I was diagnosed with Polycythemia vera last Sept. Is pain normal?

Welcome to Connect, @wesm. Polycythemia Vera is a condition where your body is producing too many red blood cells. Your doctor has you taking Hydroxyurea to help keep the overproduction under control. Even so, there are some symptoms which may be associated with PV. Here are a few of them:
fatigue, itching, trouble breathing when you lie down
trouble concentrating, unintended weight loss,
pain in your abdomen, especially the left side where your spleen is located
feeling full easily, blurred or double vision
dizziness, weakness, heavy sweating, bleeding or bruising

There can also be some side effects from the medication itself. But what you’re describing with pain on the right side of your chest & back, along with your shortness of breath with the least bit of exercise, would have me making a trip to see my doctor or the ER, ASAP. Even though you’re being treated for this condition, those symptoms could be related to a heart condition or potential blood clots. Have you talked to your doctor about your concerns?

Thank you for your reply. I am currently trying to contact my doctor. He is a oncologist/hematologist.

Hi @wesm. I think this will give you some peace of mind to have your symptoms evaluated. They’re really interfering with your daily quality of life and that’s just miserable. I hope you can get back to feeling normal soon. If you don’t mind my being nosy, would you let me know what you find out, please?

I have PV JAK2 diagnosis in fact I changed hematologists and the second Hematologist asked if they could repeat all the blood work and also did a bone marrow biopsy ..I'm @ MDAnderson now and very happy..I had breast cancer in 2009 and bowel cancer in 2012. Having these experiences one would think it's the same kind of thing, well it isn't. A solid tumor is very different than a blood cancer. It seems we all experience the disease differently we handle the Hydrox differently too..Ive been on Hydrox since last October 1 with a few phlebotomies in the beginning, the hydrox dosages changed over time. I didn't experience the itching, mouth sores, shortness of breath etc that many people feel but I felt extreme fatigue and aching...To the point all I wanted to do is go to bed. I came out of these feelings over time although the fatigue is always a reminder but I'm able to, for the most part, power though. I found that exercise does help me as does a healthy diet and distraction....I reread your post, it seems to me that you need to be seen by your hematologist ASAP.. Your current physical situation doesn't sound right even with your diagnosis and chemo. If you can't see your hematologist then a visit to the ER may be in order..Then consider a second opinion..Your Hematologist should be your best friend as you move back toward normalcy..It may be a new normal but what you describe is not normal at least to me....NO ONE cares more about your health than you..Please keep us posted, we're your support system..Thank you Mayo....

Hi @wesm, Just checking in on you this morning, were you able to talk with your doctor or a member of his team?

Thanks for asking . Today, I am in hospital getting nuclear stress test to rule out the possibility that the pain is heart related, awaiting results. Will be getting with my hemotologist ASAP, regardless of the stress test outcome.

I’m so relieved that you’re being evaluated right away. I’m sure you are too! This may be nothing, but it’s better to be safe than sorry…I’ll be waiting to hear about what you’ve learned!

Hello, I was diagnosed with PV 1/23 and this past month have been have burning sensations on the top of my hands/feet and shins. I looked it up and it appears to be a symptom of PV. Not many treatments but soak in cold water and take opioids but I’m just dealing being it comes and goes. I wish you luck with you heart issues and hope you find the cause so you can treat it. Keep us posted!

Thank you for your encouragement and kind thoughts.

You did the right thing if something doesn't seem right then it probably isn't. If the scan doesn't give you some answers then keep looking for the root cause..Has your hematologist responded to you? Please keep us informed....