Polycythemia ..Growing pains in legs at night ?

[nightssky]

Hi all

Any one else get awful growing pains in the legs they come on in the evening and last the whole night long I get them every now and then ..thought I was done growing LoL

[lynxfluff]

Hey there. I saw your recent threads - referral to a hematologist, leg pains, chest pains...

If it’s sudden and bad, go see someone immediately, of course. Otherwise, I’d suggest you gather all your thoughts on paper so you have something for your new doctor to go off of. Bone pain can be associated with MPNs, and maybe that’s what you’re experiencing relating to this thread.

The number and severity of symptoms you’re experiencing will affect your doctor’s decisions on treatment. So having that data available when you go - what symptoms you experience (including the chest and leg pains), the frequency of the symptoms, and how long they last on average when they occur - will help make sure you don’t forget anything when y’all talk. There are loads of resources that list PV symptoms; go down the list and see what applies to your case.

Hope you start feeling better soon! :3

[nightssky in reply to lynxfluff]

hi lynxfluff

thanks for your advise much appreciated very helpful

[Ovingite]

Hi nightssky,

I have ET rather than PV but I certainly recognize the growing pain / bone pain scenario at night. Mine is often accompanied by numbness / pins & needles sensation and only in my left leg (mostly thigh). My GP prescribed codein phosphate to kill the pain, but I am very reluctant to get reliant on opiates so I only take them when it's gets unbearable. My daughter is an anaesthetist, and therefore a bit of a specialist in pain management, tells me I shouldn't let pain go untreated as it can cause other health issues - but she didn't take into account the "pig headed dad" syndrome 😣 🐷

Btw, my hemo regarded it as a fairly regular MPN event, so I guess we have to get along with it as it is likely to be a long term companion.

[nightssky in reply to Ovingite]

hello Ovingite thanks for your reply much appreciated cheers