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

Back in late 2004 when we were mid 20s, Dh and I caught a horrible cold. Felt miserable for a few days then got better.

Except something went wrong with Dh. He had been a junior international at a sport (and was still the no 1 in the county at that point) but suddenly when he was playing he would suddenly end up collapsed on the floor with no energy. As in literally no energy. (One time one of the opposition players went to shake hands with him post match and Dh had to say “I would shake hands but I physically can’t”. One of his team mates had to lift his arm up for him.

He also had problems with his breathing.

We went through a battery of tests. MRIs, blood tests, muscle biopsies and nothing ever came out conclusive. At one point they were talking about motor neurone disease.

And then slowly, really slowly, he got better. By the end of 2006 (so nearly 2 years later) he was mainly better and by early 2008 we were at a point when we were confident it was gone.

We never fully discovered what it was but the rotten old cold in 2004 triggering it seems to be the only thing that made sense. It was scary though that a very very sporty, healthy 20 something could be so destroyed by what was just a cold.

I hope you eventually get better too.

@Sunshinealligator They’re not linked to it, it’s physical.
They say they don’t know what to give, they don’t know what to do, so many people with similar. I’ve waited it out for so long, can’t do it for much longer

I had Covid over Christmas last year …I wasn’t massively ill apart from exhaustion,loss of taste and smell. I am still traumatised by the fear of having Covid..scared that I would be one of the statistics etc …it was mentally exhausting and I now have not been able to think clearly and a definite brain fog …bloody scary .

OP ptsd responds really well to EMDR. Have you tried any therapy to manage symptoms until you can get other help?
PTSD is not as simple as just ‘traditional trauma,’ many don’t understand that.
I think because it’s all so new long Covid has no set markers so it’s hard to get 5he right support.
I would try again with the GP and reflect ‘what are we going to do now’, do we need you to refer me to... etc.
Not the best solution sorry.

That sounds awful op. It sounds like long covid, but from what i understand the treatments are very hit and miss. Would changing gp help?

The brain can affect so many physical symptoms, it makes sense to investigate the mental health side of things too, I don’t see a problem with what bluntness has written, it’s how placebos work anyway! Good luck op, it sounds awful- I hope you get some answers soon. 💐

@ineedsun Not patronising at all, so sorry you’ve been going through similar too. Are you feeling any improvement? Do you take anything that helps? I’ve tried every vitamin, low histamine diet, low inflammatory foods etc etc. I am better than I was, but my fear is I’ll always be like this. My Dd deserves a better mum. I was never really ill before this, I don’t understand it at all.
Also have the brain fog too and short term
memory is crap now, I used to be so sharp, I can’t teach anymore as my mind feels easily overwhelmed at times, if that makes sense

I guess the trouble is it's all so new isn't it. Poor you, sounds really horrible and depressing.

Bluntness you're being very tone deaf here.....

I agree with looking at advice for managing ME symptoms and post viral fatigue symptoms. Doctors are in the dark re long covid.

I think the problem is that even the “experts” don’t know enough about long covid or what to do about it. What you’re going through sounds absolutely awful, I really hope they’re working hard behind the scenes to come up with a solution to it. Viruses have been proven to have long term effects in some cases, look at glandular fever (that one done me up like a kipper 20 years on). You’re not imagining it, it’s just that they don’t know how to help you, I know it’s not helpful but I’d start trying to do my own “research”, trawling google (I know, I know - but sometimes it comes up with something useful). I really hope something comes to light that can put you on the track to feeling like yourself again.

Everyone used to think that ME was just someone being lazy
Can you imagine a world when sometimes things are diagnosed that no one used to diagnose
Mind blowing isn’t it…

@Viviennemary A lot of my symptoms don’t match the traditional post viral fatigue syndrome ones. I can be tired at times, yes, but I don’t experience the sheer exhaustion a lot do post covid. I’ll feel better for a bit (never 100%) but then some of the random symptoms will return, it’s as if my body is on a loop and can’t quite get rid of whatever’s making me ill. It’s hard to explain. There’s no rhyme or reason for the return of the symptoms, aside from a possible connection to hormones and times of the month.

Lomg covid comes under the post viral fatigue umbrella. Long covid is just trendier and people seem to prefer that label.

Mental health issues are often manifested in physical symptoms, similar to the ones OP is describing.

Hope you get the help you need OP.

@Phoenix76 Thank you 🙏
All I’ve ever done is researched myself.
Sorry to hear about the glandular fever, does it still affect you 20 years on? In what way? I’m frightened this is it for life now. I’m
43 but feel much older now

YANBU OP.
I got ME/CFS after a virus in 2008, and it's not that well understood, and people with ME/CFS are also largely left to get on with it.
It's part of the reason I am trying my very hardest not to catch covid as I am really worried what long covid might mean for me.
Hopefully some money will be thrown at research, and there are long covid clinics being set up - see if you can get referred in.
I know your condition is a bit different to mine, but the things that helped me most were keeping a symptom diary so I could start to see patterns and recognise warning signs (you don't always recognise it at the time because with PEM it can hit you a couple of days after you have overdone it) and pacing.
Don't bother with graded exercise if anyone suggests it.
I started to gradually feel better and then had a big improvement about 5 years ago, although I am not fully recovered and still have to plan around it, and still have some strange/uncomfortable physical symptoms in addition to the fatigue that they have never really got to the bottom of. I had a toddler when it hit too.

Hang on in there, hopefully you will continue to improve.

@Lightswitch123 You really have no idea

@User3456 So sorry you’ve had to suffer that. The thought it could take 10 plus years for me to possibly feel better makes me cry. I just want to go back to myself. Not to be dizzy after doing head, shoulders, knees and toes, to be able to enjoy a glass of wine or cup of coffee, without my inside reacting hours later, I’ve never in my life experienced such a vast range of odd symptoms. It’s like living in a nightmare

Not seen what Bluntness wrote as it’s been deleted, but she’s one of the few posters on here who doesn’t live in dreamland and provides a more logical point of view. Ironic that others are complaining about her when there is a mob mentality against her on here, verging on bullying… Pot, kettle, anyone?

OP - sounds like long covid. It is a thing that genuinely exists that doctors know very little about, which is probably why you’re getting no answers. I know that doesn’t help you, but there are others like you.

@Angrynellie Sorry to hear that, yes lots of relapses but not sure why. It can be much more than fatigue, can’t it. What symptoms do you have? I gave up on going to different doctors, they literally can’t do anything. I went private and spend a hell of a lot to try to get help..nothing they can do. My main fear is still having the strange ache in my heart/behind my left breast area still 19 months on.

Really sorry you’re going through this.

There’s been some recent discussion around long covid/post-viral conditions and a central nervous system reaction called PoTs.

www.medpagetoday.com/special-reports/exclusives/92861

www.dailymail.co.uk/health/article-10075495/Could-Long-Covid-little-known-nervous-problem.html