Long COVID - after this long??

[GidgetGirl]

Hi all,

I think I’m just looking for a little reassurance. I had covid back in mid March - not a horrendous case, but I felt pretty rubbish and posted about it here at the time. I was more sofa-bound than bed-bound, but had quite the array of symptoms.

Since then I’ve had what I presume is long covid. I feel fine for a week or two, then start feeling rubbish again for a few days - my cough comes back, along with a low grade fever and general fatigue.

These episodes have become more infrequent as the months have passed, but I’m feeling horrible today. Same old cough has come back, along with chest discomfort and tightness. I don’t normally get the chest pain like this. I’m sure it’s because I’ve had three pretty active days cycling about and doing much more exercise than usual, but the fear that it’s NEW covid rather than faithful old long covid is always there.

So, has anyone experienced long covid relapses after as long as 9.5/10 months? Google usually only gives examples of people having long covid cor 3 to 6 months..

I had suspected Covid in March and am still unwell , I’m just recovering from yet another relapse where my symptoms have felt very much like March , so yes it’s entire possible but probably a good idea to test to rule out reinfection

My brother also had covid in March, and he is just the same as you two. He begins to feel a lot better and goes back to work, only to feel utterly shit again in no time.
He is not at work right now, and often goes to bed at 9.30 / 10pm.
Its a long time to feel like this, 10 months isn't it.

You may have chronic fatigue syndrome although I hope not

It feels relentless, I certainly have chronic fatigue, my limbs feel like they are burning just from simple housework tasks and I get swollen glands and sore throats . Still struggling with breathlessness as well

I had Covid in March. I have Long Covid (damage to heart causing palpitations, nausea, dizziness and also breathlessness) and also post-Covid fatigue. It is so frustrating - GP doesn't know what to do - just keep repeating blood tests.

I get the muscle pain too and sore throat/swollen glands

Have you been for testing when you get the symptoms again? Iirc if you’re more than 3 months post covid you should get tested again. I’m in the 3 month window but have a resurgence of the loss of taste and a weird smell bothering me and affecting my normal ability to smell. I am assuming it’s some form of long covid. Annoying.

I was having long COVID symptoms right up until I caught COVID again a couple of weeks ago. So if you think it feels like a new infection, do get tested. But as you know, it's also perfectly possible it's a relapse, esp if you've overdone it recently.

I’m not quite the same, I had it in August and was asymptomatic apart from a runny nose. I only found out I had it as work tested everyone before we all started together on a new project that involves a lot of mixing. At the time I felt grand, was overly tired for about a week and felt my chest tight on a handful of occasions but genuinely if I hadn’t been tested I don’t think I’d have even registered it as it was so minimal. The last two weeks though I’ve felt rotten, tired, tight wheezy chest, especially at night. I’ve been tested and it’s not an active covid infection but I’m wondering if it’s a consequence of my original infection in August.

I’ve a friend in a similar position. They’ve just been sent for heart checks too.

I was on those threads in March.

I thought I'd got away with long covid after I'd been ill for over a month. I have found since that on 4 occasions I have had repeat symptoms for 3-5 days, almost always after more exercise than a stroll to town eg over 10k steps. Each time the Zoe app picks up the need for a test, but I never seem to get them in time for "test within 5 days", if you include post both ways. I do stay home though.

Sounds like long covid particularly given that you have been exercising / on the go. Post exertional malaise seen in lots of long covid cases. Lots of athletes affected. Hope you feel better soon.

I hate to break it to you, but if it leads to CFS/ME, this could be lifelong.

I have a diagnosis of CFS/ME but was missed off any official medical guidance/protection/lists. I was more or less in remission and well enough to work full time for the first time in a few years. I suspect I had very mild Covid in March, which led to a spring and summer of fatigue and brain fog again. Think being in bed from midnight to 11 a.m. and still needing a nap on the sofa in the day time, after completing some house work, shopping, or a walk. I feel a bit better again, with the help of a 500% Vitamin D daily supplement, and managing my holidays to effectively work part-time (I'm in the middle of a spell of 5 weeks where I've only worked 3 or 4 days a week, for example).

My gp has not been helpful at all, I'm afraid, so in my case, it's not something I expect the NHS to be able to help me at all.

Long covid is really just post viral fatigue syndrome, it's been around forever it's nothing new.

It absolutely can last for ages and be very debilitating and some people do get dx with CFS (used to be called ME).

On the other hand some people do make a full recovery, it's important not to push yourself too hard as this can be counter productive. Very hard though when you have work/family! Are you in a position to take some extended time off?

Yes the NHS struggle with this as there's no medical solution really, although I know the govt are about to throw money into psychology services for psychological support for 'long COVID'. This will probably be CBT/ACT/mindfulness based.

@JudyGemstone maybe you should publish something because according to my consultant long COVID can be all sorts of things. For my neighbour its permanent lung damage, he doesnt have CFS. For me its damage or inflammation to my sensory nerves - my skin burns constantly. Is this CFS?

It's post viral syndrome yes. This doesn't always translate to CFS

Thanks for the replies all. The fatigue I’m getting is actually very minimal - my recurring symptoms are mainly low grade fever and cough/chest congestion. It’s frustrating because I feel normal most of the time, then out of the blue I’ll be hit with the same old symptoms again. Usually after having a busy few days of physical exertion.

I haven’t actually spoken to my GP about it, but I think I finally should..

@SpringTime2020

I had Covid in March. I have Long Covid (damage to heart causing palpitations, nausea, dizziness and also breathlessness) and also post-Covid fatigue. It is so frustrating - GP doesn't know what to do - just keep repeating blood tests.

Hi @SpringTime2020 this sounds like me..same symptoms and GP doesn't really know what to do. Have you had an ecg?

@SpringTime2020

I had Covid in March. I have Long Covid (damage to heart causing palpitations, nausea, dizziness and also breathlessness) and also post-Covid fatigue. It is so frustrating - GP doesn't know what to do - just keep repeating blood tests.

Hi @SpringTime2020
Was this diagnosed by any specific test? I have same symptoms and GP has referred for ecg, just wondering if they will be able to tell

Ask for a referral to a Long Covid Clinic or Service (as per NICE guidelines).

This is still all relatively new but other post-viral syndromes can last up to 2 years with people still recovering from them.

@TheDrsDocMartens

I’ve a friend in a similar position. They’ve just been sent for heart checks too.

How did the heart tests go? I've been referred for heart tests and pretty anxious