COVID long-termers 14 weeks+

[isitorisntit]

Welcome all. I'm sad that many of us are still here but at least we have each other. The other thread is full, hence this new one.

Welcome anyone else who is struggling with a long recovery from COVID. They're a supportive lot, here.

*@Beforetoday it isn't pathetic. I started and thought I'll never be able to do it and still can't quite believe I have but you can repeat any day you want to until you feel ready.

*@Whatapickle78, yesterday was my 31st run and funnily enough I did feel really tired in he afternoon and not quite as bad today but still tired. It helps me sleep all night though as I was waking every night and struggling to go back to sleep and waking early.

I've been filling in the covid app and missed a request to go for a test a few weeks ago but I did have a test yesterday as it asked me to do and it was negative. I am sure I had it in March though.

Thank you *@MillStone. I missed your post.

@Beforetoday and @SunshineCake welcome, commiserations on needing to join...
Somewhere in the advice on CFS ME is a theory about heart rate. Work out the resting heart rate then keep it under basic + 20%?
That’s what I started doing about 6-7 weeks ago and it has so helped me.

Also to say...when I started my heart rate was 90ish at rest. It’s gone down to 76 as at last week (more like normal for me)

@fedupofbed Thanks for the Yoga group info. Just joined. Shattered today but hopefully will be able to do some tomorrow/very soon!

Hi, I hope you don’t mind me joining in. So much of what many of you mention is very familiar to me - but I have not had coronavirus, but I had severe pneumonia ( possibly set off by the flu like virus that preceded) with immune over reaction - 10 years ago. I was very much alone in trying to get well again! I had muscle and joint pain, headaches, sore throat, extreme fatigue, SOB, fainted easily, tinnitus all sorts of symptoms and sometimes was so tired I could not eat - or think or read. EventuallyI was diagnosed with chronic fatigue syndrome ( and associated POTS) and I learnt to pace and manage my limited energy. I eventually came to think of of what ever was wrong as being down to a damaged ( mitochondrial) energy producing system ( everything especially muscles need energy) which needed gently coaxing to recover by not not trying to do too much too soon, and gradually getting all systems back up and working.
What I wanted to say is that it might be helpful to take your time to build up your strength very slowly and pace carefully. Try not to get frustrated. Build up little by little- a tiny walk at snails pace each day not a long walk once a week. I found gentle floor based Pilates helpful.
I realise my experience is from a different illness so my experience is different! I hope post covid recovery will be better understood soon.

Thank you for sharing your experience @maggiso . It sounds very similar to what we're going through. I hope that you recovered your energy eventually. I'm still barely walking and feel like I have a long road ahead of me.

Thank you for this @maggiso!

Not been around for a while but just thought I'd drop in to say I got my antibody results today and they were negative, obviously disappointed but was expecting it given all I've read about them. Am gradually getting better although have a really sore throat and no voice again today, seems to come and go along with the chest pain and shortness of breath although hopefully still moving in the right direction..think its week 18/19 but I've lost track!

@maggiso Thanks for telling us about your experience and for your advice. It must have been difficult going through that alone.

I think a lot of us have recently learned the hard way that the only option is to do as you suggest, take small steps and accept that this will take time.

Did you return to your previous activity level and do you still need to manage the CFS today?

I had an apt with Infectious diseases yesterday.

A question I asked was whether the acid reflux issues could be contributing to the SOB. The Dr speculated that it might be the other way round -- the reflux/stomach issues might be a result of pressure differences due to SOB.

Whether or not this or simply being post viral caused the issue, they didn't say... but it's logical and might continue to aggravate the problem(?). As mentioned, this was only speculation but I thought it was an interesting idea.

I also learned that I don't have a blood clot after all. The Q Scan was clear. Apparently the CT was missing a section of the lung that was interpreted as a clot. No signs of scarring or tissue damage either. They advised that there is no reason to suspect any long term damage.

@Lightsabre Hi, hope you're doing okay. Am I right in thinking you were prescribed an inhaler a while back? Did it help at all and do you still try it?

So much useful experience and support here. Thank you. I hate that we are all having to work this out though.

@Tangledyarn - can you say more about the antibody test? Are the tests not reliable or are you not immune for very long?

Still exhausted this morning and can't get enough air Into me. Fingers and arms tingling.

Hi everyone, hope I’m ok to join this thread. I was on the lungs threads back in March/April. I’m week 16/17 since first becoming ill. I share many ongoing symptoms talked about on this thread. Mostly, chest pain and tightness, tingling limbs, waves of nausea, sore throat on and off, brain fog and generally feeling wiped out.

I have had bad relapses which last 4-5 days but my overall trend seems to be improving. Not much to add but it’s good (if you know what I mean) to find a thread for those with a longer illness.

Millstone- did I return to my pre illness energy levels? Not fully, but gradually things did improve once I stopped trying to hurry! Yes I do still have to manage my CFS but it’s more subtle now. Thanks for asking.

@maggiso thanks for your reply, it’s good to hear you improved.

@AndsLee How are you doing at the moment?

Morning everyone. Day 130ish. Second day of 'radical rest', ie not even going down the stairs. Trouble is, this is really bad for my mental health. I can't ease my racing mind, I can't stay away from my phone, and if I order one more supplement I'll bankrupt us. I just can't seem to lift myself, mentally or physically.

@maggiso good to hear you improved - you give me hope.

@MillStone can't believe they misdiagnosed your clot, what an unnecessary worry. Though absolutely fantastic that there's no clot and no damage though. Interesting also about the SOB/reflux theory.

@Tangledyarn good to hear from you, and glad there is still progress albeit slow. Sorry about your antibody test, but as you said you're not alone (mine was negative too). @Beforetoday there's been a lot of talk about this in previous threads. This video might help explain more (disclaimer- I haven't watched it myself yet but watched some of his other videos !!)

@Norugratsatall thank you for sharing- it brought a tear to my eye.

@fedupofbed sorry you're feeling so despondent. You sound so defeated. It's bloody hard isn't it?! Relentless for so long.... sending you and everyone else still fighting this thing....💐☕️💕

Sorry folks, the video was edited after I posted it (below) and that version is no longer available. Have asked for that post to be deleted. Huge apologies! 😳

Thank you so much @Norugratsatall . It's very difficult. Like many of us here I'm usually quite proactive - in life/ work if there's a problem I'll work to find a solution. But no matter how much research I do, how many therapies, meds or supplements I try, how much money I spend, nothing seems to make a difference.

I know that I have to remain calm, positive and patient, and that as maggiso said time and rest are the best healers. Rather than mentally racing around, worrying and trying to find cures. But I struggle!

@MillStone What symptoms have you still got?

@IpanemaSunshine welcome but sorry you're still suffering all these months later. I followed (but didn't comment) on the early lungs threads. They were a comfort to me at that time as I didn't know what was happening to me!

@Moodgie Hi, hope you’re okay.

Horrible SOB, occasional heart palpitations, reflux, chest and lung pain, back ache, aching calves.

That said from week 12 to now (14) the fatigue lifted and a lot of strength has returned. I feel mentally and physically stronger but I have no stamina and everything results in SOB.

I’m doing a lot more each day - Small walks, short gentle yoga, little craft projects and the odd hour of work... but I’m resting a lot in between and being careful not to over do it.

I’m making progress but resigned myself a while ago that this will take a while. That acceptance and also Mindfulness has helped to cope with this.

@fedupofbed I am sorry and thank you for using up your precious energy n sending that link - the Run DMC videos are so useful and clear.