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.

@BananasAndApples I would prob call the GP about that if you haven't already. Though again, I know others have pins and needles, tingly sensations - not something I've had. Still chest pain and sob for me...

What is sob? I have figured out most of the acronyms but can't get that one.

sob - shortness of breath. Not sob as in sobbing, although I've done plenty of that too.

@TheLetterZ , it's short for shortness of breath.
@BananasAndApples, sorry to hear about your experience- that must have been frightening but the good thing is that you now have a diagnosis and some treatment is in the pipeline. Hopefully you'll get the ct scan soon.
@fedupofbed, glad to hear you have plans to return to work eventually. I'm not really looking forward to it and feel like I could do with the rest of the year off really.

@AndsLee

Would you describe intense burning as nerve pain or is it something else?
What is CHM course you are on?

Hi @BeautifulPark it is me taking CHM - Chinese Herbal Medicine. I've no idea if it's helping at all but just trying everything! It's free as I'm on a scheme for front line workers and the practitioners all have an active interest in Covid.

@Porcupineinwaiting ha yes sobbing of both kinds here too.

I'm sorry @BananasAndApples 💐 that must have been very frightening. I hope the medicine is working though and you get your CT scan soon.

@BeautifulPark I THINK it's nerve pain... Having never had this kind of pain before, I would struggle to use that as a descriptive term. It's certainly a "burning" pain...

I'm sorry, I'm not sure what CHM is? Oh... wait. Just read @fedupofbed's post, so I am now aware. I'm not using any Chinese Herbal Medicine.

@LetsBeSensible - how the hell are you?! :) xx Aye seems to be taking an age - my cells will have all replaced by the time the results come back. I was informed by Cardio Respiratory yesterday that the ECG will take another TWO WEEKS before it's reported on. sigh

Interested to hear about the acupuncture @fedupofbed , I tried it a few years ago for morning sickness and didn't have much luck, but only did one session.
I'm starting to think I need to throw (more) money at this problem. I want someone who can help with a recovery/rehabilitation plan. Private occupational therapist?
Had a terrible nights sleep last night, think I was nervous about a work meeting I had this morning . Also period has just started so... here we go again.

@AndsLee Thank you!

Is anyone else trying to negotiate/plan a phased return to work at present or adapt other areas of their usual life?

It feels like it's going to require a lot of asking for help... not something that comes naturally to me !!

Things that used to be so simple like dropping my daughter at school are now riddled with difficulties. Just the most basic aspects of daily living are enough to push me into a relapse, before I even think about work. I'm still planning for a phased return but if money were no object (and I wasn't bothered about career) I would not be working.

Hi @TiddleTaddleTat yes I think school going back has brought 'normal life' back into sharp focus and I've had to think about how as a family we can adapt. I hate asking for help/relying on others too!

For me it's about managing the school runs and after school clubs when I'm still not well enough to drive/ walk far. Luckily schools are walking distance and my youngest has a friend she can walk with - she wouldn't be confident to walk on her own. But I think I will have to rely on other parents more often than I'd like, especially for any extra curricular activities. I'm blessed to have a very understanding manager who is putting no pressure on me to return to work. My job is low paid, part time and often stressful but is very fulfilling and I'd love to be well enough to return. The other thing we could really do with is a cleaner. DH is very hands on but he just can't manage it all and the house is quite grim now after almost 6 months of this. Money is a bit tight as I'm spending so much on complementary therapies right now though.

Yes an occupational therapist would be great! I was thinking of contacting that Physios for ME organisation to see if they could recommend anyone (I know it's not ME but overwhelming fatigue is my most debilitating symptom).

Acupuncture... I keep going most weeks but it's hard to say if it's helping or if I'm just getting better with time. She's very helpful and compassionate, and I certainly feel the effects when the needles go in (certain pathways for relaxation, energy, etc). There seem to be lots of success stories on the Slack group.

@fedupofbed funny you'd mention physios for ME, I've just emailed them asking ! I did look up local physios in my area but a couple mentioned graded exercise therapy which put me off. I've been reading the ME association website and the work of Charles shepherd , which I think is excellent and has been the most helpful advice so far from anywhere for me.

School run - tricky. I'm very close to my daughters school, it's literally a 3 min walk on the flat but I practiced half of it yesterday and am dead today. May also be due to a very poor nights sleep. So will try again in a couple of days. Still, I've emailed the school about adaptations as they are requiring parents to walk a much longer route around the school as part of the one way system due to infection risk.

I did mention wheelchair to DH the other day but he was not positive. I'm trying to be practical... really want to be able to do things myself where possible.

Ah @TiddleTaddleTat great minds! Could you let me know what they reply? Someone lent me a book by Charles Shepherd but I haven't been able to bring myself to read it yet. And I can't think about wheelchairs yet either!

I hope you get a good night's sleep tonight. Apparently the more relaxed we are in the day the more productive our sleep is...

@fedupofbed thank you. I think my sleep was poor because of the arrival of my period, it happens every month pretty much. Sleep seems to be so important in recovery, but I've never been a daytime baller, even when I feel really ill I can't nap. Annoying!

Hi @andslee I see you can sigh so I guess your breathing is ok!?!
My peak flow obsession is on its way out. Sometimes it’s 400 but usually 350-375 which is a bit rubbish for my age according to google.
@TiddleTaddleTat have a look at spoonie info on adaptations or me/CFS. Personally I use plastic plates and bowls or cheap thin plates and pound shop cutlery. I have a lovely, heavy dinner service and cutlery set in the cupboard. Sounds daft but made a massive difference. Looks weird but I don’t care.
But yes some of it is deciding to eat ready meals and change your bed less often.

So when I got blood drawn earlier this week I asked them to again check if I have antibodies for COVID. I was sick in March and had 3 positive finger pricked tests that were all positive. And this one has also come back as positive. So I have kept my antibodies since March.

I thought I'd turned a corner, felt generally stronger and the fizzing in my legs stopped.
Two weeks ago I knew I'd done too much one day, since then have done the basics around the house and every day I've gotten worse. Today I feel awful. Fatigue and pain so bad that standing is an issue, tight chest, fast hr. If I didn't have children I think I could have slept all day.
I'm supposed to be returning to work next week on a phased return. I want to go back but I'm so worried. Feeling so down today and frustrated with how long it's been. I fell ill at the start of April.

@wallyrag So sorry you are feeling so poorly.
Hope you can get some rest and feel better soon.
x

I spoke to my doctor today, who was very reassuring about the tingly arm, probably inflammation in the neck due to tension and stress. I had an ECG last week which was clear so extremely unlikely to be heart.

Feel a lot happier and calmer now.

So just need to wait for CT next week and hopefully I can come off blood thinners.

I am sorry I have not been on the thread for a few days - chest and back pain playing up.

beautifulpark I am so sorry about your cat

godhelpusall I filled in your survey. DS is having some medical examinations now for his stomach issues, but we were initially told ‘wait and see’. The doctor now seems to think there may be underlying issues and not post-covid so we will see. DD is in the same boat as me with chest pain but not so bad (I say not so bad but this is five months on and she has pain when walking and talking at the same time, which is not normal really).

BananasandApples I am glad you are reassured about the arm tingling. So many worrying symptoms on this

My doctor has decided to refer me to an infectious diseases consultant to see if they have any suggestions. Has anyone been referred on with mainly chest pain? I think some posters on here have had helpful input as I recall but with a wider range of on-going symptoms. My chest feels like it is getting worse again but that is my main issue (luckily by the sounds of it).

@KatySun chest pain is still my main issue with slight heavy chest /Sob. Keep thinking should ring the doctor again but haven't yet. I am doing light exercises now. The same as your daughter with chest pain whenwaking and talking.

Hello all...

So ECG is more or less clear, I have an ectopic heart rate rather than AF. That's common and nothing to be concerned about...

Burning pain in hands:
Ok, this is definitely nerve damage. I am sure of it. I drank a fizzy diet drink last night and BOOM! Burny pain. Looked this up, and sure enough artificial sweeteners aggravate nerve pain. Plus, my hands are now itching at times rather than sore - a good thing because it's a sign of healing.

Now, go with me here. I have had 2 skin rsshes, and on two occasions a tiny spot appear on my left hand that looks like a chicken pox. For real! I have wondered if our immune systems are so out of whack they are throwing up any defense mechanism including old memory cells (creating other virus symptoms). I also read that burning pain can last long after rashes or chicken pox...but will heal.

@LetsBeSensible I am glad you're getting over your obsession, I have long lost the oximeter one. It's so liberating! If you test at longer intervals hopefully your peak flow will increase, and you can take heart there is improvement. We will improve...;) xxx

@AndsLee great news about the itching, in my experience that has been linked to less pain. I had a patch on my face which normally burns start itching yesterday and I was jubilant

Very interesting about your ectopic heartbeat. I got my husband to do my pulse when mine was bad (he is a doctor, bowel surgeon though!) and he said he thought it was an ectopic beat. I haven’t been for ECG yet.

@BeautifulPark sorry about your cat, pets are family

In other news (endless tests!) had a call from the doc yesterday, my results came back as high for inflammation in my intestines. So it seems my immune system did go hella crazy over my stomach bug. Retest and then possible referral...

Sending good wishes for a bearable day for everyone

@Criticallythinking high 5's her journey buddy See, same point in the path...:)

@MillStone do I remember correctly that you were referred to a post covid clinic?
I've been referred to one now. GP only heard via word of mouth. Hoping it will be useful and the wait won't be too long.