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

@mellowgreenspring hello and very sorry to hear this. I have had exactly the same experience in terms of severity of relapse when my son got a cold. However I’m just over 2 weeks in and it’s not lasting (so far) as long as the first one and I am functioning. So have hope! It is going to be a long winter for us all. But over time we get better at managing it I think?

@mellowgreenspring sorry to hear this , it sounds tough. I have heard about some friends with post covid syndrome finding that catching a cold has quite suddenly improved their symptoms , and others where it has made things so much worse. It just adds to the unclear picture about what might be going on. It really feels like each day needs to be taken as it comes, one at a time.

Just a quick note to say I've been for blood tests this morning, including ANA for the first time. Interested to see if anything comes up, the nurse said would be 5+ days before results get to the hospital. Hoping I can request a copy from my GP too as want to see if my ferritin levels are still low - I think a lot of my fatigue symptoms may be related to iron deficiency.
Seeing good effects so far from naturopath supplements.

@mellowgreenspring I've had exactly the same recently - have had both my boys home from school with sore throat/cough and it has made me have a big relapse and my burning lungs came back too, I lost appetite, had palpitations, temp, blotches on skin and burning body sensations and ended up thinking covid was back. We all tested negative but I was really worried. Hope you're feeling better

Sort of on the relapse theme, has anyone had any advice about long covid and the flu jab? I guess we'd best avoid catching the flu but not sure how my immune system would react to jab. Does anyone know? Might ask my pharmacist.

@emoojoo I've been wondering about the flu jab myself. My pal, who is a pharmacist, has recommended it. But... I also have the fear about what it will do to my immune system! So hard to know! Glad your tests have come back negative though! Half confirms for the rest of us about relapsing if we catch a bug...

I really don't know... I thought I was beginning to have a relapse on Saturday. My fella had a wee bit of a bug I think, and I honestly thought the Covid symptoms were starting again, but it seems to have cleared now. To the point that...I don't have burning skin! And, I think the "breathing though dust" thing is much less! I really want to say I feel better, but know that might come and bite my ass! One day at at time indeed! It's all so bloody odd!

@TiddleTaddleTat Let us know about your ANA...?

@TiddleTaddleTat For me, I feel all of this is narrowing the picture rather than expanding it... 2 things, either:
Symbiotic infection or Autoimmune response. It has to be. And the fact that we are reacting to new invaders, makes me think Autoimmune... But what exactly if ANA tests are coming back negative? This is why I am so keen to have a CH50 test.

@LetsBeSensible Thanks so much for starting another thread with all of the resources! So helpful. Sorry to hear of your ordeal, @mellowgreenspring. It seems that just as we think we are making some sort of linear progress, it slaps us in the face again, but I hope you'll be on the up again soon.

@LetsBeSensible No worries! I’m
completely the same 🙄

Day 3 if possible relapse, well worsening of symptoms..the return of the morning dash to the toilet, aching everywhere, vibrations in head/face/mouth.

Does anyone else have almost constant feeling in the throat of dryness/needing to cough? Has been so long with zero improvement in this area, just so sick of it now, don’t understand it at all..7 months..! 🤷🏻‍♀️

That's for the new thread. @Mellowgreenspring my children brought home sore throats with cough and cold and I too have suffered a return of the burning lungs and shortness of breath. Hoping its just a temporary weekness in my lungs.

Hi everyone
I posted couple of weeks before about burning skin and bad knee pain. My Gp gave me gabapentin 100mg one three times a day.
Been to rhumetology doctor, he listens me saying all the symptoms and about covid.he checks knocking something on my joints and told me nothing to worry about and just to carry on taking gabapentin 3 times a day two 100mg. As it says on my referral letter my antibody test is negative,he said this is not covid but you may had other virus and is after effect.🙄
Since march I had all symptoms below and what I have tried,which might help others.
Fatigue (full blood test done,very low on iron, taking iron tablets and now feeling better
Ear pain like very bad tinnitus (started taking turmeric tablet and is very less frequent)
Musucle twiches(tried magnesium oil, but no improvement)
Blood eye shoot or burning eye(still everyday)
Mouth ulcer(nyston drop)
Acid reflux (omeprazole)
Rashes like chicken pox came once gone and came again and gone.
Feeling itchy on whole body is gone and now my skin is very dry everywhere.
Burning lung was in June and its gone now(chest X-ray clear)
Neck musucle restrain back in may is gone
Tremor and shaking body (still sometimes)
Breathing dust came in around July and is gone after two week
Very bad joint pain on my left hand,could not lift a box is gone now.
My ongoing symptoms
Very bad burning skin, followed by knee pain, it was so bad that I could not stand and feel like I can't function. Gp gave gabapentin which only helping to kill pain but symptoms still here. Seven months here.

@Criticallythinking and @AndsLee
When you have burning skin, Do you feel something dripping inside?
I don't know I feel something driping inside the body.
@criticallythinking
How long did you have gabapentin?
Did anyone had any other test for burning skin or nerve pain?
Hope we all get well soon.

Hi @Beautifulpeople I am still taking gabapentin and I take a very high dose of 2700mg a day across three doses. I’m actually trying to reduce it at the moment. For me the nerve pains used to feel like someone drilling into my arms at the joints and it came in waves but now they still come in waves but feel tingly and radiate outwards. It is such a bizarre feeling. I also get the most awful wracking bone pains in my shoulders at the same time. A new symptom for me is tingling hands. I also get tingling all over my body towards the end of a relapse. All very bizarre. I get tingling round the right hand side of my mouth and in two of my toes which comes back with the relapses. I haven’t had any nerve tests but lots of blood tests which have shown some anomalies so having more tests.

@Criticallythinking do you mind me asking what were the anomalies found on your blood tests? Totally understand if you do not want to comment though so feel free to ignore!

@Beautifulpeople good to hear that you are seeing a benefit from supplementing with iron, and turmeric for the tinnitus. Which iron supplement are you taking and how long did it take to feel an effect?

My naturopath / nutritional therapist recommended spatone which I'm on but it's a very low dosage in mg but apparently well absorbed. My ferritin (stored iron) was 15 on last GP ordered blood test in July (range starts from 15) and I think it'll probably be even lower on today's. I do think iron deficiency is a factor in my presentation, and any previous deficiencies have been exacerbated by the virus.

I decided not to have an antibody test added to the blood tests because I knew that if it came back negative it would be used by the hospital doc to display I couldn't possibly have had COVID. This is illogical because taking the test 6-7 months after the initial infection lacks validity so is pretty meaningless. They are also calibrated for those who were admitted to hospital and often do not show positive among those with initially mild symptoms.

@@TiddleTaddleTat sure, I had low c4 and borderline c3. My calcium is sometimes low (3 out of 5 blood tests). It goes dangerously low not just a bit low. Not blood, but my calprotectin was high for a while but has now come down.

@TiddleTaddleTat
My dr gave me ferrous Fermat 2 times a day for three month bcz I was borderline low.
Yes I agree with you not a point to have antibody test.
My gp was not doing anything and he was not referring me anyone bcz other test were normal. so,he told me if you want referral, you have to do antibody test. I am wondering here how other poster get to see so quick so many specialists? Even with rhumetology I have to go private. He still saying no antibody means can not refer to covid rehab clinic.
@Criticallythinking
I feel your pain.
I m having same issue different way.
I m having burning skin since march and is still here getting worse. Do you think increased dose will help?
I ask my gp today and he was telling me something about fibermylogia. Which test shall I tell him to do next? I don't know what to do now. someone on here saying burning nerve pain means getting recovery phase is it true?
You lot have so much knowledge about all kinds of test and medicine. I am learning from all of you.
God give us all strength💐

Thanks for the new thread @LetsBeSensible and for the resource list! Very helpful. Sorry not read through the posts for several days. Had a dreadful relapse last week. Feeling better this week but oh so tired! All I want to do is sleep all day. Hope everyone is ok and steadily improving.

Sorry I forgot to mention diarrhoea in my list of symptoms
Continued for 1 week in the morning last month and it settled itself
I make sure to have in the morning in different intervals one glass coconut water,one glass orange juice,one glass pure drinking yogurt and one glass milk. Don't know what else I can add?

Sorry to hear about your experiences @TiddleTaddleTat - it's so frustrating.

I too am dreading getting the usual coughs and colds as my chest and throat feel so tight and weird. I'm very tired too but luckily sleeping okay. My phased return to work is ending next week so goodness knows how I'm going to cope full time during this winter. The only good thing for me is that Covid isn't being counted on my sick record so if I do get ill again, I can take time off with only the pay penalty.
I'm on high doses of Vitamin C, Zinc, Magnesium and VitD3.

I will be getting the flu jab but just going to check with the doctor when I have my next respiratory appt on 8th October.

Hello all,

Lots to catch up on again, always helpful to hear how others are getting on.

I am now back in a relapse like I last had in July, thought I was past this kind of relapse, as had only really been getting post exertional setbacks rather than full on relapse.

But temp back up as far as 38 and with 2 kids in school I have had to get a test (privately as NOTHING available on gov.uk). Gastro issues back with abdominal aches and pains, awful reflux keeping me up most of the night, chest tight/heavy and the teeny tiny almost unnoticeable tickle in my throat. And exhausted.

I am assuming it's a relapse and not a new infection (not that I ever tested positive previously), but we're cancelling all weekend plans and isolating until I get my result. Kids are so fed up. So am I.

Just had a breast clinic appointment come through (yet another part of my body that's falling apart) and it's on my younger DD's birthday.

Urgh. Rant over. Sorry to hear some of you are still suffering with burning skin and awful pain, thankfully not things I am having to deal with at the moment.

Thanks for listening, I think everyone in real life is fed up of hearing about my various ups and downs!

@seriouslynonames
Sorry to hear you are juggling so many things at the moment.
I think in real life everyone is fade up hearing me including my doctor. We all can listen to each other here.
This time will pass soon.

Hi everyone, I had some of my blood test results back today. It's come back with very high bilirubin and very low cortisol. The Dr is querying adrenal insufficiency and the result is much lower than the bottom of the range. I don't know much about this and a quick google scared me so I will wait until I talk to the Dr again. Anyone else had this tested?

Hello everyone, I joined this club in March.
I am getting better and better as long as I don’t overdo it.
My main symptoms that I have left are intermittent tinnitus, a slight head buzzing which is definitely background now. I can mainly ignore it.
Odd random bouts of nausea lasting an hour or so.
Skin coloured weird bumps on my legs that itch like crazy, I’ve drawn blood scratching them.
Any exercise brings back the underarm and chest pain with tachycardia.
I am doing 7000 steps a day. I can jog up the stairs. I can cook again.
Symptoms that have gone completely:

• fever
• chills
• burning face and skin
• arrhythmia, although I am on beta blockers
• fainting
• waking up gasping for air. I can sleep flat now, I don’t need to prop myself into sitting.

Another hello - I was on this thread under a different name back when it all kicked off - ill the week we locked down. I'm honestly completely back to normal, although it did take a good 6 months.
I'm even back to exercising properly, running twice a week and doing weights too.