Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

Anyone seen this new theory about how Covid causes damage? It’s the bradykinin hypothesis and bradykinin influences blood pressure, blood vessels etc. I wonder if it could apply to us in any way.

blogs.sciencemag.org/pipeline/archives/2020/09/08/bradykinin-and-the-coronavirus

@Criticallythinking I have come across it, interesting but don't know what it means for us yet. Interesting about the link with lowered bit D and potassium though.

Another one here with a cold-induced relapse - I’ve finally given up on the idea that I just have a cold.

Like you guys my kids had colds last week, I thought I had it, then boom swollen glands,exhaustion, muscle pain all back again.

Is it going to be like this all winter???!!!!

Also - given that some of us have positive autoimmune test results, has anyone actually managed to start taking an immunosuppressant or steroid to tackle this, and if so, is it working?

I’m still on a massive waiting list for rheumatology and my GP won’t deal with it

@Whatapickle78 I’m sorry to hear this. I agree being exposed to new viruses does seem to make us unwell again. So far I am not as bad as the first big relapse I had, but not sure I can face a winter of this!

I didn’t have a positive autoimmune test as far as I know but I am seeing the rheumatologist next week. So will be sure to mention.

I’m quite low today as a result of it all

@fedupofbed
I just remembered I hadn’t replied to your message a little while ago!
Good news - I am actually feeling good! I still get some racing heart symptoms occasionally but now that I know they are not dangerous I am able to relax through the symptoms!
So it’s been almost 3 weeks since my last “relapse” which is a good thing!
How are you feeling at the moment?

Im blowing my nose every 5 mins, throat is red raw, so hopefully this is just an awful cold. Never thought I would be happy to have a cold.

@findingschools4myboys yay that's good, through the other side. Sounds like you've got a great positive attitude too.

@Criticallythinking @Whatapickle78 and @Kitcat122 I'm sorry you're relapsing now. It does seem like our bodies are vulnerable to every little knock at the moment.

It's a bit Groundhog Day here - just lots and lots of fatigue. Adjusting to DH going back to the office full time and DC back at school has taken it out of me. But fingers crossed, no SOB for a while and and heart rate not too crazy either.

I spoke with the ME CFS specialist yesterday. It was a bit underwhelming. He asked lots of questions but didn't say a great deal - I'm hoping his letter will be more expansive. What I remember he did say was: I may be 'borderline' ME/CFS, my prognosis was good, that I have to keep calm and positive, and of course pace - lots of rest but try and strengthen muscles where I can. He's going to send me a list of supplements he recommends and also prescribe an antiviral (didn't catch the name). I'll share all this when I get his letter.

Hi @fedupofbed sorry you’re still fatigued. Good news about your SOB and CFS prognosis. Hope that letter is more revealing.

Keeping calm and positive, so tough when every time we make progress we get knocked back.

Here’s to keeping on keeping on

@fedupofbed that's good about the ME/CFS prognosis ... I suppose it's still such early days (in the grand scheme) and more is being understood about covid all the time.
Did he recommend any particular muscle exercises? I've been fearful of doing anything much beyond household activity since I had a relapse following the yoga stage 1 on the Facebook group. Think I just overdid it on several fronts at that time though.

Hi
I have been having breathing issues since getting ill back in March.
Will have a proper catch up with all these threads now I know they are here lol

@TiddleTaddleTat he hardly said anything! He didn't really talk about Covid, he just asked me lots of questions about my symptoms and then at the end summarised what I said in my last post. When he said about strengthening exercises, I did specifically ask about yoga and he said yes.

On my quieter days I'm managing Suzi Bolt stage 1 yoga fine now - maybe every 2 or 3 days. I keep thinking of trying stage 2 but have never quite felt ready for it. The first time I tried I relapsed too and was really nervous about trying again but now I really enjoy it as long as I don't have much else planned for the day - which is admittedly hard if you're working and doing household chores as you are! Maybe try again on the weekend?

Ah yes @MillStone we all just keep on keeping on don't we? That's all we can do! Love and strength everyone.

@stuffedmk hi! Sorry that you have to join us here, and sorry that you're still having breathing issues.

@criticallythinking
Sorry it’s getting you down too. It just seems never ending some days doesn’t it, then on others I feel I can take things in my stride a bit more.

Thanks for raising the question with your rheumatologist, it’ll be interesting to know what they say. My hunch (or hope) is increasingly that this is, for some of us at least, a temporary immune system malfunction (autoimmune condition) caused by Covid, and if there’s anything we can take in terms of immunosuppressants that might help speed us on our way to recovery - THAT WOULD BE FABULOUS!! We live in hope (just).

@fedupofbed
Your comment about us being like little old ladies made me laugh - that’s exactly how I feel!

I hope the letter from your CFS specialist gives some better insights than the appointment. That’s often the way. Be interesting to see what he recommends. I too would love to increase exercise slightly again, but yes so far, it does seem to cause temporary setbacks...

Have a restful night all xx

Evening all,

I haven't checked in for a few days, looks like progress for some and lots of advice to catch up on!

I had a good day this week - my follow up lung CT was clear after the first one in July found a patch on my left lung, which was a relief.

But have also had a setback the last couple of days after overdoing it when DH went into the office rather than working from home, so just doing the school run, entertaining a 4 year old and doing dinner, bath and bed was too much!

Hoping a few days rest will get me back on track - although I still have a long way to go with the fatigue anyway....

Hope restful weekends all round!

@seriouslynonames oh that's fantastic news about your lungs. I bet it feels like a weight has been lifted.

I hope you manage to get some rest this weekend 💐.

@seriouslynonames that’s great news and good to know these things can and will heal.

@Whatapickle78 I completely agree with you and my GP felt the same too. Though I don’t know if steroids cause more problems than they solve long term- I will ask the rheumatologist. My GP also asked me to ask her about auto inflammatory conditions which I think is the same thing.

I’m so down today about it all and trying to stay positive, I slept a lot and my pain isn’t too bad, but on top of usual relapse symptoms I’m still having diarrhoea and I’ve lost a lot of weight (I’m on the verge of underweight after all of this).

@Whatapickle78 I have a similar hunch! But would we be able to get GPs on board and prescribe immunosuppressants? Mine won't even give me pills to help me sleep! 😩

@fedupofbed glad to hear your sob has gone (or better). Mine too although it wasn't my worst symptom. Sorry to hear you've been given a diagnosis if borderline ME though. That must be hard to come to terms with. 💐

@Ernieshere sorry to hear you now have a cold too! It never rains..... hopefully you'll be able to shift that quickly. 💐

@Norugratsatall @Whatapickle78 I expect immunosuppressants would require a hospital prescription and is beyond the GP. They ought to be able to prescribe steroids though and I think some long haul covid-ers have tried that.

My husband takes high level immunosuppression for organ transplant. He is now experiencing similar post viral symptoms to me...but his started 2 months later. Not sure what that says about whether this could be a solution or not (he takes a high dose).

Thanks for that info @givemeanother . I'm very sorry to hear your husband has it now.

@Norugratsatall Thank you so much, very kind of you to mention me.

Last night was just awful, I don't know if its a very very heavy cold, or some sort of Pnuemonia.

I did wonder if I would be o.k last night, I must admit.

Im going to phone the G.P on Monday and see if I need antibiotics to clear my chest.

I keep going over & over what Ive done, we went out for something to eat last week, DC is back at School sitting next to one person and we have been shopping.

I wonder if I have been too relaxed.

Last night made up my mind, I will get the flu jab.

@Ernieshere you're very welcome. Yes good idea to see your doctor particularly as your immune system will be exhausted.

@Criticallythinking I hope your day went okay in the end? It's so hard not to get down by it all. Is there anything you can do to give yourself a lift mentally, even if it's just something small?

@Ernieshere I hope today's gone okay for you too and you've recovered from your bad night.

I made it out of the house again today - visited my lovely in laws for tea and cake in their garden. It was such a treat, beautiful weather and a feeling of normal life! I'm now back on sugar too, hooray. I had stopped it in desperation really, as ever looking for the magic cure. For me it made no noticeable difference, and it's a sign of my confidence that I'm recovering that I've dared start treating myself again.

Wishing everyone a good night's sleep.

@fedupofbed thanks for your kind words I appreciate it. In the end I got out for a walk in the sun which did help a lot, just not being in the house.

@Ernieshere gosh you poor thing sounds like you have done nothing other than catch another virus. Does make you wonder what has happened to our bodies.

I’ve been awake since 5am with nerve pains and my throat is sore. I don’t understand how the tingling (round my mouth, couple of toes and arms) can be worse again after getting better when I haven’t got Covid anymore.

I’m due to start work this week but that doesn’t seem realistic now. Though I’ve got a note til the end of the month

@Criticallythinking That sounds horrible, is there anything you've tried that helps at all? It's good that you still have a longer sick note, there if you need to use it.

@fedupofbed Glad you are getting a bit of normality - sometimes it only takes something that seems small and simple, but is so needed for us. I agree about sugar, I cut it out although was never very strict about it, but never really seen much of a difference if I'm honest. Plus the net benefit of having the pleasure of things like sweets, cake etc is worth it for me!

I'm holding my breath today to see how I feel. Have made a couple of trips out lately - a shop on Friday and then did more steps than usual yesterday (2000) so we'll see if I pay for it. Generally my symptoms have lessened so that they only occasionally pop up throughout the day, and quite mild - ear fizzing, twitching muscles, chest pain, earache, muscle aches - it's still the fatigue that is the biggest problem.

Enjoying doing guided mindfulness every day , which I never thought I'd say!