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

I’m having my first relapse this weekend since early Sept. Good luck to everyone still affected

Thanks @LetsBeSensible. I’m so sorry about your appointment.

@LetsBeSensible that is absurd!! How frustrating. I hope you don't have to wait too long to get a new appointment.
@Fishflakes sorry to hear that, what are you experiencing with the relapse?

I'm feeling a bit worse at the moment, noticed the impact of reintroducing sugar and a few higher histamine foods on my palpitations. I didn't wear the compression stockings either today and have noticed how much more fatigued I've been and my legs have been hot and aching when I lie down.

@LetsBeSensible
So sorry to hear about your appointment. Very frustrating. Hope you get something sorted.
@Fishflakes Sorry to hear about relapse. For some people they tend to be every 8 weeks
dating back to date of first infection. Do you find that?

Afternoon all

So, I have been taking Clarityn now since last Saturday, now on day 9. I have to say, I definitely feel a difference. The "breathing though dust" sensation is disappearing (I can still feel it slightly, but the antihistamines are masking it). I have had no heartburn, taking Apple Cider Vinegar each day and night. I have been trying to eat low histamine foods, which I think is also making a difference. The burning sensation in my skin sometimes still pricks up, but far less intense, and I have noticed that the weird temperature rise (without fever) that happens at 4am each morning is also lessening.

On Friday, I felt normal. Like, actually normal...

@Kitcat122, will be interesting to see what your experience of the Covid clinic is like.

I'm still part time at work but have a very tight chest at the moment and can't seem to take a deep breath. I'd like to try an anti histamine but I'm so scared of the reaction. Also getting a flu jab on Thursday - gulp!

Hello @AndsLee I have also been taking Loratadine (Clarityn) for around 7 days after seeing your post and I have also been doing better. I got my first normal period since July and although I’m still having some symptoms I’m feeling so much more like myself...

I dare not believe it to be honest so I’m braced for relapse

@Fishflakes sorry to hear you’re visiting relapseville, it’s just rubbish. I try to remember “this too will pass” and so far, it has! I wish it would pass and then keep going rather than becoming a regular visitor though.
@AndsLee our histamine correspondent- all sounds very encouraging for you! How is your energy out of interest?

I had a great day, the nice lady at the GP sorted it all out (so you definitely didn’t register at a different surgery in the last month? Because you’re showing as if you have) flu jab booked for tomorrow and a promise to resend my CFS referral. Phew!

@LetsBeSensible good to hear it was sorted, hope you don't need to wait too long for a new CFS appointment

@Criticallythinking and @AndsLee I'm encouraged by your positive experience on loratidine. I've not been taking antihistamines and been trying to reduce levels through diet. I might try loratidine as well after I've had by upcoming hospital appts. The diet is really restrictive too so difficult to follow beyond the highest histamine foods and histamine liberators. Lots of seemingly healthy foods are banned. Interesting though that almost my entire diet was full of high histamine foods. It's as though I prefer them - generally they seem to be the most highly flavoured foods.

@LetsBeSensible My energy levels feel normal for me. I have never really been affected by the crippling fatigue element though. I do feel like I am able to do more tasks in an one-er if that makes sense at all? For example, when once upon a time I would give myself one task a day, I now feel I am functioning fairly normally. I am working full time, and at my usual capacity.

@Criticallythinking I always had a hunch the gut was the key to this. I know the antihistamines are doing some good, but essentially I think this is all to do with gut health. Today I have started taking DAO supplements to see if this will assist. I intend to do this for a week and see what happens.

I feel the apple cider vinegar is working a treat. I think, essentially, what has been happening, is that some foods are not being digested correctly, and this is causing the histamine intolerance.

I do worry that the antihistamines will start to lose potency against the reaction, but if this happens I'll switch to fexofenadine.

I asked my GP for an allergy and DAO test, no cigar. He did prescribe me an epi-pen though! I have an appointment with the Infectious Disease dept coming up some time soon, so I might ask them to refer me to allergy specialists. I think that is absolutely what's needed now, allergy and gastrointestinal investigation.

I do feel this is the right path...finally.

Hi all,

Its all gone a bit Pete Tong these past 2 days, chest cramps, fatigue & breathless.

Audiology last week, the appt began with the Audiologist saying "well, a lot of people were scared of catching Covid in March, and stressed. Tinnitus can be caused by stress"

I soon set the record straight on that one, got another appt nxt week.

@AndsLee my naturopath specialises in CfS/ME and her first line approach was to improve gut health and to improve digestion. Also to balance blood sugar with regular meals including protein. This has been very helpful for me.
In my reading on MCAS and HI I've come to understand that histamine is involved in the production of stomach acid. Low stomach acid can result from stress. Digestive enzymes have been very beneficial for me - I know that my digestion (and therefore uptake of nutrients) is improved by looking at what comes out the other end (sorry!)
My ferritin has also improved from 15 to 34 in just over a month. Taking 1 spatone daily but I am sure that improved absorption in the gut is also a factor.

Had a good phone appointment with the specialist cardiology nurse in advance of the tilt table test which is imminent. Who knew that my issues with gluten and hypermobility made me higher risk for post-viral POTS?! She said POTS is often seen after viruses and they are expecting many who have had COVID to suffer from it, but the majority don't seem to get referred to the right place. She's based in diagnostic cardiology in a specialist team.

She's said based on symptoms it sounds like my blood pressure gets very low on standing and pending tilt table results it is called orthostatic intolerance. Advised to drink 3L water a day and at least a teaspoon of salt.

Anyone elsewhere have high blood pressure. I went to have my coil changed and the nurse took my blood pressure and it was very high 😩. This is the first time it's been taken since before lockdown and Covid. Usually my blood pressure is very good. Coincidence?? Or Covid related do you think.

Mine has been high. Pre Covid had no problems...

Thanks @AndsLee. I have to go back Thursday morning 😱

Thanks @AndsLee. I have to go back Thursday morning 😱

Thanks @AndsLee. I have to go back Thursday morning 😱

Thanks @AndsLee. I've got the to go back Thursday and get another check 😱

Thank you BeautifulPark Is that a thing others have found then? FeelIng somewhere between bad and appalling for the first 12 weeks and then relapse every two months after that? That fits with me, fwiw.
Its around 8 weeks since last relapse put me back to bed (at end Aug/start sept). And before that I started to feel relatively better for the first time over July and August up until end of August. ‘Relatively better’ meaning gradually operating up to what felt like maybe 75-85% of previous capacity for basic exercise.. like going for a short walk without getting very out of breath and then being so exhausted I needed to lie down for hours, once it no longer needed to be the two days or day in bed exhausted..

Before that I was veering between feeling consistently crap or absolutely terrible since originally getting ill at the end of March. So over 12 weeks of illness on a 2-3 weeks severity cycle of bouts of being bedridden again. Wish I’d written it all down now.

I wonder what the ongoing duration/severity of relapse will be if this illness is something that repeats? Also..8 weeks from now is new year, as if Brexit, social distancing and economic disaster weren’t enough to worry about

AndsLee I tried a dose of Piriton on Sunday when I couldn’t get out of bed all day for headache and exhaustion. It almost totally cleared my headache and I got an hours sleep so I was pleased. Not sure what that means, if it means anything, as to whether this ongoing thing is auto immune/allergic in some way or the body responding to repeated coronavirus reinfection, or both?

LetsbeSensible thank you and best of luck with your CFS investigation.

Ernieshere I don’t know if I could have kept my cool with that helpful comment. Like a lot of people I’ve had new ringing and whining in ears lasting for seven months now. Obviously we’re all ‘just stressed’

Sorry to hear you’re feeling worse TiddleTaddleTat
My relapse symptom is mainly splitting headache, exhaustion, earache and neck gland ache, mild breathlessness on mild exertion- like talking a lot. Haven’t felt up to any exercise to test it further. Even mild stress makes it all much worse. So eg end last week Sat and Sun spent in bed, Monday off work sick, yesterday (Tuesday) worked a full day from home with headache and nausea then pretty much straight to bed again after working hours. Feeling better now after a solid sleep, no headache. Still have ongoing tinnitus, nerve pricking in toes and fingers now, plus very sharp random torso jabby pains. The ever expanding neuro symptoms yesterday included every few minutes lower eye lid twitching over a few hours which livened up the work Zoom calls. Also a new blotchy rash, I think it’s three weeks old now, down each side of torso focusing on hips and armpits into front of shoulders. So bloody weird. GP suggested unknown viral cause during video consult and suggested moisturiser. I asked if i should get a COVID test and they said no.

@Fishflakes Yes, I have noticed an 8 week cycle. But each time the intensity and severity declines. I doubt I have been exposed every 8 weeks to be reinfected though, so I wonder if it's just the body redoing a loop to finally reset. I notice Histamine production in the body runs in cycles per 24 hours, so perhaps there is a wider connection there spanning 8 weeks. Read up a bit about Mast Cell Activation and Histamine Intolerance. My theory about this is our stomachs and digestive systems have been put out of whack, and of course we all reached for the Omeprazole. This helped our symptoms, but actually our stomachs were low on acid rather than high. This results in foods not being digested correctly, which creates a build up of histamines...

I believe the virus is long gone. I believe we have been left with heightened allergies. I also think gut health is the key. But I could be wrong.