Long covid

[Corilee2806]

Hi all, just wanted to see if anyone else had any experiences with this. Went to a wedding in mid July where loads of the guests got covid - I was really ill for a few weeks after with the worst cold ever, sore throat, aches and pains etc but I continuously tested negative on LFT. Then also got gastro symptoms, vomiting, nausea, loss of appetite and migraine - was ill for about a fortnight all in all. Now I can’t seem to stay healthy and every time I try to do something like a days work or commuting, or a day out with my kids it sends me straight back to bed with extreme fatigue, nausea and headache and other symptoms like aches in legs, pins and needles, tinnitus and lots of things that sound like long covid.

could it be be this? Even though I didn’t test positive? I wish I’d done a PCR now but didn’t see the point at the time. If it’s not, then I don’t know what’s wrong, although I guess could just be a post viral illness. I’m having blood tests but wanted to see what others thought. About to be alone with my one and three year old for a week while my OH is away and don’t know how I’m going to cope! 😢

Bless your heart, completely relate! I'm a month on from when I tested positive, and would say the illness itself lasted about two weeks, really awful, all the usual symptoms. I finally tested negative on I think day 11/12 and despite still feeling weak, fatigued ect I thought well, atleast I'm on the mend now... alas I've never got properly better, I have moments when I think it's going the right way then I'm hit with it again. Like last night my cough got worse during the night and I woke up with far less energy than yesterday (and I still didnt have much then) I had a cry today, it's just depressing isnt it. Other people seem to have it for a few days then go back to normal. Sorry you're poorly too xxx

It does sound like you probably did have it, although no guarantee. My friend had lots of gastro symptoms and also tested negative, but I'm pretty sure he had it as I saw him and a few days later I was ill.
My heart genuinely goes out to you looking after little ones, I'm deffo in no state to do that xxx

I have had long Covid for over two years, after being hospitalised with the original Covid strain in March 2020.
It does gradually improve, OP, but progress is glacially slow. I have picked up from being breathless at 100 yards, and too fatigued to do my own shopping or gardening, to now being able to walk about 4 miles on a good day and 1 mile on a bad day. I can now mow my own lawn.
There is no cure, but the way to manage it is to find out what your current exercise limit is - the distance you can walk without triggering a relapse of the fatigue. Stick to that limit for a week or two, then increase it by a tiny amount - say 10% - and see what happens. Build up slowly over months.
If you have a big and tiring day coming up - maybe attending an all day event, or travelling long distance- aim for several early nights and daytime naps in the week leading up to it.
If you are in employment, get signed off by your GP, rest as much as possible, and plan a very slow phased return via part time hours.
After 29 months, I’d say I’m back to about 70% of my original fitness, and still hoping for more to come.

Thank you for your replies. I’m really hoping that whatever it is, it’s going to be weeks rather than months of recovery before I’m back to normal! It’s so hard with little ones and work and juggling it all, is it normal to get signed off work? Some days if I don’t overdo it I feel fairly normal but my commute is 1.5 hours each way so doesn’t really feel doable at the moment, working from home isn’t too bad though. I already work part time 3 days and with the children on the other days (obviously far more tiring!)

will the blood tests I’m having show if I did have covid? What’s the treatment? Realise there’s no simple solution here and imagine it’s going to involve a lot of rest until whatever it is goes away.

@Babdoc so sorry to hear you’ve been suffering with this so long, it sounds really hard. You’ve obviously learned a lot - thank you for sharing your wisdom. Glad to hear things are slowly improving for you, it must have been a real journey.

@Corilee2806 this definitely sounds like long covid / post covid. @Babdoc is giving you good advice. I too have had LC for 2.5 years but I am now 90% recovered than goodness. It took a very very long time to get to 60-70% but I am hopeful if you are careful and pace from now you will improve faster. I assume you are vaccinated, I think this is helping shorten Long Covid / reduce severity a little from what I am seeing in friends but I know if feels terrible.

Reduce everything as much as you can. Learn about pacing. Do as Babdoc suggests about limiting everything. Farm out all responsibilities that you can do (order easy food, babysitters etc) so that you can mange, reduce work and work from home if you can do. Get yourself on an even keel to avoid the awful relapse / constant up and down illness and then very very slowly build back up. I am truly sorry for all those getting LC now. There are millions of us with it and still suffering since March 2020 and it is utterly shit and not being publicised enough how life limiting and awful it is.

In terms of testing, you could do an antibody test? I have done plenty and used a brand called Panodyne recently which does a natural antibody finger prick test for £8 or so. That will tell you if you have had it and produced antibodies. Although remember that not everyone does produce them but i think most do. You can also do more pricey ones which you send off for testing but be sure they test for natural antibodies and not just vaccine induced ones.

Thanks @popsickle555 - yes I have had all my vaccines so I’m hoping that will help if it is long covid. So sorry to hear you’ve suffered for so long too, it must have been so much worse pre vaccine. You have my utmost respect and compassion. I have to say I knew very little about it until I started looking into it this week. Even if it’s not long covid and it’s a post viral illness it’s very similar - either way I wouldn’t wish it on anyone!

I will look into antibody tests. So I had my first definite bout of covid this march, so would it show antibodies from that time? I tested positive that time, but when I was ill this time with very similar symptoms in mid July, I didn’t ever test positive on an LFT.

Oh that makes me think you’ve had it again. I’ve just had it (3 weeks ago) tested negative on lateral flows but a positive PCR (lucky I’m on a study and they requested me to do one that week when Ill). It was the same as April (first week of April I had it confirmed lateral flows and PCR positive) but this recent time it only lasted only 5 days not 10 and nausea / stomach ache bit was worse plus ongoing gastric ‘stuff’ this time. I also took antivirals which I assume stopped it faster.

my antibody test just before this reinfection was a faint positive. Did one again last week and much darker pink so I assume I’ve just topped them up again!

as you say even if it’s not covid this time it could have activated your body (whatever virus it was) to have these symptoms so the advice will still be the same. If you have any heart issues / nerve pains etc I would go to GP and request testing. I’ve had all that and had myocarditis but with reinfections it didn’t return. Hopefully you’ve not got that and it’s ‘just’ fatigue related.

@popsickle555 I wish I’d done a PCR now just to know for sure but didn’t expect to feel this way - last time I felt really rough but then felt back to normal afterwards- or so I thought. I have felt really knackered for a while now but I just put it down to having two small children - so hard to tell the difference! But my energy levels were definitely way higher before my holiday when I got ill or I don’t think I would have been able to go on it. The wedding I was at was a super spreader event, over 20 known cases so I’d be amazed if it wasn’t, also this time I had a lot more gastro issues, I didn’t really first time. A lot more people seem to be reporting that!

No heart pains or nerve issues luckily. It’s mainly exhaustion, aches, nausea and headaches. When I tell people I think they just hear ‘I’m tired’ and roll their eyes a bit, it’s very difficult to explain!