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 everyone,

This is encouraging news!!
That's what we all need, thank you so much for sharing.

I'd say I don't have the CFS/ME symptoms at all. I think mine fit more with post viral:

• Pain underarms (no longer in groin)
• Dry mouth/sore tongue (realising it's probably mouth thrush, which fits...)
• Dizzy spells (which I am linking to tinnitus)
• Low heart rate (but I may have always had that)

@TiddleTaddleTat I’ve been referred and the criteria at my trust is 4 months from onset.

I suspect it is from when you fell ill the 1st time. Unless someone from the medical profession suggests you might have been ill twice.

Wk17 here today and currently emerging from an awful 5 day relapse. It’s felt like 2 months ago all over again. So much fatigue, so much back pain...

Hope all are feeling bright today

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.

Neither did I but as my activity levels have sky-rocketed throughout July to the point where I'm averaging hours of intense levels of exercise every day and my diet has gone back to it's normal healthy levels, (with almost no sugar because of the thrush). I was surprised that I gained over half a stone in that time. I decided to look up every supplement I was taking and lo and behold, acidophilus is found to be linked to weight gain, often significant.

I ordered so L Gasseri probiotic yesterday, so when it arrives I'm going to try and lower the acidophilus while adding the gasseri. Gasseri shows some help with thrush and is linked to weight loss. So hopefully it should even out the gain from the acidophilus and if I'm really lucky be able to replace it completely!

Has anyone come off the esomeprazole? If so, how did that work out?

I’m not thinking of my fatigue as CFS/ME as it’s not stopping me doing anything, it’s only physical fatigue, not mental fatigue and it’s only 4 months since the start of my symptoms. I’m really hoping it’s just post-viral and will clear up in the next few months.

@Egghead68 Do you ever have the relapse type symptoms?

@MillStone Sorry about the relapse, think I’m having one too, I’m either 17 or 18 weeks I think.

@alittleprivacy So amazing that you can exercise for hours per day 👏

@Whatnext2018 not really. I get occasional sore throats. Sinus issues, fast heart rate and chest pain but very mild and lasting less than a day. The fatigue comes and goes according to how much I’ve been overdoing the exercise. No actual relapses since day 79 (now day 126).

@MillStone ah ok, I think I'll need to talk this through with my GP.

At 20 weeks I am still largely bedridden but with 2-3 hours of light activity in the house per day - cooking, housework, etc.

I was a healthy mid 30s fit person with no underlying illnesses.

@Moodgie Bloomin' oral thrush! Breathing through dust? We bloomin' have been!

I should add, the 2-3 hours I am able to be active per day involves rests every 10 minutes or so.

@TiddleTaddleTat Yes me too. I was doing better until last weekend. Pottering for most of the day with some very light yoga... but I think I overdid it and now I’m back to sofa resting for most of the day.

I’m 38 and was in peak fitness before this. A bit underweight... historically too... which has been suggested could be part of the issue.

For what it’s worth I was referred To CFS by physiotherapists.

When I asked my Infectious Diseases consultant ( same dept as CFS) a few weeks ago If they thought I was in CFS territory, the reply I got was that the term CFS is arbitrary and that I have PVF because i know the cause of the fatigue. I find this oddly reassuring even if it doesn’t count for much.

I think...how the disease manifests has nothing to do with genes or weight or blood type. I think it's purely driven by immune system. How you are effected is down to what your immune system has been exposed to in the past. That's my theory...

@Egghead68 I think I mirror you. I have been waiting for round 3 of symptoms, but nothing. Or...if there has been it's been too mild to see the pattern. Monthly passed by with some fairly minor niggles. That's the word...I have niggles. I just want this 24 hour ECG done and if it comes back ok, I'm going to close the book on this. I hope to anyway...

@MillStone Yes that is reassuring , I suppose it's the association between CFS and long term impairment - I have read up on it and learnt that this is not necessarily true at all, and that lots of people do recover, and that good management is key in that. Still, it has been saddening to hear about how many of those with CFS have felt their illness has been dismissed by the medical establishment. Graded exercise therapy and CBT being the most recommended treatments. I have my issues with both.

@TiddleTaddleTat oh yes the thought of long term impairment terrifies me. Cycling and running is my life.

The physios seemed very sensitive to the issue of over doing it and stressed that treatment would be very slow and long term — though I still hold a quiet distrust after reading the horror stories regarding GET.

My Initial advice was to minimise aerobic activity and concentrate on anaerobic in order to build muscle to facilitate better oxygenation / stamina.

My latest relapse was at seventeen weeks. I think (hope? ) at just over eighteen weeks now, I am coming out of it. whatnext I know what you mean about feeling like being infected all over again - I was saying to DD it felt like having it again, but that was hardly possible.

I think my relapses do last about ten days but I only have a few days between them (not been keeping track but the length between is getting longer, it used to be a few hours or a day of feeling a bit better).

I don’t think I have CFS really, it is more an imprint of the symptoms which recur to a greater or lesser extent.

@AndsLee yes niggles and varying fatigue.

@MillStone did your GP refer to the infectious diseases and physio?
Wonder if I can ask about this.
Is anaerobic stretching , weights etc?
I did a few days of very very gentle yoga, all on my back, then had a relapse. scared of that now.

@Egghead68 I managed a full week at work last week. Pretty delighted with that considering at one point I didn't know if that would be possible...

@TiddleTaddleTat yes I’m avoiding anything to do with my back at the moment. I relapsed and aggravated it after being too ambitious on the mat. The pain has been terrible since.

Light Yoga and stretching was recommended, as was gentle weights. Arms and legs... just a couple of light weights each day for a few weeks and then increase the very slowly.

I’m not sure on weight or duration because this was off the cuff advice until I’m assessed and advised (?).

@TiddleTaddleTat sorry forgot. My GP referred me to Infectious Diseases, who referred to Pulmonary and Physio. Physio referred me to CFS and MH. Still seeing Infectious Diseases as well.

@MillStone sounds good, I might try some very light weights on arms and legs. The message seems to be very very gradual, increasing over a period of weeks rather than days. Yes I think it was my back that the yoga got to - an old injury in my lower back that really flared up after some twisting exercises that I won't be trying again.

Has anyone had problems with calf pain?

I'm on day 1 000 000, well it feels like it. Its been 138 days. I've been hit with severe fatigue, can barely stay on my feet for a short period of time and yesterday and today have spent a great deal of time in bed. For 3 weeks now I've had a very sore right calf, it has increasingly got worse. Pins and needles in foot as well.

Why isnt there more help for people like us?