Long covid

[Murphysmum]

EDITED to say I’ve just found a whole load of other posts of the same nature. Great minds think alike!

I’ve posted asking about this before but the effects of this are incredibly like low T3.

Not all of the people in this article were in intensive care but is it possible the virus has caused thyroid damage? Or some other mechanism that’s lowered thyroid hormones.

A tiny (awful) part of me thinks “welcome to our world”, which I clearly wouldn’t wish on anyone and I hate myself for having that thought, but if it future research means our plight and the plight of others with long term fatigue is highlighted, then I can’t help but be a tiny bit grateful.

apple.news/AqAf8v1OpS3-hDEq...

[caroash]

Yes the post viral problem are now being focused on because of Covid,but in fact illnesses like M.E and CFS have been around for years,but not taken seriously.My daughter has M.E because of 2 viruses EBV and Cytomegalovirus, but unless they do blood tests for antibodies it's not always known that a virus has caused the symptoms.People with long Covid are joining M.E community for support as share symptoms.

[WhyAmISoTired in reply to caroash]

Do you have a suggestion for a nice ME community?

[caroash in reply to WhyAmISoTired]

There are lots of local support groups ,where do you live? there's the M E Association and Action for M E. Jennifer Brea made a film called unrest ,she first did a Ted's talk a few years ago too.

[WhyAmISoTired in reply to caroash]

I was hoping for a forum like this one, which I found incredibly helpful, but the ME community on this website looks pretty small.

[caroash in reply to WhyAmISoTired]

Yes that would be good one as good as this one,there is one called phoenix rising I think,but it's quite hard core,not for sensitive souls.

[Mistydeb01 in reply to caroash]

It’s a good film. I watched it a few weeks ago and could relate to so much of her struggles.

[caroash in reply to Mistydeb01]

Yes it's educational for those that don't know people's struggles and good for sufferers as can identify as you say.Heartbreaking film too.

[helvella Administrator]

My mind is always taken back to the film Awakenings, dopamine (L-dopa) and 1917–28 epidemic of encephalitis lethargica.

Not so much the precise symptoms as the long term, that is permanent, impact of a virus. And the mixed blessing of "treatment".

en.wikipedia.org/wiki/Awake...

[Ellie-Louise]

You’ll be enjoying his bagel and car tv ads then. 😁

[annnsandell]

Everyone who thinks they have had COVID-19 should be able to go to their GP, have an anti-body test if required and a consultation about resulting symptoms. The information should also be collated to form a better picture and recommendations for treatment, nationwide. The government needs to set aside additional funding for GPs to do this.

[caroash in reply to annnsandell]

Yes I agree,sometimes it's not always known with some viruses,when my daughter first got I'll they did an Epstein Barr test ,but came back negative,a couple of years later read that you need to test after 4 weeks bad doesn't always show in early stages. Two years later it showed that she had and Cytomegalovirus too.The GP said these 2 viruses had done the damage.

[WhyAmISoTired]

Hello, actually I disagree that the symptoms are the same, as I have recently been struggling with both issues. Actually part of the problem for me is that the (hypo) fatigue I am used to behaves in a very different way to the post viral fatigue I'm experiencing now. Of course some things like stress are bad for both, but for example exercise had always been a part of my thyroid management and now I've had to cut that way down.

[Murphysmum in reply to WhyAmISoTired]

I’m sorry you’re now suffering with both. Good grief, poor you.

It’s not that I said they were the same, only that there were a remarkable number of similarities.

If that means that any sort of chronic fatigue is taken more seriously, then that’s a plus as far as I’m concerned. The fact that governments are using it as a tool to try to ensure compliance with the rules means they are aware of it - it’s a pity that they haven’t been more aware of the plight of thousands up to now, and the disastrous way that they’ve been treated and written off to date 😊

[WhyAmISoTired in reply to Murphysmum]

Thyroid-wise I feel much better since starting T3 a month ago... I feel like the hypo fatigue was masking the PVF/CFS, and now that I am a bit more active I actually understand just how badly overdoing it can affect me.

Here's to hoping there's more research into fatigue issues! It seems like an extremely widespread issue with Covid.

[caroash in reply to WhyAmISoTired]

I think maybe the post viral fatigue differs in that it's the cell mitochondria that is the problemy daughter is just about to start the Perrin technique treatment .Also hyperbaric oxygen therapy has helped with many symptoms, particularly headaches and fatigue. It helps the body to heal itself.

[WhyAmISoTired in reply to caroash]

Good luck, let me know how it goes!

[caroash in reply to WhyAmISoTired]

Thanks I will do ,I'm pretty impressed with what I've read so far with good clinical trials too.

[Mistydeb01 in reply to WhyAmISoTired]

I agree. I have been diagnosed with CFS for 9 years and hypo for about 3/4 years. The fatigue for both are different. CFS is more than lethargy, if you do too much your body warns you. If I try and push past the light sensitivity, fatigue headaches and vomiting, you can’t walk or do much really for days (if your lucky).

[caroash in reply to Mistydeb01]

Sorry to hear you suffer with this too,did you have a virus? Yes my daughter is the same,she can do things,but then within 48 hours gets the payback.

[Mistydeb01 in reply to caroash]

Can’t really pinpoint a particular illness. I always had severe tonsillitis as a teenager and by the time I was 15 I could sleep the clock around. If I was exhausted I would be vomiting until I crashed in bed for days. I had a bad bout of flu when I was in my 30s and was in bed for a week, I wasn’t diagnosed until I was about 43 after 20years of neurologist visits

[caroash]

Gosh that's a long time to wait for a diagnosis,I think the tonsillitis bus common withM.E CFS,my daughter has chronic tonsillitis and had them removed at 16.. You might have had EBV ,it often reactivates and can hide in organs and lay dormant in B cells.