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.

Hello everyone and sorry we're all still going through this.

Yes there does seem to be a diverse range of symptoms, though lots of common themes. Someone on Facebook asked everyone to list their top 3 and of the almost 200 replies everything that's been mentioned on this thread cropped up.

I'm just beginning week 18 and sadly have plateaued out now. But then I never really had many 'recovery' phases as many of you have done. It's been quite relentless. My worst symptoms are racing heart, SOB, 'adrenaline' feeling of agitation and unproductive sleep/insomnia. But the biggest symptom is extreme fatigue - to the point that 4 months down the line I'm still unable to do more than bath or go up and downstairs. I'm still unable to work (luckily I've been furloughed ). And also lucky to have a very supportive husband, family and friends. Poor husband is now on his knees though.

I'm just wondering if anyone else has this level of fatigue, and if so, is it all the time or intermittent?

@TiddleTaddleTat
@KatySun
That’s really interesting about the deep sleep. I also bought a fitness watch and I’ve been watching this. I get around 2 hours of deep sleep per night which is fine, but what I’ve noticed is that on nights where I’ve felt ever so slightly better and had a glass of wine, the deep sleep goes right down to 30-1hr. I’ve always known that fact about alcohol and sleep quality but never quite believed it. Now I seem to have a really strong reaction to it (it’s bringing up my neck glands whenever I try it) so it’s definitely having an inflammatory effect. So.... with great reluctance I’ve had zero alcohol for two weeks now and I’ve been sleeping really well.

Still struggling with symptoms though and big yes to the calf pain!! I didn’t realise this was a symptom. I actually tore one of the calf muscles this got so bad a few weeks back...

@fedupofbed, have you discussed the fatigue with the GP? I was very fatigued in the beginning and still become easily tired out doing tasks but it has improved. Dr Sarah Myhill has videos on the link between post viral and chronic fatigue on You Tube. Basically, the advice is to not push through post viral fatigue - just continue to rest until you feel stronger.

CFS Ability Scale - a rough measure of how disabled you are

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Contents
1
Related Tests
2
Related Articles
3
References
The fatigue in CFS is both mental and physical. For some sufferers, the physical is the greatest burden and for others, the mental fatigue is most troublesome. This scale was developed by Dr David Bell [1] as a clinically useful way to assess response to treatment - it combines physical and mental acitivity with levels of wellness. This is not entirely satisfactory because different people suffer in different ways but it does give an idea of the level of disability.

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.
90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.
80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.
70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.
60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.
50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.
40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.
30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.
20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.
10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.
0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Please, note that "desk work” includes everyday tasks such as sitting at a table to eat or read.
Related Tests
• Mitochondrial Function Profile. This is a very useful test for people wishing to claim benefits because it gives us an objective measure of fatigue. This was demonstrated in the paper I co-authored jointly with Dr John McLaren Howard of Acumen and Prof Norman Booth of Oxford University and published in the International Journal of Clinical and Experimental Medicine. The full text of the paper can be accessed here: Chronic Fatigue Syndrome and Mitochondrial Dysfunction.
Related Articles
• CFS - The Central Cause: Mitochondrial Failure
References
1 ↑ David S Bell. ‘The Doctor’s Guide to Chronic Fatigue Syndrome’; Addison-Wesley Publishing Company, Reading, Mass.

Sarah Myhill Limited :: Registered in England and Wales :: Registration No. 4545198
Registered Office: Upper Weston, Llangunllo, Knighton, Powys, Wales LD7 1SL, UK. Tel 01547 550331 | Fax 01547 55033

Sorry, copy didn't come out well but I've found this scale useful over the past few months to measure progress.

@KatySun My testing just now was 72, stood up fairly slowly and carefully-up to 110, I also have no idea if it was like this before as didn’t check pulse before. It quickly goes back down now when stood up still, but really doesn’t sound great to shoot up bu over 30 just by standing 🤷‍♀️

Recent article in The Guardian (yesterday I think) investigating ‘Long termers’ three schools of thought-reinfection (hopefully not) inflammation to the body following the illness (hoping is just this) or damage to the organs in the body (hopefully not this either)
Making me very worried as parents over in two weeks, could I infect them?! I never thought so, but it’s all so up in the air, does anyone know at all??

@MillStone Sorry how many weeks are you again? I forget everyones 🙈I had the falling asleep thing weeks ago for around a week, before I knew what was going on. I would be just about to nod off into a lovely sleep and it’s almost like something woke me back up again (I posted about it on here) it could happen two-three times before I eventually fell asleep. Hoping it passes quickly for you, hoping it’s not a recurrent symptom too. Have read of others having it on the Fb group, it’s definitely a covid thing by the look of it.

@fedupofbed Sorry you’re still experiencing such bad fatigue, I have days where I barely want to move, but mine seems to come in the form of the body aches etc. I also have the adrenaline type feeling occasionally. Had it last night and couldn’t sleep even though very tired, it’s teally odd, seems to push you with extra energy and then a crash, really hoping this fatigue passes for you 💐

Thank you for all the useful info @Lightsabre and glad you're showing improvement. I suppose at my sickest I was 0-10 but even now I'm probably only 20 😢. The one time I tried to 'pace' or push, depending how you look at it (shuffled up and down the garden a few times while monitoring heart rate) I had a big relapse. So since then, apart from medical appointments, I've not done much at all apart from rest.

I'm in regular contact with my GP but feel like at 4 months I've reached a tipping point. I had another blood test this morning for autoimmune disorders (a previous test showed a marker). When the results are back, and depending what they are, I will be pushing for some more action/ referrals (CFS, dysautonomia, vasculitis??).

@Whatnext2018 thanks for your good wishes. I find that my hands and feet are particularly achey - being on my phone all the time probably doesn't help me!

@fedupofbed I am also debilitated by fatigue. I feel like I have plateaued at week 16, and probably around 20-30 on that CFS scale now. I suppose there has been progress in the sense that I am no longer at 10... still, I am struggling to give up the idea that I 'should' be able to return to my previous level of health. I'm feeling a sense of grief about what has changed, which I wonder if many of us are going through as this continues to last beyond what we expected?

@Whatnext2018 an increase of heart rate above 30 bpm on standing is a signal of what is called POTS - often seen post viral. Worth a google, sorry can't link on phone atm.

Ah here is the info on POTS www.nhs.uk/conditions/postural-tachycardia-syndrome/

I mentioned palpitations on standing to my GP (among other things) and was prescribed beta blockers, I'm not sure if he was thinking about POTS or anxiety, either way they have helped a great deal

@TiddleTaddleTat Thanks 🙏 yes I’ve read about it, I wasn’t sure whether to go to the gp about it or wait until it hopefully passes, does it do us any harm? I’ve noticed it used to stay high when I was stood for a bit, but now drops right down after it’s gone up, I’m hoping is an improvement 🤷‍♀️

Is anyone taking anything that’s made a difference. I’ve just started Cod liver oil for inflammation, already on vit C with zinc and Vit D. Has anyone used Melatonin? I’ve read a few things about it but am reluctant to just keep guessing with these things, in case it’s overloadinh the body.

Hey @Whatnext2018 yesterday was my wk13 since I fell ill-ill. I started with an ear ache and SOB about 4 days before that but didn’t think much of it.

My (uneducated) theory is that maybe we are now mechanically okay and don’t have inflammation or physical problems which are leading to SOB (except of course any underlying serious trauma — blood clots etc)

I wonder if instead the SOB is our own making / perception due to the nervous system / body being out of alignment.

This study / trial discusses and concludes this issue in regards to CFS and dyspnea:

www.ncbi.nlm.nih.gov/pmc/articles/PMC4209305/

@TiddleTaddleTat 💐 sorry you're still so incapacitated too. I've also experienced a real sense of grief over the last couple of weeks as I struggle to adjust to my situation, and also the impact it's having on my family. I'm working on accepting and being at peace with the way things are whilst still being proactive and positive. I strongly believe that staying mentally strong will at the very least help manage our symptoms, if not help our bodies heal.

Managing my anxiety is a real challenge. I've discovered EFT tapping, which I was a bit skeptical about at first, but has really helped. I'm using an app called the Tapping Solution.

After the last few days, today so far I feel almost normal. This is the weirdest thing.

Wow, that's great @Moodgie hope it continues for you. Take it easy though!

I have a mouth and throat full of sores again. I woke up today to all my chest pain gone but the sores on my mouth and throat have just worsened throughout the day. Thinking about it, I feel like I’m riding through a cycle I’ve gone through at least 3, maybe 4 times these last few months. I think the mouth/throat sores are the final part. If I’m right, I’ll be symptom free soon. Then after a break, they’ll start again.

It’s like this has half lives. Recover, have a milder version, recover, have a milder version, and on and on until it peters out.

@alittleprivacy Yes, it seems a bit like that. Fingers crossed it will peter out like that!

@Moodgie that is great to hear. Long may it last!

I've been looking up some dietary advice for CFS as have realised my diet probably isn't helping. Ordered a few supplements and am going to try and remove sugar and grains as much as possible. Realise I'd begin relying on sugar and caffeine highs again. The problem is having the energy (and time) to prepare healthy foods. I'm still working full time from home and this as well as basic self care is leaving me floored, but I think diet is really important in helping recovery.

Anyone eat a paleo or similar diet and see a benefit? And have any tips for managing this with very low energy and fatigue?! DH has basic cooking skills and limited patience...

I got CFS/ME whilst following a great healthy diet plan, no one was more surprised than me several years later when I found it again....it was advertised as for people with CFS!

Lost voice again yesterday. Week 14 nearly over. Looking forward to having my bloods re-taken later this week. Will I get an antibody result by the end of week 15...?

@Moodgie Yes, it seems a bit like that. Fingers crossed it will peter out like that!

There was a video doing the rounds with some American doctor/virologist speculating that the virus might be like that. At the time I saw it I didn't think it was a likely theory (probably because I was certainly hoping it wouldn't be like that) but now I'm thinking it's possible he was right.

Found the video, from about 5 minutes in.

www.wsj.com/video/why-fully-recovering-from-coronavirus-might-take-longer-than-expected/985A51E7-D3C9-4375-BC3B-9E5E2E03691E.html

I also had a look through my old posts and it seems to be as I remembered. The chest inflammation clears. I get what feels like bad oral thrush. I feel better. I get some chest inflammation again. The worst of my shortness of breath seemed to clear up in early May. So it's been costochondritis, mild pleurisy pain and what I later realised was GERD, sore throats, some ear pain and congestion since then. I'm really interested to see if I get a few good days soon. (Because I want some good days!!!!!!!) And if I do, I will undoubtedly start to assume I'm better even knowing a crash was likely!

A lot of us seem to be getting these throat/oesophageal problems @alittleprivacy. Are you on steroids/asthma inhalers?

It hurts me to shout or sing or even talk at length still. Having said that, I was able to talk with my neighbours today for 20 minutes whilst stood up. I couldn't do that easily 6 weeks ago but there is discomfort. I wonder if we will end up having endoscopies and, if we do, what will they discover.

I hope they don't discover anything! I think my burning is windpipe rather than esophagus. It's hard to tell after so many sensations over the last 4 months.

GP called. Chest Xray booked.

I'm scared about what they'll find.

A lot of us seem to be getting these throat/oesophageal problems @alittleprivacy. Are you on steroids/asthma inhalers?

No but I've been taking a high dose of pantaprozole and apparently PPIs can cause oral and oesophageal thrush. I'm going to stop/cut back on them and take a lacto-acidophilus supplement for a few days and see if that helps. It should help with both the thrush and reflux, so worth a shot, especially as it may also be beneficial for inflammation. I'm feeling fine apart from the blisters/sores. So hopefully I can knock them on the head and have a bit of normality again for a bit.

I had oral thrush at the beginning after taking Amoxicillin so then had a course of Nystan - my throat issues seem to develop after the antibiotics. I was also on Omeprazole for a few weeks but I didn't see any improvement so came off and just use Gaviscon now. I drink Kefir every day as well and have hot water with grated fresh ginger and lemon each night which provides some relief in my throat.