Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@KatySun sorry it freaked you out, I m sure we are past all of that (surely those of us more than 3 month in are.
Actually I’m coming up to my 6 month anniversary this month.

@KatySun long past, luckily.

Ive not slept now for months without waking.

I'm one of the first march posters on burning lungs and have had every symptom, but I also keep getting woken by bladder pressure, burning bladder but no UTI, I also had another trip to a&e for kidney colic 2 weeks ago.

Is anyone else having UTI and kidney issues 5 months on?

My current symptoms are, hip pains, lack of sleep, bladder burning on and off, headaches, strange vision, I have good eyesight but it's fading in and out, sore eyes, thirst, tightness in chest and breathing issues, fatigue and really odd moods where I will just switch off from life and have to go to bed.

I can talk, text, focus I just have to go away. It's not like me at all.

What supplements are people taking, Any advice on blood tests to get? I feel like I'm just so out of balance I came back on to see how everyone is coping?

Yes sorry, I was very tired last night and had visions of my lungs filling slowly over months. I wonder what the implications of the theory are for long term covid (or how it explains that). I am five and a half months now.

mellowgreenspring I am sorry you are still so unwell, it is rubbish. It sounds like you have a lot of physical issues and pain to deal with. My GP has done blood tests (but when I was not at all well, so I did not think to ask what for, I think just regular blood tests though) and a chest x - ray. She has referred me on now to an infectious diseases consultant who I have not seen yet. I don’t have the kidney symptoms, no - mine are respiratory and chest pain, headaches and not sleeping. I don’t have chronic fatigue but I realised the other night that I am still a lot more tired than I would have been but if I am not sleeping properly, then that explains that. Is your doctor helpful?

Morning all...

Bloods are back. No auto immune issue markers. B12 and Iron levels are fine.

Symotom check:
Still with the breathing through dust feeling. This is lessening though. Had a wee relapse just before my period. Inclined to agree with consultant - acid reflux and dysfunctional breathing caused by laryngeal obstruction. Orkney sea air has done wonders.

Burning skin. By far my worst symptom. Convinced this is nerve related. Again, worsened this week before period...ebbs and flows but I think it is improving and healing slowly. Going to try CBD oil I think.

Managed a couple of glasses of wine last night with no recourse.

Onwards and upwards as they say...

@AndsLee that sounds really positive and like any relapse was short lived?

I'm having a good morning and trying to stop myself doing too much - it's just so tempting to crack on with everything that's slipped in the house from the days feeling rubbish.

I still have chest and back pain, but lesser than it was at its worst and helped by a hot water bottle. Shortness of breath at times..,but I've got used to the feeling now. I also think mine is acid reflux caused...and I have a no caffeine, alcohol diet and gaviscon advance after every meal which helps. I want to avoid omeprazole as it seemed to not agree with me and caused other IBS issues (though that could be the covid, who knows!)

I'll be 6months in mid-September and would say most days are manageable now, even the bad ones. Juggling working from home and kids always sets me back, but I'm hoping the school return will make that easier.

@givemeanother hug We're getting there...

I haven’t posted for a while. Like many of you i am rapidly approaching the 6 month mark (next week). I am currently in another relapse with sore neck (new this time), headache and sore jaw. Feel pretty rubbish, but thankfully not bed bound. I have started return to work, but very slowly. I can do this from home, but still finding it tiring. Eyesight is fairly rubbish at the moment. I am hoping this is temporary. I still need to get it checked out. My kids seem to be recovering, one still gets some headaches. Sending best wishes to everyone.

Hi everyone. Sorry to all those who are having relapses 💐.

My excitement for the day was the optician. Felt strange being back on a high street after all this time. But I'm pleased to report that my eye deterioration is entirely in keeping with my age rather than anything more sinister. I felt uncomfortable in the optician as it's a small enclosed, relatively unventilated space with back to back customers. But definitely the best time to go - when there's minimal covid in my area and the winter bugs haven't started yet.

@mellowgreenspring I'm sorry you're still unwell. I can completely empathise with the sleep issues. I also had the burning bladder for a while. It's now gone but I have to drink lots of water - if I forget I get that stinging about-to-get-cystitis feeling. I'm taking the more common supplements - vit C, D, B12, magnesium, zinc, iron, turmeric and omega 3.

@fedupofbed that's good news about your eyes. Mine probably need a check up as they have deteriorated but I suspect it's more to do with increased screen use (this is usually the pattern with my eyes). Should probably arrange a test though, it's all the rigmarole of getting there and the waiting etc and the aftermath that puts me off.

My little triumphs at the moment are to do with negotiating adjustments so that I can manage my ongoing symptoms. I'm trying to get DD to help more around the house., I've created a basic weekly meal plan and stuck it on the wall so at least we will all get fed. DH is gradually adapting to increase in his responsibilities in the house and grumbles a bit but he sees the benefits for me. I have managed to delegate dishwasher, laundry and most of the cooking now which hopefully leaves me with more 'spoons' available for bits of work.

I'm aiming to rest 30 mins 4 times over the day, regardless of how I'm feeling. Managed this mostly over the last few days and it really helps me avoid the crash in the evening when I still need to eat , get DD sorted for bed, etc.

It feels like I have to ruthlessly prioritise. It's also getting easier to tell people that I'll struggle to do X or Y and ask for help.

@mellowgreenspring yes I sympathise with the bladder issues! I had sensitive bladder back in May and June and was forever up and down going to the loo whilst trying to get to sleep! It seems to have settled thankfully.

I'm with you on the weird mood thing. I have days when I feel mentally fine despite the onslaught of physical symptoms and days when I cannot be bothered to interact with anybody (incl DH and DD2). I'm having one of those days today.... this virus definitely has a detrimental effect on mood! 🙄

@TiddleTaddleTat sounds like you're doing an amazing job with your pacing. I think we need to do a meal planner here too - it's something I could do that would help DH. Kids are doing dishwasher here but not particularly well! I hope it all pays off and you get back some energy. Also hope you can continue to rest as much as possible (2 hours still doesn't sound much).

@Norugratsatall I'm sorry you're having a low day... hope tomorrow is better.

To all you school workers who've gone through this, sending love and strength for this week. Xx

@fedupofbed meal plan is so much easier. Planning to just repeat the same old every week but means more streamlined shopping etc as well.
To be fair when I'm 'resting' that means proper in bed lights out etc and doing nothing. Most of the rest of the day I'm lying or sitting but doing light activities or more involved like video calls for work.
It does help although feeling pretty drained tonight due to walking to the end of the road, trying to build up capacity a little. Tomorrow might be difficult...

Thank you @fedupofbed. X

Frustrating thread on here at the moment, where many don’t seem to believe or understand long term covid

‘Do people actually realise how few are dying from coronavirus right now’

Saw your comment @Tootsey11 so frustrating isn’t it?

@Whatnext2018 I haven’t seen this thread (not sure I should look) but I have encountered this attitude from friends who think we should just go back to normal and let Covid happen. Or people who tell me ‘but you look so well.’

If this kind of attitude hurts for us it must be horrendous for those who lost someone. I tend to think to myself well if you want to take your chances be my guest!

Has anyone else with heart symptoms tried treating it as POTS? Increasing fluid and salt, using compression stockings, etc?

I watched a video from dysautomnia international that was interesting vimeo.com/442593497

I did try increasing salt before and I think I noticed a difference, but then freaked out I may have an underlying heart problem and stopped. However I'm still waiting on the post covid referral and am willing to try anything at this stage...

@Criticallythinking Exactly, has two posters saying my symptoms sound exactly like ‘High anxiety’ 🙄🤷‍♀️So difficult as people have no idea, it’s akmost like they don’t want to believe it.

@TiddleTaddleTat I introduced coconut water for the potassium and that helped, then when I had bloods done my potassium was low (before the coconut water), so I guess there could be something in it. I’ve also been craving salty crisps so naturally I’ve had to give into that

@TiddleTaddleTat yes I did a lot of those things. I used compression socks, did very gentle exercises lying down, drank loads of water, snacked on salted peanuts, I have coconut water every morning and also used electrolyte drinks. I think all this helped but as ever not sure as could have just been time. Now my heart rate is far less spiky but too low and I'm confused as to what's best. I'm sticking with the coconut water, fluids and salty snacks.

Does anyone have any experience of weighted blankets to help sleep? Or will I just be throwing more money away trying to find the magic cure!

@fedupofbed @Criticallythinking interesting. I've had the odd coconut water but even that doesn't seem to have too much potassium.
What are the electrolytes - do you drink Diarolyte?! Sorry haven't heard of these but lots of the US posters on the FB group talk about pedialyte.
My heart rate is very low too. The spikes are lower than they were but can still get very high at times. I'll try increasing salt and see. I still think it's some sort of combination for me of a CFS/ME type pattern, POTS, plus the ongoing damage/inflammation which is as yet not really understood.

If you think it is leading to ME/CFS, do only 50% of what you feel you can manage. This applies to both physical and mental effort. Even watching TV is mental effort.

@Whatnext2018 I expect it’s a bit like having a baby - until it’s happens to you you can’t understand!

@TiddleTaddleTat I used SOS Hydrate, available on Amazon.

We're all different but my main symptoms now correlate with ME/CFS (my more weird and out there Covid symptoms are decreasing). Next week I have a zoom appointment with an ME/CFS specialist so hope he can give me a definitive answer one way or the other and some guidance going forward.

Thank you @CFSKate , it's very hard when my baseline's so low though. I also find it incredibly difficult to do nothing, no TV etc, as my mind goes into overdrive and I just end up worrying and getting negative.