Bone pain with secondary polycythaemia

[Geoff_mpnfamily]

Hi, does anyone else with polycythaemia get pains in their thighs.. it feels like someone is pressing a blunt hard edge on my bones, when standing im a bit wobbly on my feet, and I feel like im going to collapse any moment, but I don't.

[Aime]

Hi, I have got PV and get a lot of pains in bones, muscles, etc. I have had problems with my hips and more recently had a lot of pain in one thigh and struggle to get up from a kneeling position without support. I felt too that my leg was going to give way under me - it felt really weak. I was just blaming my hip but maybe it is not that. Sorry that's not much help. If it carries on I am going to mention it to GP and haem. Perhaps you should too. Take care Aime

[fleetpete]

Hi, I think all PV sufferers will experience 'bone pain', to a greater or lesser degree. Depending on your consultant, you might get some help with pain management. I'm exploring the Acupuncture route soon...when I have the cash that is. My area health authority (or GP) doesn't believe in, or don't have the funds for alternative therapy. Well done the NHS!!!

[Geoff_mpnfamily]

Thank you Aime & fleetpete for your responses I've had Poly for about 6 years now and I have never got anywhere with the professionals regarding that very subject, Just a blank look. Finding this forum / chat room is possibly the best thing (Apart from our new born baby (No.4) on the 25th of August) Ever!

It's allowed me to put that to bed, and know i'm ok and that's normal for us Polys'

God Bless

Geoff

[stevespoc]

I get this ... and it is driving me nuts .... I feel I have been diagnosed and just left to worry.

Steve