To think people like me are just being left to get on with it

[Ranoutofnamesss]

Had covid early March 2020, wasn’t terribly sick but slept through most of it and it was a strange experience. 6 or so weeks later I started with the oddest symptoms of my life, now have Mcas, most likely ptsd from the frightening experience it was and am not back to myself and wonder if I ever will be.
I can’t drink without a scary reaction, can’t drink coffee either, not much sugar, certain foods, feel easily tired, crazy depression and sadness at times…my body and mind isn’t my own..it’s 19 months now. I’ve had every blood test under the sun, chest scan, ct head scan, ecg..all ok. I, like many others, am not ok. I’m better than I was, but not ok. I feel as though I’ve just been left to my own devices, have had to research it all myself, am constantly booking my own procedures-heart eco end of the month as I still have a strange soreness around my heart area.
I have a toddler Dd and have to sit down after doing 3 minutes dancing with her.
Is this it for life now?
Can anyone help me at all, anyone medical or any positive news about this situation 🙏
Feel so alone in this, no one understands

@Redredwiney Yes, I know it’s long covid.

I’m not responding to comments implying it’s all in my mind or in the minds of thousands others. This is all frustrating enough without that. I don’t want to be stuck with a body and head that isn’t functioning correctly, I just want to be back the way I was. My symptoms and others are very real, it’s not anxiety or mental health issues. It’s not helpful to make that assumption.
People have no idea until it happens, they can’t possibly understand.

I am so sorry to hear this OP.
You have MCAS now, a physical illness, and possible PTSD, a psychological illness.
A very different situation, but I was very ill with a wholé range of physical symptoms. But I was dismissed by people like Bluntness. Until I was diagnosed.
I suspect like me you will have some symptoms that are clearly caused by MCAS, and some that are caused by the psychological issues. But it can be difficult to separate what is caused by which. And to a certain extent it doesn't matter.
My advice would be to stop seeking more diagnosis. Get good treatment for your MCAS and PTSD, and then see what symptoms you still have.
Good luck and don't assume this is your life now.

Ranoutofnamesss since having COVID have you taken any fluoroquinolone antibiotics at all?
I had COVID in March 2020 and I was very very unwell. My breathing was affected and I was on my own at the time, scared to go to hospital in case I never came out. I developed quite severe fatigue and my sense of smell seems to have been permanently altered. I am now slowly slowly improving.
I ask about antibiotics because I had all the symptoms you describe, but not from covid. It was a reaction to Ciprofloxacin which was prescribed about 10 years ago for a uti. After just 6 pills I had profuse sweating, peripheral neuropathy, depression, severe nerve pain, muscle wasting, hair falling out (most noticeably on my legs) brain fog, fatigue, plantar fasciitis....and on and in. It took two years before I started to feel somewhat back to normal.

[quote Ranoutofnamesss]@Redredwiney Yes, I know it’s long covid.

I’m not responding to comments implying it’s all in my mind or in the minds of thousands others. This is all frustrating enough without that. I don’t want to be stuck with a body and head that isn’t functioning correctly, I just want to be back the way I was. My symptoms and others are very real, it’s not anxiety or mental health issues. It’s not helpful to make that assumption.
People have no idea until it happens, they can’t possibly understand.[/quote]
I had intensive chemotherapy many years ago. It took several years for my body to recover. Doctors kept denying the symptoms I was experiencing were associated with chemo, but other chemo patients experienced the same things. I know it’s not what you want to hear, but it is very possible your body will recover, it just needs time and you’ll get there.

Covid and long Covid do have a bewildering range of symptoms but we now know that the virus attacks not just the lungs, but brain, heart, kidneys, liver, and muscles (hence the twitching). Massively influenced by hormones. Many questions outstanding.

Don't bother with graded exercise if anyone suggests it

Like you OP, I had long Covid from March until July 2020…A week ‘summer holiday’ in Polperro, Cornwall walking up and down those bloody hills 6x a day inadvertently ‘cured’ the worst of the long Covid. I still get symptoms but at least the breathing is so much better and energy regained. So maybe there’s something in that exercise programme?

@MagpieCastle Thank you, yes, at varying times, when I test and stand, my pulse goes over 30
There’s definitely an element of pots too. I was going to have the tilt table test, but it seemed to improve when checking my pulse

So sorry to hear what you are going through. I probably had mild covid at the beginning, at the time testing wasn't available. I spent quite a bit of last year feeling wrong (palpitations and tiredness) - i thought initially anxiety (definitely some of that), but more and more believe it was physical and just very odd feeling. Never know if it was long covid, but thankfully feeling much better now - when i had started having better days if realised how off i was.
I'm a biologist and have worked in virology for a number of years and cell biology of diseases. I'm in no way a medical person, buy can totally believe that this virus can do weird long term things to people (as a surprising number of viruses can) and the interplay between you body and it will to some extent be unique to you. Keep talking to your GP and maybe see if you can get referrals to different specialists, maybe endocrine (hormone) if you feel link to that. Try to do everything you can to live healthily, like cut out caffeine/booze (that appears to have stopped my palpitations) and get outdoors for gentle walks etc, but don't be hard on yourself if you don't manage these things. There is every chance your body will gradually repair itself - as a biologist I truely believe in the body's ability to do get better from a surprising number of things , but it may take time
Really wish you the best and so sorry again you have gone though this - this virus really has been rubbish for people in so many ways.

@DrBlackbird Yes, I’m ok with walking etc and getting on with things, if I do too much rushing around, I’ll sometimes feel it a day or two later and then won’t be able to do much for a few days.

Definitely some link to hormones, for me at least.
Periods v irregular now, the months I skip one or have just a one day bleed, I’m not too bad. During a heavy period or the first day of my period, my symptoms have been frightening-very tight chest, symptoms of high histamine.

I’ve always had issues with my hormones-endo and pcos and fertility problems. I wonder if this is why I’m so affected

@OrganicBagel Not had any antibiotics at all, I never take anything, one of those annoying people who never got ill. I hadn’t had a cold for years and years, built up strong immunity teaching little ones, no idea what’s happened to my body with this
I even have internal sort of tremors/shaking at times, it’s bizarre

As someone has mentioned it could be long covid. I know a couple of people who caught covid and months later they're still impacted in different ways. My cousin who had it gets regular chest pains months after, my friend gets brain fog. Could be a mix of long covid and also the experience it gave u which is more on the MH side. Combined it would drain u. U need to talk about it and how it impacted u and release ur emotions and also get checked for potential long covid. I hope u do feel better soon.

This sounds very like my friend who had Covid at the same time as you, especially the strange and sudden reactions to alcohol/certain foods etc and the ongoing fatigue. Have you been seen by a long Covid clinic? My friend has not found them particularly helpful as yet but the more sufferers that are registered and followed, the more information can be gathered and hopefully some appropriate treatment developed.

As other posters have said, you are not alone.

I've immense sympathy, as I have most of these symptoms - but only for a year and I don't have to run around after a small child any longer!
In my case it was definitely assessed as long covid (and for what it's worth, the assessor said I was not at all clinically depressed but understandably upset at how my life has changed. There's rather a difference).
I too am getting piecemeal assessments with nobody at all certain as to what to do next - and I've gone from being appallingly fit and healthy and active to an exhausted breathless blob.
For what it's worth, I keep trying to do a little exercise but listen to my body - while pushing back. Not too much, but turning up at the GPs periodically and saying "X, y, z haven't gone away yet. What now?"
Because otherwise they do seem to just hope that I've gone away or got better or something. And I haven't.

@Katy4321 Thank you and sorry you suffered the same, it gives hope that you recovered 🙏
I can’t drink alcohol or coffee, more so alcohol, I’ve tried with a tiny bit twice, but the reaction is pretty horrific
I’m living the healthiest lifestyle I ever have, but feeling the worst I ever have

I have a lot of your symptoms and wasn't taken seriously until I had a life threatening event and landed in a and e. Are you seeing a rheumatologist? I have a rare form of Vaculitis - definitely a physical disease but was dismissed by everyone before I became very ill. Your symptoms cross over with a lot of vasculitis symptoms, to the extent that I just looked up mcas and can tick every box...

@CuriousCassie So sorry you feel the same. Yes I feel like an exhausted unfit blob too, so much weight gain, hair coming out every few months, I look and feel terrible.
It’s too frustrating with the doctors, I ended up going private (I’m not in the U.K. and have health insurance, but it still can cost a lot) my next text is to look at the heart as I really can’t understand why I’m
Still having aches and Pains there this far along.
What are your main symptoms?

I'm so sorry you're going through this OP.

Sorry if I've missed it - I'm skimming through as it's late.

You say you've had scans. Does that include your lungs? Also, were they just standard scans? Some Long Covid issues are only detected with specialist scans.

Covid is an inflammatory disease so it's worth getting referred to a rheumatologist for a check up.

I hope you find a way to manage and treat your symptoms, and hope that things start to get better for you.

I agree with redredwiney that being properly ill can take a long time, even a few years, to fully recover from.

Aren’t there long Covid clinics being set up?

Look up some researchers, they may know of clinical trials or new support available?

You could try to get on some kind of specialist study or something. I honestly don't suppose much can be done to help if tests cannot find what is causing your problems. The body is a strange thing.

My Mum had this constant pain for a few years. They called it Fibromyalgia but that really just means pain that they don't know what causes it. A few years later she got diagnosed with Leukaemia and I do wonder to this day if she had that from the beginning. The body is a mystery.

Were you double jabbed?

@DynastyBarry I used to see it come up a look when I researched at the start, I definitely believe my body is becoming inflamed/is still inflamed. I’ve no idea how to check that?
I had a head ct scan back in June 2020, three months after covid as my doctor wanted to rule out Ms or brain tumour, my symptoms were so bizarre, he didn’t know what was going on, all was clear thankfully. He also ordered an x ray of my neck and throat as I had aching all over and inflamed neck, it did show arthritis in my neck, which was a surprise as I’d never experienced any problems with it before 🤷🏻‍♀️What’s the connection there? So many things were happening to my body, my veins were so prominent everywhere, I’m a person who they can never normally find a vein for when taking blood. It was like my whole body was reacting all the time and gradually it’s came down over time but still not right

@DynastyBarry Was your being ill a result of covid? How would they check for it? Will it show up on the heart scan? Sorry I have no idea and am so lost with it all

@Tealightsandd I had a chest x ray last summer, no signs of any problems

I'm so sorry you are going through this.

It might be worth trying a short course of antidepressants - at least it might help with the depression and brain fog Not saying it will, of course, but without trying one can never know.

@Tealightsandd Thank you 🙏 what will a rheumatologist be able to do?