Fibro or long-covid

[charr]

All,

I’d love to hear people’s opinions and thoughts on this, especially anyone who’s having the same or similar experience to this... And if anyone has heard about this or if anyone has any information please message me.

For background, I am 28 years old and prior to getting ill was in great health.

In January 2020 I started getting pains in my hands and wrists. As an office worker, I figured it could be a strong case of repetitive strain, but went to the doctors anyway to be sure, who told me to rest and not use my arms. Not long after I went off sick to rest my arms, the first covid lockdown began in the UK.

Two weeks into resting my arms, the pains began to spread, until I was getting a variety of different types of pains all over my body, which left me unable to exercise at all and hardly able to walk. I was essentially bed-ridden for months, but have slowly improved.

I still have lots of pains but am now more able to walk, still unable to exercise and can’t walk for long but it’s an improvement.

I was given a diagnosis of Fibromyalgia in April of 2020. Since then, I have spoken to a couple of different pain specialists who have said that they don’t think I have fibro, due to me being so young and healthy beforehand, but no one has been able to give me any clue what’s going on or help with the pains. Until today.

My husband read an article online about the links (or similarities) between so-called ‘long covid’ and fibro. There seem to be a huge number of similarities.

Has anyone had covid (that they know about!) and are now presenting with fibro symptoms? Could I have covid and not fibro? Has anyone heard about this at all or know any more?

If anyone has any more information on this, I’m keen to know.

Thanks

 

[sunkacola]

The doctor who said you don't have fibro because you were so young and healthy before it hit you doesn't have any idea what he or she is talking about, and knows nothing about how fibro works. Many people are young and healthy and then develop fibro.
You need a different doctor who has a clue.

You don't have Covid if you are not affected in your lungs or breathing, and if all you have is pain without fever or feeling ill.
The term "long covid" is used to describe symptoms that people who have been diagnosed with covid and recovered to the point of not being terribly ill any longer, but have residual issues after their recovery, like coughing or fatigue. In other words, you cannot catch "long covid". Unless you were diagnosed with covid previous to having the pain start that's not what is going on here.

 

[Geeena]

My sister had Covid in January 2020. This was confirmed via a blood test given by her employer. She knows she had exactly when in January because she was off work. I was diagnosed with fibromyalgia after years of investigation /neurological treatment and crossing out other diagnoses in February 2020, got Covid in March, confirmed via antibody test in July that year.
I was given a physiotherapist specialist who confirmed I have long Covid symptoms in December. Waiting to join pain clinic at St Thomas.
My symptoms are only muscular /joints and fatigue.
I wanted to give you these facts, I’m not medically trained. I think it’s important that you get medical attention and do not rely on your treatment or diagnosis from unqualified people, no matter how well their intention.

 

[Geeena]

Apologies forgot to add my sister had 5 -6 mths of breathing difficulties after Covid was given a puffer and shown on X-ray where she had damage to her lungs. She didn’t have this before C19 It’s sorted itself out now but it was definitely a problem.

 

[Jemima]

Hi Charr,

I'd agree with Sunkacola that the idea that your age or speed of symptom onset don't detract from a fibro diagnosis. I've spoken to several people now who experienced its onset very quickly, and while the average age of diagnosis may be 30s/40s, some people develop the condition as young as childhood or much further into later life. Your doctor's conclusion does indeed seem to not really add up, and I'd also be questioning their understanding. I'd suggest doing further research, and perhaps trying to consult elsewhere if you are in a position to do so.

I had also understood that long-covid is a condition that develops after an initial covid infection has impacted and passed - so lingering impacts to the body that do not go away after a person has recovered from a battle with the virus. I'm not sure if there are any anomalous patients who develop long-covid symptoms without having been very sick in the first place, but it's not something I'd heard of. I know two people who have been diagnosed with long-covid, and both were incredibly ill during their initial infection - one spent three months in the hospital fighting for his life. Were you tested for the virus? Of course, as Geena said, none of us are experts in this area!

I'd suggest discussing your theory with your doctor, and if they think it might have merit they should be able to request an antibody test for you, and may be able to investigate in other ways. That said, an old school friend of mine was flawed by fibro almost overnight in her mid-twenties, and also found herself rapidly bed-bound, so that can happen too. Whatever is going on, I hope you find the clarity you need soon, and can appreciate how frustrating the uncertainty is. We're here whenever you need to vent!

 

[Jemima]

I'm not sure if there are any anomalous patients who develop long-covid symptoms without having been very sick in the first place, but it's not something I'd heard of.

Wow, so I just did some Googling, at apparently there are indeed long-covid patients emerging who were asymptomatic at first point of infection. I found a study highlighting this that was published in March, but all of the late-development long-covid sufferers were having chest and breathing issues. I say follow your gut and investigate if it feels relevant to you - so much of this fibro stuff is doing our own sleuthing, and these complex, hard to diagnose conditions are so tricky to stick a pin in!

 

[Auriel]

Jemima I been looking for something you was talking about before , I can’t find the thread it was some blood thing ,and gaba or something , no ones ever ever explained anything like this to me before.afternoon b.t.w. x

 

[Auriel]

I found it on thread has anyone tried bccas for muscle fatigue you was talking about low plasma and things from a 2006 study, should I get tested for those things?

 

[Jemima]

I found it on thread has anyone tried bccas for muscle fatigue you was talking about low plasma and things from a 2006 study, should I get tested for those things?

Hi Auriel,

I'm not sure if this is something that we can accessibly get tested for - often, these kinds of studies harness unconventional testing that a normal lab wouldn't offer. Probably the better course of action in this case would be to grab a BCAAs supplement from an online sports retailer and see if it makes you feel any better. This was the study reference you mentioned:

I just read a study from 2006 that said "Patients with fibromyalgia have been found to have significantly lower plasma concentrations of the three branched-chain amino acids (BCAA – valine, leucine, and isoleucine – than normal controls", so that's kind of interesting!

The good news is that BCAAs are popular supplements, and are cheap to buy! Where you are in the UK, you can buy a tub of BCAAs from Decathlon with these specific three branch chain amino acids in it for £9.99 Apparently it comes in three different flavours, too!

My approach through this whole thing has been to read up on fibro, and try anything that was affordable and spoke to me on some level. If the idea of BCAAs speaks to you, I can't imagine that there's any harm in giving it a go.

 

[Auriel]

1st time I heard of bcaas was on here .If I google fibromyalgia 2006 study will I find all this?i know what annoys my fibro , all the foods I love! and stress.guess I’ll just have to eat clouds and drink air : ) ok I’ll have a look see what I can find , I like learning new things

 

[Jemima]

Awww, gawd, I can't find the study now - apparently I didn't save it!

If you have the feeling that diet is a big factor for you, it's always worth going through an elimination diet. It might take you a few months, but you only have to do it once, and then you know! Clouds and air aren't the most sustaining

 

[Auriel]

Oh that’s so funny you made me laugh now 1st laugh of the day

 

[sunkacola]

Jemima, thanks for the info on long covid. I was completely wrong about that, apparently. And of course, one can have asymptomatic Covid, and I knew that, and should have thought of that! So.....always learning.

 

[Jemima]

So.....always learning.

And there's so much to learn, isn't there. I think perhaps a fibro diagnosis should come with some kind of automatic diploma in research (with distinction by default ) and probably the exact same for long-covid. Credit to all of us for navigating this stuff - as if we don't have enough to worry about!

 

[Jemima]

Could I have covid and not fibro?

The Guardian news site has a big multi-article feature about long covid running today - I was just reading that a proportion of UK sufferers are dealing with symptoms skewed more towards fatigue, and less towards respiratory issues. Might be worth a read.

Hope you're doing OK, Charr