Long COVID, ? Actually Fibromyalgia - Fibromyalgia Acti...

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Long COVID, ? Actually Fibromyalgia

Gasbag profile image

I have been wondering for quite a while if all the cases we have been hearing about people having Long Covid could perhaps actually be Fibromyalgia.

The symptoms are pretty much identical and as we know Fibromyalgia can be triggered following a trauma or virus if predisposed.

So they seem to have given this “new” condition a new name when actually it could be an old underestimated, underfunded and poorly understood condition called Fibromyalgia.

What does everyone else think ?

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41 Replies
Dizzytwo profile image
DizzytwoModerator

Hi there, you maybe interested in some answers to your question. This was asked a short while ago.healthunlocked.com/fibromya...

Gasbag profile image
Gasbag in reply to Dizzytwo

Hi, thank you , I’ll have a look at that .

I’ve been wondering the same. I have got a friend who had long covid though and it’s cleared up now so I don’t think so. It’s a very interesting thought though

I was wondering that myself the symptoms are very similar my sister spent 11 days on a ventilator with covid and has fibromyalgia she hasn't notice any other symptoms since coming out of hospital just her usual fibromyalgia symptoms

I’ve seen tv programs where they have talked about Long Covid and quite a few have likened it to ME/CFS

Some doctors think that ‘long Covid’ is just another name for post-viral syndrome, which has been around for a while.

I haven’t looked on the internet recently but there was talk of patients with Covid-19 having low T3; perhaps they are hypothyroid.

There's alot of chatter on Twitter about this. In particular, that Long Covid is likely a similar causation root as ME and perhaps fibromyalgia. The difference is that Long Covid is exclusively post COVID infection and ME/fibro often are but not always.There was some interesting research in a pre-published state on Twitter yesterday saying that they are seeing reductions in grey matter in particular areas of the brain, one of which controls memory so I've put out a question whether this would explain the 'brain fog' symptom that seems to be an issue for fibro, ME and now Long Covid.

It is very frustrating that Long Covid has such alot of attention but it's like a new restaurant, everyone wants to eat there as it's novel & new. I do think that this will help those in the ME and fibromyalgia community too so I am hopeful that if we can keep batting away the naysayers & CBT enthusiasts we could make some real progress here.

MrsRoo profile image
MrsRoo in reply to Roo1972

Hi Roo. Very well said. I find it strange that people are so accepting of Long Covid but not CFS/FMS/ME. Let’s hope this helps attitudes to change.

Roo x

Gigimama profile image
Gigimama in reply to MrsRoo

Yes! I agree! Let’s hope!!!

I don't think so... I saw some videos by doctors studying long covid... and the patients seem to have specific markers related to having had covid-19... but the offshoot of them studying this in depth might bring to light something that could be of help in treating fibromyalgia, chronic fatigue etc.. as you say the symptoms have a lot in common... we can but hope.

Lots of patients with COVID, when it started, had a low white cell count, which is a result of an impaired immune system. When I saw some patients blood results (I'm a nurse, working in hospitals) it was weird how they all had a marked drop in their lymphocytes, which are cells of the immune system and help our bodies to fight off infection. AIDS and HIV behaved in a similar way by attacking the immune system, infecting people leaving them with no working immune system. I reckon some virus that scientists don't suspect, or aren't telling us, can cause fibro in some people.

The other possibility for recently acquired or suspected fibromyalgia is that some of us had asymptomatic covid-19 but didn't know it and have a form of long covid and not fibromyalgia. That has occured to me... No harm everyone getting tested for antibodies..

Gigimama profile image
Gigimama in reply to Irish-Cow

I’ve read that antibodies to covid don’t show up in the blood after three months have passed. Do you think that’s true? I don’t know??

Irish-Cow profile image
Irish-Cow in reply to Gigimama

I don't actually know... I haven't researched at all lon the various tests.

Gigimama profile image
Gigimama in reply to Irish-Cow

I know, the whole covid situation is very confusing! I live in Ontario, Canada and unfortunately my city has the highest number of delta variant cases in the province of Ontario right now. However, my whole family is getting their second jab next week

desquinn profile image
desquinnAdministrator in reply to Gigimama

3 months was cited in early studies but it may be longer. Vaccination based antibodies are at least 6 months. But serology tests may detect other aspects after a longer period. Also antibodies do not always denote infection but could be vaccination.

Also there are other ways to infer infection than an antibody test.

Irish-Cow profile image
Irish-Cow in reply to Gigimama

Actually I did read some stuff where they said that the anti bodies were not showing up after months, but that the T cells and B cells still had the memory and would work.. I've no medical background so that's just how I interpreted it. Also that some study done in 2020 on people who had had SARS cov1 years ago, they didn't have the antibodies for that when testedin 2020 but their T and B cells did have the memory of it... which if I interpreted what the study was saying meant that they could still have immunity to SarsCov1 years later. The hope was that the same would be the case with the current SarsCov2.. that immunity would last a long time.

Covid affects your organs ie lungs and Long Covid can leave you with breathlessness months after along with other organ damage potentially. Luckily that is not happening with Fybromyalgia. However any research into how people live with post viral fatigue will help our cause.

There are of course people with Long Covid who do as you say have multi-organ damage but Long Covid is more complex than that I'm afraid. There are many cases where organ damage is not being seen (hence the reason why they're doing these MRIs etc to try to identify why people are suffering with these physical symptoms when blood tests and other tests are not showing damage). If we look to root cause, we have a body response to some external stimulus be that viral, stress etc that then has long term consequences for the health and wellbeing of the individual but where identification of how or why is not yet well understood. I'm open minded as to how my fibro came about so will be looking at the research on Long Covid with interest on possible treatments and therapies that may be beneficial.

desquinn profile image
desquinnAdministrator in reply to Roo1972

totally agree that we need to be open minded. I think that politically and socially that long covid will help our communities. The systemic response to covid or post viral reaction and the similarity with ME/fibro reinforces our conditions credibility even if it should not need it.

Clinically there will be benefits that come out of research from it as well.

But our bodies are complex and symptoms can mean different things and it is dangerous but human to put meaning to things but if it was simple we would all be feeling better already. Open mind, research and patience are required.

Also it will not be surprising to find that covid is an initiating trauma trigger for a future cohort of people that are diagnosed with fibro. This could be with or without a diagnosis of long covid. But saying they are the same is like saying the car crash that triggered someone's fibro is the same.....

I completely agree with you Gasbag. (I love your name) I doubt if anyone will take the effort into fibromyalgia as they seem to be with Long COVID. I had flu one year after the other for a number of years and couldn't get a flu jab until I got asthma from the flu. I still can't understand why doctors are always reactive and never pro-active and few listen properly.

I’me watching a video by Dr John Campbell and he has just mentioned the use of Ivermectin as, not only a prophylaxis and treatment of coronavirus infection, but also treatment for Long Covid.

Irish-Cow profile image
Irish-Cow in reply to penny

Yes, I am using Ivermectin as a prophylactic for Covid-19. A friend who started on it a month ago said, she doesn't have fm but had some inflammatory problem, said that she felt much better after her first two doses. I only started on it last week as my first ever flare up was abating a bit, and I can't say that it was the Ivermectin but the past week I have had almost near normal days.. was able to get think clearly, remember what I went into a room for, had more energy than I've had months and although stiff, none of that awful pain that transfers from hip to thigh or shoulder to upper arm that is almost nauseating. The FLCCC recommended dose is day one day three then a week later and weekly after that, though I will only take it fortnightly at most.. If in a risk of covid-19 setting I will take it again.

I highly recommend everyone googling Dr Mobeen YouTube channel. And find there the video titled ' Dr Tina Peers from UK discusses the Long Haul Syndrome. ' She mentions fibromyalgia in almost her first sentence. We can be very hopeful that something good will come out of the studies on long haulers. Dr Mobeen talks to other doctors working on a therapeutic treatment for it as the understanding of what's going on in the body after covid-19 is figured out. It could benefit many others in the end. I recommend all fibromyalgia sufferers to subscribe to his channel. All the doctors he interviews are totally committed to helping patients, and willing to innovate and are not hindered by being under compliment to big pharma companies or employers who might fire them, and they are sharing their studies and findings with each other and much of their research and treatment discoveries by trial and error for covid-19 are relevant to us.... they are uplifting to listen to, you can tell that they actually care about finding solutions, and are not about getting the next drug that will cost a fortune for to market whether it works or not.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

It's on citing individual doctors but the who mhra, Lancet, bmj all depreciate it's use except if very limited circumstances google.com/search?q=ivermec...

Irish-Cow profile image
Irish-Cow in reply to desquinn

Yes the WHO are denying the evidence on the ground and the doctors saving lives in ICUs and particularly at home in the early stages. The studies are there to prove it's safety and efficacy. Sadly, as it's patent has run out and it's very cheap to make... the pharma companies can't make any money by recognizing it's efficacy. Look up the studies on it's use in Mexico City, Goa, Peru, Israel, Utar Pradesh, the Australian research findings and more recent studies on it. It's all there online. Start with Dr John Campbell's YouTube channel. Very conservative. But watch his few videos on Ivermectin. That's what had me look into it more... Then see FLCCC videos, more of Dr Mobeen etc etc. The bar association in Mumbai are taking legal action against WHO for disinformation. I'm afraid it's all about money where Ivermectin is concerned.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

rubbish clear and simple. NHS is not about big pharma. easy to cast pharam as the enemy but researchers, peer review, more than just WHO but many other independant bodies, publications etc.

I do not rate John Campbell as he is fringe. youtube videos are not peer reviewed and ot a credible source.

also big pharma conspiracy not promoting cheep drug really falls down on dexamethasone and the other cheap drugs that are used and work. Loud minority voices scream but peer review is quiet and slow but the truth comes out.

Irish-Cow profile image
Irish-Cow in reply to desquinn

It's not about John Campbell, it's about the studies you can find the links to to read yourself which you can find beneath his videos.I am not saying that the NHS is connected to big pharma. But they naturally believed the statement put out by the WHO, as did our Irish authorities, relating to Ivermectin. If you research the paper on which the WHO statement is based, you will find that the findings in that document do not match the conclusion written in the paper. But if you haven't researched the evidence available you will not be aware of the role of Ivermectin in the protocols for treating covid-19 by doctors at the coalface who are saving lives with it. Nor the research on why it is so effective.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

I cited more than who and Peru withdrew it. Company that put up the preprint study was discredited and paper withdrawn. PrePrints do not have peer reviewal and as such are not considered good quality until they are published. Availability bias from the doctors treating patients needs to be considered, links with anti vaccine people suggesting that they should take this vets drug as a prophylactic is very concerning etc.

Peer review works and Covid had shown things can be done at speed with reviews of this drug starting last year and no clear clinical benefit found. Check out this for a balanced view google.com/url?sa=t&source=...

Also please don't assume I have not researched things....

ps edit for clarity once I got onto a pc :)

desquinn profile image
desquinnAdministrator in reply to desquinn

UK PRINCIPLE study being undertaken so we shall know soon enough

BBC News - Covid: Ivermectin to be studied as possible treatment in UK

bbc.co.uk/news/health-57570377

I totally agree with you! There are talks of having specialist LONG COVID Specialists Clinics. Absolutely agree that it is likely one and the same COVID & FMS 😩

desquinn profile image
desquinnAdministrator

Quite a few comments on here saying that long covid is the same as fibromyalgia and with the greatest amount of respect we do not know what fibro is or what causes it never mind waht long covid is.

So for people to be sure that they are identical is without foundation. Also there is talk of setting up clinics ut we have still to see how many and what resources are allocated. And we have many reports of people with long covid that are recovering and back to full health and that is not fibro or me.

The recognition that we have similar symptoms caused by a clear biological event is very postive politically with a small p but also practically. We will see improvements as a result of this and it may benefit ME more than fibro but there will be benefits.

Also citing a single doctor for a course of treatment is relatively easy but group consunsus from professional bodies is measured, thoughtful and normally correct. For example we have been contacted by a doctor in the US that has the cure for fibro, parkinsons, cancer and about 40 other conditions with an outlandish claim/treatment. Its not the first and will not be the last so trust peer reviewed research rather than opinions of single doctors that promise the world.

Irish-Cow profile image
Irish-Cow in reply to desquinn

Yes there are a lot of quacks out there. But with top researchers and doctors now seriously looking for the cause of long covid and because the symptoms of chronic fatigue fibromyalgia and other conditions are so similar, it is a ray of hope that they will at least come to understand these conditions more. It's not just one doctor, there is a lot of research being thrown at it because of the high percentage of people suffering from long covid.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

It was a topic at the fibromyalgia controversies conference last year and it was clear that the same specialists that look at and research fibro / me will be the ones helping and researching with long covid.

Looking forward to hearing more from the same conference next week.

Hello, I have been wondering the same thing. I had a severe case of Epstein-Barr virus at the age of 15 and then had the virus a second time at age 19. Then, at age 34, developed fibromyalgia/chronic fatigue/ME. There is, I believe, going to be research done to see if there’s a link between certain viruses and fibromyalgia. I think I had covid 19 too in January 2020. As we all know, one couldn’t get an antibody blood test to see if one had covid because such test didn’t exist in the early days of the virus 🦠 outbreak.

theguardian.com/society/202...

Have a read…..

desquinn profile image
desquinnAdministrator in reply to CripLady

Interesting article and no consensus but plausible lines. Julie Nusbaum's quote at the end is what I was saying and hope.

Irish-Cow profile image
Irish-Cow in reply to desquinn

Also google ivmmeta. com. Read the paper there titled ' Ivermectin for covid-19 : Real-time Meta analysis of 60 studies.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

"In December 2020, Pierre Kory, president of the Frontline Covid-19 Critical Care (FLCCC) Alliance—a group of US doctors looking “to research and develop lifesaving protocols for the prevention and treatment of COVID-19 in all stages of illness”6—spearheaded a call for the immediate use of ivermectin, following a meta-review by its expert panel.7

In a presentation to the US Senate, Kory was emphatic: “If you take this drug you won’t get sick.” Soon after, Andrew Hill, a senior research fellow at Liverpool University doing research on ivermectin for Unitaid, broadcast the findings of his own

meta-analysis on YouTube.8 Both the video (since removed) and Kory’s senate hearing quickly racked up millions of views.

On 6 January 2021, the Frontline Covid-19 Critical Care Alliance and Hill presented their findings to the US National Institutes of Health, which ruled “there are insufficient data to recommend either for or against the use of ivermectin for the treatment of COVID-19.

Results from adequately powered, well-designed, and well-conducted clinical trials are needed to provide more specific, evidence-based guidance"

Meta analysis's take time to dictate inclusion and exclusion criteria and then to judge whether studies are appropriate or not and then whether there is a point to be made. The paper that results from that meta analysis then itself requires peer reviewal where there inclusion and exclusion criteria and analysis methodology as well as there conclusions are judged.

I am sure you can see why this does not really lend itself to real time analysis.

"Caroline Wood, spokesperson for the UK’s RECOVERY trial, told The BMJ that the UK COVID-19 Therapeutics Advisory Panel—the independent panel of experts that recommends what treatments should be proposed for testing through the various UK platform trials10—were unconvinced of the biological rationale for an antiviral effect. “They felt the evidence of a clinically relevant anti-inflammatory effect was weak and that the current clinical evidence and meta-analyses were not sufficiently robust to

recommend ivermectin [for further study].”

"Philipp Rosoff, professor emeritus of paediatrics and medicine at Duke University Medical Centre and School of Medicine in the US, says doctors “are just as susceptible to the availability heuristic as anyone else and use the experience of their ‘n of 1’ one-off ‘experiments’ on a single patient to signify more importance than

what their observations might warrant. For him, advocating for “the supposed benefits of an unproven therapeutic when the sole justification is the desperation of the situation and the relative “safety” of the drug is inherently dishonest and hence ethically problematic.

Bottom line there is a process for doing science and it is not always quick and can be frustrating in that respect. But, ethics, design, trust, qualifications, and methodology ALL matter. It may be that this drug has some benefit but science will prove this if it is the case and that will not be on youtube or a issue driven website but will be in something like pubmed, BMJ or the lancet.

Irish-Cow profile image
Irish-Cow in reply to desquinn

Ivermectin has a decades long history of use... it was properly trialled and tested years ago. They try to say that in an emergency it should not be tried universally at low doses to see if what clinicians are seeing of it's efficacy as a therapeutic in covid-19 prove to be the case in preventing people from becoming seriously ill and dying..... Yet they have no problem approving the use of vaccines in this emergency which have not had time to complete all the normal time trials to see possible as yet unforeseen side affects ? It doesn't make sense. Yes, if it is deemed necessary to take risks in an emergency, risks have to be taken.. but where was the risk of ivermectin? Four billion doses dispensed since it's use, where was the risk is testing it in a whole population for Covid-19 at the recommended dose that Four billion people have have already taken safely ? Unless they were afraid that it would have proved it's worth? The opposition to it just does not add up or make any sense to me... not when they had no problem approving new vaccines in the emergency.. about which naturally so much is still unknown.. Ivermectin is well known and studied over decades.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

again this is not what the OP was talking about and you do nto seem to have read th links I provided that show the balanced approach as to why this is not recommended as a treatment for covid nevermind a prophalactic.

The lanuguage around vaccines is also concerning as these have went through animal, human safety trials AND the efficay trial stage that showed that they worked against covid and continuing trial evidence proves there efficacy in stpping hospitalisation and transmission.

Other meds have been trialed and are being used to help battle covid. Dexamethazone, Monoclonal antibodies, Corticosteroids. Anti virals have been investigated and there was hope that remdesivir would work but it did not just like hydroxychloroquine. This is science working.

Simply put the drug you are advocating has not risen to the level of proof required to be given ehtically as a treatment or prophalactic for covid. And it seems to be trumped up antivaxers under the flag of o not try these tested vaccines that work and use this untested drug that does not seem to work.

I will be locking this thread as I think it has diverted from the OPs original question.

desquinn profile image
desquinnAdministrator in reply to Irish-Cow

Also one other point, the OP was not asking about ivermectin or indeed any treatments and was about the overlap between fibro and long covid. So a potential treatment for covid is really off topic.

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