Thank you so much people, it is nice to know you are around....yes, just getting the PoTS diagnosis was challenging, I feel like I have no fight left to be honest, even though the Midodrine is helping when I eat and stand up but you know what, friends and family think I'm sorted because all the dysautomnia has a name and some medication. I havent explained there is usually an underlying cause because I don't want to worry people. My partner is so understanding which I think is making it harder to mention anything - I keep hoping he will notice my arm and then I can drop something in to the converstation.
I wrote my original post in a rush because I didnt want him to see I had this page open - I forgot to say I am female, 43, don't drink, don't smoke, normal weight and have an existing diagnosis of narcolepsy with cataplexy, not something that sits quite right with me, but I had all the tests, wired up, overnight, daytime with like 'forced' sleeps, which I did and each time I went into REM - I dont know why I don't quite think I have it...another thing I dont really tell people.
I can kind of make the arm move when I notice it but weirdly, I keep forgetting I have this going on, so it isnt like I'm constantly obsessing over it, I notice it when it is hanging there or stuck to my side, or stuck up at chest level.
I know I should see a doctor, I'm going to have a think today, my OH is off now for the summer so it will be difficult to go to the GP alone (I dont drive becasue of the sleep thing) - I think I maybe want to get some primary investigations before telling him, I think that is related to not worrying him for nothing. I am worried but I can't bear to worry him. Part of me thinks, well if I have an underlying condition, it will come out in the wash anyway.
Another thing I wanted to ask, do people's symptoms come in waves, like 'flares'? Whatever is going on with me tends to do this, starts with low appetite, flat mood (not depressed but not sparkly) bit of weight loss and basically walking worse than ever like I'm drunk. I have only Googled about the arm, I can't face anymore reading.
Thanks again, I'll keep you updated - I really appreciate your responses, means a lot.