Is 'Long Covid' actually Fibromyalgia? - Fibromyalgia Acti...

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Is 'Long Covid' actually Fibromyalgia?

Reykua profile image
14 Replies

Hello everybody, So sorry you've not heard from me for so long, been trying to 'find myself'.

Quick question - Is it just me or do the symptoms of this 'Long Covid' sound remarkably similar to Fibromyalgia???

It's my hope that the medical work being undertaken to investigate, identify and treat this phenomenon will go some way to assisting those of us who have been suffering from this very same collection of symptoms for years.

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Reykua
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14 Replies
phlebo123 profile image
phlebo123

Hello 👋 I listened to a programme on radio 4 last week and like you, I thought the symptoms they described for "long covid" sounded remarkably like fibromyalgia!! They described fatigue, muscle aches and pains, exhaustion after small chores, and mental confusion! There certainly seemed to be many things in common. This would perhaps suggest that fibromyalgia may result from some kind of postviral malaise. Hopefully the research they are doing on long covid patients might be of benefit to us! Thanks for your interesting question!! Xx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

We may indeed benefit from some of the research into this and it may give some insight into why the body overreacts in some cases and becomes the issue that people need to deal with.

But it is far to early to conclude that this is the same as fibro or ME for example.

Lilybug profile image
Lilybug

I have been thinking this myself re Long Covid

Possibly shock to the body etc

Stay save and warm

Jackiejack123 profile image
Jackiejack123

I actually said this to my husband yesterday , 🤷‍♀️

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Other health conditions can lead to long term fatigue etc. My husband had a mild stroke, and was subsequently diagnosed with post-stroke fatigue syndrome.

While some people can attribute a virus etc to triggering their fibro, not everyone can .... But if nothing else, hopefully the awareness around long-covid and it's debilitating effect on people's lives will lead to greater awareness for every one xxx

mrsmerlin profile image
mrsmerlin

Not in the slightest. In writing there seem to be some similarities, in reality theres a huge difference.

I had Covid at the end of March and have suffered with long Covid ever since. I already had quite severe fibromyalgia - treated with morphine.

Long Covid has affected areas of my brain. The memory loss is akin to dementia. I have stared at a cup for 10 minutes trying to work out what it was.

I have had what the neurologist describes as a permanent medium level migraine.

Low grade fevers most of the time whilst shivering with cold.

I had stabilised epilepsy. I now have seizures every day.

My lungs are full of 'crushed glass which may need to be removed if they don't reduce.

I get short of breath walking to the kitchen when my heart rate will go up to 130. My oxygen levels are around 92 but do dip to 86. My blood pressure is up and down with no cause. My bloid sugar is all over the place - I am not diabetic.

The pain is indescribable - every muscle and bone feels broken - don't know if you've ever torn a muscle or broken a bone.

I haven't smelled or tasted anything since April - not necessarily such a loss as I have 2 fragrant dogs so don't smell that.

The exhaustion has me sleeping up to 22 hours a day. Moving my arms to eat is too much at times.

These symptoms constantly chop and change.

Take fibro and take each element to the absolute limit ... you have an idea

I'm not exaggerating, these are the symptoms. Not all present at once but some are constant.

For those doubting me, go to Facebook and look for one of the many support groups. Survivor Corps is a good one ... Look at the files and find the symptom check list .... it isn't just cough and temperature.

For the sake of all you value follow the rules. Stay safe and do not catch this. You are as much at risk as I was of long Covid.

There is badge available from masks 4 all that says you are high risk. Get it, wear it

PLEASE; PLEASE; PLEASE

FOLLOW THE RULES

STAY SAFE

p.s. I caught it from a delivery driver insisting on handing me a parcel then coughing.

Welshcatlady profile image
Welshcatlady in reply tomrsmerlin

Sorry to hear that you are suffering so much due to Long Covid, yes on the surface the symptoms do sound similar to Fibro symptoms, but what you have described is most certainly not Fibro. I'm sending you a gentle hug, and hope that you can get back to some sort of normal soon. Take care x

mrsmerlin profile image
mrsmerlin in reply toWelshcatlady

Thank you xx

Freddie20 profile image
Freddie20

I have been reading the medical Medium, he says that fibromyalgia is a result of the Epstein Barr virus, maybe he's right. Unfortunately the list of vitamins you need to cure yourself would bankrupt you. But I am going to follow some of the recommendations, also reading grow a new body (I wish)

There must be an answer somewhere to this agony. Keep looking, and lets hope we can all find some relief. X

Reykua profile image
Reykua in reply toFreddie20

Yes. It's been my feeling all along as I couldn't fully relate to the 'past trauma' hypothesis.

This makes more sense to me as the timeline of my symptoms was following a terrible viral infection that laid me low and I was initially be treated for 'post viral' symptoms.

Will have another read and check out the vitamins - I'm also on loads of meds at the moment so I can appreciate how you must be feeling.

All the very best going forward. Sharing is Caring.

mrsmerlin profile image
mrsmerlin

I have a neurologist trying to sort my brain problems (good luck with finding one in me lol) and am waiting for an appointment with a specialist pulmonogist (spelling may be off)

I have meds to calm the cough, inhalers to keep my airways open and added paracetamol in for headache.

I was already on a mass of drugs for fibro and another couple of conditions.

At first I thought my pre-existing conditions were to blame for complications, but I'm told not and others I have met were completely healthy.

I'm afraid I bore people because I keep repeating the stay safe message. I get sick of seeing the various it's not real type of conspiracy theories tbh

Just be sure to keep yourself safe

X

Reykua profile image
Reykua in reply tomrsmerlin

So glad you're still around and able to share your experience and knowledge of both conditions as well as the Stay Safe Message.

I've become borderline paranoid about this pandemic and had to mentally force myself out of my home after eight months of self isolation as I basically started my lockdown at the top of the year - well before Boris ordered me indoors.

Do stay well and keep us informed of your progress ok. I have a sneaky suspicion that the Regeneron drug used on Donald Trump recently may go a long way towards assisting those of us suffering from FibroM and potentially, ME and CFE.

Just hoping....

mrsmerlin profile image
mrsmerlin in reply toReykua

As long as you wear a mask and keep 2 metres apart plus wash your hands you should be ok.

I also recommend getting some microbial wet wipe type things - they use them for bed baths and you can buy them on amazon.

Xxx

glochessum profile image
glochessum

I have also become very frustrated hearing about the affects of long COVID and not one single person compared it to fibro. The symptoms apart from the lung scaring are nearly identical. Just hoping there will be more research done that might benefit us all.

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