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.

@MillStone Sorry if you described in detail on previous thread but can’t find it...
Have you had pulmonary embolism and blood clots diagnosed?
I got presumed covid beginning March with every symptom under the sun. Better apart from slight ongoing breathlessness for a couple of weeks end Mar/ early April and then got very severe breathlessness (could only say two words between breaths, couldn’t walk at all, 111 sent me to A&E where triage nurse said Sorry, you can’t see a doctor as not blue round mouth) - ongoing for weeks - beginning May had visible blood clot in arm which moved during night from wrist to further up and had numb, white, very swollen and very cold hand. Also had pain in calf. Went to A&E again - they a) looked at my notes and apologised for my 8th Apr visit and said that on any other day I’d have been admitted but on that day they had no beds and were at full oxygen capacity; and b) said you need chest x-ray and blood tests. Chest x-ray showed quite severe lung infection. Blood tests showed high haemoglobin but normal D-dimer so they discounted blood clots. However, nearly two months on I still have the calf pain, the arm pain is back and my left hand goes numb a lot. D-dimer still normal so GP will not consider blood clots.
Sorry - long!!!
Did you have a D-dimer test I wondered?

@tiddletaddletat @alittleprivacy I also took it very easy on the recovery yet still relapsed, I don’t think those of you who “overdid” it heave necessarily made yourselves ill. I know also there is this theory being applied to CFS/ME that trying to power through fatigue causes long term damage. I don’t have any science to back up my opinion, but I think this is another version of blaming people for their illness. First it was “all in your head” then it was “you overdid it”.
Meanwhile, I believe actual biological or chemical problems are happening in our bodies. And it would be happening to some extent whether we rested or overdid it, were cheerful or depressed, fat or thin, old or young. The medical establishment hasn’t bothered to investigate that properly (to date) so instead we get these lazy accusations that because we reacted differently to others, we are at fault. We’ve got enough to deal with without lazy prejudices and blame.
Oooh that was a rant...it annoys me more than I realised!!!!
Don’t beat yourself up, and don’t let anyone else. Everything hurts enough to start with.

@MillStone I’ve had pain in my calves and legs on and off for around 8 weeks now. D-dimer clear and another test to see how fast my blood clots or something, all clear. I hope something hasn’t been missed.

@Housemusic welcome, the weeks guide is from the early days, people found they were getting similar symptoms at the same time as each other. But at 11 weeks, you’re long-term enough to join in for sure. It might help to read the last thread covid lungs eight weeks plus plus.
@oldbagface sorry you have suffered so much. Can you ask for an antibody test?
Any new type joiners may want to look c19recoveryawareness.com/

@MillStone I have the “covid calves” each morning, I heard stiff calf muscle is a common post viral problem.

@letsbesensible thak you very much, I will have a read of the 8 weeks plus thread.
I too have the tight calf muscle thing which came back this morning. I had it in day 6 or so too.
It's comforting to have a group that has the same symptoms because one of the worst parts of this virus is thinking it's not happening or me going mad.

@Whatnext2018 @LetsBeSensible thanks for the info. I wonder why it effects calves but no other leg muscles. I heard that calves help pump blood back to to the heart!?

@LurkingElle gosh, sorry to hear about your ordeal, it sounds terrible. I had the same Blue lips reply from a paramedic! You could press for a CT scan to looks for issues?

I didn’t have a D dimer (unless I had one in a run of hospital tests at 5wks, where they were looking for heart problems). I had many other blood tests since with my gp and was told that by combining the results of 3 or 4 tests they can eliminate a clot.

However... A clot has been found in one of my lungs following a CT scan a few weeks ago. This didn’t show on an X-ray.

On Tuesday I’m going for a Qscan to get a better look at it. I believe it’s like a CT scan but with different imaging.

Since the diagnoses 2 weeks ago I haven’t been given any medication.

I’ve also had tingling and numb arms on and off but I think this is nerve related!?

Hi @Housemusic, I have found this thread very comforting.

@kitcat122 thank you. I also worry about what my work will think. There seems to be two levels to this, very ill (As in hospitalised) and recovery after 2 weeks. Our level is a slightly hidden / unreported one, i.e, ongoing fatigue and symptoms, feeling better then not. Its comforting to know there are others and I hope we all make a full recovery soon.

@MillStone So if you’ve got a clot, they just leave you 🤷‍♀️Do you know, I feel with all this, that we’re wandering in the dark health wise and checking ourselves and having to be on top of it constantly, it’s scary.
What led to the ct scan of the chest?

Crazy that the blood tests wouldn’t pick up on clots

@MillStone Very interesting thank you! The D dimer is a blood test which I think they would have done at the same time as your other blood tests?
Hospital told me that small blood clots ‘aren’t too much of a worry’. But how do they know they won’t get bigger??
I think there are increasing numbers of stories of people with blood clots having misleadingly clear blood test results.
Also think that blood clots can cause numbness as press on nerves?

Hi! Just checking in.

@Whatnext2018 I don’t think they’re sure what to do, which is why I’m having another scan. I’ve been referred to a pulmonary specialist who I will see after the test and hopefully learn more then.

@LurkingElle yeah my GP said small clots are not too worrying too. I feel somewhat worried... but will wait and see.

Thanks for the info on numbness, that’s interesting. I know what you mean about possibly getting bigger and also developing new clots.

@LetsBeSensible Thank you, yes I did fall into the trap of blaming myself for getting a severe relapse. I did feel tired between week 1 and 10 but nowhere near as bad as now. Unfortunately having come down with covid before long term symptoms were known meant we were just expected to go back to normal almost right away.

That’s very worrying that the tests may not show clots, how are we supppsed to know if we have one and keep on top of it?
This is why I was wondering if anyone takes daily aspirin and if it will make a difference?

@MillStone Hoping it all goes ok for you, it mustn’t be cause for alarm as I’m guessing they would act more quickly.

To the poster who asked about ear ache, blocked ears etc.

This has been (along with chest and lung pain) my most consistent symptom from the off! As well as tinnitus which has nearly driven me to distraction ! I'm on Day 99 today and STILL having on/off blocked ears and tinnitus. I've been prescribed two lots of strong steroids in Feb March and April for blocked Eustachian tubes so really don't think they can still be blocked. It does get down.... and I won't feel fully recovered until my ears are normal again. 😞

Welcome @LurkingElle and @Housemusic, you'll find this thread a lot of support and comfort! It's just reassuring to know you aren't alone in experiencing these awful symptoms. 💐

Hello I seem to be in a few days but ok a few days not, I've had a return of the burning skin after weeks of not having it. Back to bed again to hopefully rest it away.

Hi I've name changed as I was doing another post.
Just a quick question, has anyone had headaches and tightness around the throat.
I've had an headache for 4 days then suddenly today my throat started getting tight as if something was wrapped around it. I then felt fine for a few hours but now the tightness is back. Thanks in advance.

@justmeg Yes to tightness.

Anyone has any idea if all this is maybe some kind of post-viral hypersensitivity? Is this even a thing? Like the airways just react to everything?

@Moodgie it's frightening the tightness, apart from these I've not had any other symptoms.

@justmeg How many weeks are you?

Can I ask, is anyone else a bit confused or muddled? I've tried to normal things this weekend but struggling a bit. I don't know if it's because I feel dizzy. For example, unpacked the food shopping on Friday but it took an hour and a half because I was in a muddle and couldn't figure where to put what in a timely manner. I got really frustrated with it and ended up crying. It's pathetic really.
It's like my brain isn't running smoothly like it should.
Has anyone else experienced this?

Housemusic had you already been out to get the shopping? That is quite a lot in itself. At eleven weeks, I found I could do things for maybe an hour or two and then I hit a wall of fatigue. This was mental and physical and I just had to lie down. So in your position, I would probably have chucked the perishables in the fridge and left it all until I was rested. My brain definitely could not process after a certain point. I have not actually been out to a supermarket yet - my oldest DD has been doing the shopping and putting it away.

My chest is sore again today

I have not really had the right throat feeling very much although I do know the symptom you mean, for me, it is more my chest.