Is this still (long) covid?

[User287264]

Had covid in May. Still get weird days where I just feel not quite all there. A bit tired, bit light headed, tired, just not quite right. I got these days fairly often after covid but still get them now and again. Had a particularly bad day yesterday.

I've spoken to the doctor a few times who just says "post-viral" and doesn't seem very interested. Couldn't get past the receptionist yesterday even to get on the list for a phone consultation.

I'm just a bit fed up.

I don't think there is much doctors can do about post viral issues. I suspect you just have to get on with it the best you can and hope it passes soon.

My post viral fatigue left me breathless and bedbound, GP not interested. Who knows, but I hope you have less bad days soon.

I know there's not much they can do, I guess I want to be sure that it is post-viral, long covid, whatever. And not something else. They were very quick to write me off as long covid, even the receptionist today. So I guess my symptoms must be pretty obvious.

I'm fed up. My friend who had covid at the same time as me is running a half marathon next weekend

I'm in a similar boat OP though only had Covid early July. Unfortunately it has hit me badly and I'm having more bad days than good. I can't yet work which is incredibly frustrating, my work needs a lot of brain power and intense concentration and I can barely even read words on a screen without them all mixing up, I just can't focus and can't process in my usual way. I keep getting a fast heartbeat, feeling faint and massive weakness I can barely describe. I'm CEV so did mention it to my usual consultant and he said it was long covid and could last days, weeks or months or more, there's no way of knowing. I'm so down and fed up with it. I'm having to use a wheelchair mostly now. I do need to go and see my GP but afraid I'll get the same response; it does seem people with LC are just being fobbed off. I'm so sorry that is happening to you.

I'm the same since March, though the bad days are getting less frequent but seem to be linked to doing a lot the previous day. GP also keeps just saying post viral but did run blood tests around the 3 month mark, after they came back normal he just pointed me at the Covid recovery website I'd already found.

Have you had any bloods done?

No, no-one has ever offered. What should I i be asking for?

There's a standard set for LC (via my GP), although unfortunately some of these don't pick up microclotting etc. Also as you said, you want to rule other stuff out too - iron etc. Might be worth a trawl on some of the LC boards on Twitter where people who have been going through the hoops longer can advise. I think we are behind other countries such as Germany in what we offer to both detect and treat. Also, try to know trigger points. Mine is exercise - anything more than a short, slow walk screws me up more, so that's great for the waistline! I'm trying to take comfort from knowing some people do improve. There's a former colleague who is now back at work a day or two a week (he is on some prescribed antihistamine but don't know what else) and another triathlon guy that is able to do some cycling now. I can dig out the form for you tomorrow if helpful.

Can anyone recommend any particular twitter threads or anything? If I search I'm never sure who is knowledgeable and who is scaremongering.

And what is microclotting? We have family history of blood clots and stroke, I had to have some tests before being allowed to use hormonal contraception. I'm not panicking but maybe that is worth investigating further? My gp is just so disinterested.

I'm not going to google microclotting but I think I will try the gp again.

Thank you, these few replies have taken me more seriously than anyone in my real life so far.

And yes a trigger point definitely seems to be exercise. Anything that raises my heart rate. I can do big heavy weights but I can't run.

I know exactly this this particular flare up happened. I was doing some cardio in the gym, I was feeling better than I have in ages, I worked a bit harder because I was feeling so good. Right up to the moment when I felt a bit light headed. And all downhill from there. Its so annoying because I never quite know when I'm going to have done too much.

Yes there's definitely something about exercise. I've now reached a point where I can do a reasonable amount of walking so long as I do it slowly and there aren't too many hills, but anything that gets my heart rate up and I feel dizzy and can't breathe. GP listened to my chest and said it was clear so definitely not asthma.

I’ve had long covid for 18 months I would say stay away from exercising for now and look into pacing. I still have many symptoms and get very tired but the overwhelming tiredness has lessened. There are plenty of Twitter accounts to follow and suggestions for supplements etc that I took intially. Long covid doc is a good one. I have had a full round of blood tests and was eventually found to be B12 deficient which has given me neuropathic pain so definitely fight for the blood tests. Originally I also had an ECG and chest X-ray to test for anything more sinister so there is definitely things your GP could be doing.

OP would you be in a position to go direct to a private cardiologist if you can't get anywhere with the GP? My aunt had LC like yours and it turned out to have damaged her heart, they didn't pick it up until she saw a cardiologist as it kept being dismissed as a lung problem as she was short of breath. They say confidently her heart will recover in time but she is strictly off any cardio exercise and is doing breathing exercises daily which she says are helping. I suspect also time and rest are helping, which can't be hurried.

I had pneumonia in 2015 and was in hospital for 2 weeks, and even with a "full recovery" I was very delicate for over a year afterwards - constant exhaustion, heart thumping out of my chest climbing a flight of stairs, fainting, dizziness, days in bed or on the sofa etc. I am fine these days (just ran 5k!) but I remember that awful fear that I would never be well again, it took so much time to convalesce.

I really feel for you and everyone on this thread and hope time is a healer for all