Some researchers have proposed that long COVID is a subtype of long COVID.
I think people are pretty familiar with the idea that long COVID could be a subtype of chronic fatigue syndrome (ME/CFS) but fibromyalgia? Not so much. In fact, we’ve hardly heard anything about a possible connection between FM and long COVID. The third most common musculoskeletal condition, FM reportedly affects from 2–3% of the world’s population – making it a huge cause of pain and suffering – yet despite its considerable symptom overlap with long COVID, it’s largely been absent from the discussion around long COVID.
This may be partially due to the fact that FM is not often associated with a triggering infection. As we’ll see, though, FM can be triggered by an infection, and it’s so similar in other ways that disregarding it is just, well, lazy science.
That’s hopefully changing. In, “Could the fibromyalgia syndrome be triggered or enhanced by COVID-19?”, the authors answer their question with a clear yes.
First, they cite numerous studies indicating that the SARS-CoV-2 virus can infect the muscles and produce a rather familiar “triangle of myalgia, physical fatigue, and muscle weakness”.
The major symptoms (fatigue/muscle weakness (70.6%), headaches (68%), and muscle pain (55%) associated with long COVID seem to set up well to mimic fibromyalgia. Interestingly, it appears that some symptoms – possibly associated with small fiber neuropathy – tingling (60%), burning sensations (43%) take longer to show up.
The high rates of neurological symptoms (altered mental status, confusion, dizziness, nausea, headache, burning pain, numbness or tingling, allodynia (sensitivity to light touch)) found in long COVID suggest that it, too, is a central sensitivity syndrome – otherwise known as a nociplastic condition. In fact, one study, “Is Central Sensitisation the Missing Link of Persisting Symptoms after COVID-19 Infection?”, found symptoms of central sensitization in over 70% of post-COVID patients.
Besides the chronic pain found in FM, the suite of other symptoms found in long COVID (physical or mental fatigue (70%), sleep problems, cognitive dysfunction, gut problems, problems with stimuli) are common in the ME/CFS-like suite of diseases (chronic fatigue syndrome, postural orthostatic tachycardia syndrome (POTS), Post-treatment Lyme Disease Syndrome (PTLDS) and long COVID. A web-based survey found that 30% of post-COVID patients met the criteria for FM.
While we don’t tend to think of FM as a post-infectious disorder, numerous cases of it developing in conjunction in with a pathogen (Giardia, hepatitis C virus, human immunodeficiency virus (HIV), parvovirus, or Epstein–Barr virus) have been reported.
Similar Mechanisms Behind Long COVID and Fibromyalgia (?)
The same mechanisms could be driving FM and long COVID.
If a significant subset of long-COVID patients essentially have FM, the next question is how? What mechanisms are causing these two diseases? Now it gets really interesting.
Not long after the pandemic started, Widyadharma’s literature review of the intersection between viral infections and pain noted that viruses can cause pain by directly invading the tissues, by triggering immune activation, or by inducing autoimmunity.
The idea that the coronavirus or other viruses may be directly invading the tissues is intriguing given the many aberrant muscle findings in FM (not to mention its name, which was focused on pain in the muscles).
Indeed, parvovirus – which has been associated with ME/CFS – is widespread in the population and causes long-term arthritis-like symptoms in a subset of patients. Hepatitis B and C, HIV, several mosquito-borne viruses, varicella zoster virus (shingles), and other coronaviruses have all been shown to trigger chronic pain conditions.
While we don’t usually think of them in this way, some viruses can also induce mitochondrial dysfunctions, which in turn can cause chronic pain. Besides the fatigue they experience, about 70% of people with mitochondrial diseases also experience chronic pain. It’s perhaps no surprise that mitochondrial problems in the sensory neurons can mess up sensory signaling and produce pain hypersensitivity.
The idea that inflammation triggered by the coronavirus might be taking a hammer to the mitochondria showed up early in the pandemic. Besides hampering ATP production, the coronavirus itself could also be causing the mitochondria to pound out inflammatory factors that alter the gut flora (microbiome), trigger coagulation and fuel more inflammation. The reversion to more glycolytically produced energy that the coronavirus can cause itself is inflammatory and has even been suggested to produce the central sensitization found in FM.
IgG antibodies attacked the glial cells surrounding the dorsal root ganglia (pictured – Image from Wikimedia- Ganglia Category).
The dorsal root ganglia present another fascinating possibility. These nerve centers located just outside the spinal cord send pain and sensory signals to the central nervous system. They’re known to be disrupted in FM and could, in effect, present a kind of ground zero for the disease that destabilizes the central nervous system.
Nobody had bothered to look for the ACE-2 receptor that the coronavirus uses to gain entry into the cell in the dorsal root ganglion before the coronavirus showed up, but when they did, it showed up in spades. In fact, the authors suggested that coronavirus may even be gaining access to the nervous system through them and other pain-sensing neurons.
Goebel’s striking DRG study shone a bright light on this critical sensory switchboard. Goebel found that giving mice IgG antibodies from FM patients resulted in an FM-like mouse. (Goebel was able to do something similar with complex regional pain syndrome, chronic post-traumatic limb pain, and rheumatoid arthritis).
Goebel found that the antibodies had clustered themselves in the dorsal root ganglia and other peripheral pain-sensing nerves of the mice. In a recent small laboratory study, Goebel found that antibodies from long-COVID patients or from fibromyalgia patients attacked the glial cells cultured from the dorsal root ganglia. They even proposed that long COVID is a subtype of FM and ME/CFS.
“Our results lend credence to the hypothesis that long-COVID is an infection-triggered subtype of FMS and chronic fatigue syndrome.”
Interestingly, early in the pandemic, Oaklander speculated that the SARS-CoV-2 virus might be impacting the small fiber neurons that transmit sensory signals. (These nerve fibers are damaged in long COVID, FM, POTS, and ME/CFS.) Two years later in a small study, she and Avindra Nath found that “prolonged, often disabling, small-fiber neuropathy after mild SARS-CoV-2 was most common” in the long-COVID patients. Another study documented the loss of nerve fibers in the corneas of long-COVID patients’ eyes.
Other commonalities include blood vessel problems, microbiome alterations, autonomic nervous system issues, and the possibility of neuroinflammation.
The Musculoskeletal (FM?) Long-COVID Subtype
Using electronic health records (EHC), the RECOVER Initiative used diagnostic categories in about 33,000 patient records to identify four long-COVID subtypes.
While the “Data-driven identification of post-acute SARS-CoV-2 infection subphenotypes” study clearly has its flaws, it did point to an FM-like subset. The authors noted that many conditions such as musculoskeletal pain, “nervous system pain” and abdominal pain don’t lend themselves to clear diagnoses. Fatigue, of course, is another condition that many doctors hardly consider in their diagnoses, and post-exertional malaise would not show up in these records either. The authors noted that these conditions are more likely to be seen in “functional disorders” (fibromyalgia, ME/CFS, etc.) than in “clearly defined disease etiologies”.
This study, then, exposed a failure of the medical system to account for these disorders, and attempted to study a condition – long COVID – using factors (clear disease diagnoses) that aren’t suited for them. Still, the results were interesting.
For one, it showed that a prominent subset of long-COVID patients – older patients with more cardiac symptoms, who had more comorbid diseases – don’t fit the ME/CFS/FM subtype at all.
These were people with cardiac, kidney, and circulation problems who made up about a third of patients. They tended to be older, were more likely to be male (almost 50%) than the other subsets, and were more likely to have been hospitalized during the pandemic. They were also more likely to have been diagnosed with other diseases prior to the infection.
The second subtype – respiratory, sleep, and anxiety – also included about a third of patients and was dominated by respiratory problems, sleep disorders, anxiety, and symptoms such as headache and chest pain. They were more likely to have had asthma and allergies and other respiratory problems prior to infection. Note how common some of these symptoms (headaches, sleep disorders, chest pain, anxiety) are in ME/CFS/FM.
The Gist
- Whatever keeps a disease hidden is happening with regard to fibromyalgia and long COVID. Despite the fact that fibromyalgia has similar symptoms as long COVID, it has rarely been associated with it.
- It appears likely, though, that many people with long COVID have – as do FM patients – a central sensitivity syndrome; i.e. their nervous systems overreact to painful stimuli and even sometimes innocuous stimuli like touch, light, and sounds.
- Studies show that numerous pathogens other than the coronavirus can trigger fibromyalgia and other pain disorders.
- Invasion of the muscle tissue has not been highlighted with long COVID, but because the coronavirus can directly invade muscle tissues, it could be triggering an inflammatory reaction in them and producing an FM-like condition.
- Similarly, the coronavirus could produce a pain hypersensitivity state by attacking the mitochondria.
- The discovery that the ACE-2 receptors that the virus uses to enter the cells riddle the dorsal root ganglia opens another possibility. The virus could be disrupting this central sensory processing point – causing it to slam the central nervous system with pain and other sensory signals in FM.
- Indeed, one researcher has found that antibodies from FM and long-COVID patients appear to be attacking the microglial (immune cells) in these important nerve centers.
- Other studies have found that the same small nerve fiber damage present in FM and ME/CFS is present in long COVID as well.
- An electronics health data records study identified a common musculoskeletal cohort that looks like FM.
- The fact that FM-like ME/CFS is associated with long COVID should bring hope to the long-suffering and poorly supported FM population. Fibromyalgia on a per-person basis is more poorly funded at the NIH than ME/CFS is. If Avindra Nath is right – and understanding one of the mystery diseases like FM, ME/CFS and long COVID will lead to an understanding of them all – then help may be on the way.
- Stay tuned!
More symptoms associated with FM showed up in the fourth subtype (10%) – which was characterized by digestive and respiratory conditions.
All in all, FM, and diseases like ME/CFS appear to supersede these categories. It would take combining categories 2-4 – which make up about 2/3rds of the long-COVID cohort – to adequately describe people with diseases like FM and ME/CFS. It’ll be interesting, as the studies evolve, to see if musculoskeletal or FM-long COVID, fatigue and PEM-long COVID – or ME/CFS-Long COVID, or gut-long COVID or IBS-long COVID subcategories emerge.
Takeaways
- Whatever keeps a disease hidden is happening with regard to fibromyalgia and long COVID. Despite the fact that fibromyalgia has similar symptoms and possibly similar mechanisms as long COVID, it has rarely been associated with it.
- It appears likely, though, that many people with long COVID have – as do FM patients – a central sensitivity syndrome; i.e. their nervous systems overreact to painful stimuli and even sometimes innocuous stimuli like touch, light, and sounds.
- Studies also show that numerous pathogens other than the coronavirus can trigger fibromyalgia and other pain disorders.
- Invasion of the muscle tissue has not been highlighted with long COVID, but because the coronavirus can directly invade muscle tissues, it could be triggering an inflammatory reaction in them and producing an FM-like condition.
- Similarly, the coronavirus could produce a pain hypersensitivity state by attacking the mitochondria.
- The discovery that the ACE-2 receptors that the virus uses to enter the cells riddle the dorsal root ganglia opens another possibility. The virus could be disrupting this central sensory processing point – causing it to slam the central nervous system with pain and other sensory signals in FM.
- Indeed, one researcher has found that antibodies from FM and long-COVID patients appear to be attacking the microglial (immune cells) in these important nerve centers.
- Other studies have found that the same small nerve fiber damage present in FM and ME/CFS is present in long COVID as well.
- An electronic health data records study identified a common musculoskeletal cohort that looks like FM.
- Fibromyalgia on a per-person basis is more poorly funded at the NIH than ME/CFS is. The fact that FM-like ME/CFS is associated with long COVID should bring hope to the long-suffering and poorly supported FM population. If Avindra Nath is right – and understanding one of the mystery diseases like FM, ME/CFS and long COVID will lead to an understanding of them all – then help may be on the way.
- Stay tuned!
I was diagnosed with fibromyalgia long before I ended up with long Covid, and now every one of my debilitating symptoms have quadrupled, plus uncontrollable breathlessness on top of it.
I was diagnosed with fibromyalgia years before I had Covid (Delta variant) and subsequently got Long Covid. Without a doubt COVID made my FM symptoms worse. Now in Long Covid I seem to vacillate between Fibromyalgia symptoms and ME/CFS symptoms,,,back and forth…but my Fibro symptoms are worse now then prior to Covid. And the brain fog I have now is new.
This is very interesting material. I’m wondering if anyone is currently looking at populations who already had/were diagnosed with fibromyalgia and/or ME/CFS and then got Covid? I would imagine it would not be null, but I do worry about what the the likelihood of and additional symptoms incurred for them of Long Covid from one or more Covid infections would be.
One study found FM patients had more post-covid symptoms, more “severity, more impairment after COVID, more fatigue severity, more waking unrefreshed and cognitive impairment than people with rheumatoid arthritis who came down with COVID. Then it concluded
“In FM patients, the presence of PC does not appear to impact the severity of FM.” ! ?
https://pubmed.ncbi.nlm.nih.gov/35590317/
I have had FM since the mid ’80s. I haven’t had Covid, and I am fully boosted. I still wear a mask in crowds inside because I am concerned that Covid would exacerbate my FM. I had hip surgery two years ago. About two weeks post surgery my FM became much worse with intense neck pain, worse sleep than my normal restless sleep, IBS and POTS. I decided to use myself as a guinea pig and try some of the oxygenators, gut treatments, anti-neuro inflammatory supplements mentioned on this blog with positive results. I have less pain, less POTS, less IBS and better sleep as a result. I’ve also started to stimulate my vagus nerve with a tens adapted device. It’s too early to tell if this will help, but I figure I have nothing to lose by trying.
Hi Karen- just curious if you could share what specifically you tried that helped so much? Would love it if I could find some relief of my FM.
Thanks!
Thank you for these articles.
In 2009 I was diagnosed with Guillan Barre Syndrome variant called Miller Fischer. Paralysis of my legs had me in a wheel chair for about 4 years. GBS triggered a severe form of Fibromyalgia and CFS.
Knowing nothing about FM and CFS, it was told to me like ” oh, you have a cold”! 13 years later i still struggle with pain and CF s. In Aug of 2022 I became ill with COVID and clusters of blood clots in my lungs! I was given Remdesivir, my experience may be unique in that most of all my COVID symptoms and FM and CFS lessened ! But, after 3 months, I was back to my old normal.
In the past month, Dr. wanted for me to do tapering of the only med that has helped me, Morphine. I attempted the taper, ALL my CFS , FM pain returned full force!! I’ve been bed ridden since Feb. 21.
I’m back on original pain meds and other support meds…As my Dr.s figure out what’s next!! I appreciate this news letter that has helped me over the years to not feel SO alone. Thankfully, I have 2 caregivers. I’m normally an active person, but b/c of PEM I ve had to learn to pace my energy…..i appreciate all the info that is done and shared. T Y for letting me offer my voice.
Yolanda Coria from Northern CA
I take N-Acetyl Cistine-NAC ( a real game changer for me), Acetyl L-Carnitine, Niacinamide, 5- HTP, melatonin, Nattokinase, resveratrol, magnesium, circumin and berberine. All of these have been mentioned as being potentially helpful on this blog. I cannot speak to what will help others, but these have reduced my pain, POTS and have allowed me to sleep better. My brain does not feel as though it is on fire, and I no longer have “red legs” in the morning. I am 74 and have more energy, and I’ve started working in the garden again. I hope this helps.
That’s good to hear as I’m starting some of these. How much NAC are you taking?
I’m taking 600mg twice a day. I have no side effects except that the pain and pressure at the base of my skull are gone during the day, and I have more energy. I’ve been taking this for at least six months.
Thank you so much for all the information you provide to the sufferers that are looking for answers and relief.
thank you verry much! may i ask wich doses of each please and how divided? I also take curcumin but if i remember correctly, there was written tumuric (curcumin + black pepper). At least jarred younger recomends it, but one comment on his fb site was stomach bleeding and another upset stomach. do you take only curcumin or turmeric? thanks!!!
I am actually taking tumeric and black pepper that I get from Swanson on-line.
I do not live in the US, So i searched. I found from swanson the full spectrum Tumeric, it is is without black pepper. is it the other one Turmeric and black pepper swansen premium 5 mg black pepper that you take if I may ask? And you do not have upset stomach from the pepper because i allready have stomach problems? thank you!!! good luck with the supplements!!!
I have taken magnesium for many years and find it very helpful. I take many other things, but was very interested to see you take 5-HTP as well. I found it made an appreciable positive difference in my condition overall.
A poll on Health Rising found that about 40% of people with ME/CFS who got long COVID had still not returned to baseline several months later.
Somewhat related, but somewhat unrelated, but my internist says that they have several previously healthy patients who developed a pain syndrome for several months after their initial booster shot that they diagnosed as Fibromyalgia. They told me this because my Fibromyalgia got much worse after my booster (the first two COVID shots aggravated my ME/CFS, but I did not have a year’s worth of more pain afterwards).
I think it fits Tamesin because both the coronavirus and exposure to the coronavirus spike protein (via vaccination) can cause long COVID.
After 12 months the mRNA still makes spike protein in long covid patients.
Despite having moderate FM for many years, I had no bad reactions to Covid shots or boosters, but I don’t have any other comorbidities other than being old. Everyone needs to figure out what his helpful to them, and results will vary somewhat depending on a number of factors.
Excellent read Cort! 🙏
I experienced shingles at an early adult age (21).
Some 🦠 lay dormant in the dorsal root ganglia for life.
I had a conversation with Frederick Wolfe years back.
He didn’t think my FM was connected to dormant or reactivation of HSV3.
Most rheumatologists don’t.
However, I have had biomarkers for decades which indicate potential 🦠 activity but not even ID doctors will consider my hypothesis that a virus 🦠 either post or active is responsible for my continuous fatigue + pain. 😞
I think Dr Prusty was close to connecting the dots- but- he appears to be more focused on mitochondrial mechanisms.
Dr. Amy Proal has been great too!
Dr Montoya was close for some of us.
However, since Dr. Montoya’s departure…
The latest Stanford led symposiums tend to be reluctant to entertain the fact that a dormant 🦠 that has the potential to reactivate can be the etiology for a subset of patients that have been diagnosed with FM or CFS.
🦠 are good at hiding in ganglia and tissue.
“Ervaringsdeskundige”- lived experience tends to always be viewed as anecdotal and misleading.
Whatever the classification or categorization- viruses appear to be the prime causative culprits for our maladies and whether post, active, or in dormant state- they wreak havoc on a subset of us patients.
Hopefully more doctors + researchers will relook things post pandemic.
Miss ya buddy!
What do you think about Derek Carr going to the Saints? 🙂
100% agree with this. It’s a pity there is no easy way to test for viruses active in the dorsal root ganglia.
This study I stumbled across strengthens my belief that research should be going down this route in a lot of FM/chronic pain research:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5618399/
I email authors with some questions but no response…like would antivirals have helped in this case? Would immune – suppression have helped etc?
Fantastic blog as always Cort-thank you
Don’t know if my previous comment went through or not , so just reposting in case not
I very much agree with the idea that dormant viruses in the DRG (and probably lots of other neurons/ganglia) are partly causative in these types of illnesses.
For example, take a look at this study – intractible occipital neuralgia – treated with cervical gangionectomy. Low and behold, they found active HSV-1 & immune-infiltration in the removed ganglion, which makes me wonder if immune treatment &/or anti-virals would help in this type of scenario? Or if anti-virals cannot reach the virus in this region perhaps?
Thansk as always for a fantastic thought-provoking article Cort
Herpesviruses apparently hide out well in the dorsal ganglia – its a fascinating factor.
As to Derek Carr….I’ve been a Raiders fan for decades and my allegiance is being tested! I don’t know if I’ll come back from this…:(. My big hope is that the Saints have a great year with Derek Carr at the helm and go deep into the playoffs.
Thank you for this Cort, on the money and thorough as ever. I’ve had fibro, severely (diagnosed) and ME (undiagnosed but also very severe at times) for about 6 years now. As soon as I saw Long Covid being reported on I thought – ‘that’s virtually identical to fibro but with more lung issues and less pain’. It was clear to me on at least prima facie evidence that this seems related, yet is getting looked into so much more than fibro for some bizarre reason. My history is shingles infection, lot and lots of major life stress, other infections like parvo possible but I don’t know. Fully vaccinated, I had typical muscle pains and some extra stuff after Pfizer but did ok until the latest booster, which is different formulation (over in Ireland anyway). This last new formula booster exacerbated the fibro dreadfully for well over a month and gave added autoimmune symptoms like Winklers disease, and cns stuff like terrible vertigo, plus rashes. After 2 months I’m getting more back to ‘base’ fibro for me, which is small pockets of functioning for few hours on a really good day, once physical exertion like walking is no more than 20 mins at a time. For me, magnesium, d-ribose, Co-Enzyme Q10 and trying to look after my microbiome with live natural yoghurt etc helps a bit, but can still be
floored for days out of no-where. Thanks for the blog, fantastic work, and will be very interesting to see if the NIH and other research into long covid reveals anything that pulls the pieces together between post-infection issues, mitrochondrial dysfunction, and all the other pieces you can put on the venn diagram of fibro, ME, long covid, POTS etc. (Sorry for the long post). Great work anyway!
Yes 🙌 Great job Cort (as always)! I’ve had Fibromyalgia for over 20 years and have said it was triggered by a virus. Then over the years I also had a few tick bites, which made it worse. Then in 2021 I got Covid and 2 months later my Fibro flare came on with a vengeance. The science is unfolding to indicate that some of these post infectious disorders probably worsen with each subsequent immune hit. Whether it be a virus, a stressful event, a bacterial infection, if our immune system is in a weakened or primed state, we are more susceptible to damage from these events. I believe it may have a lot to do with dysbiosis of the microbiome and what state we are in when we are hit by one of these events. It’s often just the perfect storm. Unfortunately that’s why it’s probably going to be tough to narrow treatment down to one pill. However, it seems plausible that a cocktail of various meds and natural supplements may do the trick. Personally I have taken many different immune support supplements over the years and eat a pretty healthy diet, etc, which is why I feel I’ve faired better than many folks with Fibro. But I’m hopeful that we are getting closer to deepening our understanding of the human immune system, hence improving treatments. Thanks again for all your work in keeping people updated on the progress.
hi, may i ask you wich different immune support supplements you have taken please? i am in big trouble with immunesystem complaints but other the vitamine C, i do not know any immune support supplements or where to search for it. Also if you want the doses and how divided during the day. thank you!!!
Good point! “The science is unfolding to indicate that some of these post infectious disorders probably worsen with each subsequent immune hit.”
I wonder if severity could be a function of how many immune hits you’ve had? Interesting idea!
I have a problem understanding what central sensitization syndrome (CSS) is. When I first told my doctor that I thought I had long Covid, she diagnosed me with CSS and gave me some literature about it. From her literature, CSS appeared to be some kind of umbrella term for dozens of syndromes, including PTSD and ADHD. These are seemingly brought on by adverse childhood events and genetic predisposition. Yet, when I look at the scientific literature almost all articles talk about pain. To me, it sounds like an attempt to psychologize a real physiological illness by lumping together every syndrome family doctors don’t understand and saying it is caused by trauma and should be treated with psychiatric drugs. Is there a real and specific illness called CSS? Is it physiological or psychological. I really resent having doctors tell me that what I have is”all in my head”, aka CSS.
FM is complex. It is caused by a disruption whether viral, bacterial, emotional or environmental like Gulf War syndrome. There may be a genetic predisposition as well. Many rheumatologists don’t understand it either, and some of them resent FM being assigned to their specialty. Since there has been few research dollars to study it other than a few independent university researchers, there has been little progress other than addressing pain or sleep except from a few drugs in the past thirty-five years I’ve had it. These drugs may also come with some unwanted side effects.
There is also a connection between people like me that have had their gall bladder removed and FM. I was told forty years ago it was a “vestige organ,” but it is not. One function is performs is producing bile that is key to digestion. Bile from the gall bladder empties into the small intestine where melatonin is produced. This may be one way the cascade of problems in FM start. About half the people that have had the gall bladder removed develop SIBO. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4622137/
The psycholo-gizing of these illnesses that are obviously physical has been a massive–MASSIVE–insult that has been going on for decades.
That said, in our ongoing war to defend/define our illness as a physical ailment, I think we are prone to make the mistake of disregarding altogether the psychological impact. Even peripheral pain (like cutting your thumb) can result in intensified physical pain, via psychological phenomena, things like catastrophization. (e.g. “If my thumb doesn’t heal, I won’t be able to cook again, and I will lose my job, etc.”)
Because it is so difficult finding anything at all that helps with symptom relief, tools that address the psychological add-on (things like mindfulness, meditation, etc.) should not be cast aside.
I’m not sure I see enough discussion of these tools in these message boards, and sometimes I fear that is because if we talk about them, we are giving ammunition to the medical people who claim our conditions are nothing but psychological.
Thank you for responding Brian. I am not disputing the usefulness of such things as meditation/mindfulness, but medicine has historically treated women’s physical complaints as hysteria, or “all in your head”. Since many of these syndromes, with the possible exception of PTSD thanks to the last few decades of war, are predominantly suffered by women, it gives many doctors the excuse of “hysteria”. It’s exhausting. I’m tired of it. I just had an appointment with a psychiatrist, ordered by my doctor, in which he didn’t ask a single question, just gave me a long lecture about post viral syndromes not existing and brain fog being a made up term. Prescribed an antidepressant. This is still going on. I don’t have FM, I don’t have any pain beyond the usual for a 75 year old, but I am sick and it is NOT all in my head.
This is the problem with these diseases – they are at least in part central nervous system diseases which makes them “invisible” to the eye and prone to psychologizing.
CSS, though, could be as simple as having jacked up microglial cells in the brain responding to every stimuli as though it was threatening and pumping out pro-inflammatory cytokines that tweak the nerves producing pain signals.
Or it could result from problems with a damaged prefrontal cortex being unable to regulate the limbic system.
Or it could result from problems in the dorsal root ganglia which are causing them to slam the central nervous system with a barrage of sensory signals which overwhelm it.
There are many possible explanations – all pathophysiological. The mind/body part comes in because we know that elevating the stress response makes CSS worse – so if you can reduce that you may get some relief
I don’t like diagnosis myself, but desperation over FM drives me to it. Cort’s take here makes a lot of sense in my personal experience. I have decided tha t might have long measles. I probably had a light case of Covid early in 2020 but there was no testing then and it doesn’t seem to have made the FM worse. There were no vaccines for measles or even polio when I was a kid. So I got everything except polio. The measles led to meningitis or encephalitis. (Also had chicken pox and shingles later.) Many decades later after a bad infection in my hand that lasted a month, all hell broke out and I was told I have FM. When I look back I see that I was collecting one FM symptom about every decade since my late teens. Definite FM was diagnosed when I was 70. This is a real bummer, but whatcha gonna do? At least no one is telling me it is all in my head anymore. Which is correct, of course. Because my brain is in my head, and so on and so forth. But that is not what they mean.
As an ME/CFS patient, I wish for more research into hypersensitivities.
And I wish for ME/CFS-related articles to include mentioning hypersensitivities to odours/fragrance. As far as I know, many ME/CFS patient have this. But often articles do not mention it and make it seem as if hypersensitivities are limited to sound, light and touch. Even though hypersensitivities to fragrance are by far among the most disabling and limiting symptoms in my daily life – it even hinders my access to help in the medical and social system.
I do wish for research not to forget asking for this symptom in LongCovid surveys also, and for ME/CFS-related articles to mention it alongside other hypersensitivities.
I agree! As someone with a long standing case of environmental illness; aka chemical sensitivities I wish they would get more research. It’s a distinct part of these disorders – they didn’t pop up for me until I’d had it for 15 years.
A general musing on FM: I know of a person with FM incl. hypersensitivities who developed a lot of disc prolapses despite being sporty (which can be related to weakness of connective tissue). I’ve been wondering if there couldn’t be a parallel to Jennifer Brea’s story: At least as as far as I remember, Jennifer said that even though she got as good as cured in the end by correcting structural instabilites, she in fact had a classical post-infectious onset of ME. So the interesting question there is, how could infection influence e.g. connective tissue?
One possibility is that viruses can influence genes epigeneticly….turning on/ off, up/down susceptible genes.
Thank you, that’s an interesting thought!
I have now been able to look up the original posts and am including the reference below. In them, Jennifer Brea shares her own thoughts on the possible mechanisms behind infection damaging connective tissues, here conversation with Ron Davis about it, etc. (though I have not been able to re-read): This is the directory of posts https://jenbrea.medium.com/cci-tethered-cord-series-e1e098b5edf ; in it, I am referring to the “Onset: Part I” – “Part III” posts; also this one https://jenbrea.medium.com/how-infection-can-damage-the-cervical-spine-d43d3dac5734 comparing the ways how infection can damage the spine in other known conditions.
https://www.news-medical.net/news/20200825/Advances-in-Virus-Epigenetics.aspx
Here’s one you might find interesting!
Thank you for the link!
P.S. I think fascia (i.e. connective tissue) research is another pioneer research area where new discoveries are being made. There was an arte TV documentation about it that interviewed researchers like Carla Stecco, Thomas Myers, Robert Schleip. I found an English language version of it here: https://www.youtube.com/watch?v=nNhKqwDbyyo , a German version e.g. here https://www.youtube.com/watch?v=-f_Z6qxbhDo .
It would be great if they’d connect to ME/CFS research too, esp. with regard to the structural aspects.
I’ll check it out !
Could you please include links to the original research publications that you are referring to? I would like to understand the information in its original source. Thanks!
Hi EH – I forgot to provide the title and a link to the RECOVER paper – https://pubmed.ncbi.nlm.nih.gov/35589549/ and the title – “Identifying who has long COVID in the USA: a machine learning approach using N3C data”.
Last October I tested positive to Covid, I had NO symptoms and it only came to light as I was on a cruise and had to have a mandatory test. Unfortunately, I have had long covid, exacerbated by the fact that I have fibromyalgia. My rheumatologist agreed that I had long covid and it took 5 months to recover. My fibromyalgia started in December 1981, 10 days after I was hospitalised with suspected rheumatic fever on total bed rest for a week. It was concluded I had a very nasty virus. It was not diagnosed until 1998. I have always felt, since the start of covid, there would be many people who would have fibromyalgia after they had covid. As the article states there are symptoms which are the same in both cases.