I am only twenty-four but eleven years ago I was diagnosed with JIA and Fibromyalgia, which later progressed to adult Rheumatoid Arthritis. I was a sickly child with constant health problems which went on through my teens and has continued in to adulthood. These problems include neutropenia and thrombocytopenia - which affect my blood.
Since 2008 I have been getting attacks of what I now know is Raynaud's. It frightened the life out of me when it first happened because it affected my whole body. It began, as it always does, with tingling sensations in a particular place (usually feet or thighs), which get progressively more severe as it moves around the body. The sensation is akin to - in my opinion - being bitten simultaneously by thousands of red ants repeatedly. It feels as if I have insects burrowing in to my skin and there have been times where it has felt like the sensation is under the skin, affecting my internal organs.
It is very painful, and I get scared each time it happens. Usually, it happens in the cold, or when I'm walking somewhere. I wouldn't dream of going on a treadmill because I know it would flare up then, too.
I cannot explain how traumatic the experience is when it flares up. If I am in public, then I will have to go to the toilet to run my hands and feet under cold water. I've even had to jump in a stream to find relief. Last week I went and sat in the sea in Greece until it cooled down. I find that I cannot have anything touching me because my body is just too hot. I am used to highly intense pain but I would rather than an R.A flare up than a Raynaud's flare up! It's terrifying beyond all doubt.
To control it, I take antihistamines, which help. I take these before I go on long walks. Interestingly, in Italy recently, I walked all day and it didn't flare up - the entire week I was there, I had no problems. However, two days after being back in the UK, I had a huge flare up and had to have a cold shower at a friends house.
However, I'm writing this because my description doesn't seem to fit everybody else's description of the disease. My fingers don't go blue or white, they go blotchy, but no more than the rest of my body - and my pain sounds a lot more intense than just 'discomfort'. My GP saw me mid flare up once and told my heart rate was elevated, which is consistent with being in agony.
Does anybody else have any symptoms similar to mine? I would appreciate comments and advice about how to deal with it. I can't have it get in the way of my life any longer, but equally, I also need to make sure it's actually consistent with the symptoms that other people are having.