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

@Whatapickle78 Yes my GP prescribed antihistamines, I had breathing difficulty so they sent me for a chest x ray (thankfully clear) and at the follow up, GP suggested trying an antihistamine as well as the inhaler I already use.

I've had perimenopausal symptoms for the last couple of years and I'm 40.

I’m 42, got pregnant fairly late at 39, no perimenopausal symptoms as of yet.

My periods during all this have been barely even there, v v light and only a day or two, until this last one, which was late but a normal 4-5 and normal flow, which I was quite relieved about.

Does anyone have their soreness based more around the left side/heart area plus the lungs/chest? I get so worried about this, but what test would you have for that? I had the eco in July, all was fine

@MillStone we all have hormones though!
And at least one X chromosome!

R4 Woman's Hour today is completely devoted to Long Covid. I've just come in halfway through.

@Whatnext2018 just seen you tagged me yesterday. I thought I had fully recovered a while ago but sadly it only lasted a month. I’d say I am 90% better though. I have bad days rather than full relapses and can do everything apart from intense exercise.

Shout out to @whatnext2018, @fedupofbed, @godhelpusall, @TiddleTaddleTat, @Moodgie, @Whatapickle78, @AndsLee, @LetsBeSensible and @MillStone and any other old-timers I have forgotten. Thinking of you all.

Whatnext2018, I was the same age with my pregnancy.

I didn't really feel myself emotionally for about 5 years afterwards, but Glandular Fever & CFS hasn't helped me.

I did feel like my old self from Aug 2019 - Feb 2020, then caught Covid. I could scream some days but we have to keep going!

@Whatapickle78, I have made an appt with the G.P for next week, its a telephone one, I requested a female G.P.

I slept for 10 solid hours last night.

@Ernieshere You didn’t feel yourself after you had a baby? Was it perimenopause? On top of this, that’s the last thing needed 🙈

@Ernieshere so glad you slept last night! What a relief. Hope you are feeling at least a little better today. Good news on the GP appointment. Maybe you could request Oestrodial to try if she thinks your symptoms do sound peri, and see what she says? I know get it from my GP, but the initial prescription had to come from the private consultant.., which was annoying. I think GPs prefer to prescribe the pill or synthetic HRT first as it’s cheaper.

@Whatnext2018 I was told I was borderline peri when trying to conceive... based on blood tests then. I kind of ignored it after having the kids until recently when the insomnia and anxiety got bad.

I also (after starting oestrogen) felt more like myself again than I had in years, it was fab I had 6 months of feeling great then I caught Covid

Also - is anyone considering getting the pneumonia vaccine this year? I’ve had the flu jab and it didn’t seem to cause problems, but I’m a bit more worried about this one. I have one booked, but can always cancel it.

@Egghead68 thank you for the mention. Sending love to everyone too.

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

Hi Moodgie. I wouldn't say I'm 100% recovered. I have recurrent costochondritis, I still have waves of thyroiditis and some candida. But my life is very close to back to normal. I recognise that certain exercises cause the costochondritis to reoccur and I'm avoiding them. Long hours of driving set it back off big time. It was completely gone in late August/early September but I did an ultra-endurance sports event, plus a 2 hour each way drive and it came back for a month. So bad that it came back but it's not stopping me from living an extremely active life. I suspect that part of the problem is a loss of upper body muscle. I'm trying to do things I did easily up to early March, but without the same strength in my chest, shoulders and arms.

I've also done a lot of reading on costochondritis noticed that my experience matches a lot with theory of costochondritis problems originating in the upper back. So when I have a lot of chest pain, I make an effort to do yoga for the upper back. First to increase back flexibility and work out the tightness and secondly to increase the strength of my back muscles in a range of motion. And it's genuinely amazing how even 20 minutes a day of this form of yoga alleviate the chest pain. I highly recommend it, along with rolling a tennis ball all over your upper back, or if you have someone who can massage the upper back and shoulder area, try that. Also just standing in a door way with your hands on the door frame and lean through the door, so your upper back muscles sort of massage themselves. It's all really great for getting rid of chest pain.

There are lots of different types of antihistamines. Which ones are helping anyone’s symptoms the most?

@alittleprivacy Thank you for your positive message! I will try yoga from the Facebook yoga for covid group. 😊
I don’t have pain at the moment, now it’s more like a feeling you get when you have eaten a lot and you can’t breathe properly. But it all fluctuates daily or even hourly.

Anyone else losing hair still or at all? Lots when I brush and wash. I always had a bit come out when washing as my hair is fairly long, but does this seem excessive?

The condition and colour of it is also not like it was.

@Whatnext2018 I have had hair loss for years but now it’s mad. Condition awful too.

@Frankiegoes I've experimented a little with antihistamines this week, either cetirizine or loraditine OTC make my tinnitus disappear for a couple of hours. They also stop my nose from running/blocked (I hadn't even realised but this has been a persistent symptom).
Tried phenargan as well to help sleep but was advised to come off due to heart investigations. I also disliked the sedating effect.

Y’all I’m thinking I’m having a major relapse. It’s been a good 4-5 days now. I thought it was Aunt Flo but actually I’m not good. I feel like jelly and have mainly been lying down. I just stripped my bed, normally I sit down half way through anyway. I was out of breath. I’m out of breath doing the dishes. I forced myself to go out for a walk earlier and I was sweating buckets but I did manage it. I just feel so exhausted.

Hi @Whatnext2018 my hair is falling out in the same way every day. I have had this in the past when run down.
Haven’t posted in a while as I have had a hard time with working and getting over my last relapse (had a bad cold)
I had 6 pain free days and have felt like me, but then last night the pain in my arms was back. I am so miserable!
Not helped by 6yo ds having to isolate due to a case in his class, which is stressful and also exhausting because he can’t go out all half term.

@LetsBeSensible Sorry to hear this. It's awful isn't it. Can you identify a reason as to why it could have happened?

Every time I think my SOB has finally gone, it comes back as strong as ever and I find myself with air hunger, gasping to catch breaths.

My daily routines, energy expenditure, diet and sleep are very consistent so I can't find a cause -- unless it's triggered by stress / anxiety which are harder to mediate.

@LetsBeSensible - sorry you are not well

Are you able to eat every few hours, Is the jelly feeling low blood sugar?

Have you eaten anything different, some foods cause asthma symptoms, curry/citrus?

I have to say though, I got really breathless going upstairs on Friday, which was horrible.

I think fatigue makes me breathless, Im sure the body/heart/lungs are working harder to walk/do chores when utterly exhausted.

I hope you feel better today.

Also @LetsBeSensible I find Gaviscon reduces my Resp problems a bit.

@LetsBeSensible sorry to hear about the relapse...did you say that you are expecting your period?
This is always the worst time for me.
Last time was the worst and I realised I'd been filling myself with histamine in my food - avocado, spinach, decaf tea and coffee, mature cheese, kimchi, kefir, soy sauce, lots of slow cooked meat stews etc and leftovers from the fridge.

@MillStone if all else is consistent, is there another possible trigger?

I am controlling all of these variables - physical activity (steps), sleep, stress (in that it is predictably high on my work days and low on the others), rests for 30 mins morning and afternoon.

In the absence of (known) hormonal factors then the only other explanations are something entering the body - infection, food?

@TiddleTaddleTat After 7 months of trying to identify triggers I'm still so clueless. It's seems that anything and everything can trigger a relapse but not all the time.

What I have been wondering about the histamine theory is if people with MCAS improve with rest or if they consistently suffer until the episode has run it's course.

Most of my symptoms improve fairly quickly (up to a point) with rest -- especially SOB and bounding heart.

@MillStone that's a good point re. rest. In myself I've noticed that the tinnitus, palpitations, tachycardia on standing does not seem to improve for me with rest. It's as though I go through several days of intense worsening of these symptoms and they gradually improve. Usually correlated with decreasing oestrogen (immediately prior to period).
The fatigue absolutely does improve with rest, and I think that the digestive enzymes and supplements I've been taking have made a big impact on fatigue.