Am a newbie to the forum - this is my first post. Apologies if this post was better suited to another section (was debating between posting in cardiovascular or skin..)
just a quick bit of background info on me:
I’m from Australia, I’m 26 years old; early last year I saw a Rheumatologist who diagnosed me with JHS/EDS3, ‘instability / dysfunction of the autonomic nervous system’ - (not sure what exactly is going on), as well as fibromyalgia and Raynauds.
I tend to get bad flushing episodes - usually triggered by exposure to heat, whilst other times its harder to tell what the trigger is. The flushed area will feel quite warm and sensitive, and I can become quite tired. I also tend to sweat a large amount under my arms during these episodes - and sometimes also get slightly sweaty feet (however feet can feel freezing cold - if anything!).
I do have issues with vasodilation and vasoconstriction - as well as blood pooling in feet, legs and hands - which i’m guessing is due to my ‘stretchiness’.
I also tend to be prone to fairly strong livedo riticularis and have a mottled look to my skin on my upper arms, hands and legs, and occasionally chest and feet as well.
Blood vessels seem to dilate and cause flushing when in direct, hot sun - or in hot weather - also sometimes when walking around, or when stressed.
I had a period of about 6 months - 8 months where flushing episodes would occur daily - to a few times a day - when my health wasn’t too good.
I’m much better than I was early to mid last year, but still feeling a bit ‘average’ in general.
Since receiving a number of diagnoses last year - I’ve just put the large patches of sudden red flushing down to temperature changes - either in my environment or perhaps body temperature as well (I feel like my thermostat is not only off-the-wall-crazy, but completely non-functional!). I have had flushing on my shoulders, on my arms, on my face, and on my ears. It can happen in all these places at once, or each individually -e.g. just face, just ears or one ear etc. all feel warm to touch, and skin is sensitive.
Every so often, though, I notice I get quite odd flushing, mainly on my face. one side of my face will turn bright read, fell very hot and sensitive, whilst the other remains a reasonably normal colour.
I cant figure out what might be causing this…
It can happen whilst just sitting down to watch TV - relaxed, walking around the house, sitting at my computer; no changes in the temperature of my house / environment, not after eating or drinking anything in particular, not stressed etc. - I’m curious, and struggling to figure it out.
I would really appreciate any advice or suggestions as to what may be causing this - and would be interested to know if anyone has experienced similar?
I came across a video once on youtube of a girl who mentioned she had a similar issue, and didnt know what caused it; I noticed in the comments that Dr. Diana mentioned experiencing something similar to this as well ...
So Dr Diana, or any other lovely users of this forum that have experienced similar, keen to hear form you.