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.

Having a bad day. Chest started feeling tight yesterday, coughing again, exhausted.
Did too much at the start of this week.

I'm sorry @LetsBeSensible hope you're able to rest and heal again.

Thank you for the article @Lightsabre I think I'm doing / have done a lot of what he's suggested - definitely got all those supplements! I hope you managed some sun lounger time in your garden today. I'm trying to slowly build myself to more and more time out of bed but I have to be super careful as I completely overdid it last time. I'm being a bit more sensible now. I know we've all been there.

Hi @BeautifulPark and sorry you're afflicted too 💐. In answer to your question I lost a lot of weight in the first 6 weeks then proceeded to pile it all back on. I wouldn't say I have a huge appetite but I'm snacking on a lot of high fat foods - nuts, kefir and cheese - as a replacement for all the sugar and carbs I loved in my previous life!

Hi everyone

Are you going to the doctors because you aren't fully better or because you feel too poorly?

I'm really tired in the afternoon. Feel tearful today but don't really know why. Just minimal coughing and lighter chest pain. Have lost weight but I am trying too. Also, I'm forever weeing .

BeautifulPark my DD has lost weight during covid. She was only a size 8 at most and now her clothes are 2-3 inches too big around the waist. She is not eating any less now but there was a point I had to suggest to make the effort to eat more regular small meals as she was finding her main meal too much and did not have her regular appetite. So a banana and slice of toast mid-afternoon for example, and something for supper as well, which has helped (she has not lost any more weight, thank goodness).

I spent some (physically distanced) time with a colleague this morning discussing a project. I kept getting dizzy and having to ask her to talk instead. I have found this happening during telephone and Zoom meetings but I was still a bit shocked not to be able to sustain a conversation in person and just have waves of dizziness for a while (I don’t exactly know why I thought it would be different 🤷🏻‍♀️). I then managed to take entirely the wrong way home, even though I have lived in this area for over ten years. This has prompted me to definitely call my doctor next week. Not sure exactly what she will do, but surely I should be able to hold a conversation? Chest pain has flared up as well but that is not as bad as earlier days.

What this means is that I am managing my job when most of it is in my house on my laptop not actually talking to people or going anywhere. I think because that is mainly what I am doing, I have been thinking I am more recovered than I am.

I am sorry for everyone else still not recovered

Yes, I think eating little and often is good advice.
Sorry to hear about the dizziness KatySun.
Those who say this is an ebb and flow illness are absolutely right.
A day at a time for us all.

Have a good night everyone.

@SunshineCake I went to the doctors to check if there was anything treatable among my symptoms, for reassurance, and to have on my record that I am still unwell .

Relatively good day here, I've been careful to do 50% of what I am probably capable of doing today, because I am only just recovering from doing too much last weekend. It really does come and go and can be unpredictable. I think I'm about week 19 and along with the very present extreme fatigue, most of my symptoms seem to neurological - ringing in my ears, tingling legs and arms, muscle aches

My temperature has come back over the last few days - up to 38 again. Crazy after all this time. Does anyone else still have this? I'm wondering how much is hormone related as I think I have a period due in the next week or so.

@KatySun I have the same issue with the intense dizziness when talking to people in person. It’s awful and have no idea what to do about it. I feel somewhat reassured that it’s not just me! If you do see your GP about it, let me know what they say.

My chest really hurts, I’m sleeping a lot, my vertigo has gone bad. Hello relapse! Damn period.
I see the ZOE project has identified 6 “types” of covid reactions.

@LetsBeSensible I'm sorry to hear that! It's psychologically crushing when you suffer a relapse. Have some 💐 and ☕️

@fedupofbed sorry you're still suffering too - what a time you've had with it! I really hope you see some improvement soon. 💐☕️ for you too.

Yes I saw the six types that the Zoe app had identified - sadly I do not fit any of them as I did not lose my sense of smell and neither did I have a sore throat! My best fit would be no1 I think so the mildest version! Which concurs as a lot of you and those on the fb group Have had it a lot worse than me!

On the 'types' that the Zoe research has identified I'm probably closest to 4 but there isn't enough information to know really.

My symptoms have changed a little over the last week - fatigue still constant but the ear ringing has stepped up a gear - no change when I cover my ears - and terrible cramps and aches in my lower legs. I've been stretching more as I think The calves are very tight due to lack of exercise. I also get pins and needles and numbness feelings at times. Especially when laid in bed. Didn't mention this to the doctor when I saw her last week (brain fog) but following a little bit of reading wondered if I should request to be tested for potassium deficiency in the bloods I'm about to get done?
Noticed that dysautomnia is being floated as an explanation for these ongoing symptoms - recall seeing this on one of these threads some weeks ago - but reading a little into that has put the fear of god into me so it should come with a trigger warning. Staying away from reading too much has to be an important part of recovery ... I'm switching off my googling now for today.
Meant to go to a friends for a socially distanced bbq later, they don't know I have been unwell, my DH arranged it. Thinking I will be honest and say I can stay a max or one hour myself . Haven't done anything like this since getting ill.

Aw I'm sorry @TiddleTaddleTat that sounds awful. I asked for a potassium test at one point and it came back okay fortunately. Do you eat bananas regularly? I also have a glass of coconut water every day. I know magnesium is very good for muscle issues ... are you taking a supplement? And Epsom salts in the bath?

I get very affected by what I read too, but I did bite the bullet and read up about dysautonomia a while back. What I took from it is that it can occur after a virus and get better as you recover, and also that there are various things you can do to help, such as loads of fluids and increased salt intake. Exercise also helps, but of course this is such a difficult thing to balance with exacerbating our symptoms.

I hope the BBQ is okay. I'm sure it will be such a positive to catch up with friends but yes be extra cautious and go home before you feel ready to!

Xx

My fatigue has really increased in the last couple of days, and I really think it is due to my period being due next week. It’s strange because at the same time I’ve seen a decrease in other PMT symptoms.

@fedupofbed thanks, yeah I do eat bananas but not daily... I looked up potassium deficiency as id heard it had been identified in covid patients in hospital, but then Apparently about 98% of the population is deficient anyway or something?! And supplements not available due to heart risks. I'll try and increase it in my diet.
Yes I have been taking magnesium supplements lately.
I'm tapering off the beta blocker that a previous GP (dismissive type) prescribed. My usual GP was surprised these had been prescribed and advised me to start reducing dosage. I notice that calf pain muscle weakness and fatigue are listed as possible side effects.

Enjoy your BBQ. Hopefully you can have an hour or two of normality as we can easily get consumed with our symptoms. I know I do. Hope every one has a good day xx

I’m confused about these 6 types on Zoe. I don’t think I fit in any properly.
In other news, I have either days when I feel pretty normal bar maybe a scratchy throat, or days when I am really fatigued, or days when my breathing is not right (like today). Most days I take my dog for a wak and do 10000 steps a day. There must be progress, albeit very very very slow.

Unwell since March 9h.

My fatigue is a lot worse at the moment, and I am really breathless, wheezing day & night.
Tinnitus is 24/7 since day 1.

I find Gaviscon really helps the itchy throat, Im still on Omeprazole.

I agree the Zoe 6 types, were not ideal for me, I was inbetween two of them but without any fever, I have never had a fever confused]

@Ernieshere sounds like we became unwell around the same time. Sorry to hear you are still getting breathless and fatigue is up. Can you identify anything that precipitated the fatigue to get worse?

The reason I am confused is because the blog (have not read the article fully) is because the authors link the types to likelihood of hospital admission, if I recall correctly.

Only one of the types has shortness of breath (going by memory again as cannot find the link now) which was the only criteria for medical attention when I was first ill and even then, it was quite serious shortage of breath (so for example whether you could string a sentence together and your lips were not turning blue, not whether you were out of breath going up the stairs). So (and I need to read the article, true), it seems to me flawed because I think the threshold for hospital admission changed over time.

But (again from memory) I put myself at between severe one and two, although I do not recall if I lost my sense of smell and taste and I was not really hoarse.

silvergoldsilver I meant to say, yes, I will update when I speak to my GP. I have not mentioned this issue to her before. I am sorry you are getting it too.

@KatySun I also get breathless when talking - especially if also standing or walking. I think it's down to reduced lung function overall. I do the same thing and just ask others to talk!

Hey guys. Just checking in with everyone. I'm sorry so many of you are still struggling. I'm mostly doing pretty well. I'd say I'm close to 90 on the scale posted above. I'm not yet fully as my old exercise levels but that's mainly because my old levels were very intense and even if I was completely healthy now, it would take a while to build up that kind of fitness after nearly 4 months off. But as I am now I have to step my levels up more slowly as every time I increase my exercise, my symptoms become more noticeable. I mainly have mild costochondritis and a sore throat that's more like strained vocal chords/a lump in my throat. These come in waves and are related to exertion. I also feel like my chest is very, very weak, so I'm trying to build up my chest strength while not worsening the costochondritis.

I also have congestion which could be hayfever. And I definitely get find myself getting really hot out of nowhere. (Possibly peri-menopause related?) The thing is though. I could live like this. If the whole rest of my life had to be lived with this balance, I'd be fine with it. I don't believe it will, as I'm slowly but surely heading back to full health. But if I didn't, I'd be really happy with where I am compared to where I was.

@alittleprivacy what are you doing to build up your chest strength? I feel like I have good energy now but still have the chest/back pain although that is improving but my lungs capacity is still absolute rubbish. Still breathless when talking too much let alone walking up hill etc.

@TiddleTaddleTat Im not sure, apart from I think I have been doing way too much, only general day to day stuff but a lone parent so it all falls on me from dusk til dawn, and it is a week before my period.

I should be hearing from the CFS service next week, so I will have a good chat with them.

Im sitting down inbetween folding washing, and taking it upstairs, then sitting on the bed

I hope you feel better soon

I've found something which is really helping me manage my SOB. I've consciously changed the way I breathe - it sounds almost counterintuitive but I do gentle nasal breathing in and out only, and it's had a very positive effect.

It's based on the Buteyko method but look on YouTube for anything from Patrick McKeown. I've just listened to him being interviewed on the Dr Rangan Chattergee podcast (well I'm halfway through) and it's absolutely fascinating - so many benefits. I'm tempted to buy his book.

@2020changedtheworld I hope your CFS service appointment goes okay. I've just been referred too.