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.

@Moodgie sorry you are having to deal with so much whilst also suffering a loss x
@MillStone not sure what advice but thanks for the mention! I’ve been busy with a real-life matter and it needs doing but it is making me ill. I ditched all my good pacing but I have a hard deadline to meet tomorrow and then I can recover and start again.
Hugs everyone

@fedupofbed @KatySun @LetsBeSensible
Thank you. I think I am staying here. The flight would be about 2.5 hours so relatively short but who knows what effect it would have, taking into account I am still not 100%. The worry is also may parents who I would be staying with and the risk that I or my son could bring something with us to them. I am heartbroken, but I think the safety of all us has to be taken into account. It is really tough and there is so much guilt in me.
I truly hate this virus.

please, please do not feel guilty. This virus has changed life as we know it. You have made an informed and considered decision and you will be there in thoughts. Be kind to yourself, bereavement is difficult enough without facing it in these circumstances. Maybe make some time on the day where you can have some quiet reflection on the person you have lost? You have made a difficult decision for the right reasons

@KatySun Thank you so much for these words. This group is just so amazing.

@Moodgie, i am very sorry for your loss. I think @KatySun put it very well. For what it is worth I think you have made the right decision. There are ways to connect with those also bereaved remotely and to find a way to reflect on the life of the one you have lost without the risk of flying. Wishing you all the best at this difficult time.

@Monty6 Thank you so much.
I’d love to meet you all in person - I don’t know what I’d do without this thread in the last few months.

@Moodgie I’m so sorry for your loss. Hope you are doing OK

@Moodgie So sorry for your loss 💐 you have to think of your own health and family too, it’s so very hard.

I’ve had my parents here for a couple of weeks and touch wood they seem fine son unlikely I have passed anything on.
I’ve mostly felt ok when they’ve been here, aching muscles and odd things everyday, but definitely copeable.
Then, yesterday I started to feel really ill, headache, v achey, hot and really weak. It passes after a few hours but not great today either and dp is complaing of tiredness, was arms and legs and sob.
We seem to hit with our bad symptoms at a similar time, although dp’s don’t last long and is mainly tiredness and weakness.
From noting down symptoms, I’ve realized I go on average, ten ‘Better’ days and ten less good days..the first few days usually being the worst.
Has anyone else noticed similar patterns? What’s would/could be the reason for this?

@Whatnext2018 sorry to hear you are feeling very unwell again.
I have cycles as well and what I'm still not sure about is whether these are induced by mental or physical exertion, stress, etc. or if they are as you describe on a regular time cycle.
Unfortunately I think research into covid is still in its infancy and so it is not yet known whether the pattern you describe is due to a boom and bust cycle (as in CFS) or an ongoing viral infection or immune response.,

Sorry for the typos!

Thanks @TiddleTaddleTat It’s hard to pinpoint isn’t it? I have noticed things become worse if I’m rushing around or stressed etc, but it tends to pass quickly. But I have noted a fairly distinct 10-12 day pattern, it feels viral as the sore throat, glands, headache etc is back.
Trying to remember to keep in mind, in comparison to those frightening days back in mid May when symptoms really flared up, the relapses are becoming less, just at a snails pace.

@Whatnext2018, my bigger dips tend to happen roughly every 4 weeks. They have been at about 4, 8, 12 and 16 weeks. My husband is similar, but slightly ahead of me. Anecdotally there seem to be a lot of people crashing at e.g. 16 weeks. It would be good to understand if it is a real pattern and if so what is causing it. If it was just women It could be linked to the menstrual cycle. My dips happen after ovulation, others have mentioned worsening symptoms in the week before their period. Curiously though several men have mentioned a similar pattern of roughly monthly crashes, so it could be unrelated.

@Egghead68 @Whatnext2018 Thank you.

@Monty6 @Whatnext2018 that's true, many report a dip at 8-10 weeks (this was my first relapse and still the worst I've felt)
Interesting as to what it could be linked to.
Agree that there appears to be a relationship with the menstrual cycle.
I understand that Immunity and hormones are closely linked. I suppose the more we understand covid the more of a holistic approach to all bodily systems is needed s

@Monty6 @TiddleTaddleTat Yes, my very worst was around 8/9 weeks.
I definitely have noticed I’m bad just before and a couple of days into period, but my last one also coincided within my worse days pattern..so I’m not sure.
Then again I’m guessing I’m around ovulation now and two weeks later, period, so that does make sense. Not sure why the worse days could last up to 10 days though (although it’s generally it’s the worst the first few days)
My oh seemed to be tired and weak around 3 weekends ago (i think..!) so hard to keep track of his too. We were both really wiped out that weekend as I remember us both lying on the sofa with our toddler crawling all over us and we ordered delivery pizza, we were shattered.

@Monty6@TiddleTaddleTat

Yes, my first relapse was at 8 weeks just as I thought I might be getting there.
I agree about snails pace. Anyone have a good day, followed by definite slump again? Sending love and support to all.

Ok... Here's a weird one...

The first few weeks I felt like there was something stuck in my throat. Then, the next few weeks it felt like the irritation moved to my soft palette/roof of mouth/entrance to nasal cavity. Cue: breathing through dust.

It now seems to have moved further along to the tip of my tongue, front roof of mouth. Breathing through dust sensation abading. This ties in with starting to take esomeprazole. So...the breathing thing must have been GERD, right?

Call me daft, but it feels like "it"s sorting itself oot". Has anyone else experienced this?

Hi
Just thought I would dip in and up date. Completed two weeks of full time school and from last Monday now on six weeks break. I am ok and able to function fairly normally. Some days are so much harder than others and I still get symptoms. For me times of extreme tiredness and I will sleep over 12 hours at a time. Sore throat still there at times and the cough now starting to lessen but still keeps coming back when I least expect it with a feeling of dryness in my throat My main problem has been aching joints and a really sore tongue a bit like thrush. My teeth and gums hurt. When I have been under stress I notice I ache in my armpits, have a sore throat and have a light headed feeling as well as the some pain in my chest. This is a bit if a worry as I suffer from cardiac spasms and take medication for this but my doctor seems to think I am managing this. On the plus side have been able to shop, do housework and go about life in a almost normal manner but still need to rest especially early in the evening when I feel really tired. Starting to walk more frequently round our local park not at a pace but a gentle stroll and not feel like I am becoming breathless so a big improvement.

Having been off this thread for a week and coming back tonight I sense a feeling of people moving forward even at a slow pace that you might not see for yourselves. It has taken me a long time to get to this point ( from the 16th March) but I feel I am turning the corner now. My anxiety which I suffered dreadfully from is lessening but I now have a different view on how I want to conduct my life that means that I am cutting down my huge work load and looking at my work / home life balance. so pleased now to see that we are being recognised as long termers and the symptoms are being published
Wishing you all a peaceful night and a continued improvement in your health. You will all get there for some of us it just takes more time than others.

@Meercatmama Sounds exactly like my situation minus the cough...

@Meercatmama Sounds like me also, minus the cough and tongue, I seem to still often have the dizziness a fair amount and stinging eyes.
I get the aches under the arms too.

Sounding like me too @Meercatmama (I’m functioning pretty normally but with variable fatigue and other occasional mild symptoms). So glad you are doing OK and that there is a general sense of moving forward. I am hopeful that we will all get there in the end.

@Meercatmama a really sore tongue a bit like thrush.

It very possibly is thrush. I still get that unless I take L-acidophilus, the probiotic that is best for fighting thrush. With the acidophilus it's managed and fairly symptom free. But last week I had a coke and I could feel it creep back. I'm avoiding sugary things because sugar feeds the fungus. A few days ago it felt fine so I decided to stop taking the acidophilus, as it's expensive and it makes you gain/retain weight. The thrush came back in about 48 hours. So I took a few doses yesterday and it's pretty much gone again. At it's worst I'm sure I had it all the way down my oesophagus, up my throat and all over the back of my mouth. So I'd rather take the acidophilus and carry a few extra kilos for a few more weeks/months than go back to what was almost debilitatingly painful thrush.

A few people on the Slack group have definitely written about oral thrush like symptoms too. So it definitely seems to be a thing with this. I had been taking proton pump inhibitors regularly for GERD and they trigger oesophageal thrush, so I'm assuming that's part of why I had it so bad. But I was experiencing the white cracked tongue and blistery sore throat before those, so I guess they just worsened what was already an issue.

Ahh...oral thrush. Of course...

The mouth discomfort definitely seems to be related to PPI drugs...

I have a question for those whose main symptoms now are in line with CFS/ME, I think there are some posters that already had this diagnosis...

When CFS is diagnosed is the onset of the original infection (if identifiable) used as the starting point for the 4/6 months of symptoms before a diagnosis is made?

As I felt recovered between weeks 2 and 8, I am wondering if it makes more sense to count from week 8 in terms of how long the fatigue has lasted. On the other hand, if I can be provided a CFS diagnosis now then it will help with work related adjustments.

I'm on week 20 and hoping desperately that this doesn't remain longer term for me. I'm doing as much as I can now (I think) in terms of resting as much as possible within the limits of daily living.

Morning all! Day 135 and I've just been out for a little shuffle. Well, C25K wk1 run2 and I'm still alive and kicking! I can't lie and say I 'ran' but it was a definite jog albeit a shuffly jog. I did run 1 on Fri and 10k steps on a walk yesterday. It helps that I've not worked all week so had afternoon naps etc, no excessive talking/much stress.

I didn't know that acidophilus makes you gain/retain weight. We all take it daily, especially during covid recovery. That's not good news considering I have weight to lose and they're now linking it to covid.

I hope we're all finally on the mend 🙏

I’m just really perplexed how on my ‘Good days’ average 10 or so, I feel more myself, main symptoms are occasional tiredness and aching. But on my bad days, it’s like being infected once again, stinging eyes, dizziness, nausea, upset stomach, sneezing..this doesn’t match cfs..but i’d say the good days do, if that makes sense? I actually just feel like it comes back (albeit lesser in general each time) and my body is continuously fighting it..unlike anything ever presented before.