Sorry I haven't been around; an update

General What's New With You?
1

I saw my rheumatologist a couple of weeks ago.
Further blood tests were able to rule out autoimmune involvement which was good :slight_smile:
He then explained that my symptoms were being caused by a number of things;

  1. Joint hypermobility Syndrome
  2. Autonomic dysfunction
  3. Fibromyalgia
  4. Raynauds disease

Im not sure if what im experiencing is related to joint hypermoblity syndrome ( ‘stretchy veins’ leading to the blood pooling in my hands knees and feet) or if it is part of raynauds - hear that hands can get red and hot in rhe heat - the opposite of what they do in the cold ( … I think this can happen?).
Since that 5 days (where my hands seemed stuck in a red hot swollen state) - hands havent gotten to that point again thankfully; but still regulary swell up (usually only lasts a few hours).
The bad flushing and on my arms, face and chest is stil ongoing and pretty much a daily occurrence.

I have a referral to see another specialist for a second opinion (and to see what else could be contributing to symptoms)…

Im feeling a bit frustrated and down :frowning:
but its good to at least have some answers.

Im sorry I havent been posting or checking in… I was a bit unsure about whether I should or not… as I cant be 100 percent sure about what’s causing what anymore. :confused:

2

Hi MM,

Thanks for coming in to update us. We are all thinking of you

God bless

mads x

3

I am glad you came along to update us. I don’t know how many of us really know what causes our symptoms of EM, even after diagnosis. I certainly don’t. As Tizzy says, relief of symptoms is the way forward while physicians have their thinking caps on. You will be lucky if you ever know 100% what it’s all about but we are glad to have you here while the search goes on.

Nel