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

@givemeanother I’ve also suffered with terrible back pain since this began.

The worst of the pain has been between my shoulder blades but also down my spine at times.

It’s been unbearable but now at 7 months it’s just sore and annoying.

My Dr said he thought it could be my brain receiving a pain signal and amplifying it. I get the same pains on my calfs but those too have subsided a bit.

I don’t know what the cause is but i see it mentioned a lot in the groups.

Thanks @MillStone, helpful to know. If I could know it was definitely the virus it would bother me less...my main anxiety from this has always been whether it's something else that I need looking at/sorting and then initially a lot of reluctance from the GP to do anything.

My shoulders have got a lot worse in the last two weeks which coincides with a relapse which I think was triggered by a big sorting out weekend in the house...but it could also be build up from working at home. Going to call the GP on Monday and see if they will refer to physio given the curvature we now know about in my spine...

I’ve agonized about having to post this but I’m hoping it helps.
I’m much worse today. Yesterday I did perk up, today when I woke up I felt really weak and couldn’t stay awake. After some food I dropped off for an hour. I don’t have a temp (36.9) but I am sweating. My chest has started hurting and my breathing is not great. My nose hurts and is stuffy.
I guess I will have to see how it plays out. Today does feel like a relapse.

Oh I'm sorry @LetsBeSensible . I hope it's short lived and that tomorrow you're back on track again 💐.

@LetsBeSensible, sorry you feel so awful today, just remember we are here for you and we will all come through this together one day

Do you think this is the flu jab side effects? If it is, tomorrow should be much better and you will feel safer knowing you have had the jab

@LetsBeSensible I hope this is something that passes quickly for you. Try to rest and drink lots of water, up your vitamin D. May it be a cold and not a full relapse...but even if it is, it will pass.

@LetsBeSensible sorry to hear that. I really hope it doesn't last long. I've heard that people with ME can have additional symptoms with the flu jab, but it's got to be better than catching the flu. Hope you can rest and be cared for until you're recovered.

Thanks all. I’m certain it is the flu jab. I’ve never been this ill from it before. Plus today is similar to April/May covid. Just hoping it passes and yes, telling myself it’s better than actual flu.

@LetsBeSensible, can you take paracetamol & ibroprufen until this passes, dont wait for it to get bad before you take pain relief .

@LetsBeSensible so sorry to hear this - it does sound like it could be the flu jab. Hope you get lots of rest and feel better soon.

@Ernieshere I use the Oestrogen gel, I rub it on my inner thighs after I’ve had a bath in the evenings, so around 10. I hope the pill version works for you in time, it might take a few days or a week.

@TiddleTaddleTat I had no idea palpitations could be a side effect of valerian... I used to be able to take it with good effect, but actually since Covid it does seem to give me palpitations too. Sometimes just taking one herbal Nytol has been working ok, but valerian on its own provokes a really weird, hyper response now.

That’s really interesting about linking palpitations and valerian, definitely something to watch out for. I hadn’t noticed that particularly but I do get palpitations anyway pretty much whether I drink valerian tea or not.

Also a familiar-sounding (from the symptoms) article from a BBC journalist about her long COVID experience:
www.bbc.co.uk/news/uk-scotland-54793726

@Ernieshere thank you! I’d taken just paracetamol but I added some ibuprofen and it’s made a big difference. Sometimes you just need someone to remind you!
I think the two have killed off the mad sweats. I’m starting to feel tired so I’ll go to bed shortly and hope to sleep through. Thanks all!!!
My little immune system is just pathetic

@Fishflakes @Whatapickle78 I don't think it's a common side effect, and stopping taking valerian has not stopped my palpitations. According to my naturopath some people do get them with valerian unfortunately.
I'm just drinking camomile tea before bed. Got some nice whole flowers to make a really strong tea, which seems to help.

My back and chest burning have been intermittent over September and most of October. The last few days it has really ramped up, now burning that lasts half an hour to an hour at a time. Goes away for a while then starts again.

Teenage Ds was sent home from college on Tuesday past to self isolate as he spent the Monday sitting beside someone in class who tested positive.

He is fine, but I seem to be getting a resurgence of symptoms, including headaches and body fizzing.

I’ve been following the thread for a long time now, whilst I don’t wish this on anyone it has been a comfort to know I am not alone in these debilitating symptoms that wax and wane (unfortunately more wax at the mo )
To some level I’d like to ignore this but at the same time has anyone felt they can match a diagnosis to anything eg ME, POTs? I had always assumed I wasn’t tired enough for ME but hadn’t really realised all the other symptoms, of which I match.
Hope the reaction to the flu jab dies down @LetsBeSensible, gentle hugs to you and positive thoughts

Thanks @pasinphoebe. Today I do feel “less ill” but would not say I’m better. Aunt Flo is due in 6 days so she’s started sending reminders.
I’m going to keep up the paracetamol and ibuprofen regime today and take it easy. I have actually got a bit of a bunged up nose so it’s possible I somehow caught a cold when I went for the flu jab I suppose? Seems like the kind of calamity that could happen to me!

@Tootsey11 oh that sounds grim. Do you think you might have picked up Covid? Worth a test if you can get hold of one.

@pasinphoebe in the process of trying to find this out myself. I'm being assessed for POTS or another form of orthostatic intolerance (OI), as well as adrenal insufficiency, this won't exclude ME/CFS but there are treatment options (and so far I have seen a lot of progress when I've followed them anyway) however still waiting to hear results.
It's worth trying some of the simple non pharmacological treatments if for example you think PoTS sums up your symptoms (eg increasing water, wearing compression tights) or MCAS (low histamine diet, antihistamines) to see what you respond to. Worth talking with your Gp or consultant first though as some are contraindicated for other things, eg salt and high BP or antihistamines and palpitations/heart rhythm disturbances.

Hi all, had such an epic sleep that I can see I will be up all night...
I’m certainly better today, have done a bit of housework which is always a good sign.
Whilst I remember, I had the flu cell vaccine which isn’t live but is a new way of making it grown in cells rather than hen eggs. I will be interested to know if there are stronger reactions to this type from non long covid s.
And it’s still better than having flu!

@LetsBeSensible glad to hear you had a good sleep and are feeling a little brighter

I'm still very fatigued following my hospital tests, I have back symptoms that I'd managed to get over - chills, heavy aching legs and proper significant fatigue. Just trying to take it easy. Have my cardiology follow up call with the specialist nurse in early Dec so will hear results from tilt table by then at least. Feeling impatient to hear, thought

@Tootsey11 I hope you feel better soon. Definitely worth a test if things don’t improve. I have been dealing with long covid since march and have been intermittently posting here. I was recently reinfected (tested positive). My son was sitting in front of someone coughing in his class who tested positive. I am thankfully through the worst with fever and sob, but fatigue and POTS type symptoms have flared up.

For those of you with POTS type symptoms, did your GPs help or did you ask for referrals?

@Monty6 I reported the heart symptoms to my Gp (she also witnessed my heart getting to 135 from mid 70s during an in-person appointment) she referred me to post covid clinic who then arranged the tilt table test.
If you look on the pots uk website there are a list of consultants who specialise in POtS - hopefully there will be someone in tour area. From what I understand PoTS and CFS commonly coexist but PoTS is sometimes misdiagnosed as CFS. It's definitely worth trying to find a specialist (usually cardiologist) as there are treatment options.

@TiddleTaddleTat thank you. I will try again through GP. Sadly no sign of any covid clinics in my area and the local POTS specialist is not taking new referrals. I suspect I might have to travel further afield and possibly even go private.

Thanks @TiddleTaddleTat I was back at the doctors today and been signed off as unfortunately I cannot work whilst my heart is racing and I’m so dizzy (I work in a job where I’m moving around and on my feet most of the day) No mention of POTs as yet but the doc is trying to work out how to lower my heart rate. It would great if that would reduce my terrible headaches that never go away .
Glad you’re a little brighter @LetsBeSensible. Rest and rest seems to be the key.

@pasinphoebe
@Monty6
there's a GP guide to POTS at www.potsuk.org/gp_guide
There's a standing test the GP can do with you in person using a blood pressure monitor that will give an idea of what's going on.