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.

@LetsBeSensible glad to hear you've managed to shake off some of the many unpleasant symptoms that this virus throws our way.

@MillStone sorry you're still battling a smorgasbord of delightful symptoms! I hope you get some relief soon.

I've been to the beach today with my eldest DD who's been down from London for the weekend. It was tiring but lovely! Lovely to see, smell and hear the sea, lovely to see other families having fun in a 'normal' way. I feel like it's done me the world of good mentally and physically. Also slowly building up my step count.

Hope everyone else is having a good day.

@LetsBeSensible

Who did the really good list of frequently used words a few threads back? *@godhelpusall* *@fedupofbed* *@Moodgie* back 3-5 threads ago?

I think it was @worriesomedad

Or @gunner30

I had a blissful 2 week period of feeling 100% recovered. My period is due in the next few days, and it’s bought back a lot of covid-y symptoms. Pain across the shoulders and upper back, headache, general sicky feeling. Insomnia. Hoping to ride out this minor relapse, and also hoping that I don’t end up with this as an addition to my cycle for the foreseeable.

Hi all

Hope this is the week we all feel better.

I've woken up with a sore throat and feeling fed up that I just don't know what is happening and what I'll be like when I am finally better. I had a weird pain in my tummy last night and I apart from the fact it hurt, I was worrying what it was. I know I have a fibroid but I don't know enough about it to know if it could turn nasty for me.

I have also woken up with a sore throat, which is not a symptom I have had previously!

I am sorry you are having a relapse TheWooIsStrong and hope you feel better soon.

It has come and gone and is back again.

Morning

I’ve been very very slowly feeling more normal over the past few weeks, but then I haven’t started work again yet and I’m dreading what might happen when I do. I also haven’t been doing any exercise or walks of longer than 15 minutes... so about to start that today to see how I get on. I seem to get very tired and spaced out after the 15/20 minute mark, but I’m wondering if I stop and rest for a bit then carry on I can build up from there.

I’ve had no major relapse (fingers crossed) since the beginning of June, and recently no SOB, chest pain, headaches for two whole weeks which is great news. Long may it last.

I still have fatigue, have to lie down around 3 each day, a sore/swollen feeling in my throat that comes and goes, and sharp, grinding pains in my shoulders which feels like frozen shoulders (had this before), the pain and stiffness in my fingers is still there but not as bad. Oh and some dizzy ness still when walking, standing up.

I’m going to ask the GP for a neuro appointment today, as well as scans of shoulders and hands.

Hope everyone’s week brings improvements

Anyone getting broken vessels on legs?And red patches that come and go?

Of course my day of feeling more like myself was short lived...
Symptoms back, fatigue back, and back to square one.
I probably did too much, but doing too much now constitutes a day of sowing seeds in the same day as walking 1000 steps to the park at the end of the road.

Sorry to hear you've had a relationship se @TheWooisStrong - I think if you can pin it down to pre menstrual then at least that's progress. Sorry to hear you feel crap today also @TiddleTaddleTat.

@MillStone, you are so lucky having the medical help you need - hope it helps you to progress. My breathlessness has started to ease off suddenly. I managed a very slow long walk yesterday with a gentle gradient. I had a few stops. I have the usual upper back lung pain this morning and am stiff around the hips but no other pains for doing it! It was lovely to be about doing a normal walk with dh and ds.

My main issues now are this lung pain, throat/oesophageal issues and general fatigue. I'm thinking of trying CBD oil for the pain.

That's meant to read 'sorry you've had a relapse'!

@Lightsabre thanks, I hope you’re okay. It’s great that tour breathing has improved and you’re getting out for longer

www.bbc.co.uk/news/stories-53368768

Thanks @Moodgie that clinic sounds exactly like what we all want and need.
Even having dealt with ME/CFS for years, I’ve not found this experience easy. I’ve had the odd low mood and avoided any real anxiety and depression. I do feel extremes of emotion - that’s because I’m fatigued. Tired people are grumpy and cry at the drop of a hat. I had long dark nights of the soul (any lungs old timers remember those?) and I’ve had to battle the same old attitudes from friends family and GPS - pull your finger out, you don’t want to get well, you’re depressed and giving up etc. I’m so mentally resilient. I’m sure the only possible symptom I didn’t have was the “doom” and even that, the posters who had it were having worse heart and lung symptoms than I had so I don’t know if that really was mental or physical (like adrenaline surge, that can have a doom-y feel but it’s a physical event)
People will need mental health support. But I’d bet that it’s far less than they need physical and medical tests and rehab.

Hi there, I have just found this thread. I was first I'll on 13 March, with fatigue, unsettled stomach and the runs, generally feeling wobbly and unwell, then a bit of a dry cough and tight chest. Only a mild temperature. DH had the fatigue, higher temperature, cough so I had to look after DC. Then carried on working as was (still am) working from home, so didn't rest. After about 2 weeks was just about normal (which means normal tiredness and IBS rather than feeling 100%!). Then mid April, just after Easter bank holiday, I got ill again - higher temp, cracking headache (thought it was my hayfever until I realised I had a temp), same bowel issues, fatigue, tight chest/breathiness (not quite sure how to describe!). I did rest this time has had booked a couple of days leave, but then back to the usual rushing around. Then end of May I had a different set of symptoms - palpitations, exhaustion after any exertion (cleaning, laundry), heavy weight feeling on my chest, felt like I was breathing through something (like wearing a mask when I wasn't!), minor chest pains, bowel issues. Had also been experiencing hair thinning which was getting noticeably worse (although I have a feeling this may have started pre-March). Ended up talking to 111 and being advised to go to A&E. But as none of the key covid symptoms (no fever, cough) I wasn't considered as a covid case - had ecg and blood test to check heart, then sent home. I asked about the feeling of breathing being harder work (i could breath, it wasn't shortness of breath) and the doc suggested my hayfever had caused it (pollen getting to my chest...) Although I told him my hayfever has stopped dead in mid April (weirdly after I was ill the second time). I felt exhausted and unwell for a few more days then a dry cough started - with a tickle in my chest, strange cough. Got tested but negative (don't think I did a good job of self swabbing!).
Eventually felt ok again. But just the last few days I have felt ill again - started with horrible stomach ache and fatigue - came on suddenly- then mild temo again (no higher than 38) bowel issues, tight chest, indigestion.
So I am finally coming to the conclusion I must have long covid.

My question is - do others keep having the fever return? If so do we know if this is active (infectious) virus or post-viral something or other?

I have done another self swab (still not sure I'm getting the right place, hard to see), awaiting result. The thought of having to keep isolating, my DH and kids having to stop and quarantine every few weeks when I take a knock back, is scaring me more than how I'm feeling. This time I have to rest. But I am also desperate to know how to figure out what's happening. I hope to speak to my GP once I have the test result.

@seriouslynonames sorry to hear you too are having long term symptoms. Your story sounds very familiar, unfortunately I have had a similar cycling of symptoms. Sometimes I can trace back a relapse to my behaviours - doing too much, sometimes, but still only 10-20% of my usual energy (if that). Like you I get the chest tightness, cough, debilitating fatigue. Similarly I get new symptoms - I think Paul Garner described it as a pick n mix of symptoms. This week for me it's fizzing and aching arms and legs. I'm nearly 18 weeks in.
From what I've read it seems highly unlikely we are still infectious, but the relapses make us doubt it. I'm going to try talking to the most sympathetic GP at my practice to get a referral to one of these post covid clinics. I am having to completely reassess my life because I am not the person I was before mid-March and naturally it is causing me to feel quite uncertain about the future.

I asked my GP about anything remotely post covid in the area and there's absolutely nothing as yet. She's now talking about a CFS ME referral, which is very depressing but not unsurprising given that I've been mainly in bed since the beginning of March.

Yet again I've been very tearful, mourning for my old life, and becoming increasingly pessimistic about any change in my situation. If I could I just see any improvement at all that would help, but for the last month or so my condition has been static. I've always been resistant to going on anti depressants (mostly because I worry about the side effects on my already knackered body) but think I'm going to have to go for it.

I'm trying to set little targets for myself to stay constructive, such as learning mindfulness. I've also realised that any movement I do lying down doesn't have as big an effect on my heart rate (classic POTs) so I'm upping my bed exercises to try and improve muscle and heart tone - hopefully if my heart rate stays below a certain level that shouldn't make me crash?!

@Whatnext2018 I'm interested in your new supplement - let us know how it goes. I've just discovered another one in my bathroom that I haven't tried yet (MIL ordered it for me) - monolaurin. I'm holding off for now as only just started my EPA omega 3.

@fedupofbed I'm in discussions with people about post COVID clinics etc- things are in the pipeline, please don't lose hope!

Are any of you Scottish- need someone to talk to bbc Scotland 🙏

@AndsLee ?

@fedupofbed sorry you’re in the doldrums. When I first got ME I tried an Anti D and it made me feel sick so I stopped it. A few years laterI tried a different one and it worked really well, I wish I’d tried it earlier. I was always against taking them but they have their uses and can improve sleep quality as well. Try them, they might help.
It’s a long t8me since I went through the ME referral process but be prepared for a slow protracted process and avoid the Graded Exercise!!!
I did eventually get my old life back you know, took a long time and it wasn’t half as fast as I wanted, but I did.

@fedupofbed so sorry you’re struggling. It’s a horrible, horrible illness that’s mentally and physically gruelling but we will get through it and we will recover

@fedupofbed So sorry you’re feeling so bad, I really wish they’d figure this out and help us all!
I’ve done two days and haven’t seen anything different as of yet.

Thank you everyone 🙏🏻. This forum has been such a support for me.

@LetsBeSensible thanks for your advice, and so reassuring to hear that you got your old life back.

Someone posted this before but I do find it comforting.