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.

Hi
Joints and leg muscles ache at various times also my arm muscles. Never after exercise but just I wake up with them and then the sore throat comes on and I feel really tired. Then about two or three hours later that disappears and my armpits really hurt It almost feels like my antibody system suddenly comes into play and then I start to feel better. I do get headaches but the mouth soreness has been a big part in the last week and light headiness as well. Cough is improving to the point I don't notice it and think when I cough Oh no it is back again
On a positive note feel so much better able to work and think clearly as well as do what I need to do physically. That for me is such an achievement .
Two months back if you see my posts I was being guided by my husband who as experienced some severe illnesses into the stages of dealing with your body after a severe illness. I am so glad I followed his advice of rest, good food and fresh air and going with what your body tells you because he had suffered severe illness in his childhood. This has helped me so much and has aided my recovery I believe and his as he is two weeks behind me despite being in the extremely vulnerable shielded category. He is good has sinus problems , the sore throat and complaining of it feels like my tonsils are infected and some SOB on exercise and at rest in the evenings Nothing major just niggles.
I hope you are all improving and have had a good day. I will touch base next week with an update. Try to stay positive but I know how difficult it can be as we are starting to improve even it is a tiny littlie amount, This group has been a life line to me in these difficult times and I want to continue to be here to help others as well as the original members through this

Tootsey not wishing to be alarmist, but have you spoken to a doctor about your leg, just to rule out anything serious like DVT? I had sore legs and feet early on and I still have them now and then but it is both legs, not just one. I have got sore feet with pins and needle like feeling just now but I think this is because I have done more walking today - took DS to a bike track which was more hilly than I expected (although not sure what exactly I was expecting!). He was on his bike, I was walking. So I am very tired and achey this evening.

Meercatmama what you describe is how it goes with my chest pain - I wake up with it and at some point my upper back starts up too and then in the afternoon it disappears somewhat, and then re-surfaces in the evening but less so (whereas earlier on it was worse). Headaches are pretty much non-stop at the moment

But reflecting on what BeautifulPark said upthread, there is certainly improvement. Just slow and not linear. But there is no way I could have taken DS to the bike track even a month ago. I do wonder how it would have been at the outset if it had been clear that this was an illness where you could be ill for months and then take several more months to return to full fitness. Whereas what we thought was two weeks if you did not end up in hospital and maybe a week or two after that to recover. I remember reading six weeks recovery time for severe cases. I am at eighteen weeks now. No-one knew and I have to say I feel like (outside of the wonderful support on this thread) no-one really cares. So looked at that way, we are all doing amazingly well

Actually I could not have taken DS to the bike track last weekend, never mind a month ago!

Brilliant @AndsLee!

Sorry to everyone relapsing or bedbound at the moment Hope you have a better week this week.

Will try to check in next week too.

Hope

Hi, I haven't posted properly today but just wanted to echo what others have said over the last couple of days... A huge thank you to all of you lovely people for all your support on this thread. Both to those who are still struggling but have kind words for others, and those who make the effort to come back with words of comfort and positivity when they're in recovery.

I have felt so lost with this illness, especially in the early days when it was all so new and unknown. This thread has kept me grounded and given me so much support.

Love and strength to you all 🙏🏻 xx

@Egghead68 Hope indeed!

I'm going to touch base too. This group has indeed been invaluable.

Let's keep on keeping on...

all
This thread has made me feel a lot less alone with this utter shite of a virus or very slow post viral recovery or whatever it is. Good luck and get well soon to everyone.

@KatySun I think we’re at a similar point. I don’t go one day with zero symptoms, but there are definitely much better, more normal days in between the relapse ones.

@Tootsey11 I had lots of leg (mainly calf aches) for two weeks straight at the start of May. I still get it occasionally now and mainly in my right calf. I’ve had two D-dimer tests as I got so paranoid, both clear. If you are in bad pain I would just get the doctor to check it though, just to be on the safe side.

Echoing others sentiments, I am also very grateful for you all in this group. I definitely believe we’re all making improvements and that we will get there.
It has made me feel less crazy when I come on and see my symptoms are experienced by others and that I’m not losing my mind!
I think we’ve all come a long way. I was talking to my Mum about it all the other day and I stopped as I remrmbered times back in May/early June when I can’t even describe some of the things that were happening and how scared I felt, don’t want to go back there.
Let’s keep informing and supporting one another 💐
Thank you 🙏

I’m still to scared to try alcohol again, on the better days I sometimes wonder if a cold glass of wine would be nice. On the relapse days..i feel too ill to even think about it.
The last time I drank was Good Friday, one glass in the sun..that night I woke with the strangest fizzy feeling in my chest, red hot and pounding heart. At the time I had no idea and thought it was some kind of panic attack, I remember lying all night on the sofa watching travel videos of Thailand etc and trying to calm myself down, it was awful!
No idea if that would’ve happened anyway or if the booze aggravated things to that extent? Has anyone had similar if you’ve had a glass?

*Too scared

@Whatnext2018
I've had no booze at all...

But...

I haven't been able to eat bread until recently, and even then it ups the "breathing through dust" sensation. I know this isn't pleasant, but I have also been wondering what the bright white mucas is coming from my nasal cavity...

I now realise...it's oral thrush!!

I am guessing this is why my body isn't liking stuffs with yeast...

Day 136. Week 19. Back pain is increased and now keeping me up all night. Twinges and pains when lying still, when breathing deeply it’s hurts a bit and is a bit crackly towards the end. Phone Oximeter says all is well which I suppose is a plus. I’m at a loss what to do.

Runny nose and feeling cold. Gotta be a cold? Runny nose is not a symptom and at nearly 4 months since the start, it’s got to be just a cold?

@Tupperwaretowers have you had contact with your doctor? @Moodgie oh no! Not what you need 🌹

Want to echo others. This group has been a life line. I remember my relief all those months ago when I found other people with the same symptoms as me. Still daily you guys keep me going. 🙏😘

@Kitcat122 I spoke to the doctor last week and managed to get an actual appointment tomorrow. Spoke to them a few times previously but they’ve diagnosed as musculoskeletal over the phone. I’ve not been right since 14th March, 6 weeks off work, 2 of them in bed with a mystery ‘virus’, testing wasn’t available for anyone then. For a long time after I had random pains in my chest mainly the front, but this is all in my back/ribs. I feel there is no management of whatever this is. Hopefully something will come of tomorrow.

@tupperwaretowers sorry you’re suffering with your back. I’m week 17 and my back is hurting more than ever too. Do you know why yours is so bad, had you upped your activity recently? Ibuprofen seems to be the only thing that touches it.

@MillStone I’m not the most active at the best of times, went for a walk yesterday, 2 miles max a but hilly. The other week shifted a skip full of rubble and relandscaped the garden, Lifted 100kg railway sleepers with my husband but the after effects for days after were I felt like I was breathing through dust with that burn in my chest you get when you’ve sobbed your heart out IYKWIM. So it’s not as if I can’t do anything its the after effects really.

Hello everyone in my week 18
I seem to be getting better and better!
I can have a glass or wine with food, I can wear a bra as long as it’s on the loosest hook and I go up a back size.
I am doing an average of 2500 steps a day, I still got breathless and shaky unless I stop for rests.
I’m still on beta blockers, I’ve still got underarm and chest pain, I still get hot skin. But it all seems to be losing its intensity. I can also walk up the stairs at a normal speed.
I only get the head buzz when I’m hungry or tired now, and it doesn’t affect me the way it used to.

I never thought I’d get this far, I now believe at some point, I will get back to normal.

@Crayfishforyou that's great that you're slowly recovering. I think time is the greatest healer for all of us but it's just so painfully slow.

@tupperwaretowers I hope your appointment goes well tomorrow.

I'm coming through my latest period-related relapse but still up and down. Does anyone still get the jittery sort of 'fight or flight' sensation? That seems to be my greatest issue at the moment. During the relapse it was constant. Now it's okay when I'm resting but ramps up when I'm moving or after eating. It can also be set off by negative thinking and worry.

Sorry to hear about your loss @Moodgie.

Good news about your improvements @Crayfishforyou.

I've overdone it the last few days - too much socialising and had to travel to the Midlands to see very poorly parent. Back is really hurting again so back to paracetamol and ibuprofen. Hoping it will ease as I have a quiet week planned. No Lung ct scan feedback yet. My sick note ends on Friday so will have to ask for another 4 weeks.

@fedupofbed Is it the sort of anxious/excitable (but not in a good way) feeling? A bit like adrenaline? I had it when I was bad and have at the moment during this relapse or whatever it is. I’ve noticed when it comes back I don’t sleep properly and wake through the night, I also feel a bit anxious, it accompanied that shaky in the chest feeling too.
I always check my pulse as assume it must be faster, but it’s pretty normal,
It’s not the nicest feeling is it 😢

@Whatnext2018 that's exactly how it feels, you describe it perfectly. It's like I'm constantly on edge. And yes to the shaky chest too - it feels like my whole chest and left hand side is sensitised. It's not as bad as it was in the early days though when I was constantly jolted awake. I'm now thinking about anti-depressants again as that's the only thing I haven't tried.

I was speaking to my chiropractor about it today and we both think it's disfunction of the autonomic system. She suggested some cat cow stretches to improve flow down the spine. Last time I tried those as part of a gentle yoga routine I relapsed but I may have another gentle try tomorrow.

@Lightsabre I'm sorry your parent is ill and hope you manage catch up on rest this week.

Hi all! Good (well, sort of!) to see some of you old timers here. I'm just emerging from relapse number 356 after feeling fine for a good week. Hopefully it's improving although hard to stay positive when it knocks you off your feet again.
Been busy campaigning to get more people to notice us and there is stuff going on behind the scenes.