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.

@Lightsabre great to hear you're going skating - what a dream! It will do you some good mentally too. Hopefully you're at the end stages now.

Thanks. I have to take DS anyway, it's our thing and he's crazy with excitement to go back. I'm also just dying to see all my skate friends. So I'm going to skate too. The only problem is, I think we all know that how this illness works is to let you do physical activity during a recovery period and feel absolutely wonderful. Then come and get you that night. So I'm going to enjoy it. But also be utterly terrified about tomorrow!!!

Hello campers. Here's a cheering study for those of us with negative antibody tests:

Coronavirus: Immunity may be more widespread than tests suggest www.bbc.co.uk/news/health-53248660

@Nat6999 your DS sounds similar to my DD (12). Though she was never very ‘ill’ she has been unwell since we all (99% sure) had the virus back in March. She’s had two hospital visits and tests/X-ray all clear - like your DS they didn’t test her for Covid the first time because they were restricting them to patients being admitted at that point. They did test her a month ago but unsurprisingly that was negative. I’m at a bit of a loss and also worry about ME - she has occasional better days but tends to get carried away and then suffers for days afterwards . It’s very hard to try and moderate her activity when she is so happy to be feeling normal and she is also aware of this but understandable is reluctant to stop. I’m now considering acupuncture for her. I have found very few other parents with DCs affected this way, other than @KatySun and another poster called Scampersaur. It’s so hard dealing with a regularly tearful child who ‘just wants to feel better’...head fog is a huge issue for her, I’m so glad we won’t have to think about school at all for a while.

@MillStone, good luck with your tests - they've been a lot more thorough than mine. I'm sure I also have a clot somewhere.

@sleepwhenidie, Longshot and others also have kids that have been affected exactly like yours. The advice is to keep them well rested to avoid ME developing.

Thanks Lightsabre

@Lightsabre How come you’re convinced you have a blood clot?

I’m getting paranoid again about clots. I’ve had a D-dimer test which said negative but have read they’re not always reliable?
My arms, hands and legs are full of pale blue veins when I’ve never really noticed veins before. Did anyone else have this, does it need further investigating?

Evening all, hope everyone is doing OK.
I've hit the 4 month mark now. I'm starting to believe that this is probably CFS for me now. It's just not really shifting in any meaningful way, after a relapse about 5 weeks ago I seem to have just stabilised. I can work for up to 4 hours a day if I'm lying down, typing etc, but less if on video calls or needing to concentrate very hard.
I'm hardly leaving the house.
As for good news, my symptoms have mainly subsided - having phased in and out and lessened in intensity I'm hopeful that they are on the way out now. I had frequent shortness of breath, ear aches, nausea, ear ringing, sore throat.
Now it's just overwhelming and constant fatigue. It's been with me the whole way through and it's still here.

Oh forgot chest pains, cough and low grade temps as well. They come back briefly and intermittently except less strong and last less time, I've noticed.

Hi @TiddleTaddleTat good news that your symptoms are slowly disappearing. Hope your energy levels now start to return to normal too. People are saying it’s a long road.

Hi all! I've just come through a three day relapse, hopefully that's it (I won't hold my breath) but just to say to those with children, my two are still having symptoms after all this time. I took 9dd to paediatrician as she has raised eosinophils and vitamin B12. Unfortunately my daughter (who has lots of asd traits) decided she didn't want to play and told the dr she's fine. So dr said it could be her eczema causing raised eosinophils, no idea about B12, nausea and stomach aches from the antibiotics she had 4 months ago, and tiredness from lack of exercise.

I'm clearly now looking like a hysterical mother with munchausens by proxy

My son (also 9) had what we thought was covid 19 just after DD and I - he had a fever and gastro-intestinal symptoms, and then stomach pains for weeks. They have only just disappeared. When I spoke to the doctor they said this was likely a result of the coronavirus but did not offer any particular advice except that they were not concerned that it was anything more serious 🤷🏻‍♀️

Katysun and godhelpusall our GP has been very sympathetic with DD but when we have been referred on the attitude has been very similar - 'come back if she gets a lot worse'... to be fair I can see why they think she isn't too bad - she doesn't present as a sick child, but she is far from the same DD I had before March. It's very hard to find a balance between letting her languish in her room and getting her to come for a walk/play a bit outside at the risk of overdoing it.

I spoke again to GP yesterday and she is going to speak to paeds and come back to me but she did mention the possibility of CFS arising from PVFS (though she did say this is rare in children). Also raised the subject of the possible impact of feeling unwell for so long on her mental health and whether she might need support in that respect (again we agreed that this may be jumping ahead a bit). She should get back to me tomorrow or Monday.

Hey guys. So I went skating last night. Skated for over 2.30 hours. I stopped more often than usual for a drink. And instead of water I made an electrolyte drink with lemon, ginger, sodium and potassium. I occasionally had trouble catching my breath but could if I focussed, so it was more of a bad habit/lack of fitness thing. As soon as I finished up I realised I had a sore throat, but I think it is more of a drinking lemon water with some thrush blisters and shouting over the music thing than a relapse thing. My breathing and chest are fine today. I'm paying a lot of attention to my throat in case it changes more to the signs of a relapse but for now I'm hopeful!

@TiddleTaddleTat, can you get signed off work for a while? I think properly resting and just little steps forward might be the way to go. I'm still very fatigued and can't imagine getting through a normal working day plus everything else either at the moment. I wouldn't be able to do a full shop in a supermarket for example.

@alittleprivacy, glad you had a good skating session - I think you must be really on the mend now. Hopefully you won't feel any ill effects but maybe rest for a few days.

@TiddleTaddleTat your experience seems to be mirroring mine somewhat. I'm glad your symptoms are slowly easing but sorry to struggling on with the fatigue. 😞💐

@sleepwhenidie sorry to hear about your DD too. This must be a huge worry for you. My sister has a daughter your age and I know she fears her getting it after seeing what I have been through for the past 3.5 months.

@alittleprivacy great to hear you've been skating! Hope you enjoyed it. Hopefully it's done you the world of good - mentally too!

I'm in week 15 and, after several weeks of feeling like I was in recovery, have relapsed again. I'm sitting here feeling so weak I don't even have the energy to get up to go to the loo, I'm nauseous, pounding headache and had an awful sleepless night due to tinnitus and just general weird Covid insomnia. The brain fog is off the scale too - worried about keeping my job. It's only part time but I love it and would be devastated if I lost it due to this virus!

It started Monday when I woke up with a cough, aches and pains and chest tightness. Which was a lovely memento for Day 100.

Hope everyone else is plodding on ok. 💐

Please excuse typos. 😞

Have you had blood tests @Norugratsatall? I wonder if you've picked up a 'normal ' virus or is it more of the same? Hopefully your employers are understanding and let you rest when you need to.

My 12 year old (15 weeks ill) seems worse again this week and we can’t think what could have caused a relapse. He is better than he was in April and May, but I’m finding it hard to believe recovery is taking so long in a child who barely missed a day of Primary School.

*Scampersaur@ I am right now trying to persuade DD to go into school for half an hour with pastoral lead and a few classmates, it isn't compulsory but I think it would be good for her. Term ends today. She is normally so sociable and she is kneeling next to my chair crying that she doesn't feel well enough to do this or to go for a picnic with her classmates tomorrow .

@Lightsabre yes two hospital visits - two lots of bloods done. All normal. It feels like more of the same to be honest. It doesn't feel like a new infection.

@sleepwhenidie your poor daughter! I kind of know exactly how she feels! After months and months of feeling ill, it just wiped you of your energy and enthusiasm for anything. I love doing art, singing and playing piano, sewing - I have t done any of it for months now. Am sure it will come back and it will for your DD too. 💐

Thanks norugratsatall so sorry you are still here too

@sleepwhenidie, that sounds so tough for you both. I think my son is embarrassed for his friends to see him looking so grey and feeble and unable to run around. He does have times chatting to them over the PS4 where he sounds totally himself and energetic, so I think they would be surprised to see him too. While it’s obviously great that so few children have been affected in this way, I feel like it makes his symptoms sound less credible to others somehow. Luckily he now has a kind and interested paediatrician, but we won’t see him again for a couple of months and there is not much advice they can actually offer at the moment anyway.

@Norugratsatall @Lightsabre Yes it is pretty debilitating with this level of fatigue. I was signed off work for a period then returned on phased return (still on that). I will get some time off soon, it's a busy period at the moment and unfortunately not easy for me to be properly signed off without quite significant long term implications, plus I wouldn't be paid and I'm the main breadwinner. So I think the stress of being signed off might not be worth it, iyswim? I'm trying to pace myself and avoid boom and bust, doing ok at that now. I've started to just accept the fatigue and how to manage it.

I understand @TiddleTaddleTat - I'm heading for half pay soon myself so getting anxious as well. I'm hoping that I'll get some kind of treatment that will allow me to return to work on 'light duties' and phased. I can't take the risk of going back fully as, if I go sick again within two years, they'll start capability proceedings probably. So it's best for me to have one much longer period of sickness and get as well as I can within that. (I think we were on the moving threads together! Hope you've settled in well!).