Lower Joint Pain

[Trueblue8]

Hi all, I'm just after some advice, I'm ET JAK2. When I get up first thing in the morning my joints from the knees down and soles of my feet are quite painful, I know that joint pain is quite common but just wondered if anyone can tell me why? Many thanks Ian

[Minu68]

Hi, I have ET too,and also get lower leg joint/bone pain. As I understand it, the bone pain is because our bone marrow is working overtime. I've not had the soles of my feet hurting though, maybe others have experience/understanding of this

[Trueblue8 in reply to Minu68]

Hi, thanks for your reply it's much appreciated. That would make sense about the bone marrow. Ian

[Ovingite]

Hi Trueblue8.

As you say, joint pain is pretty common amongst ET patients, but foot pain probably less so.

A few years ago I was suffering with foot pain when I first got out of bed. It turned out to be plantar fascitis which is effectively a contraction of a ligament in the foot. If you look on the NHS website there are a number of exercises for it and I rarely get a recurrence now.

Hope that works for you

John

[Uzza]

I also used get pain then a fellow suffered said she was prescribed Duloxetine, sold under the brand name Cymbalta among others. It is a medication used to treat major depressive disorder, generalized anxiety disorder, fibromyalgia, and neuropathic pain. It is taken by mouth. This drug has solved my pain issues by I still have sustained numbness and stiffness. Apparently, platelet particles block small vessels which affect nerves.

Regards

Uri

[Trueblue8 in reply to Uzza]

Thanks for your reply it's much appreciated. Best wishes

[clubdino in reply to Uzza]

It's good to hear the Cymbalta is still working for you. 😊

[Uzza in reply to clubdino]

Has not solved the problem but has taken the edge off.

[clubdino in reply to Uzza]

Same here. It was working great at first for me and then slowly the pain started coming back. I thought the Cymbalta stopped working so I tried discontinuing it. About 3 days later I was at work and the pain in my feet had become so severe that I had to go home early. I had forgotten how bad the original pain was. I restarted the Cymbalta immediately. I am so scared that with the possible impending medication shortages due to the coronavirus that I will have to go without it for a few months.

[Trueblue8 in reply to clubdino]

Hi thanks for your reply it's much appreciated

[Trueblue8 in reply to clubdino]

Thanks for your reply it's much appreciated

[MacDWild]

I have this too! My feet immediately hurt when I hit the floor. I also can no longer run and I always feel like I need new shoes when I work out because my feet aren't right. I don't know why this is, but want you to know you aren't alone in experiencing this. I'm 43 with ET, Jak2+.

[Uzza in reply to MacDWild]

My experience is exactly the same as yours except although it was sporadic at first then chronically, then acutely at the age 62. Duloxetine has helped greatly, however I think I have sustained nerve damage in my feet as they feel numb on the bottom and very stiff straight out of bed in the morning.

[Trueblue8 in reply to MacDWild]

Thanks for your reply it's much appreciated

[Pkm52]

Look up “chronic inflammation”. It plays a part in the device of many disorders including osteoarthritis and cancer. The trick is how to calm it down. I am 68 and have OA in multiple joints. I seem to be more comfortable now that my platelets are in the normal range. I have ET JAK 2 + and take Hydroxyurea 800mg/day. I’ll bet Maz knows where information on the topic is.

A physician friend suggested a book ”To Quiet Inflammation”. Of course the internet is full of articles. Again, I count on Max’s expert advise.

Good luck!

[Trueblue8 in reply to Pkm52]

Hi, thanks for your reply and advice, it's very much appreciated. All the best