Hi everyone
I’ve been experiencing pain in my right shoulder. I initially put it down to cycling but after a couple of months it is still painful especially when lifting my arm towards my left shoulder. I’ve ET and have been taking hydroxy for 7 years. Has anyone had similar issues? Thank you.
Hi,Yes,I have problems with my left shoulder. I cannot lift it higher than about chest hight.I also have a very unusual problem with my right foot. It feels like I have a broken bone in the middle part of the foot so walking on just a tiny little stone, will hurt like mad. I have no idea if it is old age..or something to do with disease.
Ah thank you for your reply. I guess a need to get it checked out is in order. I know bone pain is part of the disease but be good to be sure.
Yes l also have pain but in my left shoulder,l have no idea what it is but believe it's related to MPN.Adiwon
Weird, i also have left shoulder/arm problem. When i saw a physio a few years ago he Dx a Slap Lesion. With therapy and acupuncture it was ok but having problems again. I now wonder, is there a link to PV, inflammation etc??
The shoulder is a complex joint and there are a number of different reasons you could be having pain. It can get progressively worse as time goes on. If you stop moving the shoulder through its full range of motion you can develop adhesions. This makes things even worse. I have torn both of my rotator cuffs and can speak to just how problematic this can be.
While Hydroxyurea can cause arthralgia, this does not sound like what you are describing. It is possible that the inflammation related to ET may be making whatever the problem is worse. The inverse is that if you do have an injury causing inflammation, that can cause reactive thrombocytosis.
Suggest consulting with an orthopedist who specializes in shoulder injuries. It is likely that the longer you wait, the worse it will get. Also suggest having the ortho-doc consult with the hemo-doc.
Hope you get this sorted soon.
Like my dad I would highly recommend getting a good orthopedic evaluation done. ET can definitely cause inflammation issues, but there's an old saying of if you hear hoofbeats, think horses not zebras. While we do have a rare condition, the most likely cause is something structural or an injury. Again like my dad (lol) I have had a fairly lengthy history of joint issues. I had shoulder surgery in 2014 to deal with a torn labrum and rotator cuff. I'm now about to go through injections to deal with what they think is a torn meniscus and also a damaged lateral collateral ligament in my knee. Getting older is not for the faint of heart!
Thank you for this response. I initially thought I may have aggravated it cycling - pressing down on my arms etc. I’ll mention it to my GP he has a physiotherapist at the surgery. Thank you. Good luck with your treatment!
Hi I have it too but on my left shoulder. I tore my rotator cup about 20 years ago from working out but I believe my pain is from being a side sleeper especially since I always sleep on my left side. Are you a side sleeper?
Hi thanks for your response - yes I am a side sleeper and on the problem shoulder. I’ll look into that too thank you.
Hi I had this too before I was diagnosed with ET Jak2 & PV was told is was from the spleen being enlarged believe it or not it’s a lot better since being on peg.
It seems many have shoulder issues .I too have been suffering badly for over a month now with extremely painful left shoulder and nothing seems to curb the pain. I mentioned it on last telephone consult and he suggested getting an x ray via my gp. I still have that to arrange as soon as am back from holiday. Even rest and warmth of the Portuguese sun does not alleviate it.
Yes mine started last October & still very bad. But I put mine down to sailing which is my hobby . However in March they checked bloods at my request & have ET Jak 2 . Hydroxy didn’t suit my body & after 6 weeks taken off it. I have had many tests & due for more on shoulder but to date nothing positive found . I am unable to lift the left arm or load bear on it or pull across chest . No physio has worked either . Julia UK
I had similar which turned out to be rotator cuff problems. I tried physio visits but this wasn't working. She suggested I needed steroid injections which I got from th doc. They worked brilliantly and now am pain free with full movement back
Ah that’s interesting thank you for responding I’ll keep that in mind - pleased you got it sorted.
Hi. It’s maybe worth getting this checked out, but I also experienced pain in my right shoulder for months, it gradually got worse. Eventually I went to my doctor who confirmed it was frozen shoulder. By that point it was very painful. I got 3 physio sessions, then a saline injection into my shoulder. Afterwards I then done another 6/7 physio sessions! Finally now it’s about 90% back to normal! Just in case it’s that!
Ah thank you so much - so good you’re much better. I’ve an appointment on Thursday with my GP hopefully get it sorted.
Hi Charliegirl, PLEASE don't panic but I am recommending that you have your liver function enzymes analysed. Its an easy peasy blood test and might be quite telling. Hopefully they'll be normal 🤞but I have an experience of right shoulder pain (NO other symptoms) having lived with ET for a few years. It transpired I had Budd Chiari syndrome...a blockage in my hepatic vein from a blood clot. This sounds VERY dramatic (which it was) but normal LFTs will rule this one out for you.PS I'm not a drama queen fyi!👸
Ok thank you for your response. I had a full blood analysis 5 weeks ago and all was ok. However, I will speak to my nurse and check it out, hope you continue to stay well! Thank you for this.
Well, that's that ruled out then. Very happy for you 😊😉 Hope you find some resolution. Best of luck, Karol (2 liver transplants later...)
PS the shoulder pain was a nerve pain...connected to liver inflammation
Thank you so much Karol I’ll mention this - but praying you stay well it’s a real nuisance but onwards and upwards! Never know when a breakthrough will come in the research! Take care.
I have had this too but mine was caused by a rowing injury in college so very much pre-ET diagnosis. Interestingly enough the pain subsided somewhat once I went on cytoreductive therapy (first HU and then Peg) and now that this topic surfaced wonder if perhaps lower overall inflammation helped. Whatever you do, definitely get it checked out, I know form very painful personal experience that the longer you wait the worse the pain can get...
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Bone pain in myelofibrosis 
