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

PTSD is also a massively physical illness, btw.

[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]
How exactly did you get diagnosed with MCAS? Were you atopic in other ways prior to contracting Covid?

It does sound like you're cherrypicking doctors in search of diagnoses, or possibly suffering a lot of health anxiety. The issue with health anxiety is that it doesn't resolve! You have a diagnosis now but you are still seeking investigations. Every test you have is amping you up more - either you get another diagnosis added or it's the risk of the test (e.g. radiation exposure) but you feel nothing was gained. This is a pattern you do not want to get into.

It sounds to me like your MCAS is under-treated. So I wondered if you were informally diagnosed by a PCP, or a non specialist? As an expert would normally put you on a lot more meds than just anti histamines.

You might possibly have post viral POTS. Sounds like you decided not to have a tilt? But you can self treat for mild POTS if you feel this is an issue that may be contributing!

Yes a new pair of medical eyes is what my advice would be. Even if you have to pay for it. Someone who can look at your whole history.

[quote Ranoutofnamesss]@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[/quote]
I won’t bore you with my life story but the summary is, had gf in my late teens. I was left with overwhelming fatigue leading to comments like, Phoenix is so lazy she can’t get up early, she always needs a nap - I genuinely believed that was true. In my mid 20s I was rushed to hospital on the verge of severe pancreatic infection due to massive gall stones blocking my bile duct, hcps couldn’t believe it as I didn’t match the criteria for it (their words were usually seen in overweight and over 40, I was a size 8 and in my 20s) eventually after several more hospital admissions each lasting a week they had to remove my gall bladder with stones the size of Brussels sprouts.

Still suffered incredible fatigue, general weakness and aches. Was given anti depressants. Fell pregnant at 36, despite my begging for help the midwife missed my oc symptoms, could have gone so horribly wrong. Second pregnancy oc back, couple of years after horrific symptoms similar to you, long story short was referred to rheumatologist and auto immune disease diagnosed and on meds. I hear you op and see several have recommended seeing a rheumatologist, that’s where I would focus on, changed my life.

I also had Covid pretty badly in March 2020, but thankfully I was better within weeks.

I think for those like me who had the ‘short’ covid, it can be difficult to understand long covid.

Maybe the human mind just doesn’t want to think ‘that could have been me’.

If you had Covid right at the beginning of the pandemic did you ever manage to have a test for it?

What do you mean by saying you’re booking all the tests/ doing it all yourself?

There were only about 500 confirmed cases in the whole of the UK by 15 March 2020

@Flowersinthefireplace Excuse me?

I had it, as did Dp. We’re not in the U.K.

Sorting all tests etc out means that I research everything myself & am in contact with many others on forums etc.
I go private with my insurance (still costing me a fortune) for blood tests, x rays, scans etc

@Phoenix76 So sorry you went through all that, are you better now? Definitely going to look into seeing a rheumatologist

@Innocenta Wasn’t prone to anything before covid.
I went to my doctor after a particularly odd night, with beating heart, adrenaline, swelling lips and tongue feeling etc. Lengthy discussion with doc, said it could have been mcas as can develop after viral infections and covid etc, said it was difficult to test for and so on and he wasn’t a specialist. I’m not in the U.K. so would have no idea where to go for that, if it ever exists. Researched lots and found many having similar reactions and followed the protocol of anti histamines and low histamine diet etc etc

@Lightsabre So sorry you’ve been through similar, are you better now? Did you have any treatments? What have doctors been able to tell you about it?

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."

For years people said this about M.E.

Medical science has moved on, more research has been done, and it's now thought to be a neurological condition, and all the medical advice eg to do graded exercise, has changed. They still can't cure it, but understanding it is the first step.

Science doesnt know everything yet. Just because the OPs tests havent shown anything wrong with her doesnt mean there isn't.

@Flowersinthefireplace Excuse me?

I don’t understand? Excuse you what?

@DrinkFeckArseBrick Thank you 🙏 me and thousands..millions of others whose bodies just aren’t right somewhere

@Flowersinthefireplace The implication being I couldn’t have had covid as ‘Only’ 500 reported cases at the time in the U.K.? First of all, I’m not in the U.K., secondly..reported cases.

Do you have any advice or no anyone in a similar situation? Can you help at all?

*Know anyone

@Flowersinthefireplace

If you had Covid right at the beginning of the pandemic did you ever manage to have a test for it?

What do you mean by saying you’re booking all the tests/ doing it all yourself?

In my case, I didn’t have a Covid test, but based on symptoms NHS 111 said it sounded like Covid, and it was the worst ‘flu’ type illness I’d ever had.

Did you have a Covid test in March 2020, OP?

@mountbattenbergcake No I didn’t

Well, if you’re anything like me, I’m sure you know it was Covid, although I can’t be 100% certain of course.

[quote Ranoutofnamesss]@Phoenix76 So sorry you went through all that, are you better now? Definitely going to look into seeing a rheumatologist[/quote]
Much better now thank you, wish I'd been as strong as you and believed myself knowing I wasn't imagining it all. It makes sense that a virus can be prerequisite to an auto immune illness. The anti depressants helped though, not with the actual illness but because of the way it made me feel if that makes sense. The rheumatologist sorted my physical problems out and it's been amazing. It had got so bad I remember crawling along my bedroom floor in agony with tears rolling down my face wondering how I would dress myself never mind my young daughters and once I'd started the correct medication it was like a rocket being launched, I felt like a new person. I'm 45 by the way.

Pre menopause symptoms?

@DrinkFeckArseBrick

I totally get where you're coming from - there's still a long way to go with understanding conditions like CFS (ME), Post Viral Fatigue Syndrome, fibromyalgia etc.

But while no one is denying there is a physical cause, I think it's worth also acknowledging that in many cases there is also a psychological element. That doesn't mean it's entirely psychological, but rather than there are psychological elements which can exacerbate physical symptoms.

As I said above, it's really not surprising when dealing with chronic pain/chronic illness that there is a psychological impact. You'd have to be practically a robot to be able to just shrug off the effects of managing chronic conditions, day after day after day.

A two-pronged approach is nearly always beneficial, addressing both mind and body together.

I'm in no way suggesting that ME etc is all in the mind, not at all. Just that many chronic conditions end up being complicated by mood disorders or other psychological factors and it really doesn't help to dismiss the impact this can have. OP seems enraged at any suggestion whatsoever that there may be some psychological aspect to what she's experiencing, alongside a physical cause - despite describing herself as having PTSD. Mind and body work in tandem and it's not that helpful focussing on one and ignoring any potential impact from the other.

So unhappy about all the posts saying that this is a psychological illness. Long Covid is real! Millions of people are suffering from this very real physical condition and dismissing it as a psychological condition is so harmful. People used to say the same about ME and it has been proved that they were wrong.

OP, I have had Long Covid for as long as you have and it is miserable. Like you, lots of tests and the majority of them have come back with normal results but I feel anything but normal. I have had some improvement in some areas (heart symptoms, lungs) but in other ways (mainly fatigue and stamina) I am worse than I was 12 months ago.

The one thing I have found that really helps is following a low carb, high fat diet. If you want to give it a try, Google keto and research how to do it healthily. You have to be careful with it and drink lots of water and consume extra electrolytes or it can make you feel worse. Cutting out sugar and most carbohydrate reduces inflammation in the body and as long covid is an inflammatory condition this really reduced my symptoms. I’ve just restarted it after 4 months off as I was feeling terrible and relapsing constantly when eating normally.

There are so many people who 'had covid' in March 2020.

Considering testing wasn't that much of a thing in March 2020 meaning there were a tiny number of actual confirmed cases at this point, it's fascinating that so many of them tend to be MN users.

That would not be considered an established diagnosis of MCAS by many doctors - I'm not saying that you don't have it! Just that I think the one doctor you do need to see is an MCAS expert, and actually go through the MCAS testing to determine if it's MCAS or a similar problem masquerading as MCAS. If you are not on the other MCAS medications, and it is indeed MCAS, then you are under-medicated, and seeing a real expert for thorough evaluation and treatment will probably help a lot.