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.

Sorry I NC, and forgot to change back for this Covid thread.

I hope the CFS can help, and you @fedupofbed, I know they will tell us to pace ourselves, but it's hard to.

Someone has said, I may have had flu in March and not Covid, if only they knew how we are feeling

Have just read some info on CFS at www.cfsselfhelp.org/library/about-chronic-fatigue-syndrome

And it is fitting my symptoms more and more... I wonder if the next step for me after ECG and bloods (assuming nothing is found) is also requesting a referral.

It's like life is slowly crashing down around me, does anyone else feel like that?

Yeah I'm sorry @TiddleTaddleTat I hear you. There have been many many tears as I've tried to get my head around this. I feel like I've had to grieve my old life and accept how things are now, without losing hope that things will improve with time.

Remaining positive has been hard, often impossible, but that is what I strive for - to help manage symptoms but also I strongly believe that a positive mindset really encourages healing.

Sending love and strength.

Thanks @fedupofbed in many ways I feel that I have moved towards acceptance , but having to explain to my husband again today, and then to friends at a BBQ this afternoon and the slew of questions - did you have a test? How can you still be ill? Etc etc that just tire me out more. Mostly, my husband is still disbelieving and this really gets to me. He basically downplayed my illness from the beginning saying very little but implying it was all anxiety / I was exaggerating. Makes me rage but of course I have no energy to express that.

Hi all,
Parents here at the moment so have been stressing in my head about the (unlikely) possibility they catch it off me, also planning my Dd’s birthday so very full on at the moment.
Was doing ok, again never 100% but manageable with strange things throughout the day.
Last night when going to sleep I had the old strange sensations again, almost feels shaky in my chest/head? Slight tremors, teeth/gums felt strange again and strange feeling as if pushing down on me..so hard to explain! Had these feelings before, but thought (hoped) they had long gone. Anyone experienced this?
I think I’m around week 17 now, still waiting for chest x ray and ecg results, but cannot believe the snails pace of this.
@TiddleTaddleTat I hear you about your husband etc, I mainly don’t even mention anything to anyone anymore, I don’t think they get it or it seems like a downer. Family being here means I’m cooking and cleaning more, driving them around and basically just not relaxing as I should be. I can’t rven begin to explain some of the things I’ve felt and experienced over the last few months with this, it would worry them to much.
I also feel quite short tempered and angry at times, not sure if is due to this, or just having family to stay in the same house 24/7 and a demanding toddler!
I’d so love someone to say ‘Sit down and ill make dinner’ though.

*Too

@TiddleTaddleTat The Covid 19 Awareness website has got a collection of articles on long haulers - maybe your husband can have a look. There are lots of them now. I think anyone still disbelieving is very likely to change their mind after looking.

@Moodgie thank you, the website is looking great, I've shared it with my family and hope they will look!

@Whatnext2018 Oh no sorry you are having to care for others, they should be caring for you! It's good you have recovered to a level that you can have a semblance of normality I suppose, but no good that you are getting symptoms back in the evening - your body is telling you to slow down. Would your parents understand if you told them?

@Whatnext2018 have you tried crying? That was the only thing I did that got through to mine.

For anyone who is still having people tell them their symptoms are a result of anxiety, look at this article. It sets out how doctors found dyspnea (sob) on exertion as a distinguishing factor of Covid. Dyspnea caused by anxiety tends to be more pronounced with rest. With Covid it is consistently caused/worsened by exertion.

www.infectiousdiseaseadvisor.com/home/topics/covid19/dyspnea-and-low-oxygen-saturations-may-be-pivotal-for-diagnosing-covid-19/

I have woken up with a sore throat for the second morning running. I've also been feeling more dizzy but put that down to not eating enough .

@Kitcat122 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.

I've been doing stretches aimed at my back as my back muscles, while never the most flexible, have become incredibly tight in the last few months as I think they've tensed around me to protect my chest. And I've just very recently started to lie on my back, holding one small weight clasped in my hands, back behind my head on the ground and raising it in a curve over my head, towards my waist and back. It strengthens my upper chest muscles and arms without putting too much pressure on my sternum. I also take a small weight in each hand, lying on my back, with my elbows out to the side, and raise my arms up, without bringing them to the centre of my chest, so I don't get sternum pressure.

That said, I don't have any real shortness of breath anymore apart from occasionally having to focus my breathing when I'm doing strenuous cardio. So I think the inflammation directly around my lungs has gone. I mainly just have mild costochondritis that I'm managing with ginger, tumeric and anti-inflammatory gel.

These are the back stretches. I can not stretch like the woman in the video but it does help with the tightness.

@alittleprivacy thanks for the link. My GP said the same and did a step test with an oximeter when I was called in person last week. Although my sats didn't significantly drop my heart rate increased very heavily and I was breathless, she said this was enough to make her quite sure that it was Covid that I'd had.

@alittleprivacy thank you you x

@TiddleTaddleTat Yes all the way through I’ve (thankfully) never been bed bound etc and have managed to scrape through the day’s with the very basics of caring for my dd the best I can. That has improved lots and I am mainly able to be normal, with bouts of strange things coming and going and an ever present sore chest and aches. My Mum knows all about it from lots of texts over the months and did say they’d come and help me out 🤷‍♀️ It helps a little when they’re watching Dd whilst I’m cooking etc. I’ve had to be quite strong though in my point of going out only a couple of times a week during weekdays (need car to take them to main places so it means doing 4 journeys a day to drop my dp off) in the past i’d do this everyday and take them places quite nearby, but I’ve set a limit on it as worried about things getting worse.
I was having quite a stressy time with dd as she’d had a Cornetto and ice lolly and was hyper (boring as it sounds, I only let her have these occasionally and grandparents giving her cake etc) so I could feel myself rushing around and getting stressed..that night all the strange things came back, I think that shows that we really all try not to get stressed or do too much.

@LetsBeSensible I’ve cried lots in the past on front of dp and he’s been pretty supportive. I think now that it doesn’t ‘Look’ like I have much wrong with me and I can more or less go about daily life, everyone thinks I’m ok. I can still come back from a big shop, sit down and feel overwhelming dizzy and have aching all over later on, so clearly not back to normal.
Everyone’s in holiday mode here so I’m reluctant to be the party pooper but am forcing myself to take it easier. I take dd upstairs to bed for a nap everyday and that’s my 2.5 hours of quiet time out!

What on earth is the shakiness in the chest? Does anyone have it and know what causes it? So strange and around my gums at times?

Someone sent me a video on Facebook by Dr Ben Lynchh who talks about supplementing with glutathione. Anyone heard about it?

Hi @Moodgie I've been taking glutathione for a couple of months now but I can't say I've noticed any effect on me either way.

Hi, I have name changed but have been on this thread since about day 50 or so ... lost count now, week seventeen or thereabouts.

Is the shakiness like there is a butterfly or something vibrating at the chest wall whatnext? I have had a kind of fluttering feeling at times, most strange - but I am not sure if that is what you mean.

@Outofthevalley Yes, that’s almost it! It’s really hard to describe isn’t it? There’s just something ‘There’ for so bloody long now, feels shaky and vibrating at times, I don’t understand what can be causing that feeling?

@fedupofbed Thank you for your reply. Hope you’re getting better.

whatsnext No, I don’t know either although I presumed it was like a muscle spasm of some kind. For me, it is not where my usual chest pain is though (front centre) but at the back/side. I will add it to my list of things to ask the doctor.

@Whatnext2018 @Outofthevalley

Have you been suffering with a palpitations/pounding heart at all?

When I fell ill my heart was pounding so hard it was shaking my whole body. Over the past 16 weeks it has reduced in intensity and frequency. Some days it’s almost gone except at certain times or activities such as waking up and after eating.

Anyway, the reason I ask is because after it’s been pounding and it is slowly returning to normal, there is a phase of pounding that feels like fluttering, shivering or a tremor. That’s how I have been describing it to Drs.

I tend to get this in the later part of the day. I wonder if this is what you’re both talking about?

Thank you Millstone, I guess yes and no.

Yes, I have definitely been having the pounding heart and palpitations. I am also at the stage where this has gone aside from after activities or exertion.

But no, to the shaking feeling being part of that (which sounds like something I did not have, and an added discomfort, so I am sorry you had that as well). The shaking is entirely separate for me There is no rhyme or reason to the fluttering (it is a bit like having a butterfly stuck in your chest wall).