New kid on the Block

[ArchieCatPurr]

Hi people, I'm new here. Will the bone, joint and muscle pain ever ease or will it come and go?

[hunter5582]

Hello and welcome. Sorry to hear about the bone, joint and muscle pain. Depending on the source, you may well be able to improve the symptom(s). While it may well all be part of the same thing, these might be separate issues as well.

Taken together, this kind of pain sounds like it may be related to the overproduction of inflammatory cytokines that occurs due to dysregulation of the JAK-STAT pathway. This systemic inflammation can cause a host of problems including the types of pain your describe. In addition, it can exacerbate pain from co-occurring conditions like osteoarthritis.

There are interventions to help control systemic inflammation. Many of us use an anti-inflammatory diet, often the Mediterranean Diet. In addition, there are supplements that some of use that have been helpful, including curcumin, N-Acetylcysteine, L-Glutathione. Note that these anti-inflammatory agents can be mildly blood thinning. While generally safe, it is best to seek expert consultation on their use. I use both curcumin and L-Glutathione to successfully manage osteoarthritis pain and inflammation.

Bone pain can be a separate known MPN symptom. "The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be painful. " pvreporter.com/bone-joint-p... There are interventions when this is a cause of the pain. Here is a bit more information. patientpower.info/myeloprol...

below are two presentations in Inflammation in MPNs that you may find helpful.

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

youtube.com/watch?v=NTqb4cV...(Not working as expected?)

[LittleLuna]

Welcome.

Sorry you are having these symptoms. mPN is a world of weird, strange and downright annoying symptom burden. Everyone is different and I think a lot depends on what other conditions you may have alongside it.

Do you have an MPN Specialist and a supportive GP. Sometimes you have to eventually help educate GP if you find them lacking in knowledge of this condition.

I think you will find this forum and the amazing people here a huge support to you.

It has been fundamental in my learning and coping with this condition.

From that virtual hug and shoulder to lean on and the medical knowledge a lot of the people have is amazing.

it can be daunting exploring google. Here you will get valid information from people who have lived and worked in this world of MPN’s. Experience from those living with this is so helpful.

I am so grateful for everyone here.

And welcome to you 😊

[ArchieCatPurr in reply to LittleLuna]

Thank you for your support, I have a very good specialist MPN Dr and Nurse supporting me from the local haematology/cancer department. Unfortunately, my GP 's are not so well educated on the subject. I'm sure being a member of this group will provide me with a great deal of the support and information I need. I'm also going to get involved with local forums as they appear. Unfortunately, the next one available in Edinburgh, in early December is sold out. I am on the waiting list for that one.

[Annula]

Hi - The joint pain should be much less of a problem once treatment is established, athough you may experince some flare-ups. Muscle pain should diminish completely. Lots of luck.

[gilded]

I agree with Annula. Once I started on Peg Inf for treatment of CALR + ET, joint pains evaporated.