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

Sorry @Ranoutofnamesss I was only a few posts into the thread when people were wanging on about "mental" not physical when MCAS is measurable physically.

I have HSD so see this mentioned as one of the things that sometimes come together. One of the academic papers I skimmed recently (linked from HSD charity I think) was full of technical stuff about you can measure X chemical at y concentration in the blood(?) when z symptoms happen.

A diagnosis from a dr should be sufficient. Check the bloody letter though as I was told they think I have something but the letter came back with a question mark. (Definitely HSD though)

My daughter had long COVID, young fit thought when she got it, the young are fine in two weeks she’ll be over it! How naive were we? It was very early in pandemic but there was zero support for her symptoms ( we know much more now. All the good advice in terms of looking after yourself, eating well resting when exhausted, if you can and gentle exercising like short walking ( although on a bad day even that’s hard)

Eventually after scans etc not showing much, although she had huge enlarged lymph glands under her arms, which still are tender , she saw a dr who said the pain in her chest area, that she kept getting, just like you mentioned , was costochondritis , which is an inflammation of the sternum and in between the ribs this is a long COVID symptom

We kept repeating, it won’t always be like this , it was a chant we used and it got us through! There are people who understand and have gone through similar scary symptoms.
Huge hugs to you it isn’t for life but it is life at present, hang in there enjoy your daughter, you will get better but it does take its own time.

People with MCAS can react to components in the tablets apparently. So the stuff they put in to transport the active ingredient so that it is evenly spread in the tablet mixture so all the tablets get the same amount and make the tablets stick together and give them colour or a tough outer coat etc...

💡Moment.... My mother is fine with some meds and then they upset her... I think I have just connected two things.

@BlackeyedSusan Which tablets? Vitamins etc? It’s so hard to know what to take or not
Sorry to hear about your diagnosis, is that similar to mcas

@awaynboilyurheid So sorry to hear about your daughter, is she any better now? So awful to be young and suffering, really isn’t fair

@Ranoutofnamesss
Your hormone levels fluctuate anyway especially post-baby but I suggest further testing.

I recommend seeing a Rheumatologist to investigate autoimmune conditions of you haven't already.

All tablets are formulated with a whole heap of ingredients. Look at the patient leaflet. They have active ingredient list and other ingredients list. It would be worth comparing different tablet ingredient lists to see if there is anything that you can connect.

These types of conditions are poorly understood by many drs.

I have sent you a pm.

Hi @Ranoutofnamesss, you asked about anti-histamines - I took some right at the start when people were suggesting that I had an allergy and not covid but they gave me a thumping headache. I have taken them in the past (for pollen) and never had that reaction so I stopped.

[quote Ranoutofnamesss]@awaynboilyurheid So sorry to hear about your daughter, is she any better now? So awful to be young and suffering, really isn’t fair[/quote]
That’s kind of you thank you for your reply, she’s better now, but it did take a while, because she caught it in London in the first March the virus appeared here, it was difficult as we knew so little.
She “ recovered” from the initial high temp cough etc but then it was like wham, she never regained any energy had brain fog, enlarged lymph glands lots of weird symptoms, had chronic fatigue. No one knew anything and we were stumbling along GP was zero help in fact one told her I’ve never known anyone your age, after they have had COVID, not to just get better!
But slowly she has recovered, and thankfully is better now, it’s been quite the journey but she has came out the other end.
Just a question but have you had your thyroid levels checked? I read that COVID can leave you with other autoimmune conditions like underactive thyroid disease, might be worth getting checked, out to ensure they are in the upper third and not down at the lower end of “normal”: I have hashimotos and felt like some long COVID symptoms such as fatigue was similar to my packed in thyroid , just a thought.
Take care of yourself, you’ve been through a really rough time but it won’t be like this forever.