painful legs even at night

[nannybarb08]

I was told I have PV in Jan just on aspirin and blood test result venesection, I am having very painful legs even in bed a night does anybody else have this problem if so what helps as paracetamol does not work. Thanks for reading this

[jane13]

this is perhaps a controversial comment based purely on personal experience: presumably your leg pain is caused by an over-active bone marrow, so consider taking hydroxy to slow it down. maybe discuss with yr haem?

[nannybarb08 in reply to jane13]

thank you Jane, I asked him the last time I saw him in March, but he did not think it due to my PV but I will see my Dr and ask him to refer me back to him, Thanks for your help.

[Ovingite]

Hi. I have ET JAK2+ rather than PV but I also get the leg ache. For me it's always left side and the deep ache is always accompanied by numbness / tingling. My hemo said it's unlikely to be blood related so I went to the GP who prescribed me codein phosphate to control the pain (Ibuprofen is not recommended as I am too old - 68). Codein works reasonably well but I'm careful not to take them too often as they are opioid based and can be addictive. Actually as I'm writing this it's kicking off again,..........

John

[nannybarb08 in reply to Ovingite]

thanks for the advice I decided to go to the Dr I've got appt. next Wednesday, lets hope I get a good answer.

[h2ogal]

I put pillow under my legs and keep them elevated at night to help relieve the pain. Getting in a swimming pool helps. You don't have to swim. I work out vertically in the water and sometimes just float with noodle or whatever you can find. It helps the blood circulate easier. I loved it so much I started teaching classes in the water and have seen many people get relief from just being in the water. Wish Doctor's would suggest it more.

[redumbrella]

Hi I also have PV was diagnosed 13 years ago. For the last 5 to 6 years I have suffered leg pains, my Haemo refered me to a Rheumatologist who told me I most likely had PMR (Poly Myalgia Rheumatica) which would burn itself out in a couple of years and prescribed steroids. Still waiting for this to happen (burn out) am now convinced it is the dreaded bone pain related to PV. As to how to prevent it I use Paracetamol and find it helps but am reluctant to use it every day or night.

Hope you find a way to cope

Garry

[fernie]

I get the leg pain on my shin, left leg only, always the same small spot. I find if I take an aspirin twice a day, every 12 hrs, it keeps it under control and I get to sleep. Can't lie on that side at night either. Putting my leg up makes it worse. Cold works quite well, like sticking it out the side of the bedcovers, LOL. My haem approved that extra aspirin though. I think it may be erthromelagia (sp?) and that apparently responds to extra aspirin. My Dr. thinks it's microvascular.

[Rose_59]

I have PV, presently taking Aspirin and Hydrea (10 x 500 weekly). I too experience a lot of leg pain/weakness. In fact I would say leg pain/weakness is my biggest challenge. It really impacts on my lifestyle. Prior to starting on Hydrea (May'18) I was having 6/8 venesections per annum(over the past 7/8 years) as a result of which I became very iron deficient. I was putting my leg weakness down to this and hoping it would improve once I started on Hydrea. While my blood counts are improving and thankfully, I've only needed 2 Venesections so far this year, I have yet to experience an improvement in my stamina. I find standing very difficult and walking for longer than say 30/40 mins can sometimes be very painful. I too wonder if any of you experience this and if there is a light at the end of the tunnel.