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

Honestly people like you annoy me. It sounds like your doctors have a battery of tests and yet you still complain noone is doing anything?
Long COVID is known for being almost impossible to treat. That's why the vaccinations/ social distancing / lockdowns were and still (imo) are important.
Sounds like your doctors have done more than most. You sound extremely ungrateful. No wonder the NHS Is on its knees

@ranoutofnamesss i know you said you were on antihistimines but have you tried mast cell stabilisers as they might be better with having mcas, also autoluketrines (spelling is probab,y wrong sorry)

Ps I don't think it's a mental illness. But I do think you are being unreasonable to expect the medical field to find a cure for such a complex and unknown condition so quickly. Its likely to be years or longer until they do and unfortunately until then people will have to learn to live with their symptoms

[quote Toomanyradishes]@ranoutofnamesss i know you said you were on antihistimines but have you tried mast cell stabilisers as they might be better with having mcas, also autoluketrines (spelling is probab,y wrong sorry)[/quote]

Op hasn't actually been diagnosed with MCAS. A passing convent was made that it could be which is nowhere near an actual diagnosis.

Self treating fur conditions you do T have is dangerous and bordering on FII.

@CorrBlimeyGG

I believe what you're going through, and I believe it is related to covid. What you're experiencing with regard to getting treatment is what millions of people with long term health conditions have experienced for years. Yes, we are just being left to get on with it. It's shit, but this is the reality of life with disability.

This ^^

@Toomanyradishes Yes, I’ve wondered if I should, I need to have further testing to see for sure, but it’s all so complicated apparently, it’s hard to know where to test next and what for tbh. It’s draining. My next test is at the end of the month on my heart as I still have soreness/strange feeling around and sort of behind my left breast bone

@Traveller3367 Are you actually serious? Do you have any compassion? To post something like that

@Traveller3367 And the nhs is nothing to do with my situation. I live abroad and have done the majority of tests paid for privately, which is an added huge stress

@chequerboard i wasnt suggesting she self medicate, these arent over the counter tablets, she would need a prescription and therefore a drs appointment. I have horrendous allergies and when i had a flare up a dr suggested mast cell stabilisers hence my suggestion, i assumed the op would then take it to the gp. Jumping to a conclusion that she would self medicate on the advice of a random on the internet seems a bit of a wierd and unwarranted jump to make!!!

@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

Yep me too. Sending loads of sympathy and empathy OP. Also 19 months in with this, currently feeling comparatively well but waiting on tenterhooks for the next relapse. It's changed my life, 😕

Also the op literally said she was told by a dr it was mcas, only you have interpreted that as a passing comment, not the op. You seem really hostile, are you sure your mental health is in the right place for this conversation @chequerboard

@Norugratsatall So sorry, wears you down, doesn’t it. Have you improved at all? Are you able to live in a normal way most of the time? What are your remaining symptoms?

@Toomanyradishes

Also the op literally said she was told by a dr it was mcas, only you have interpreted that as a passing comment, not the op. You seem really hostile, are you sure your mental health is in the right place for this conversation *@chequerboard*

OP said "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. "

That is not a diagnosis of MCAS.

My ex husband had a confusing ‘illness’. So many random symptoms. So many tests. In the end the doctors said it was anxiety. He refused to believe so many physical symptoms could be manifested by anxiety. A few years later he accepted it and sought help and has mostly recovered, although every now and then he still takes himself off to A&E in a panic.

@Ranoutofnamesss yes I’ve had endo and fibroids. But never had hormone imbalances, although have underactive thyroid. I’ve had various tests at the hospital and been under Long Covid clinic, but they are at a loss to how to help me.

@Noapplejustcrumble Crazy isn’t it, there’s so many in the same way, previously fit & healthy
I used to feel so alive, didn’t have flu for over 10 years, much less a proper cold, never really ill, aside from hormone things & kidney stones and now it’s a myriad of things.
How old are you if you don’t mind me asking? Are you on the pill? Ive read about about some women feeling much better after being back on the pill (I think) progesterone? Ive wondered it myself, but I’m 43, so 🤷🏻‍♀️

Ahh right so lengthy discussion = passing comment, good to know

Given the criteria for the diagnosios of mcas (in the uk at least) is

The current consensus criteria for diagnosis include three elements: 1) symptoms of mast cell activation in multiple body systems 2) a response to anti-mediator treatments (antihistamines, anti-prostaglandins, anti-leukotrienes, and/or mast cell stabilisers) and 3) elevated mast cell mediators during a reaction as compared to baseline levels when no reaction is present.

Im not quite sure why you jumped down my throat that the op doesnt have a diagnosis give point 2....

@flowersinthefireplace correlation does not imply causation

[quote Ranoutofnamesss]@Norugratsatall So sorry, wears you down, doesn’t it. Have you improved at all? Are you able to live in a normal way most of the time? What are your remaining symptoms?[/quote]
Not normal no. Quite restricted but I've learned to live with it in a way and can't remember a time where I felt really well.

I still have SOB, chest discomfort (had pleurisy for months), fatigue and weakness, inflammation under ribs and stomach, nausea etc. The neurological symptoms were the worst though. Blurred vision, tinnitus, terrible brain fog, feelings of dread, insomnia etc. They've abated (for the time being). But no doubt will be back.

Sorry you're suffering too. Have you joined the FB Long Covid support group? I've found it a great support. 💐

Op i am sorry you are getting a hard time from the 'ooh lots of symptoms you must have anxiety' brigade

A family member developed ME back when it was called yuppie flu and was treated with contempt (even more so than today) so I recognise some of the behaviours on here

Have you tried keeping a diary to see if you can discern a pattern to the symptoms, for example if its hormonal it might have a pattern but might not be immediately obvious if its not linked to your periods. Have you had 24 hour cortisol tests/testing for your adrenal gland

When you say your thyroid tests are normal those tests have a range and sometimes people feel ill at the extermes of the 'normal' range, so its worth checking if you are close to falling outside of normal

Im sorry i dont have any other suggestions but i really hope you find an answer

Sounds like you have a few things going on.
You had covid not long having baby--many of your symptoms may be attributed to postpartum factors (hair loss, for instance). Tiredness could be related to, obv, having a toddler.
You likely do have long covid. And as PP have suggested you could be peri-menopausal or autoimmune too.
I'll throw in mental health element too (it's all related!!), which you could seek therapy for.
Have you had hormone tests?
You are doing the right thing about getting things investigated.

@Norugratsatall So similar to me. Learning to live with it, also can’t really remember the old me, I must have just felt so energetic and full of life and free, so sad. I think you may have been on the long covid threads on here from the start? (I was under a different name but may return to see if there’s any positive news from anyone)
I’m on quite a few different groups on Fb, it does help but I’m always trying to look for any positive stories of complete recovery etc

@28Ranoutofnamesss I listen to radio 5 all day, every day (although now back in the office so more often podcasts). They have always been very informative about covid, including lots of experts working during the accute stage and also those who are seeing the impact of long covid. Maybe see if you can find something on BBC sounds.

Obviously things are very new but long covid is very much a thing and is very debilitating. Some areas of the country have more support available than others. It appears that long covid can be an issue for people who are fit and healthy and had relatively few symptoms. I used to be a nurse and now work in frontline child protection. Most people I know caught covid due to work and unfortunately too many have ongoing health issues which fit with long covid. The physiology of this virus means it really can impact the whole body, not just lungs but cells and organs that keep us going. Scans and xrays of those who have needed critical care are shocking.

@Toomanyradishes Thank you so much for your help 🙏 I haven’t tried the cortisol tests, in what way could that help,
I’ve most definitely noticed a pattern related to hormones-pre period, during and around ovulation..but there’s also been days where it can’t be explained, it’s so hard

@Toomanyradishes

Ahh right so lengthy discussion = passing comment, good to know

Given the criteria for the diagnosios of mcas (in the uk at least) is

The current consensus criteria for diagnosis include three elements: 1) symptoms of mast cell activation in multiple body systems 2) a response to anti-mediator treatments (antihistamines, anti-prostaglandins, anti-leukotrienes, and/or mast cell stabilisers) and 3) elevated mast cell mediators during a reaction as compared to baseline levels when no reaction is present.

Im not quite sure why you jumped down my throat that the op doesnt have a diagnosis give point 2....

OK - so you think that because OP takes antihistamines and they make her feel better that equals a diagnosis?

That's not what the text you have copied and pasted actually says.