Does anyone suffer from a sensation of burning/stinging skin when not active???

[Digger031145]

[Mwalimu]

Yes, I do but hadn't recognised it had anything to do with inactivity. Had it before and after diagnosis even though platelets now within normal range. Mine is usually in fingers, occasionally big toe! It does not seem to last for long. Maybe other people can tell you what helps them. Have tried rubbing it but that doesn't seem to have any effect although, as I said, it tends to go off quickly

[Hidden]

yes, In fingers and hands, mostly at night, i have E.T.

[teenia in reply to Hidden]

yes nights are the worst fingers and hands thought I was crazy

[Aime]

I have PV and get red hot burning patches on palms of hands, knees and right big toe/foot from time to time. Ice packs really help. They flare up and usually go away within about 30 minutes. Don't think they are related to periods of inactivity, perhaps the opposite. My knees seem to over react to me kneeling on them even for 3 seconds! PV is just treated by venesection at the moment.

[westie1000]

everytime i have a blood test now it seems to be painful, i have ET ,JAK2 positive.It never used to be painful,also suffer from painful hips and burning soles when i wake up .

[janesid]

I have exactly the same as westie1000 and also have ET and am JAK2 positive. I also get a burning sensation in my arms and legs sometimes.

[Digger031145 in reply to janesid]

My burning starts within 10 mins of sitting down. Starts on my kneees and inner thighs - both legs. Then once I am undressed and in bed with my arms exposed to the air my arms start burning. It isn't so bad in the summer and starts later in the evening. I think it's due to temperature. My platelets are 480-531 I have had this for 5 years now and I dread the winters.

[teenia]

yes my hand very sensitive

[pastorterry]

I have had PV for 3 years now and have had various pains all over my body. Had a completely new one last evening. My shins and feet felt like someone had poured acid on them. They burned with so much pain that I cried for two hours. That is one symptom I hope never happens again. Like most with PV I am so tired of being tired and so tired of being in pain most of the time.