Polycythemia Vera painful joints and tiredness.

Sorry u having difficulty . Try neurophen for the headachesame, get extra strong, get them over the counter from any chemist. As for the pain in your legs ask your consultant if he can prescribe either lyrica or gabapenton if consultant prescribes them your GP can't refuse u. If your lacking iron u will likely be suffering restless leg syndrome. I take 300mg quinine. Hope ur symptoms ease soon. I still have leg pain, so as an experiment I bought a scholl massager. Cost about £50 I think but it seem to help during the nite wen my legs are unsettled hope your symptoms ease soon. Let me know how u get on. Best wishes

Sounds awful, I also have similar pains, muscles too, Gout could be the root cause, you can get this anywhere on your body, but usually starts with your big toe/s.

Iron deficiency can also play a role in a lot of these pains as can a shortage of magnesium. For the bone pain in my hands and thigh bone, the magnesium tablets have helped a bit. My haematologist asked for a serum ferritin check, the result was 9, so I was not allowed a venesection until my ferritin was above 15 again (still deficient - because that is what they want so our red blood cells don't over produce as fast).

The only other thing that I can think of, is if your marrow in your hips and thigh bones (this is where adults produce blood) is scaring (fibrosis) you will start to produce blood in other bones, I think this is refered to as 'expansion'.

If this is the case your haematologist would want to monitor you for possible progression to Myelofibrosis(MF) But I'm not a Dr. so I'm only speculating.

I hope this is helpful rather than scary.

Geoff

I have started taking magnesium and drinking soda water for the quinine...early days so I live in hope.

I can never take iron again after a stupid locum prescribed them .

i took it for two moths and it made me feel so unwell.

Haemotologist told me that they could have killed me.

I need a few more venesections to reduce the damgage.

Really? I am on gabapenton, paracetamol and Maxitram for the pain. And for the most part it helps. Drink a bottle of tonic water then put your feet in water as warm as u can manage it. One other thing I did was to buy a scholl massager. It greatly easied the sensations I was getting in my legs. Like I said for the headaches, I keep a strip of neurophen with me and the define try work. An electric blanket might help. Best wishes.

Thank you to one and all for your kind words and suggestions.