Bone Pain

[BluePeony]

For those here suffering from bone pain, you might be interested in a site called PV Reporter. There is helpful information, including an explanation of bone pain. When the cancer is active the bone marrow proliferates, causing pressure inside the bone. This in turn can cause inflammation of the thin layer (periosteum) which covers the bone ~ same thing that happens when you get shin splints. For me, it is easier to deal with pain when I know it’s origins.

[Aime]

That’s interesting, thank you. I have been rediagnosed with idiopathic erythrocytosis which means I don’t have a cause for my extra red blood cells! I suffer from a lot of bone pain plus osteoarthritis so I sympathise. I totally agree with what you say - if you know the reason for a symptom, then it’s easier to cope with. Kind regards Aime xx😺😺

[BluePeony in reply to Aime]

Oh, so sorry Aime. If there are extra red blood cells they are presumably making your bone marrow cavity swell ~ causing pain. Are you on meds to reduce the proliferation? I take HU, which helped with the worst pain. Best wishes.

[Aime in reply to BluePeony]

Hi, no at the moment, it’s venesection only to thin the blood and avoid clots, etc. My bone pain is more complex due to osteoarthritis but quite often I complain about the pain, get x-rayed, to be told nothing has shown up. I’m wondering if those pains are the ones which I can blame on my glut of red cells! It is so complex.

I’m on Tramadol when pain is bad as well as paracetamol. My hip was so bad in November, I was put on slow release Tramadol, so ended up taking 400g in 24 hours plus maximum doses of paracetamol. On X-ray my hip is osteoarthritic so I was given an injection of durolane (hyllaronic acid) which has helped.

As soon as I had no pain, I came off the Tramadol a little too quickly I think. It complicated things because I had suspected appendicitis just before Xmas. For a start, coming off the Tramadol was blamed but that was ruled out because I had a temperature. Oh it’s so complicated as blood tests showed my hct at .46 so need blood off!

One of these days, I will get something simple! Kindest regards Aime xx😸😸😹😹

[BluePeony in reply to Aime]

Oh dear, you have been through an ordeal. I have OA in hips, back and knees as well. Did you have a Vitamin D test? Mine was very low at the time of my PV diagnosis. High dose therapy helped all the pain more than I can even believe. I also had intensive physical therapy for back and hips last spring. I do my stretching almost every day. I agree that simple would be good. I like your little sign off critters! Best ~ Madelon

[Aime in reply to BluePeony]

Hi Madelon, thank you, I keep meaning to ask doc for vit D test but always forget to add it to my list! I go to the hydrotherapy pool twice a week for Pilates classes which definitely help a lot. The warm water relaxes the muscles so you can exercise with very little or no pain, compared to land exercise. Both classes are taken by a physio so good to get advice as well. If you have access to a hydrotherapy pool I can recommend it. Kindest regards Aime xx😺😺

[BluePeony in reply to Aime]

Great idea about hydrotherapy, Aime. I do spend a good deal of time in my hot shower and on the heating pad! Best ~ Madelon

[Aime in reply to BluePeony]

The only down side to a hot pool is very itchy skin! But I can’t have my cake and eat it.xxAime 😹😹

[BluePeony in reply to Aime]

Could you explain how the itching manifests, Aime? I’ve seemingly dodged that bullet so far. I’ve had some deep (almost painful) torso itching, but it never lingers. Do you have a rash that itches all the time? A constant itching reaction to sulfa some years back almost drove me crazy. Is it like that? Thanks!

[Aime in reply to BluePeony]

Hi, the itching is deep, sore itching like you describe. I seem to go through spells of it when it drives me nuts and is constant! Occasionally I have a rash but it comes and goes too. I find the worst times are after the heat of the hydrotherapy pool (which I need for my joints) or in bed. I haven’t managed to tie it in with raised blood counts but anti histamines, water and moisturisers do help.

Kindest regards Aime xx😺😺

[ksos]

I'm with you on knowing about how things are working helping with tolerating what's happening. Thanks for the explanation and the site.

Kim

[Raphael_UK]

That is a good site I use it as well - pvreporter.com/

[redumbrella]

Thank you so much for the tip, I will certainly look at it. I have suffered bone pain for the last 6 years or so abd was initially diagnosed with Polymyalgia Rheumatica and was told it would burn out in a couple of years.

It was only very recently that I found out that bone pain and PV which I was diagnosed 13 years ago went together.

I am jak2 negative and am currently on asprin and venesection.