Does anyone have PRV, AND restless leg syndrome? Just wondered what sort of medication you take, if any. Thanks

[LouisePRV]

Does anyone have polycythemia AND restless leg syndrome?

Just wondered what sort of medication you take if any.

Thanks.

[geordie]

Hi Rosieclaire I am glad to see that I am not alone! I am having a real problem with restless legs. I find that the pain and movement is worse the more fatigued that I am. I am suffering most nights and some times in the evenings when watching TV. I am resorting to using Diazapan 5mg to help me at the moment as using anti -depressants has not helped. I had a lot of problems when first diagnosed with PV with uncontrollable limb movements and was given the Diazapan for this purpose. I am still have some tablets so using these at the moment. I will be seeing my neurologist on 1st August (I also had a number of storks before diagnosis so still under neurology care). I will talk to the consultant about the restless legs and if get any useful advice will post on this site.

[Hidden]

I have suffered from "restless legs" for years before being diagnosed with Polycythaemia Rubra Vera and this continued unabated along with leg pain up to and including the hips. This has decreased somewhat since being treated with Hydroxycarbamide and now happens occasionally rather than frequently. My GP prescribed Co-codomol 8/500 which I take in soluble form. I find it very effective and relatively fast working.

[LouisePRV Volunteer]

Hi thanks for your reply. Do you take co codamol all the time ie every night? It says on the packet only use for a max of 3 days......

[ourlife]

My Father-In-Law has Parkinson's Disease and suffers from restless legs really badly - someone has recommended taking Magnesium - could be worth a try !

[LouisePRV Volunteer]

Thanks. Will give it a go.

[Scotslassie]

Yes. have pvr and dreadful rsl....Nothing seems to work. I have tried hot baths in epsom salts..cold baths..massage you name it!

I can be fast asleep and then wake up in excrutiating pain.

I hate taking so many pain killers, so often just suffer in silence!

Glad to get it off my chest.