Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

@SunshineCake I think others here have had costrochondritis which caused chest pain but your description sounds different

[quote LetsBeSensible]@SunshineCake I think others here have had costrochondritis which caused chest pain but your description sounds different[/quote]
Thank you for replying. I don't think it is that as my daughter has had that and I think it would have been more painful. I don't feel so bad today. All I have done differently is use my inhaler before I went running. I haven't used it for months as I kept forgetting and was fine but of course I am now thinking maybe I was an idiot. While I wasn't short of breath anymore I did have the chest thing every day since April.

@SunshineCake I haven’t had chest pain at all throughout this until this month. I thought I was 95% by the end of August but currently have pain across top of the chest and what I would call airways discomfort. I wonder if it is just doing too much and being at work (school full time) and using my voice all the time that just puts stress on the system.

I got scared when I read a patient who had gone home after the longest time in hospital has now died having never fully recovered, stating long covid.

@SunshineCake What were they in the hospital with? Which symptoms and how long?

I still get chest pain and a real tightening/squeezing in my chest, it can come out of nowhere and has become worse the last few weeks. I had a clear x-ray in July but am concerned it’s still not going.

@Whatapickle78 just typed out a longer reply then lost it. Gah! Basically this seems a good site for MCAS info. Details on antihistamines here mastcell360.com/the-biggest-problem-with-antihistamines-in-mast-cell-activation-syndrome-and-histamine-intolerance-you-may-be-making-it-worse/

Also worth checking the 'symptom checker' on this website. Very interesting how MCAS is said to move across different systems of the body e.g. heart, respiratory, muscoskeletal, skin... and that it differs between people but that most people have symptoms in at least 2 systems.

@SunshineCake @Whatnext2018
The man who had been in hospital on ITU and then recovered enough to go home never fully recovered and sadly he died.
Most of us here have never been on ITU so whilst it is scary, I don’t think it relates to us in quite the same way.

@TiddleTaddleTat So we should or shouldn’t be taking anti-histamines, it’s all so confusing 🙈

@LetsBeSensible Yes, I’m guessing there was sadly a lot more to his situation.

[quote Whatnext2018]@SunshineCake What were they in the hospital with? Which symptoms and how long?

I still get chest pain and a real tightening/squeezing in my chest, it can come out of nowhere and has become worse the last few weeks. I had a clear x-ray in July but am concerned it’s still not going.[/quote]
He had covid and I think it was months. It was in the news this week.

Thanks @TiddleTaddleTat @AndsLee I’ll have a look through this. I’ve got horribly itchy skin and scalp today and wondering if it’s related, as I ran out of Benadryl on Sunday. I had a drink tonight and some cake and pizza for a family birthday, plus some chestnuts we had roasted, and I’m not feeling great. Been off alcohol and not much sweet stuff either for a while. The chestnuts made me think of (@Andslee?) and her sudden nut allergy... I’ve just found some Piriton and now off to bed.

Sleep well everyone!

I hadn’t seen about it, just looked it up, trying not to feel totally anxious now 😢

I've had 10 days this month of being awake nearly all night, I keep a note of it, I honestly don't know what to do

@Ernieshere it's so crap isn't it. I have records of my sleep using Fitbit and my sleep is appalling!! At least one night a week of being up almost all night. Usually fall asleep ok then wake, typically 3am, and have palpitations and am totally awake for the rest of the night.
I'm testing out the histamine theory as a possible cause. On the worst nights last week I had kimchi and cheddar before going to bed! Both very high histamine.
Seeing if reducing it in my diet has an effect on sleep. So far so good, it's only been 3 days...

@Whatnext2018 I suppose if you have a GP interested in this area they would be best placed to advise.
I'm wary of taking AHs regularly simply because I would prefer to address it through diet where I can, at least initially.
AHs are also blockers but not reducers of histamine. Food introduces more histamine into the body directly. AHs also have additives that in themselves can increase histamine.
It is the 'being poisoned' aspect of the MCAS and histamine theory that I really relate to. It is as though my entire body has been poisoned and certain things make it worse - stress, period, foods, exercise.

Have any of us long haulers here fully recovered? I need some positivity again.

@Moodgie Me too, any old posters, I think @Egghead68 fully recovered? Haven’t heard from @Criticallythinking @fedupofbed and @godhelpusall for a while.
Was feeling really anxious last night, but did see on one of the Fb groups a couple of 8 month cases saying they are almost completely better 🤞

@TiddleTaddleTat I don’t want to become reliant on taking them, will only use when I’m really bad

@Ernieshere It’s awful isn’t it, not sure what to do either. I didn’t have it for so long, but seem to for a few weeks now. Very light sleep, if it’s that and lots of crazy dreams every night.

@LetsBeSensible
@TiddleTaddleTat

I had Glandular Fever about 4 years back, then diagnosed with C.F.S by a specialist, due to post viral, which I felt finally resolved last September.

In the past 4 years, I have suffered sleep disturbance during Ovulation & a few days before my period, so really only 3 days a month at the most, that was doing me in to say the least, being awake then going to work, but somehow I blagged it through the day!

This is another level.

I hope this resolves for all of us

Solidarity with everyone still struggling.
I know it’s not what you asked for and I’ve not got a complete recovery story but I am trying to notice baby steps when I can. Eg dealing with headaches and skin rashes is a breeze compared to the breathlessness and inability to do normal household tasks. Skin itching is better than joint pain. It’s all mind games and doesn’t always help but sometimes it keeps me relatively saner if I point these things out to myself.

@Ernieshere I’m so sorry. The sleep is the worst aspect of all this I find. my sleep pattern was exactly the same as yours too prior to Covid, as I’m perimeno it did for a while get worse, until I started taking oestrogen hormone replacement and that helped my sleep sooooooo much.

However, since Covid I felt like everything had been hugely shaken up. My thyroid played up, I’ve had to increase the HRT, and of course all the other Covid crap too...

Melatonin has worked quite well, and that week before period starts, I have been relying on anti-histamines... though I know they do obviously come with their own health warning too!

Do you mind me asking if you’ve been assessed for perimenopsuse? I’ve got a sneaking feeling that a severe infection like Covid can really mess with the hormones and bring on some menopause symptoms (perhaps even temporarily?) as there is so much symptom overlap here (including itchy skin and scalp...)

Anyway, solidarity to you. Nothing worse than terrible sleep

@Whatnext2018 I could have written @Fishflakes post myself. This is where I am currently... I’m not fully recovered, but feel like I’m almost there. The main celebration for me has been starting jogging again, without relapse, a point I never thought I’d get to. So yes, I’ll take skin irritation and fatigue over diaorrreah and chest pain any day...

@whatapickle78 See, I have to say my skin problems have been one of the worst things for me, because it was literally burning. But, I have to say the past wee while it's been easing off. I now get a mild burning sensation on my wrists, and I know it's time to apply the cooling menthol cream that I have, which seems to work.

I just wish this stupid "breathing through dust" thing would resolve. I am now more and more convinced it's some kind of allergy based symptom.

I believe that the organs effected for me are my stomach (indeed my digestive system) and my skin. I am not sure if I have neuro problems...I don't think so... I get wee bouts of tinnitus, but always did anyway.

@Whatnext2018 Please don't be anxious about the gentleman that sadly died recently. Although he had "long covid", it looks like he left the ICU with fibrosis and his body never recovered from the trauma it had gone through. This is a whole other level to us...xxx While there is always risks in recovery of a virus, and this is true for all viruses - measles, mumps, chicken pox, flu, and many more, keep this in context - there are hundreds of thousands of sufferers of "long covid" initiated by a mild infection of the virus, and some have recovered, most are improving, some slower than others, but this instance of mortality, which is really sad to hear, is not really in the same context. Hope this helps...xxx

Sorry @AndsLee I didn’t mean to sound flippant. I haven’t had burning skin at all, just the itching, so what you’re dealing with sounds like another level entirely!

@whatapickle Awh, I didn't think you were being flippant at all! But I think it also highlights how different each of our journeys have been. Which to me, again, only adds to this HI/MCAS theory...

Sorry I tagged the wrong poster regarding Insomnia, Im so tired!

I was walking around the kitchen last night, tears falling. I asked myself, "Are you crying because of tiredness, PMT, or sheer frustration?"

Probably all 3 to be honest.

@Whatapickle78

Im 47, and I feel that Peri may be looming. Periods are regular, but still.

I have not had an assessment, it is just questions they ask, or tests?

Im going to make an appt with the G.P that specialises in womens health.

My job will be on the line, if I can't go in, because I havn't slept.

Part of job is driving, albeit very very local, I would be totally honest with my manager if I was too tired to drive.

But how long would they put up with me say8ng I can't drive! I have to get this sorted.

Thank you