Mast Cell Activation Syndrome (MCAS) - discussion thread

[V.R.T.]

That’s the thing, no medical professional has been able to give me useful advice at all. It seems like we have no idea what this could be.

I get symptoms really typical of allergic reactions, but immediately after overexerting (for me that might just mean sitting up for 30secs or hearing a voice).

(diarrea, sneezing, skin feeling itchy, nausea, agitation, reflux, hive like things appearing). At the same time, it feels intimately linked to my ME, because its triggered by overexertion and nearly always means PEM is coming.

My doctor got me to try the main hyped MCAS meds and as expected nothing mych changed. I’ve kinda just accepted this is an unexplainable mystery. But yeah am wondering if anyone’s had anything similar and if it ever lead to breathing problems/anaphlyaxis.

My hunch is this is in some way related to ME, like it’s part of the mechanism for me, and it probably doesn’t entail classical allergy like reactions, just somehwhat coincidentally produces similar symptoms, but ofc I can’t be sure.

I have allergic type symptoms too since becoming severe/getting covid, and hands going bright red after I eat high histamine foods like curry. I decided to take it seriously after two occasions where I ate a heavily fermented food (kimchi on one occasion and yellow bean paste on another) and had intense symptoms.

After I was put on a low histamine diet a year ago I noticed a lot of symptoms decreased significantly, but the diet is utterly miserable and hard for my carers to stick to. I have tried H1 antihistamines twice, ceterzine made my brain fog worse and a recent trial of fexofenadine coincided with a period of frightening crashes. I have a backlog of famotidine I keep meaning to try.

I really want to reintroduce normal foods but every time I try I crash and feel unwell. This may be correlation not causation though, as it is miserably easy for me to trigger PEM.

I know someone with ME/LC who suffers terribly with MCAS/allergies, and have heard a lot of similar stories in support groups.

I do sometimes think the MCAS clincal category is too broad (Afrin claims it can cause everything under the sun), but imo there is definitely something happening here that sometimes accompanies ME/CFS and worsens with PEM.

Attached two more extreme examples of said swelling and redness in hands.

Edit: Since covid/becoming severe I also find that black pepper, which I used to love, now burns my mouth, and if a crumb of it stays on my tongue it almost has a numbing effect. so i had to stop eating it.

 

[Jonathan Edwards]

Attached two more extreme examples of said swelling and redness in hands.

It is difficult to work from. photos but those look like a vasoactive response of the sort one might see with an systemic autonomic response to something like capsaicin (chilli) mimicking a temperature response. I don't see mast cell features - the dermis is not actually oedematous as far as I can see.

I think these sorts of observations might turn out to be useful if we had some decnet academic physicians prepared to analyse them without preconceptions.

 

[V.R.T.]

It is difficult to work from. photos but those look like a vasoactive response of the sort one might see with an systemic autonomic response to something like capsaicin (chilli) mimicking a temperature response. I don't see mast cell features - the dermis is not actually oedematous as far as I can see.

I think these sorts of observations might turn out to be useful if we had some decnet academic physicians prepared to analyse them without preconceptions.

Thanks - I do also get strange fluctuations in body temperature, and overreactions to heat and cold. So perhaps that makes sense.

I have never had any reactions like this to chilli before covid/severe ME (i deteriorated and then got covid shortly after and got even worse) and was a big fan of curry and spicy food generally so I would have noticed.

 

[Utsikt]

My hands and feet swell up and become red or purple. It almost always happens when they are below my heart, and sometimes just randomly when lying down as well.

I also have the temperature things @V.R.T. talks about. I’m currently lying with the window upen and no shirt, feeling in my upper body like I would at 35C in the sun by the pool when healthy, even though it’s 10C outside. My hands and especially feet are cold.

 

[Yann04]

I also have the temperature things @V.R.T. talks about. I’m currently lying with the window upen and no shirt, feeling in my upper body like I would at 35C in the sun by the pool when healthy, even though it’s 10C outside. My hands and especially feet are cold.

same.
feels like autonomic system is completely haywire

 

[V.R.T.]

It almost always happens when they are below my heart, and sometimes just randomly when lying down as well.

Mine do this too. It is worse at night and much more noticeable when I have eaten foods like curry or chilli. Perhaps I need to see if it happens after a non spicy high histamine food like canned fish.

 

[V.R.T.]

I’m currently lying with the window upen and no shirt, feeling in my upper body like I would at 35C in the sun by the pool when healthy, even though it’s 10C outside. My hands and especially feet are cold.

This is so relatable! Sorry you experience this crap too!

 

[Utsikt]

This is so relatable! Sorry you experience this crap too!

I’m sorry for you too. The only benefit is that it’s one of the few «objective» proofs of my disease - everyone can understand that if my skin is hot to the touch in a freezing room, something is off.

 

[jaded]

@V.R.T. I’ve had the same response post covid in palms, cheeks and ears. I think it’s a small fibre nerve/autonomic response causing vasodilation as in erythromelalgia. Eating is often a trigger for me and heat from external sources. I saw a “MCAS” specialist who thought it could be autonomic too.