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

My goodness @Bluntness100 your posts are always so horrible

PTSD from what? The MCAS symptoms?

How did you get an mcas diagnosis?

OP, I'm really sorry you're feeling crap

I have no idea if your symptoms/problems will improve. Have you got any support at all in RL?

I’m sorry I don’t understand the issue? There’s a very good chance if they have done every test then this is about mental health not physical

What’s wrong with that? Mental illness is nothing to be ashamed of and people need to stop acting like it is.

Have you looked into long covid? Similar timescales here and have the tiredness, pain, covid toe, brain fog, lung damage - all of which is really draining and depressing because your life is no longer what it used to be. Doesn’t matter that you weren’t hospitalised, covid is having some weird long term effects.

I don’t have any answers, just wanted you to know that you’re not alone. I’ve largely given up with medics around long covid, they’re in the dark too and I live in a small town with fairly minimal services so even the long covid clinic was a waste of time. Look at stuff around fibromyalgia, ME and chronic fatigue, they’ve been steadily plugging away with research and campaigning for years and there is a lot of commonality.

my word 😂

Do you think its possible that having covid itself, at a time when the news was very scary about the same illness maybe triggered something like an anxiety disorder in you?
I know you've mentioned PTSD, but maybe OCD or even GAD were triggered by being in a situation that was unexpected, and you felt little support in the situation at the time?

A lot of your symptoms you describe go along with OCD and GAD, either way, you need to speak with your Dr, explain to them that you feel that catching covid triggered something mentally and you need help.

Explain the things that you are struggling with. I'll warn you it's incredibly hard to get appropriate help, but explain in detail what you're struggling with for the most direct route to appropriate help

@Bluntness100 No, the after effects. Around 6 weeks later and onwards to this day in varying degrees, I developed twitching down my body, severe anxiety, shaking, sore eyes, severe dizziness, chest pain, aching in my body, swelling, hair loss, pale lips, low oxygen, sleep apnea, distressing nightmares, diareah and a whole other list of symptoms. The worst ones are the high levels of histamine/mcas symptoms causing the strangest reactions in my body mainly during my period now (if it arrives that month) has completely messed up my cycles. Fast heartbeat, redness, itching, anxiety etc etc.
The hospital doctor tells me it’s long covid, mcas and ptsd, I’m on anti histamines twice a day and have been for over a year, which can’t be healthy and no doctor can give me any help

Nope not getting it at all

They have done every test and found nothing physically wrong, which could indicate there is a mental health issue and that should be explored to help th op

Why do people act like mental illness is something to be ashamed of

It’s not.

@Sunshinealligator No, it’s all physical, if that makes sense.
This is the frustrating thing for myself and many like me, trying to explain this.

The symptoms of long covid, as with many other complex responses to viruses, are dismissed as 'mental health' by idiots.

I am glad that at least the hospital doctor sounds supportive?

Sorry I typed that really slowly and given your subsequent posts mine is really patronising

[quote Ranoutofnamesss]@Bluntness100 No, the after effects. Around 6 weeks later and onwards to this day in varying degrees, I developed twitching down my body, severe anxiety, shaking, sore eyes, severe dizziness, chest pain, aching in my body, swelling, hair loss, pale lips, low oxygen, sleep apnea, distressing nightmares, diareah and a whole other list of symptoms. The worst ones are the high levels of histamine/mcas symptoms causing the strangest reactions in my body mainly during my period now (if it arrives that month) has completely messed up my cycles. Fast heartbeat, redness, itching, anxiety etc etc.
The hospital doctor tells me it’s long covid, mcas and ptsd, I’m on anti histamines twice a day and have been for over a year, which can’t be healthy and no doctor can give me any help[/quote]
Sorry, it reads like you're having a really shit time,
If you've been diagnosed with PTSD are you being given any help? Lots of your symptoms could be linked to the PTSD, like the rapid heart rate, dizziness, nightmares, GI issues, chest pain. Even with those symptoms going you'd have a much better standard of life.

Are they doing anything to help with the long covid symptoms?

I know three people post covid exactly like this (all clinicians). No advice in afraid as we literally just don't have the answers - we have had updates recently from Consultants in various specialists and the prevailing advice is still trial and error because we are still learning how to help and the vast array of symptoms of long covid - which is utterly shit for those of you suffering.

There are various support groups so you know your not alone and can speak t on those who feel the same I don't know where you are but #beatcovidne was set up for this reason. You are not alone xx

@Bluntness100 if you don't understand the issue, maybe keep quiet?