Shoulder Pain

[Patsyok]

I have just been diagnosed with ET and have had months of shoulder pain and limited movement with one arm. Just wondering if this is part of this disease?

Thankyou

[UKZA]

Hi there, apparently it is not part of the disease, but I am sceptical. I too have shoulder problems which has been diagnosed as a frozen shoulder but without any testing. I also have substantial joint pains, which according to blood tests are not arthritis or other. I can only put it down to ET but will continue to monitor. Good luck. Penny

[mhos61]

Hi Patsyok,

Some people with MPNs seem to suffer joint pain. Whether there’s a connection or not though, I can’t answer. Notably, there are inflammatory cytokines at play in the course of MPNs, so theoretically, it’s possible.

I have ET and have joint pain from time to time, but I think in my case it’s age related. However, I can remember around the time of my diagnosis having a ‘different’ joint pain in my elbow, which I had never had before. When I started treatment (three years ago) it disappeared completely.

[Patsyok in reply to mhos61]

I have had shoulder pain for 12 months xray and ultrasound show no bone infection or arthritis I hope when I start treatment next week it may settle in time

Thankyou for reply

[Pollygator]

Hi

Like mhos61 I had joint pain but 2 weeks after starting on HU - it disappeared. Amazing!!! For several years I was in pain and even after being diagnosed with ET I did not realise the connection. I tried physio but nothing made muculoskeltal sense and now I know why. It is great to be pain free.

Good luck. P

[Lifam]

I have shoulder pain for the last 2.5 months, can easily blame my arthritis, which has never given me should bone pain in the past. I do believe it's related to ET, joint pain definitely is one of the side effects even from Hydrea although doesn't happen to everyone.

[Malaika]

Hi. I had a frozen shoulder quite a few years ago now, was very painful. It was my left shoulder and being left handed made it harder to deal with. As I am diabetic that was thought to be the reason even though it is well controlled. I did have various steroid injections to no avail. I eventually had an op which was brilliant. I immediately regained all movement although also had a course of physio I now use these exercises if I suspect things are going awry again. Good luck I hope it resolves for you too. Kind regards Malaika

[Camelian]

I suffer with shoulder pain which seemed to come out the blue and it is very painful. I seen my GP about it and he got me to move my arms into various Positions which seemed ok apart from a couple of position s. I also sometimes get pain in the top of my arm same side and both can be very painful. My GP is referring me for psysio but to be honest I think it's related to my ET because it came out of nowhere?? I'm also expeerieing bruising which is worrying me 🤔 I've put a post on today asking others if it's related to the condition. Hope your shoulder gets better soon .