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COVID long-termers 14 weeks+

982 replies

isitorisntit · 27/06/2020 08:41

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.

OP posts:
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8
MillStone · 24/07/2020 10:51

@Moodgie sorry, how frustrating.

Moodgie · 24/07/2020 11:10

@MillStone Called 111 too and they can’t really offer any advice.

AndsLee · 24/07/2020 11:58

@Moodgie Flowers

Ernieshere · 24/07/2020 12:01

Hi everyone,

Has anyones Tinnitus gone yet?

Mine is still screaming loud 24/7 Sad

Moodgie · 24/07/2020 12:09

@AndsLee Thank you.

alittleprivacy · 24/07/2020 12:10

@Kitcat122 although I am generally feeling much better my shortness of breath is no better. I feel like my lungs are too small.

Ok, I'm going to tentatively put this out there as my experience. I felt right from the end of my initial viral illness that there was an extremely fine line to be walked between rest and exercise. While too much exercise was a sure fire way to trigger a relapse, too much rest caused a slow but sure deterioration. While anyone experiencing CFS symptoms needs rest as an absolute priority, if your symptoms are mainly inflammatory, as mine were, the right exercise can help and be necessary every bit as much as the wrong exercise is damaging.

I made many, many, many mistakes along the way with this. But once I got a reasonable handle on what helped and what didn't, as I stepped up my exercise my breathing got better. The muscles in your diaphragm are exceptionally susceptible to disuse atrophy. Too much rest can very much make breathing harder and shallower. I found that walks were absolutely essential and I gradually picked up my distance and pace, focussing on good breathing as I did. Then I rested big time afterwards. There were days I had to take as a day of rest but if I rested for too many days, my breathing deteriorated regardless. I've also found that my upper back muscles have become incredibly tense due to months of pain from breathing. So I've been focussing on relaxing those which has also helped massively.

I'm not completely better. I have mild costochondritis and esophagitis, especially in my neck. But I'm able to manage those despite being back to high activity levels where I'm averaging at least 2-3 hours of cardio and 1 hour of strength and/or stretching every day. The more I exercise now the stronger my breathing becomes and the more I'm able to rebuild my chest muscles, the less limiting the costo pain becomes. There are still a lot of things I avoid or build up very tentatively. A lot of the stretching exercises I do aggravate the inflammation in my throat, so I build them up slowly, so my neck muscles can lengthen and strengthen and take the strain off my oesophagus. My chest and back are weak and tense, so carefully building them is taking strain off my sternum. It's a fine line to increase the strength of the muscles around the inflammation without triggering a major flare up of the inflammation itself. But if I don't exercise all the muscles that have atrophied through my illness, that atrophy is definitely responsible for many of the lingering symptoms.

It's very, very tough going through this alone with complete trial and error, and I have pushed too hard and triggered many relapses. But I once I got a handle of the balance my recovery accelerated beyond my wildest dreams. And again, anyone with CFS symptoms needs rest more than anything because exercise has the potential to cause a relapse far, far worse than any of the problems caused by atrophy. But anyone not experiencing fatigue might very well improve with the right mix of targeted exercise and rest.

TiddleTaddleTat · 24/07/2020 12:10

@Ernieshere as it happens I haven't noticed the tinnitus yet today, but has been ever present . Sometimes I only notice it when I am at rest and there is silence

MillStone · 24/07/2020 12:44

@Ernieshere my tinnitus came on about 3 weeks ago, now it’s pretty constant but I don’t really notice it unless it’s very quiet.

Fishflakes · 24/07/2020 12:57

All the best to everyone who’s still ill. Flowers
I am in another relapse after only doing unavoidable and normal things lately: normal childcare, workIng from home in a sedentary job and doing necessary normal exercise only like walking to the shop and buying milk. I have made a GP appointment because I want this apparently open-ended returning cycle of relapse on my records in case they do start to be able to give us any advice or treatment.

Yes to still having tinnitus and pricking nerve endings, exhaustion, headache, earache and aching neck glands, brain fog, feeling a bit sick.

Fishflakes · 24/07/2020 13:06

Moodgie so sorry for your loss Flowers

Kitcat122 · 24/07/2020 13:17

@alittleprivacy thank you for taking the time to write your experience. I have been wondering this myself because I have no fatigue. Apart from some chest pains and sob I feel good. I have broken up for school holidays so I am going to start very gently trying some gentle exercise and walking and see how I go. I do feel mine symptoms are inflammation. Thank you xx

Moodgie · 24/07/2020 13:24

@Fishflakes Thank you! Xx

alittleprivacy · 24/07/2020 13:42

@Kitcat122 Apart from some chest pains and sob I feel good. I have broken up for school holidays so I am going to start very gently trying some gentle exercise and walking and see how I go. I do feel mine symptoms are inflammation.

Good luck with it. The one thing I'd say is be careful with yoga/pilates. They seem like such a gentle kind of exercise but I think they were the main thing that kept making me relapse as so much of the movements put pressure on the chest/sternum and oesophagus. Downward dog and plank moves were something that I really, really needed to work up to and even now I often avoid them if they are part of a routine I'm doing and I know that part of my body needs rest. Even forward stretches like pikes or anything that twists your torso or requires you to elongate the front of your neck need care. Mad as it sounds, I can play contact sports more easily than I can do some 'gentle' flexibility routines.

And if you currently have a sore throat/oesophagus it's worth assessing if you have any thrush and taking a targeted probiotic for a bit. I'm also taking ginger and tumeric as they act as both an anti-inflammatory and GERD inhibitor. If you have a sore throat that feels more like a strain around your throat tryptophan can help with that. We can't buy it in Ireland but a warm milk contains tryptophan and I find it very helpful.

alittleprivacy · 24/07/2020 13:44

I also have etoflamm gel from my doctor and I use it on my sternum. I can go a few days without needing it and then end up needing it for a few days. But I'm definitely becoming increasingly less dependant on it.

Monty6 · 24/07/2020 14:20

@KatySun - thanks for asking after my sons. They all still have slightly elevated temperatures and fatigue. 2 of them (age 7) also have headaches, sore throat, chills and sore tummy. They are much less active than they would normally be. This might be what they need for now, it is just so hard to know. We are now around the 19 week mark, give or take a few days. How are things in your family?

TiddleTaddleTat · 24/07/2020 14:34

Have just had the results from my ECG and blood tests (FBC, liver / kidney / thyroid function, and haemoglobin), all satisfactory/normal.
If no significant improvement by next month I will need to speak with my Gp about a possible CFS/ME diagnosis needed for occupational health reasons

Norugratsatall · 24/07/2020 15:00

@Moodgie so sorry for your loss. 💐

@Ernieshere. Re the tinnitus yes! It did virtually disappear in late May and June but returned at the end of June. It doesn't seem to be as screamy but it's pretty constant and affecting my ability to sleep and work. I'm exhausted. 😞 also, am feeling much much better and this is the only symptom I need to get rid of! Did you have tinnitus before Covid?

Kitcat122 · 24/07/2020 16:18

@alittleprivacy thank you. Interesting as I tried a light yoga a while back and relapsed with chest pain. I think last time I tried exercise (2 months ago now). I definitely went too hard too fast. Baby steps this time.

Moodgie · 24/07/2020 16:30

@Thank you @Norugratsatall xx

MillStone · 24/07/2020 16:33

@TiddleTaddleTat good news on your results!

@Kitcat122 @LetsBeSensible I’d been getting on well for 2 weeks with some gentle yoga. In the days running up to my current relapse (wknd) I’d introduced a small amount of plank, cobra and down dog. The back pain and chest pain has been terrible. Thanks for the pointers, when I restart I will take your advice.

fedupofbed · 24/07/2020 17:42

@Moodgie I'm very sorry for your loss. And also sorry that you're unable to get any medical advice.

@TiddleTaddleTat glad that you're results were okay - how healthy some of us look on paper!!

Sending love to everyone still struggling/ relapsing. I relapsed yesterday too (why does this always happen after I post even the smallest improvement 🤦🏼‍♀️). My period came so putting it down to that. I'm just plugging away with my rest, supplements and acupuncture!

Ernieshere · 24/07/2020 18:08

I never suffered from Tinnitus prior to this, I still feel like the virus is in me, Im aching so much.

The beginning of this week, all I could do was get out of bed and lay on the sofa, then back to bed, no appetite at all, but it was leading up to my period Hmm

Then I sleep 11pm-1am, then Im awake until 05.30am. Its so draining. I have been very very emotional this week, laying in bed crying my eyes out. Tiredness, frustration and resentment.

I had CFS after Glandular Fever, that took 4 years of my life. I worked all through it, apart from 4 weeks sick, so it was my own stupid fault, but I felt pressured to return to work then.

Im so scared of losing more time to yet another bastard infection.

Flowers for everyone.

KatySun · 24/07/2020 20:59

Millstone so funny that you should mention the heart pounding before relapse - I noticed this happening for the first time in a good while before I had this current relapse but did not make the connection. It makes sense to think of it as the sum of the parts - over the last month, I have started doing our weekly food shop again as well which I initially found exhausting but now manage more easily. Last week or so I decided that DS needed to go out twice a day for exercise/park/scooter so as not to spend too much time on screens. So it is probably a combination of things of which driving was the final straw! I am also trying to work from home.

I am impressed alittleprivacy both at the amount of cardio you are doing and the fact that you can articulate your management of the balance of rest and exercise so well. I feel like I am just muddling through. My doctor did say that there are services opening up for post-covid and she also said graded exercise therapy would be part of this. I am not sure if that would help, I need to think about it - only if I actually had a reduction in workload to be able to focus on what I am supposed to be doing to recover.

moodgie I am sorry for your loss Flowers. I am also sorry that the doctor and 111 were not able to advise more. When I was thinking about this earlier, my thought make sure your travel insurance is valid! Not sure if EHIC cards still are, if it is a European country. Regards the flight, I agree with the poster who suggested compression stockings, plenty of water etc. I would also say try for an aisle seat so you can get up regularly and walk around.

monty6 I am sorry your sons are not better yet, that is a concern. DS is doing much better, still some mild stomach pains and occasional headaches but building up his exercise and out on his bike again. DD is still struggling with fatigue and Costochondritis so I guess she is more of a concern. The GP did not seem too worried - basically just said painkillers... that said, she is meeting up with one of her friends this weekend so that will do her good.

Lightsabre I hope the tired and achey feeling lifts.

Ernieshere I am sorry you are still struggling and so unwell. It sounds very draining and I am not surprised you are upset. I had a lot of insomnia over June - I tend to listen to Tara Brach talks and meditations, she has a very soothing voice. But insomnia is awful and combined with tinnitus, I am not surprised you are feeling down Flowers

This is a long post, sorry. Flowers all around. We will get there.

Ernieshere · 24/07/2020 21:02

Thank you everyone, best wishes to all Wine

Im going to look up Tara Brach, that sounds fab.

KatySun · 24/07/2020 21:18

www.tarabrach.com/sleep/

I started listening to her meditations and talks during a very stressful period in my life. So I find her instantly calming now. But the sleep practices are also nice, among other talks on her website.

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