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.

@LetsBeSensible, sorry not me but I do remember it - think it was on one of the Lungs 7 threads. Would love to know how those posters are getting on now.

Gah sorry @Lightsabre my Covid-brain 🥴

@Linus1972 was it you??

If I find myself energetic enough in the next few days/weeks I might gather the old threads together. More people are finding the threads coz they need help and if I could do a symptom list and list of links. Not promising though.

@Norugratsatall the only person who shared the video was my mum, bless her. But at least all my contacts saw it and now at least know that this is a thing. A media friend was very moved by the film and wanted more details.

@Meercatmama thank you for staying in touch and glad that you're still progressing. Sounds like you're still struggling a bit - hopefully you'll be able to have a complete recharge over the summer.

@fedupofbed
Thanks for the kind thoughts. So sorry that you and others on this thread are still struggling. This virus is awful and some people at work still think it is like flu. Since going back and meeting my class and talking to parents and colleagues it is surprising how many have been ill mostly in a less severe manner. one of my colleagues was ill for about three weeks before me and I was talking to her in a socially distanced way and the symptoms she described were very similar to ours and she reckons she is only just started to feel fully normal in the last week that would make her about 5 months from when she was first ill. She also had the waves of feeling better and then the symptoms returning. She still gets tired and has some aches but id very much improved. This gives me hope.

Am I right in thinking that suddenly feeling tired in the afternoon at 15 weeks is normal ?

@@SunshineCake I'm getting this!

@@SunshineCake I'm getting this!

@fedupofbed the film was mine! Well I'm part of the Longcovidsos team who have been working on it. Any media interest welcome as we want it to go far and wide.
It made me cry when i first saw it, just knowing how many people are experiencing this.

I was fifteen weeks at the weekend and fell asleep both on Saturday and Sunday afternoon Sunshine. I had more energy yesterday. Today I walked to the shop (about twenty minutes) for a few things and had to rest for almost an hour afterwards but did not sleep.

Chest pain is not going away. I am about a week and a half from my period. I am not sure if it has got worse as I entered the second half of my cycle but I don’t think so.

m.youtube.com/watch?v=IIeOoS_A4c8&feature=youtu.be

Oh my god that's really moving. It made me quite emotional watching it xx

Please share it- we need this message to be out there!!

Thank you @godhelpusall for all your hard work whilst you and your family are ill. It's a very powerful film.

@fedupofbed who was your media friend? Can you let them know we are happy to discuss anything!

@SunshineCake I think I was 15 weeks on Friday and wanted to sleep all afternoon at the weekend, how weird.
Current symptoms, the tight chest and under the armpits-but lower down, the usual aches in back, sometimes legs. The most concerning the last few weeks is the chest pain and top of ribs, when I didn’t really suffer from it much before 🤷‍♀️

@fedupofbed So sorry you’re still feeling so weak, I’ve also nearly bankrupted us witt supplements! Waiting on one delivery of Beta glucan and stopping after that!

@godhelpusall That was so emotional 💜

@Whatapickle78 I’m too scared to read that article 😬I think it would make me much worse. What would be checked at a neurological appointment though? I had a ct head scan around 6 weeks ago I think (because of all the strange tingling and dizziness symptoms etc -all clear)
Does the article say brain changes are permanent?

Hi - no it doesn’t say that - but like everything else in terms of Covid, the knowledge and evidence is evolving, we just don’t know enough at this stage as it’s only been a few months.

Yes I was worried about reading it too. But I think I found it validating more than anything else, as in, these quite particular symptoms are ‘not all in our head’ or ‘anxiety.’ The recommendation was for GPs to refer to neurology, which I think is really good. If you’ve had a clear CT scan - that’s great!

I think I’m keen to ask for one. I’d rather know what’s going on than imagine worse, as I’ve had quite persistent neurological symptoms.

@godhelpusall thank you so much for putting yourself out there and speaking up on our behalf. You are much much braver than me!! Wonderful film.

Fabulous film

@Whatapickle78 It might put your mind at ease to have one for sure. Mine was ok but was weeks ago, I’m paranoid things can change (this illness makes you like that doesn’t it)
I’m pretty bad with my memory the last couple of days, remembering where I’ve put things and taking a while for it to click, I’m really sharp like that usually.
What have your neurological symptoms been?

Has anyone had a sort of pain in the top of the throat/neck area slightly to the side of the front of the neck? That’s a new one for me.
Also noticed if I sing (songs to toddler etc) if I get even a little too enthusiastic or push myself, it hurts in my chest etc.

Just to counterbalance the Guardians Neurological article.

17 years ago I had a flu jab that resulted in terrible neurological symptoms.

I couldn’t stand up for more than a few minutes, walk for more than 20 yards, get out of bed more than twice a day for 15 minutes.
My body was on fire neurologically, legs and arms were numb, scalp prickling and creeping (the worst) Brain fog and exhaustion.

Tested for everything from Guillame barre to MS. MRI’d every year.

And yet I managed to recover neurologically 100%. albeit over 5ish years.

I did also end up with ME unfortunately as I never really gave myself a chance to recover fully, I just didn't understand what was happening.

I honestly don’t see the difference between then and now. Imagine if 10,000 people had what I had at the same time, there would have been terrible articles in the press.

Hoping this will help ease the anxiety of the unknown which is horrible and won't assist in our recoveries.

Just to counterbalance the Guardians Neurological article.

17 years ago I had a flu jab that resulted in terrible neurological symptoms.

I couldn’t stand up for more than a few minutes, walk for more than 20 yards, get out of bed more than twice a day for 15 minutes.
My body was on fire neurologically, legs and arms were numb, scalp prickling and creeping (the worst) Brain fog and exhaustion.

Tested for everything from Guillame barre to MS. MRI’d every year.

And yet I managed to recover neurologically 100%. albeit over 5ish years.

I did also end up with ME unfortunately as I never really gave myself a chance to recover fully, I just didn't understand what was happening.

I honestly don’t see the difference between then and now. Imagine if 10,000 people had what I had at the same time, there would have been terrible articles in the press.

Hoping this will help ease the anxiety of the unknown which is horrible and won't assist in our recoveries.

@stayathomegardener Thank you 🙏 it is very unnerving.
I do remember @Egghead68 saying weeks ago that neurological type symptoms are temporary (stumbling/mixing words up etc) hope I have that right! It was very reassuring as I was struggling with that a little