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.

I'm so sorry for all those whose children are still suffering, it really is heartbreaking.

@alittleprivacy wow so great you skated again. I hope you continue to improve.

@Norugratsatall @Lightsabre and @TiddleTaddleTat yes I'm another one with extreme fatigue. Even sitting up properly for any length of time exhausts me. It's difficult to know the best way to manage it. My symptoms have also plateaued out - left mainly with fatigue, fluctuating heart rate and SOB.

I've started a spreadsheet tracking symptoms, activity, meds/supplements, sleep, etc to try and make sense of things a bit more. Before I was just scribbling notes that I can barely even read now!

I have my first appointment with an acupuncturist/herbalist tomorrow. I've already had a detailed video meeting. I'm now nervous about the energy it will take to get there though (20 min car journey each way - DH will drive). Then I worry that I'm overthinking it and making things worse! I'll post back how it goes.

@fedupofbed yes I've been keeping a diary of how I feel since day 1. Looking back there doesn't seem to be a ' discernible pattern' as such - apart from the fact that I keep feeling as though I've turned a corner but it is ALWSYS a false dawn.

Good luck at the acupuncture/herbalist consultation. Please do let us know how you get on as I've been thinking about this myself. I've been following your posts and I do know you've had a dreadful time (worse than me) so I hope this proves useful to you! 💐

Thank you @Norugratsatall and sorry you're having such a hideous relapse. I hope it's short lived. I'm worried about keeping my part time job too - not been in since February!

@fedupofbed spreadsheet sounds like a good plan I love a good spreadsheet. I've just been noting symptoms down on my phone in notes , but it would be better if I recorded things like supplements diets activity and so on.
However I'm increasingly feeling that while it is possible to limit the severity of relapses by reducing activity, they don't always seem to precipitated by extra activity. Who knows. I could have got signed off fully since getting ill in March and maybe I would be fully better by now, but I'm simply not in a position to do that financially.
Today I probably pushed a bit too far trying to finish a piece of work. Result has been I'm knackered and the work still isn't finished.
It's so frustrating having half the level of energy and being able to work for half as long per day. Result is a quarter of output. It's unsustainable with my work. If this is long term I will be giving up an extremely hard fought career so am feeling glum about that.
In positive news though I am trying out some supplements , today I started taking CoQ10 200mg and will do that over a couple of weeks before adding in magnesium, then omega 3.
No idea if it will make a difference, I will report back!

@fedupofbed spreadsheet sounds like a good plan I love a good spreadsheet. I've just been noting symptoms down on my phone in notes , but it would be better if I recorded things like supplements diets activity and so on.
However I'm increasingly feeling that while it is possible to limit the severity of relapses by reducing activity, they don't always seem to precipitated by extra activity. Who knows. I could have got signed off fully since getting ill in March and maybe I would be fully better by now, but I'm simply not in a position to do that financially.
Today I probably pushed a bit too far trying to finish a piece of work. Result has been I'm knackered and the work still isn't finished.
It's so frustrating having half the level of energy and being able to work for half as long per day. Result is a quarter of output. It's unsustainable with my work. If this is long term I will be giving up an extremely hard fought career so am feeling glum about that.
In positive news though I am trying out some supplements , today I started taking CoQ10 200mg and will do that over a couple of weeks before adding in magnesium, then omega 3.
No idea if it will make a difference, I will report back!

I fully understand Tiddletaddle I am trying to work from home. I am a single parent so I cannot give up work, it is just not a viable option. But I am exhausted and the symptoms are not shifting. I have done some work phone calls this week and I realise after a certain point I start to get dizzy and cannot concentrate or speak properly anymore. This point is quite far in - about 30-40 minutes - so it is not a huge problem but I am scheduling only one phone call or Zoom meeting a day now. So by the time that is done, plus a bit of desk work; then that is it.

fedupofbed you really have had a rough time, it sounds awful. I hope the spreadsheet sheds some light and your appointment tomorrow is helpful.

Sorry not for name-checking more people - I have been reading but am tired 💤.

I'm sorry about work @TiddleTaddleTat and @KatySun, so much pressure. I got lucky I guess because I've been furloughed, so all that stress was taken off me. But the sector I work in is very hard hit and I wonder if I'll have a job to go back to.

I hope the CoQ10 helps - let us know. There's another one I've been looking into called D-ribose though holding off at the moment as I'm taking so many now... vit C, D, K, calcium, magnesium, zinc, l-glutathione and turmeric! I have some fish oil somewhere but have lost it (we are living in chaos 🙄). I've also started sprinkling flax seeds over soups, salads, etc - seems a simple way of adding nutrients. I've cut out refined sugar and carbs, but can't face being stricter and cutting out carbs completely. I've read the nightshade family can be inflammatory (potatoes, tomatoes, aubergines, peppers) so that might be my next step.

I'm sorry about work @TiddleTaddleTat and @KatySun, so much pressure. I got lucky I guess because I've been furloughed, so all that stress was taken off me. But the sector I work in is very hard hit and I wonder if I'll have a job to go back to.

I hope the CoQ10 helps - let us know. There's another one I've been looking into called D-ribose though holding off at the moment as I'm taking so many now... vit C, D, K, calcium, magnesium, zinc, l-glutathione and turmeric! I have some fish oil somewhere but have lost it (we are living in chaos 🙄). I've also started sprinkling flax seeds over soups, salads, etc - seems a simple way of adding nutrients. I've cut out refined sugar and carbs, but can't face being stricter and cutting out carbs completely. I've read the nightshade family can be inflammatory (potatoes, tomatoes, aubergines, peppers) so that might be my next step.

Week 15 and voice is on the verge of going and I need a lot of sleep. Am more near 4,000 steps average per day. Blood tests again tomorrow, let’s hope they don’t go missing and they do include an antibody test

www.bbc.co.uk/news/53193835
BBC article on long term COVID after effects, including case study with milder long term symptoms

Morning! I'm so sorry some of you have the added worry of DC who are finding recovery hard. It's scary/challenging enough to find yourself in this situation, let alone worrying about your DC, too.

I've had a few work meetings. I find myself forgetting what we were talking about halfway through a conversation. Literally no recall at all about what we were saying. Is anyone else finding this?

Chest xray on Monday. Will see what they find.

HI all,
Who has the chest tightness? I’ve had it for a couple of weeks now, just feels strange like something in my chest? Also upper/centre back pain at the same time.
Should I get an x ray? Did others and what was the result? I never had this much before but seem to now quite late on?

@Whatapickle78 Yes I get chest tightness and pain near my heart, my back in the same place, sternum, and edges of my rib cage. I find it really scary tbh and reported this to my GP but he said it was muscular or pleuritic. I don't know how he could have known that without examining me or sending me for further tests.
It tends to get worse when I am tired and have been exerting myself, alongside other symptoms including the cough, earache, headache, temperature.

@Whatnext2018 so I would wonder if over the past few weeks if you have increased your physical or mental exertion, or been under particular stress? It might explain why it has appeared now? Worth mentioning to your GP and hopefully a referral will help clarify.

Hi all, I visited the acupuncturist today - I feel very mixed about it. Personally I didn't have the greatest experience. The first 2 needles, no problem, but the third one had a massive effect on me. It first made me feel totally 'crashed' like I couldn't even move my arm off the couch, so she took the needles out and spent the rest of the session just massaging various pressure points, but then I got all wired and jittery. I was also very emotional.

I think this virus has totally completely messed with my body. My gut feeling is that I'm in a vicious cycle of over exhaustion/ fight or flight state which won't let me recover.

Since I've been home I've been zonked on the bed, but simultaneously jittery. My SOB has gone though. As all these symptoms come and go anyway it's impossible to ascertain if any of them have anything to do with the immediate effects of the acupuncture.

The positive I'm taking from this is that acupuncture is POWERFUL. It clearly had an effect, even though it was a bit dramatic for me today, and we'll be trying again next week. Just to add, she is a very experienced acupuncturist.

@Lightsabre yes that's right I was on the moving thread! We have settled in well thanks, still loads of work to do to the house but we are settled in and I am so very grateful for my house alongside what we are going through. We were renters before and the idea of living with the uncertainty that we did, or having to move while moving this ill, I can't imagine. Have you settled in ok?

@TiddleTaddleTat Yes that’s exactly the same as I’m getting, also occasionally in the heart area and sort of under left boob area? The past ten or so days I’ve fekt generally a lot better in lots of ways, still not 100% but better. But have had the issues with my chest.
This morning I felt a bit shaky and had the sort of tingling around my mouth, only a little bit, a lot better than 7 weeks ago when it was horrendous. I’m due period soon also so I’m wondering if I’m heading for bad times..perhaps it goes in patterns of 10 days or so I’m starting to see.
This morning I perhaps stupidly went shopping for the first time since the start of March, desperate for shoes and summer clothes for my dd. I spent around three hours and was rushing around a bit this afternoon, and now I’m aching all over..so I’m dreading tomorrow.
Has your chest pain now gone? When did it start and for how long? I’m wondering whether to just book a chest x ray and heart ecg thingy in case. I did have an ecg, all clear, but was around 8 weeks ago.

Has anyone else also had small pupils? Think I’ve asked it before, but sometimes they seem to be tiny? Also paleness in lips.

Gosh @Whatnext2018 well done on the shopping. I'm ashamed to admit I haven't left the house beyond dropping DD at school (2 min walk) for weeks and weeks. I know I'm ill because I don't miss leaving the house and don't feel bored.
My chest pain occasionally comes back but now only for a few minutes at a time. I used to get it while standing. As it has largely subsided I haven't been as concerned about it more recently.
Chest pain causes huge anxiety so if you can access a private test it may be worth it if it can provide peace of mind?
Deep down I don't feel worried about mine and think it is part of the post viral array of symptoms , because it comes and goes I am less worried than if it was there all the time .

@TiddleTaddleTat Yes I think I’ll try and get a scan just for peace of mind as you say!
How far along are you now? Sorry if I’ve asked that before 🙈I forget lots at the moment!

I'm just past 16 weeks

@fedupofbed ah I'm sorry the acupuncture session didn't go as planned for you but please do try again! It certainly does seem to be powerful! I guess it's a positive thing that it had ANY effect on you at all. What did the acupuncturist say? Did she think it worth you persevering?

Those of you managing to cut out refined sugar - please tell me how you are doing it?! I've eaten healthily all day but just had 8 Jaffa cakes! 😫 and now feel so guilty as I feel I'm impeding my recovery.

Just checking in - chest pain has been my worst symptom, alongside fatigue. My cough has got much better - I only occasionally cough now. But I do not think the chest pain was caused by coughing as it was constant, it just varies in intensity. At its worst, I could not stand, I had to lean on something or lie down. So from that level of pain it has abated.

Now, it is just ‘there’ - still varying in intensity, sometimes it is negligible sometimes it is sore. At times I have had the feeling something is stuck in it, mainly it is a pain from my sternum, slightly to the left and radiating through and across my back. However it is not longer really debilitating, it has just not gone away.

I have had a chest x ray but not got the results yet. I suspect it will come back clear as whatever caused it is not so bad now. My doctor said chest wall inflammation but at times it definitely felt more cardiac -related. My doctor and another doctor I have seen both say that it is not cardiac but that is based on questions, I have not had an ecg.

Not sure if that is any help.

@Norugratsatall yes she wants to persevere, but I think it's going to be very slow and gentle. I'm seeing her again next Friday. It'll be interesting to see how I feel in the next few days too.

Aw don't stress about the Jaffa cakes - we need some comfort! I've been compensating for the lack of sugar with cheese, salted nuts and fruit. So not exactly hugely healthy either...