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.

Hi all,

So slight symptoms since two Tuesdays ago when I had a lot of dizziness. The part that never seems to go away is the feeling that I need to clear my throat/something in it, tight chest on occasion and some aching/pain mainly in calves.
Today I woke with the strange shaking in mouth(not heard of anyone else having this?) when I put my teeth together, they shake? Can feel shaking inside my mouth/head...of that makes sense?!
Woke Saturday morning with a really strange anxiety/feeling of doom, haven’t had this for a while, that feeling scared feeling. I got out into the nearby woods with my dd and tried to shake it off.
Didn’t have any symptoms come back when ovulating, I thought there was a strong link there, but nothing happened this time.
Definitely notice when I’ve been busy, feeling tired, it comes back. I think I’m paying today for the last few days of rushing around. Shaky teeth, aching back of neck and arms and hands.
Cancelled some of my tutoring yesterday, really need to get back into it or risk losing my jobs, the thought of teaching, mentally hurts my head.
Hope everyone is ok, most of us must be around the 7 month mark almost now?
Do you all feel hugely improved?
I haven’t been to the doctors etc for a long time, still taking all supplements and waiting for it to go completely 🙏

Sorry all, I’m whatsnext2018, having trouble switching back as name changed for a thread 🙄

Done ✅😂

@Whatsnext2018
Glad to hear that you are experiencing milder symptoms, even if it's still not shifted completely. To answer, do I feel hugely improved - I guess the answer would be "yes", although I am having a wee relapse just now. @emoojoo - I felt the weird thing about the nerve endings in my toes you were describing last night! How odd! It wasn't sore or anything, just tingly...

@Whatnext2018 no I'm not hugely improved...
many symptoms have reduced significantly to the extent that they only return occasionally or during a relapse.
However my last relapse lasted 4 weeks.
I still have debilitating fatigue and can't walk outside of the house as I need to sit down often.
2000 steps a day is about my limit, over that and I get post exertional malaise.
Talking to the post covid clinic today .

@TiddleTaddleTat Good luck! Let us know how you get on?

@fedupofbed How are you getting on with your antivirals? :)

The post covid clinic call was... disheartening.
Really dismissive. He asked multiple times if I'd had a covid test. I had to say each time that I was ill in March and not in hospital.
He was downright rude about possibility of ME/CFS and said there was no basis in evidence of the existence of the condition.
Got really shirty when I said I would have difficulties in doing an exercise test because of the fatigue it would cause.
Bloody awful!! He implied it was all in my head but reluctantly agreed to do a tilt table test for POTS and 24 hour ecg.

@TiddleTaddleTat Really?? In a Post Covid-19 hub? I wonder if they would have the guts to be so dismissive to their big boss BoJo, who very clearly is still ill...

Nope, not cool. Not having it! Is it that specific Doc that's doing your tests?

@TiddleTaddleTat I’m so sorry they were unhelpful and you had to deal with that!
He said there was no basis in evidence for CFS existing, or in your case?
To be honest I’d be contacting PALS

@LetsBeSensible @TiddleTaddleTat Yup, definitely. And the Clinic Manager...

@emoojoo See with this relapse thing? Tell me there's no rashes??

@whatnext2018 I was feeling significantly better until I got a very nasty cold with sore throat and cough last week. It has unfortunately exasperated my sob and chest pain which had almost gone. I hope it's just a blip but my chest hasn't hurt like this for months 😭

@AndsLee @LetsBeSensible he was a respiratory consultant, so based there rather than within infectious diseases. I think my GP referred there so that I could access cardiology investigations sooner than I would have done with a direct referral. I wonder if it's because this dept was known to be quiet or something...

Certainly sounds different to the other, pretty fab sounding multidisciplinary team in Sheffield that I think you saw, @MillStone

I really don't have the energy to complain. He denied the existence of CFS and said it was certainly not appropriate to diagnose me with it in my care.. He has at least ordered more blood tests (inc autoimmunity) and the heart tests I think I need. I might see if I can have a follow up/results appointment with a different consultant.

@TiddleTaddleTat hi, sorry your experience was disappointing

It’s good news that you’re getting some new tests, including that tilt test.

Sorry I’m not sure who I saw but I don’t think the hub existed then so maybe it was some interim support.

I had a tilt test last week and had to stand up for 45 minutes. Exhausting! And actually quite unpleasant all around. My heart was bouncing all over the place so I’m interested to learn the results.

Hope everyone is okay.

Hi everyone. @TiddleTaddleTat I'm so sorry about your experience, that's really shocking.

I'm still pootling along here making progress at a snail's pace, but progress nonetheless. The phenergan has really helped with sleep. The weighted blanket has helped a little bit as well but not as dramatically. I do love sleeping with it though. I've survived one DC being off school with a heavy cold last week and two very active days today and yesterday (yoga and increased household tasks) with no repercussions yet (hope I won't be eating my words tomorrow).

@AndsLee I haven't started the anti-virals yet, but I'll keep you posted.

@Andslee I did get a few blotches on feet last week which looked eerily familiar but that went after a couple of hours. Btw One of the continued left over symptoms I have which relates to the burning or tingling or aching hands is sometimes my palms look mottled red, sometimes the fingers of palms are red.

@emoojoo backs of my hands for me. Red and mottled. Twins again!

@emoojoo I have noticed...although my abdomen feels more sensitive, and I think the omeprazole is holding indigestion at bay...dare I say...the breathing through dust sensation...has lessened??

@MillStone Gosh, 45 mins. That must have been hard. Did you faint , feel dizzy etc? How did you recover afterwards?
I don't know what would happen if I was upright that long, I've avoided it for months because of the symptoms it triggers ... but I understand the necessity of doing it for the purposes of the test.

Morning @TiddleTaddleTat I know, same! I thought it was 20 minutes ( which is still an ask ) so I was surprised to found out it was 45. Added to that I found it a bit claustrophobic.

It was the longest I have stood for in 6 months because I find standing still difficult. My heart goes erratic and I get dizzy and panicky. Strangely walking slowly is much easier.

I had a few waves of dizziness and breathlessness but didn’t faint — I have done recently though. I could feel my heart rate going up and down a lot though.

Afterwards was okay. Bit of a confidence boost if anything. I had the same experience with the CPET test, which inspired me to try and do a bit more physical activity.

@MillStone gosh you did the CPET test as well? I said I really couldn't manage an exercise test. It didn't sound like it was a 2 day one, just a single bike ride. At the moment I can't walk for more than a couple of minutes at a time and that causes post exertional malaise for days so I am not keen to do an exercise test which will intentionally exert me.

Slept terribly last night. Only about 1-2 hours. Didn't take the phenargan because the doctor said it isn't recommended with suspected PoTs due to issues with heart rhythm. Tried kalms which did F all!!

@TiddleTaddleTat Sorry you didn't sleep. It makes everything so much worse doesn't it. I only sleep for the first 2-3 hours and then wake up every 10 minutes either boiling hot, tight chested, breathless, back pain or bizarre dreams / nightmares.

I had a CPET about 5-6 weeks ago. I was really worried and explained that it will knock me out for who knows how long... but I was advised to take the test and, like you and your upcoming tilt, did so because it's the lesser of two evils.

After the test I rested for a few days and thankfully there were no noticeable consequences. The test results were also fine and indicated everything is working perfectly. Since then I've been more liberal with activity and heart-rate.

I find that gentle movement / exercise really helps the POTS type symptoms but ever so slightly too much makes them worse and also causes the debilitating fatigue and a recurrence of symptoms (Covid PEM I suppose). It's such a juggling act which seems to change daily.

@MillStone that is encouraging about the CPET... I wish I feel I could do one but my activity is so limited at present . I have heard stories of those with similar PEM symptoms being knocked out for weeks or months after exercise. I've only reached the point of barely leaving the house because my previous attempts have resulted in relapses of weeks and weeks that leave me unable to do basic tasks. I'm also WFH part time and under pressure to increase to full time. All of this means that doing the thing I know will make me sicker comes at significant cost!

@TiddleTaddleTat So shocking you were treated like-disgusting behaviour, so sorry you’re feeling so ill.
Yesterday was awful, aching all up my neck and shoulders, bad headache and sinus type pain and aching all over and flu like. I was tired the last few days (have a toddler, so basically always tired) but slept better last night. Still with the constant feeling of needing to clear my throat.
Really don’t understand this illness as these don’t feel like after effects or else how could it feel like there’s something still in the throat and a wheezy feeling.