Tta;
Good info regarding the physiologic aspects of bone pain (periosteal reaction, etc.). Trying to describe it to others is difficult and most others do not know or care to know about the in-depth issues we have with MPNs. At least that is what I have encountered. I also don't get a lot of reaction/action from my hematologist oncologist, sad to say! Being in health care and having taught anatomy and physiology, I really appreciate detailed explanations.

It’s even trickier for me since I’m 87 yo and I have to differentiate between age/ arthritis that I’ve had since I was 19 yo and MPN. For me, my arthritis is more joint pain and stiffness while my bone pain is shooting pains, quick jabs that move all over my body and discomfort that emanates from deep within the bones. I’m not sure that I’m typical of most MPN patients. By the way, I haven’t experienced any shooting pains since I started Jakafi.

ET results in chronic inflammation that can exacerbate previous pain and add new pains specific to ET.
I remembered there is an article on this website, so this is the link for this:
https://www.mympnteam.com/resources/pain-and-mp...

I found a clear and simple explanation of why we experience bone pain in MPNs:
"In normal people bone marrow is confined to the central skeleton (cranium, ribs, sternum, vertebrae, and pelvis). The long bones contain mostly fat. In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done.
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. In some patients with bone and joint pain treatment with myelosuppressive therapy has decreased or eliminated these symptoms by reducing the amount of bone marrow in the cavity and reducing the pressure that it causes."
https://www.pvreporter.com/bone-joint-pain-mpn-...

And there are studies on abdominal and bone pain as symptoms present in MPNs:
"Chronic pain (abdominal, bone) is a prevalent and undermanaged feature of MPN disorders. Chronic non-MPN pain is further complicated by the development of the disorder. Many MPN patients lack understanding on its prevalence and furthermore feel ill-equipped to manage it. Patients have, however, found symptomatic benefit from various pharmacological and non-pharmacological treatment modalities that require further exploration. Results from this study suggest MPN patients should be assessed regularly for pain and offered early referral to specialized services for evaluation, source identification and treatment."
https://www.sciencedirect.com/science/article/p...

Also this study can shed some light on how the chronic inflammation specific to MPNs can result in symptoms:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46...

Pain and MPNs: Causes and Management | myMPNteam

https://www.mympnteam.com/resources/pain-and-mpns-causes-and-management

Bone & Joint Pain In MPN Patients Explained | Proliferative | PV Reporter

https://www.pvreporter.com/bone-joint-pain-mpn-explained/

Impact of Inflammation on Myeloproliferative Neoplasm Symptom Development

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4619953/

Tatiana,
Your comments resonate with me. After work ups by cardiologist, pulmonologist, various imaging for my heart and lungs, no one can explain my shortness of breath, so I owe it up to the hydroxyurea. Had an appointment with my hematologist oncologist today. I asked about peripheral blood vessel involvement due to something I've noticed. He totally blew me off.
I believe we need to keep digging on our own to find answers.
Hang in there and keep sharing. We are right here with you!

I have severe arthritis in my knees and am on the verge of knee replacement. I also have typical arthritis in areas like my neck, back, hips for someone my age. The bone pain that I felt at first prior to and early in my diagnosis was in my tibia (lower leg bones). It still happens occasionally. It is a very different, intense ache/pain that I know is not joint related. I now have it in my iliac bones (wing-like bones of the pelvis) that affects sleeping on my sides. I am able to differentiate the pain.