to tell if my pain, etc. is all FM or edema.
Last night my son came home, not feeling good & of course it bothers me & your prayers are deeply appreciated. Thanks for caring for the both of us.
Funny, in my teens I wanted to be a missionary but thought I might be sent to a jungle area. I am so afraid that I jump out of my skin when frightened. lol.
I know without a doubt that my Jesus/God has been with me
all my life. That is how I muddled through & continue to muddle.
Prayers for you with love & caring.
I have had FM symptoms since age 4 (as far back as I can remember), but 40 years later I got post-anesthesia hepatitis and then started having chronic fatigue. Fast-forward another 12 years and I contracted giardiasis and with it, IBS and a few years later got the official CFS diagnosis. I always look at the giardiasis as “the thing that ruined my health,” as I could function somewhat normally before that, but afterward never could.
Lately, I’ve discovered that EDS is at the root of all of it. But it goes to show that the things we do or are exposed to can determine how severely those genetic defects get expressed.
I traveled to an “out of the box” doctor when I was first diagnosed with Fibromyalgia/Chronic Fatigue in 1996. (Dr. Marking in Washington, DC) He tested me and I was positive for Mycoplasma and Chlamydia. I went on antibiotics for a couple years and improved, but wasn’t able to get a doctor to continue the treatment after this doctor retired. (Most doctors freak out if you tell them you are on long term antibiotics) So I gradually relapsed. Then I traveled to another doctor (Dr. Dantini in Palm Coast, Fl) who tested me for viral infections (but didn’t do bacterial infections). I tested positive for previous mononucleosis and other viral infections so he prescribed antivirals. ( Dr. Dantini had cured his own Fibromyalgia with antivirals and has book on the subject) I stayed on those for a couple years and improved a little, but I felt that if he had combined the antivirals with the antibiotics I may have gotten better. I cannot afford nor have the energy to seek out and travel to a doctor that will treat both so I take Oregano oil. But that by itself isn’t enough.
Edit to above Dr Mirkin Washington, DC
I had German Measles when I was about 12 yrs old. I had arthritis symptoms especially in my hands. I always thought there was a connection with fibro ME . Has anyone had German Measles?
Apart from the usual childhood infections (mumps, measles, chickenpox…) I contracted either Malaria or Dengue Fever while in Nigeria as a child. This would have been before my 7th birthday. I was diagnosed with FM at the age of 16.
Another suggestion put forward is that serious trauma may trigger FM. I was evacuated from Nigeria immediately before the war front moved through our home and the combination of that with events soon afterwards has been psych evaluated as the cause(s) of my PTSD.
Everyone has a story about when it all started to manifest…however I believe the root cause was already “brewing” beforehand…jamming the immune system by hiding in the autonomic nerve system. That weakness (potentially autoimmunity) allowed a myriad of possibilities for “deeper infections” depending on the pathogen encountered. I believe that The autoimmunity issue is provoked by a viral on going activity which push’s the adaption of nerve cells to a PONR when an infection implies an overheated activity of the immune system. The interplay between Herve cells and the immune system is the key and It could be caused by known herpes like HHv1 or Hhv3…
But why is..why not everyone? The issue starts from the tissue up.
Eds is such a common cormirbidity. Autoimmunity and susceptibility to virus all are more common in eds.
In short, you just need a chemichal, emotional, biological or viral stressor and a certain tissue type for these cluster of diseases to manifest
Hi
I don’t know if it was the only time I had the flu in my life at 18 or the probable shingles treated with antivirals within 48hrs at 29 but 6 months after the shingles episode in 2000 I had IBS symptoms (could have been my stage 4 endometriosis diagnosed 15 years later that resulted in a total hysterectomy) and a year later diagnosed with fibromyalgia. I always thought it had something to do with a virus. Was also diagnosed with Hashimoto’s thyroiditis at 48 and my mom has lupus but I don’t.
They need to find why some people develop theses conditions and illnesses but not others.
Greatly appreciate your blog and dedication.
Several folks mentioned post-infectious IBS, and given the many theories of gut etiology of ME, it’s worth mentioning the work of Dr. Mark Pimentel’s group at UCLA / Cedars Sinai.
https://www.cedars-sinai.org/newsroom/irritable-bowel-syndrome-mark-pimentel-md/
The idea is that a gut infection leads to auto-immunity which can be detected by an anti-body test: https://www.ibssmart.com/
Note that the target proteins involved are highly concentrated in the neuro-immune system of the gut and the migrating motor complex. This dovetails nicely with ideas of gut pathogens causing dysfunction via the gut-brain axis.
My problems begun:
when I was born
Seriously!
I’ve never had a ‘before’ that I wish to go back to.
I had significant decay in the last years
a little bit before,
there were two years of one infection after another
thyphoid fever, anemia developed from the excessive internal bleeding caused by undiagnosed ulcer (h. pylori), giardia, hepatitis A, mononucleosis, and others that were just not properly diagnosed.
That I got that sick to begin with, was already a sign of a poorly working body.
The beginning of your post made me LOL. Feels like it’s been that way for me too. But no, I’m so sorry for your pain. I think my FM was triggered by chronic stress. Also a genetic component – my mom had it. I’m so sorry to hear about all the post-viral cases, but I hope sharing these stories will lead to a breakthrough that will finally cure this awful illness.
Ha!
I have been absorbing Ray Peat’s work, working on my diet and hormones. I turned out to be severily defficient in B3 – yups, I even got the pellagra rash. The right amount of niacinamide resolved stuff immediately that I’ve been carrying since I was a kid.
Each person has their defficiencies to figure out – the same deff can manifest differently in each person. And if you are younger / have been sick for less time, the faster and less is required to steer things in the right direction.
Peat has a very good framework for figuring things out on your own. And it’s free.
Godspeed
Just read in Times of Istael. Israel is recognizing both ME CFS and FMS as a disability.
Except there are no doctors that know what ME/CFS is, much less how to diagnose and prove you have it.
As usual in Israel, the thing is laws are not enforced/followed.
Key is to see the follow up – how many people does the government actually end up recognizing as being disabled by FMs or ME/CFS.
And this disability is only up to I think it was 50%? Which is paltry. Maybe it covers very basic allowance for food. I mean, 100% is paltry too, something like half of basic income. This is a different problem.
Mine definitely was post infection. Came back from a CA vacation with upper respiratory infection and never recovered. I developed asthma, FMS, CFS. Later IBS. One month prior to vacation I passed my annual physical. My mother and a sister also have FMS. I also believe, as many have shared, in a stress component. I was also under severe emotional stress at the time.
I had influenza as a child in the lat sixties living in London I was about 7 years of age and ever since getting the flu my body changed. I was hyper sensitive my blood pressure would crash. Then starting my periods at 15 (hell of my life) it was then diagnosed as endometriosis. Now I’ve had FM since my early forties which took 15 years to diagnose. Every gp I saw I told them my body changed when I caught the flu. They laughed at me I’ve been called nureurotic it’s in your head etc etc etc maybe now with this covid they will now hopefully listen
I think they are….
Between 2014 & 2016 I had 4 episodes of, what I think, was the flu. Each episode was very severe & one episode went on for about 6 weeks.
I didn’t go to the Dr. I was very fit & healthy & had always recovered from illnesses. My work history: I was a soldier for 7 years, civilian nurse for 5 years & a paramedic for 5 years. I had been extremely fit & healthy (despite what were known as, “childhood diseases” & other usual illnesses for people working in healthcare) for the first 45 years of my life.
Then I developed what has now been diagnosed as FM.
My first symptoms were, severe fatigue, weakness & migraine headaches with vomiting. The vomiting needed treatment at hospital on 4 occasions. Then I developed IBS & pain.
It is a cruel condition & sufferers are often treated like malingering, lazy, hypochondriacs by Drs & nurses!! 🤬🤬 The very people they need help from!
I don’t have any treatment by a Dr for my condition at the moment. I feel too much shame to attend a Drs surgery. I take 8 paracetamol & 4 to 6 aspirin a day to try to help with my pain. Other Anti inflammatory medication causes SEVERE IBS, it relieves the FM pain, but the IBS it produces is not worth it.
I drink 2 different herbal teas that have pain relief properties. I also take a multi vitamin. Despite this I still can’t get off the lounge most days & walk with a limp now because of the pain in my hips & feet. We live on 30 acres & I used to be a volunteer firefighter… now I’m almost housebound & I can’t drive.
I am (possibly irrationally) hopeful that studies being done on long COVID will lead to better understanding & treatment for FM sufferers. Or, at the very least, real diagnostic tests for the condition &, hopefully, less discrimination & assumptions towards them, by the medical & “healthcare” “professionals” who are supposed to be helping us.
I was a healthcare worker myself, from the age of 18 & I am truely disgusted that those who work in that area now, would treat patients the way I & many others are treated. Instead of helping they actually add to the suffering.
Thank you. I hope there is a positive outcome & benefit to all people suffering from these symptoms.
🤞🤞👍
To add: I also take a probiotic.
I have read some other comments, there are so many similarities in symptoms & disease pathways, surely there must be something to discover.
Practically any big stress to the body, whether emotional, infectious, or traumatic can trigger an ongoing continuous infection that leads to fibromyalgia. Later this year we will be reporting on the FORTRESS study (large FM trial) which should go a long way towards explaining what keeps the infectious stressor activated. Stay tuned!
I’ve been following your study. Looking forward to the results!
Yes. I began an inflamatory proccess after radical mastectomy. But 8 yeas later in Feb 2020, i had severe covid. Thought it was a cold and went to bed. I passed out for 80 hrs. I remember knowing i was dying. Coudnt breathe. It took 8 yrs from me, lungs and kidneys are at 50%. I am 67. I know this pist viral event brought on FM.when in crisis, pain is very bad, i walk like frankenstein. Lyrica cganged my life for the good. And when it’s bad, cortizone is excellent. I must inform i have had a bad autoimmune sys since a child. Allergies, asthma, hashimoto by 27, ibs since teenager. Also have background of sezures. Hope this helps smb out there. But, we are alive, Praise God.
I was diagnosed with Fibromyalgia about 7 years ago. I also have IBS, and Chronic Fatigue Syndrome.
I often think about a weird illness/ infection (possibly from swimming in the river or being bit by some kind of bug) of some kind (with fever, painful rash, blisters on feet, etc.) that I developed during my college years that had me crying and wishing to rip my skin off, and completely out of it. I missed work for a couple weeks. The doctor sent away for some tests, but they came back negative. We tried several different medications but the only thing that helped was steroids. By the time the testing came back, negative, it had finally cleared up (except for lingering chicken pock-like dots on my stomach that had stopped hurting/being itchy), and no more testing, etc was done. I still don’t know what I had. However, my fibro symptoms, migraines, and fatigue seemed to show up after that and get progressively worse with a stressful job, until I was officially diagnosed, and later had to stop working entirely for a while until I learned to pace sand manage my symptoms. I am only able to work part time now, but at a great stress free job.
I believe my fibromyalgia was caused by a MRSA infection I had in March 2022. I was in extreme pain and unable to work for 3 weeks. I haven’t been the same since. I am still in constant pain but my symptoms are more tolerable now. I was tested for autoimmune diseases; RA, lupus, etc. I had X-rays and an MRI to rule out arthritis. I was diagnosed with fibromyalgia in July 2022.
I was 25 years old & healthy when I came down with the flu…I had complications afterwards (too much to write) and never felt well again after recovering from initial infection, and was diagnosed with fibromyalgia 10 years later.
I was a pretty healthy person until moving to New York. I ended up with shingles in October and started having morning stiffness in my joints. Sometime in February my whole family had caught the flu, i on the other hand had zero symptoms so never tested myself but I’m pretty positive I had caught it. My 1 yr old ended up having a febrile seizure in the middle of the night which was Traumatizing for all of us. I felt a wave perhaps adrenaline come over me. They ended up admitting her in ER due to her WBC count being low, they wanted to observe her and make sure it went back to normal levels. While at the hospital I was incredibly tired, slept often with her and kept waking up with a lot of hair loss. Once we got home I started to get lightning bolt pains in all my joints, it became frequent and all over. I ended up in ER from the continuous pain and while there my heart rate shot up close to 200s, they ran all these test and nothing and just suggested a visit to cardiologist. Since then I’ve had reoccurring bouts of fatigue, bowel issues, nerve pain, joint pain, sleep disturbances, muscle twitching, visual disturbances, tinitis/ear fullness, night sweats, chills, temperature going up and down and occasional low grade (mid to high 99s) fevers….difficulty swallowing when my throat gets quickly fatigued from using swallowing muscles. I also get what seems like thyroid issues because I’ll suddenly have energy, insomnia, loose weight, less of an appetite, overactive bladder, active bowel movements, frequent sleep disturbances etc and then I end up back to feeling fatigued, water retention, muscle weakness and muscle pain and atleast once a month I get a debilitating flare up with incredible muscle weakness leading to me pulling all my muscles and dealing with muscle soreness despite the limited activity. Since then I’ve been diagnosed with fibromyalgia, IBS, tinitus, and possible SVT OR panic attack’s(from cardiologist) m, with a history of anxiety (diagnosed in childhood). With so many viruses and the traumatic experiences it’s hard to tell when it exactly started. Taking daily dose of magnesium, methylated B supplement and vitamin D, and trying to be somewhat active each day, has helped keep me afloat. I fell pregnant in 2021 and symptoms nearly vanished which leads me to think it’s immunological or related to hormones since being pregnant Is an immune suppressant and greatly affects hormones. After having my baby a couple months later my fibro symptoms started slowing returning, with all of it being back by the time she was 4-6 months. One interesting note, my boogers are always green and it returned shortly after having a baby. This definitely acts like a virus, wreaking havoc all over my body. It’s be interesting to see what they find. I hope this helps someone with their research!
I’m hearing many trying to pinpoint an event to their illness, but what if it is about a confluence of physical events? I had measles as a kid, then mercury amagalms in my mouth at 6. We in the 60’s grew up with pesticides on our food, processed lousy food,.add glycophate later (same old),on top of all this. I had a bad reaction to a tetanus shot, had hepatitis A from bad food at 20. How to categorize anyone? I’ve been disabled with FM/CFC since a teen. How to sort it all out? I had infections too..I do wonder if the “stealth Virus’ theory that was discounted from the 90’s is valid though..after that it was a leaning toward neurological stuff-it’s neurological, meaning not infectious the two can go together though, no? , please tie all this together and think of what I said. A confluence of events. This doesn’t discount one factor causing this..just saying for some of us it’s complicated
Mononucleosis at age 11. I had shorter recurrences (though officially deemed impossible) several times a year in the 49 years since the initial infection. Fibromyalgia was diagnosed 25 years ago following shift work, sleep disturbances and chronic stress. To this day only sleep keeps my pain in control. I would be very grateful for the end of this unremitting fatigue, however.
I have been looking for info on possible linkage between FM and mononucleosis for some time, and I figured that long covid would finally get researchers to spend more time on the possible connections of long-term viral infections that may even lie dormant for years.
I had a severe case of mono at age 19, including 3 bouts of strep, 2 bouts of staph, and a case of quinsey–and took LOTS of 1970s-era antibiotics. The FM did not show up until decades later, when I was repeatedly tested for Lyme, etc. following IBS and intense fatigue in my mid-50s. After two friends had serious long-covid complications, I started wondering about whether there could be similar scenarios…like with HPV and cervical cancer.
More studies would be terrific.
Hello, I read your article and feel hopeful that science is getting closer to understanding and developing better ways to diagnose fibromyalgia which has wreaked havoc on my life for the past several years and has been made worse by Covid in the last 3 years.
I had severe Mono and Strep as a teenager, then after a disc rupture I my back had 3 epidurals to treat the pain. Since the epidurals I believe that the Fibromyalgia started to show signs. I also had an almost 1 year bout with IBS at this time. I wasn’t diagnosed until 2017 with Fibro, mainly because the doctors didn’t feel it was a real disease. I have struggled to keep a normal work schedule with the extreme fatigue and body pain I experience daily. along with the ups and down of depression. After I had Covid, (before vaccines were available,) my fatigue became debilitating, causing me to sleep constantly and unable to have strength to do simple tasks like cook or getting dressed. It also is MOST frustrating that I still have doctors who know so little about Fibromyalgia and some even stating that it’s not a real disease. We have to solve this to validate all those who are struggling to do simple daily tasks. I am always open to any studies and interested to read new research on the topic, though some medical terminology is too advanced for me to understand, it would be nice to have some information about what’s happening, and what science is uncovering in a way that lay-people can understand. Thank You for your work on this!
I contracted a viral infection (respiratory) roughly 3 weeks ago. ( COVID and types A and B influenza were ruled out) I was not prepared for the pain, lack of energy and brain fog. After the first few days, it occurred to me that my symptoms were eerily similar to a bad bout of FM. I was diagnosed FM 30 years ago. I have thought for years that FM was caused by a virus. I’m very interested to learn more about this possible connection.
Fibromyalia and covid vaccines is a bad combination. No problems after 1st Pfizer covid shot. After 2nd shot things were fine until after I finished dinner and I vomited the entire dinner without warning! After that I had problems with foods. Upset stomach and diarrhea and did not want to eat much since everything seemed to be a trigger. Gut issues are common from these vaccines. This went on but I was obedient and did the 3rd shot. Same problems with foods and gut issues but two weeks later I noticed that my body had literally stiffened up since that 3rd shot because I was experiencing my body relaxing more. Things were improving somewhat but my left knee got so bad I could not walk on it. Went to urgent care in a wheel chair and they would not listen to me about how my knee issue was caused by the Pfizer shot. They said to me that I had gout. They prescribed 400mg of ibuprofren every six hours for three days. It worked! But I had an aha moment since not only did my pain in my knee go away but also my fibromyalgia pain and arthritis pain too. So from what I have read the covid shots ramp up our immune system and this causes hyper inflammation or big reaction from immune system. So now I am thinking Fibromyalgia is about a ramped up immune system that is attacking me. Coincidentally the so called “gout” diagnosis is something that was unique since haven’t had it before or since. Because of the way the doctor refused to acknowledge the cause and affect with the covid vaccine I reported my adverse reaction on VAERS. Physicians around the world have been threatened about reporting too many adverse reactions due to the covid vaccines. Research is showing that 80-90% of adverse reactions from covid vaccines are not reported. After watching how the feds, states, docs and nurses have lied to us about the pandemic to hold onto their licenses I am not going to use healthcare much anymore. It is clear to me the system has been broken for decades and I have now woken up about the way agency capture has impacted our healthcare system to such an extent that it can no longer be trusted. I wonder if Bill Gates wants this distrust so he can implement AI to replace all the vaccine harmed docs and nurses and fill the need since so many healthcare workers fled the sector after seeing how abusive the feds were on getting compliance. I do think the agency capture by corporate interests may be one of the biggest reasons we have yet to figure out what drives fibromyalgia. It is not profitable to cure anything but to sell immune suppressing pills for life that will only set you up for deadly cancers or infections down the road. I will use urgent care in emergencies if needed but I am just done being lied to and manipulated by big pharma. The only good source of info during the pandemic came from a professor Dr. John Campbell on Rumble, since Youtube is censoring anything that differs from what the sell out CDC says, from the UK who taught nurses. He is retired and he breaks down the data and explains research papers in layman terms since our federal government lied endlessly to us about so much and kept us ignorant and spread disinformation endlessly all while pointing the fingers at reliable sources who were speaking the truth. This has been the biggest poker tell about how badly our U.S. government operates with propaganda. I will vote for the only candidate for president that will clean up our CDC, FDA, NIH etc and my hopes is he will appoint Aaron Siri to clean these agencies up since he was the attorney who was able to get the data on the Pfizer covid vaccines released NOW since the feds wanted them hidden from the public for 75 yrs. The dems will not promote Robert F. Kennedy Jr and have smear campaigns since Biden sold us out for big pharma. Dems are in lock step with big pharma’s corporate donations. RFK Jr has been complaining about the lack of oversight on vaccines for decades but the spin is he is anti vaxxer which is not true. We may need to write in a candidate this year since the dems have sold out like the repubs did to big money decades ago. Neither party can be relied on to do the right thing anymore. When we were kids we only had like 3 vaccines. Now kids are getting upwards of 72! This does mess with the immune system big time unnecessarily. Perhaps our Fibromyalgia has more to do with all those flu vaccines and other vaccines that are not really needed and are not tested by the gold standard. That may explain why they keep kicking the can down the road on this and sending us on wild goose chases since no one wants to take on big pharma’s abuses. That is why chronic disease is just rampant now and never was decades earlier. It is shocking the more you find out about how all vaccine manufacturers are not actually doing the gold standard of testing and are given total immunity from the feds. No incentive to make them better. Now we have rampant numbers of kids with autism and when I was a kid we rarely saw them. If the rates were the same why do we not see one of out 20 older adults with autism? We don’t. It turns out Danish researchers and Australian researchers are finding out that the first roll out of the covid vaccines had to be kept at really cold temperatures and these vaccines were given first to first responders, docs, nurses and elderly. Turns out now these lot numbers are showing they had the most adverse affects. It had nothing to do with age. I looked up my lot numbers and all three had high toxic adverse affect numbers with them. You can look you your lot numbers to see here:
https://fbf.one/wp-content/uploads/2021/12/Pfizer-Batch-Codes-and-Toxicity-Levels.pdf
Pfizer must have changed the vaccine since no need to keep vials at lower temperatures and now the stats are showing those newer lots are not having so many adverse effects. But no mention about change of vaccine formula. Now my pain for hyper inflammation is worse and healthcare won’t even provide help with long covid vaccine harm. Only for long covid. It was bad enough being ignored by the medical community about Fibromyalgia and now add on the increased pain and gut issues after Pfizer shots and we are now living in a medical Siberia of sorts.
I doubt this post will get posted since finding cures puts non profits like this one out of business. They want the plates to keep spinning to keep their jobs.
I have long covid and found articles on fibromyalgia and covid and took it to my new provider and after three months of pain and no solutions and multiple negative tests, I have help! We started gabapentin and wow! the pain is finally starting to get better. Hopefully they figure all of this out and how a virus causes musculoskeletal pain syndrome that lasts and lasts.
I caught a virus back in 2009 and shortly after recoverin, i developed the painful condition of fibromyalgia. This was over 13 yrs ago and i still suffer to this day with the effects although they have become less severe over time. I’ve always thought it could have been linked to that illness as I was healthy beforehand.
Hello Amanda, You got me thinking about when I had the “Norwalk Virus” in the 1990s We were told to stay at home. It was a gastrointestinal one. I doing double duty if you know what I mean. As a child I suffered many infections in my respiratory and ears. I wonder if Strep throat with a fever of 105 can get out of control. (My mom was left with 5 kids) and I had to walk in a blizzard to a 90 year old doctors house several blocks away. but he was to kind and gentle) Gave me a shot for the strep. I also wonder how much is Environmental, ie: Food Fillers, and allowable pollutants in our so-called clean water. All the best to you Hope your Fibro flare ups are not too nasty (((((((((((((hugs___________
I have fm, diagnosed about 20 years ago, rheumatoid arthritis, Parkinson’s disease and long covid
Very interesting to read everyone’s comments! I have not been diagnosed with fibromyalgia as yet.. but I have all the symptoms! I did a self check on the internet and it came positive. What I find interesting is that I’ve been battling with a Streptococcal infection for the past 3 years! I’ve had severe muscle pain in that time frame.. it’s definitely looking like fibromyalgia and maybe chronic fatigue too.
I have a question. Has anyone got fibromyalgia from a Strep infection? It seems to be rare but I’d be interested to know if there’s anyone going through this too?
I would not be surprised if someone did.
This is not exactly a yes, but…my daughter had several strep infections as a child, then spent 5 days in the hospital from a MRSA infection when she was 18. Fibro followed soon after. I’m inclined to think the effect was cumulative.
To Fibromyalgia support: It’s been about 25 years since I was formerly diagnosed with Fibromyalgia. I also have severe spinal problems, from undiagnosed “severe as the doctors say” osteoporosis, despite having bone density tests. I found my total body pain started with IBS. My GP as well as specialists blamed it all on my weight. Despite yo yo dieting lose 50 gain it back and then some I had the Sleeve Stomach surgery in 2013. I’ve lost 160 lbs. I’ve managed to keep it off. I still have total body pain. I also have what they call many co-morbidities. I would like to know if the following has ever been RESEARCHED: Multiple Sclerosis, Lupus, Fibromyalgia. A very good friend of mine in Australia has MS, her Neurologist says Fibromyalgia, MS and Lupus are sister diseases! I tend to agree, My eldest sibling she had Multiple Sclerosis, my 2nd youngest sister has LUPUS, and the 2nd oldest sister has Fibromyalgia and I too have Fibromyalgia. My brother doesn’t. For me that’s eerie that all four sisters have immune problems and I have very similar symptoms as my eldest sister did when she was alive, except hers were a lot worse. For example: I was admitted over the decades 2 times just for severe vertigo and inability to walk. The very first attack I couldn’t lift my body off the sofa. very Early last Year, one of my eyes dilated exactly like my sister who had MS (she too was misdiagnosed as having inner ear infections. The joke amongst the MS support groups is did you take your side trip to psychiatry? In relation to your presenting topic, I along with many people in my city not only were exposed to COVID, But SARS. I believe they are one in the same. Why do Doctors Gaslight patients, just because the blood work as per their interpretation of it, is normal, so you cannot have MS, Fibro, Lupus. Just curious what other areas of causative studies are being done?
Full blown measles, 5 days in hospital and I think 4 years later FM and 5 years later CFS as well.
All I know is that I was diagnosed with all three (Giardia infection, IBS, and fibromyalgia) around the same time; that would have been in my fifties.
I am now 75.
I came to this site, because my fibro has been so severe, it feels like what I imagine Covid may feel like— but so far, I have tested negative. We are now in the 2024 surge of FLiRT, and I haven’t felt well in awhile, though I’ve never had Covid that I know of. I am a Novid.
Blessings.
I wish I had seen this when it first came out, but it never showed up in my searches before. My daughter had a MRSA infection that put her in the hospital for five days and she has never been well again. She was diagnosed with fibromyalgia and her symptoms started after that MRSA infection. She has no life, really, and doesn’t even get taken seriously be so many medical professionals. It breaks my heart.
I remember exactly how mine started. It was late October 2011 and I was fine in the morning, packed my car and drove 3 hrs to my mums place. By the time I got there I felt like I had the worst viral infection time 10! It was profound. Everything ached, I was exhausted and I slept for a good week. My mum wasn’t very trusting of doctors and took me to a naturopath who said I was having a flare of the glandular fever virus that I first had when I was 10. When I got home from my mums o went to the doctor and he tested me for a bunch of things. I’ve never had glandular fever, and although I’ve had CMV in the past, it wasn’t active. He couldn’t figure out what it was.
I struggled with pain, fatigue and my depression escalated, so trying to keep a job was extremely difficult. By March 2012 I’d seen diagnosed with Fibromyalgia by a rheumatologist. I felt like I was sick for a good 3 or so years and it took me just as long in the recovery process. 7 to 8 years of my life just gone!
What I have noticed since then is that I don’t just have brain fog (confused thinking), but brain fatigue (it’s feels like my brain has literally run out of every to think even when my thoughts stay on track!). My fatigue eased but my depression (including apathy!) and anxiety was still very high, and it still felt too much to go back to work.
In mid March this year (2024) I got covid for the first time, in mid April I had surgery that went well, in August I was sick with something that felt like the flu but I tested negative to covid, flu and RSV. None of these things really knocked be about and I recovered to about the same level of health I had prior to these things.
In early September this year, I felt like I had a viral infection for a week or two with the usual mild aches and pains but the fatigue was profound. I also noticed that my forearms, wrists and hands ached in the same way that only happened during the first 3 odd years of the original viral infection.
As I live in Australia, we don’t have Lyme disease as other countries do, so I can’t be tested for it as I’ve never been out of Australia. I do recall being bitten by ticks during a camping trip with my friends when I was about 10. My friends from the USA have said my symptoms sound like Lyme disease. I don’t know what Lyme-like illnesses there are in Australia, and I have no idea who to see to be tested for it (if there is even a test here!). I’m at a loss.
I’ve felt like I’ve been struggling to live life as a functional adult since the initial illness in 2011 and have worked hard to improve my health, but this recent viral thing in September feels like a flare of whatever started in 2011 and I haven’t fully recovered from it.
Note: I have lipoedema (diagnosed 2018) possible hypermoble EDS (ehlers danlos syndrome) or some other form of EDS (difficult to be officially diagnosed) and PCOS (diagnosed 1995)
Interesting. I can sympathise with you and a lot of people here. I too have had some undesirable accounts with drs but I do now at long last have a Dr that has gone above and beyond my expectations! Just a reminder there are still good drs out there- just very hard to find. Also in regards to your question about Lyme disease, yes there is testing for it here in Australia. I myself was tested for it, though it came back negative. Most of the drs won’t admit there is such a thing here, but a few admit lymes is found in Australia. I would recommend finding an american dr if possible- they will be more open to Lyme testing.
Also have you been tested for a strep infection? I would highly recommend that- your symptoms sound familiar to what I experienced. For some reason drs here in Australia have little knowledge about chronic strep infections that go further than just strep throat….
Health Rising will have doctor review site up soon! 🙂