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

Thanks @Beautifulpeople.

Good to see others recovering.
I am now starting to doubt myself and wondering if I have had something else viral all this time and only NOW have a covid infection, with the fever, ever so slight tickly throat and things taste unpleasant today. Although I have had exactly these symptoms before throughout all this I have tested negative each time (no testing available until I was 2.5 months in).
Gahhh have to wait 72 hours for test results...

Wishing you all restful weekends x

@ScottishDream Congratulations on a full recovery! That’s reassuring to hear. Did you keep having relapses as many of us did? What were your final symptoms and did they just stop or gradually lessen over time?
Anything you took/did that you think helped at all?

I’m still in a relapse (I think 🤷🏻‍♀️) since Tuesday, does seem to be easing a bit though, which follows previous patterns)
Still the morning dash to the loo and a very sick feeling this morning for an hour or so.
Always with the breathing through dust feeling and some pain in teeth and a little shakiness/vibration thing.
Going away this weekend (only 50 minute drive away) excited but also anxious as to how I’ll wake up in the morning.
This could never have been done even up until July, so there is progress.

So today... I felt great! I mean...actually great! Symptoms...very slight "breathing through dust", bit of back pain...but really that's it. My temp is up slightly, 37.2, but I don't feel hot. I suspect it's the natural increase because I must be due my period. My bruise is healing. The menthol skin cream from my doc has really kicked the burning into touch... I was really dreading having to take gabapentin. Can this be for real? Will it last?? I look bloody healthy! Pink! Under my eyelids is red and moist!

What have I changed...? Em...I started taking turmeric and am probably taking more dairy...

Can this be true??

Hope you don't mind me interrupting, I have no experience myself but have seen these threads. Just wanted to say, if you didn't know, that Tuesday at 11 there is a Radio 4 special about long Covid.

Hey @Crayfishforyou...good to hear from you! Also, thought about @egghead68 today...

@AndsLee
Feels so good to here that you feeling better.
How long r u taking gabapentin?
Did your burning skin gone?
Which week are u in?
Sorry for so many questions.
I m having bad day with pain on my left leg and knee despite taking gabapentin. I m now confuse is it something else or covid related.
Enjoy your day.

I am not taking gabapentin. I was quite fearful that I was going to have to take it. Of course, we all know that this thing can throw curveballs, so what's to say that isn't in my future. I'm 6 months in. Burning skin stopped this week I think, but had been winding down before. Think it's been aided by the dermacool cream.

@DappledThings thanks for the tip!
Hello to “old friends” popping in. Aunt Flo back in the house the old moo.
I have to say, for all my years of CFS and Fibromyalgia Gabapentin was seen as a miracle cure but it was hard to find a dr who would let you have it. I’ve seen people obtaining it illegally for CFS. Also after discussion with medical family members I decided not to pursue it.
So I nearly dropped the phone the other week when my GP just casually dropped in “how about a prescription for Pregablin, want to give it a try?” It must have come off license or got cheaper somehow in recent years as it’s now being offered left right and centre.
I’d say do your research to see if it’s right for you - I say that with everything I’m very risk averse- just because a dr offers it doesn’t mean it’s going to be right for you!

@LetsBeSensible Good advice indeed! This morn, still no burny skin, breathing through dust feeling ever so faint. Slept like a baby. Wee bit of a tickly throat but I expected that (fella had the same). Anyone else find turmeric a game changer??

@LetsBeSensible and @Beautifulpeople after seeing people post about gabapentin on here and several people telling me I should get off gabapentin because it makes you feel awful I discussed this with the GP this week as I have been on a high dose since April, without any ill effects as far as I can tell. Her view was that some people really don’t get on with it, but some people are fine and the ones who are fine don’t really talk about it so you tend to hear about the people who have a horrible time. I’ve still decided to reduce very gradually because whilst it helps when I am in relapse the rest of the time it probably isn’t as necessary. Apparently you can also take it as an acute painkiller which was reassuring.

It does take time to build up in your system so you don’t get overnight relief it can take a few weeks of adjusting the dose.

So in my view gabapentin is a useful drug and I could not have survived back in April/May/June without it. I guess you find out pretty quickly if it agrees with you or not.

Hope everyone has as good a day as possible.

Hi @AndsLee! So glad you are feeling good. Thanks so much for thinking of me. I just passed my 6-month anniversary and am “celebrating” with a mini-relapse (worse fatigue, chest pain, reflux, tachycardia, cough, headaches) caused by a 25-min jog. Fatigue and mini-relapses are ongoing for me. However I am functioning fine and I don’t think anyone else would realise anything is wrong with me (unless they could see how long I spend lying on the sofa). I haven’t had any contact with my GP since around June.

I hope everyone is doing OK. The Royal Society of Medicine has a video on Long Covid now. I think there’s a worrying trend of some doctors (particularly from a CFS background) continuing to say it is psychological and to push graded exercise.

Hang in there everyone.

@Egghead68 Is the video about the worrying trend, or feature doctors actually dismissing Long Covid as psychological?

@Egghead68 Does each relapse kinda decrease in severity? I find it does. Except on Monday I truly thought I was ill again. But that hasn't happened! I wonder if exposure to invaders has kick started my immune system in a positive way? "Out with you, bug! And while we're at it, out with any old, lying about remnants!"

Hi @AndsLee the video is a Q&A session with a doctor-sufferer, a GP and an infectious diseases specialist. The first two are very sensible. The third seems to be pushing the “in most cases it’s standard post viral fatigue caused at least in part by psychological factors and needs CBT/graded exercise” line (I disagree with this but who knows).

I would say in general my relapses have only been 1-5 days recently and quite mild (just extra chest pain and fatigue). However I have had a couple (including this one) where I feel I have active Covid again. One triggered an alert from the Covid symptom tracker to tell me to get a test!

@egghead68 sigh... How can it be psychological when such a broad range of people are reporting similar experiences of weird and wonderful symptoms, that can be compared to nothing else? It's not like there is a crib sheet to influence...these are symptoms we talk about, and then react to once we hear someone else has experienced the same. That alone is evidence that it's physical!

Exactly...

@Egghead68 Oh good grief! See, I don't understand how someone in the medical field hasn't suggested trying us with plasma. Most of us don't test for antibodies, right? Well, just give us some and be done with it! Probably far less harmful than drug treatment! And less expensive in the long run if we can all get back to functioning normally!

@Criticallythinking
Thank you for reply. I did not had enough energy to Post. My Gp said same thing as you said.
My burning skin was all over body since beginning. Two week before could not even stand,my knee was so painful that I have been to private dr to check for arthritis. He also told me to continue gabapentin so now I don't have choice.
@LetsBeSensible
I Agree though any kind of painkillers not good for long term.
@ Andslee
Can you please tell me exact name of cooling gel, I am going to try it. I am now worried that is only me here can not stand or function without medicine. Can nerve damage do this?dont know what to do next?😢

Long time no post from me...I think because I've been managing though I've still been reading all your posts daily.

Great to hear that some are getting better and for those of you not, I'd say hang on in there and try be positive as I think it will improve over time. I'd say now that 5 days out of 7 I have some sort of chest pain, reflux etc...but it's manageable and on the 2 days I feel normal. I can cook dinner now, do the odd bit of cleaning, have a big tidy up etc without a relapse. I have yet to brave any exercise beyond the school/nursery run though.

@AndsLee I've been taking turmeric (curcumin with black pepper to aid absorption) since July...I felt it helped...and I really felt b vitamins helped with energy. But I've no way of really knowing as I threw everything at my problems at once! I also take aloe Vera juice daily and when the throat feels furry a slug of apple cider vinegar in my tea (don't tell the dentist!)

@Beautifulpeople I can't answer your query about nerve issues I am afraid, I'm a historian! Haha. But in truth, this is a novel disease so even the medical professionals are baffled. Cream's called Dermacool.

@givemeanother I promise I won't tell, Brownie's honour...

Thanks @AndsLee

@Beautifulpeople I think my GP's theory was that if I was experiencing nerve pain (mostly on my hands where the rashes were), then the nerves can only send one signal to the brain. So, the cooling action of the menthol cream overrides the "pain" signal. Gotta say, he was right in my case. As far a gabapentin goes, as @LetsBeSensible and @Criticallythinking says is right, do what is best for you. I was/am scared of having to take it, but I am scared of a bloody Anadin! I just...won't take pills. In fact, that advice is good across all your symptoms. There is no hard or fast rule to this, we each have to find what works. Try the cream and see what happens.

Disclaimer: Except paracetamol and omeprazole. My saviour omeprazole. But before this whole Covid malarky I was pill free. Always had been bar the odd Rennie.

@ Andslee
Thank u for reply
I am same as you regarding taking medicine. This is why I am worried how long I might have to take this.