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.

Thank you for the kind words. I haven't had the test result yet, but my temperature is much more like it's been for the last couple of months today, although shattered after yesterday's experience. I think the result will be negative, it was just yet another flare up. But the flare ups have been worse in the last week, after once again going through a 'false dawn' last week. The whole thing is messing with my head big time.

We're supposed to be going on holiday next week and it's my birthday on Monday, so hopefully I'll be feeling better then.

@Mittens030869 it's just baffling. I think that temperatures comes under the symptoms of dysautomnia (alongside just about anything you could think of!) I really hope you feel better by your birthday.

@fedupofbed lounging is the way forward. Have you tried magnesium or vitamin B complex? My good run of days seemed to start when I took magnesium in the evenings and I felt better still when I added B complex. I'm generally very sceptical of the supplement industry but got to a point where I'd try anything within reason, and am taking things usually recommended for those with ME.

Mittens030869
So sorry to hear about your relapse. How long had you been symptom free for?
Hope the test is negative. Will you let us know?
How do you feel now ?

Hi everyone else, hope you all keep as well as you can.

It messes with your head doesn't it? @Mittens030869 I really hope you're better again for your birthday.

@TiddleTaddleTat yes I'm already taking magnesium and vit B - I'm rattling! I haven't tried COQ10 yet... do you think that had any effect?

I haven't been completely symptom free yet, as my temperature was going up sometimes (but never anywhere near 38.5, that was a shock and I felt absolutely awful) and I was still having coughing fits. But the coughing had reduced and I was starting to feel better.

I'm feeling optimistic that the test will be negative and that we'll be able to go away (and that I might be able to enjoy my birthday). But I'm completely shattered today and have stayed in bed to recover.

Thank you, all, and yes I will update you. I really appreciate the support on here.

@fedupofbed ah ok. No I didn't notice a perceptible difference with the CoQ10 if I'm honest, and it's bloody expensive . Others rave about it though so who knows ...

@TiddleTaddleTat thanks. Maybe I'll hold off for now then... I still seem to be spending so much money on this. I've just ordered a Fitbit, some electrolytes (good for POTS symptoms?) and a self help book!

Fingers crossed for your test results @Mittens030869 .

@fedupofbed good luck ! The heart rate/slew/activity monitor I got has been very helpful with pacing etc. Means I can see patterns around relapses - usually seem to happen a day or two after I do many more than 1500 steps. That isn't leaving the house or garden. Hoping this can increase soon but I'm being very cautious.

@fedupofbed
Paddling pool made me laugh! I’m glad you say it’s good for the autonomic system. We were staying by the sea last week and I think a couple of dips did do me good, though I worried so much about it backfiring and overdoing things that I struggled to relax once in.

@Mittens030869
so sorry to hear about your flare up, it sounds like a bad one.

I wonder if the heat has anything to do with the relapsing symptoms going round?

My temp went up a few days ago for the first time in ages, and today headaches, chest pain, throat pain and dizziness all came roaring back. Taking electrolytes did make me feel quite a bit better today, though I’ve been in bed for most of it. I seem to get dehydrated at the drop of a hat, so hot weather may be an issue.

Can’t quite believe it’s now 4.5 months since all this started.... sigh.

Thank you, all! I tested negative, which is a relief!!

But it's still frustrating that I've had another flare up, It really feels like I'm in Groundhog Day, with false dawns and flare ups. But at least we can go away for our holiday and I can hopefully enjoy my birthday. It also means that my family can have fun even if I'm not up to it, my DDs have had a tough time of it too.

Hopefully better times ahead for all of us.

@Mittens030869
Glad to hear your test result.
Hopefully you will feel better in a couple of days time,
and really get the best from your holiday.

@Mittens030869, hope you manage to enjoy your break - it helps, mentally, I find to get away.

@fedupofbed, glad to hear you're out of bed for a little longer - small steps and all that.

Signed off for another 3 weeks today - I asked about a referral to ENT but the GP said it's best to wait for the ct scan results first. I'm going to phone the respiratory dept today to see if the scan has been reviewed yet as it's been 10 days since I had it.

Afternoon everyone. Hope you're managing to enjoy the sunshine, though it is VERY hot. I'm on my lounger again in the shade and listening to Room with a View on BBC sounds - super gentle. Think the paddling pool will be calling me again this afternoon 😆.

@Whatapickle78 I completely agree about the worry and stress of thinking you're overdoing it, and that can almost set the symptoms off in itself. I got myself in a complete tizzy a couple of days ago after I tried some gentle yoga stretches again (but it was fine). It's such a difficult balance. I'm glad you were okay in the sea though - how lovely! I've been doing very quick cold showers for about a fortnight now to no ill effect. They make me feel quite good straight afterwards. Apparently cold water can help reset the vagus nerve. People have reported benefits from Wim Hof technique too. I hope you're improving today after a day of rest?

@Mittens030869 great that your test is negative, hopefully a holiday will help as long as you take it easy.

@Lightsabre hope you get your CT results soon, it's so tedious and exhausting having to chase everything...

Hello all, just come to share some positive news, I emailed the GP for a new med cert. “My” GP just responded that he’s read my notes and thinks it could be post-covid and or a chronic fatigue flare up. He’s sending me for a chest X-ray, full bloods (again) then will look at a referral to the CFS/ME and rehab service!

Afternoon all. Good to hear people are improving and getting medical care.

Hope everyone is coping in this heat. It’s so hot! Even lounging in the shade.

Thank you for the kind words. I'm feeling a bit better today, and yes I'm looking forward to going away next week. I'll stay inside and rest sometimes whilst my DH takes our DDs out.

@Babdoc, I saw your recent post on one of the other threads - I hope you are coping okay.

@Mittens030869 glad you are feeling a touch better today and hope it improves

Really hot here today followed by a storm. Enjoyed paddling in DDs pool in the garden..: I'm feeling better and better each day at the moment and hoping a relapse doesn't appear.

One thing I did notice today was loss of smell and taste . I have noticed this here and there over the weeks but it has been really noticeable yesterday and today. I've lost count but I'm maybe 21-22 weeks now. Mad.

My smell still comes and goes. It's a nuisance as I can't rely on it. I never know if something smells OK or my nose isn't working that day. Although it's the easiest symptom I'm left with 🤣

@TiddleTaddleTat yes it's bonkers that random symptoms are still popping up after all this time. I never properly lost my smell though it was all distorted for a while - kept smelling burning. I'm slightly superstitious even typing this in case it comes back. But brilliant that you're still improving and enjoyed a paddle.

@LetsBeSensible glad you're getting some medical attention!

I have started very carefully walking my running route again this week. When I walk up hill I usually feel like my lungs are too small. If I breath through my diaphragm instead of normal breathing I don't feel breathlessness and my lungs don't feel small. Anyone know what this means?

i have been out for a walk and it's made me really breathless. I have been coughing since I got in.

The G.P asked me on Thursday if I ever had Asthma as a child. I didn't.

Is it the GERD that's causing the wheezing/breathless/coughing.

Who knows

Utterly fed up of this shit, since March.

Balls to it!

Hi @Kitcat122 Its amazing your out walking again.

I know exactly what you mean. It’s only when I purposefully started diaphragm breathing (at rest) that my sob started improving and I stopped having to gasp for the odd breath.

For months my brain seems to be trying to breath with only my chest and back muscles which is not efficient. I was told it’s due to disordered breathing after a nasty respiratory virus and could also account for some of the chest and back pain.

Since then I’ve been trying to retrain my automatic breathing my dedicating time to conscious diaphragm breathing.

Incidentally if anyone does find they need to gasp for the odd breath, I was told to hold my breath for 5 seconds and then release it. Not sure why.. but it does seem to help.

*It’s amazing you’re out...

Sorry phone typing.

Thank you @Millstone that's interesting maybe I will start gentle yoga breathing again and see how that goes.
@Ernieshere I hear you. I'm ill since mid March it's beyond depressing 🌹🌹