Painful hip and leg pain

[Hannah2308]

Still waiting on results of bone marrow , after being newly diagnosed withET. Hip and leg ever painful, can anyone advise if this is a symptom of ET, or just a aging problem. Worse after getting up from sitting and in bed.I’m still only taking aspirin. I have a appointment with MPN Specialist, but unfortunately not until October. Any advice would be appreciated. Thank you x,

[gset]

Hi there, it may be a hip problem and totally unrelated to our disease. We can all still get the same problems as others get. Might be worth getting checked out by a good physio who can see if it’s your hip or leg and even give you help on recovering. I know this happens as I had back and hip issues and didn’t know I needed a hip replacement.

[Hannah2308 in reply to gset]

Thank you gset, I am hoping it is unrelated and I get better soon. I don’t know if the bone marrow biopsy will confirm anything else. I am thankful for this forum as everyone is very helpful. Best wishes gset for the future. Diana x

[Arthandiwe]

Hey, I was diagnosed with ET in 2019 and am currently only on aspirin. I am 51, and although I do get stiff hips and back, I have assumed it’s because I sit all day in my job. I don’t know if it’s a sign of the disease. Do list all your symptoms so you can tell the specialist, as I had no idea what were symptoms when I was first diagnosed, and it helps to discuss it with the doctor. I feel tired a lot, but am also anaemic. I get ocular migraines, although they have mostly stopped with the aspirin, and sometimes my skin crawls like there’s a bug on it. My nose is often bloody and I sometimes get lightheaded. I’m sorry you have to wait until October… I hope this helps a little.

[Leighcox85]

Hi Hannah iam so sorry to hear your suffering it’s something I experience myself I have mylefibrosis I was diagnosed at the age of 24 which is quite rare I started with leg and hip pain that is now in my lower back hips legs and in my leg knee it’s gotten consistently worse over the last few years resulting in movement being difficult at times getting out of bed is the worse I spoke with my team and they said we can experience some symptoms but as mine got worse I had an X-ray that showed something up so my team did a mri and iam waiting to see a surgeon to see what I can do I had very little tissue between bone a lot of inflammation fluid in my abdomen deformities in the bones in my hip socket osteoporosis and a few other things I believe it is disease related iam in my early 30s now and have always been active and healthy until my diagnosis and I know quite a few of us have problems like this I find it difficult to believe that its unrelated but I can’t say for sure you really do need to tell your consultant as any change or new symptom is important so please do discuss it iam looking at a hip replacement but it’s complicated given my current situation I have a tendency to clot to help with pain a long soak in a hot bath with bath salts and hot water can help and I try make sure I stretch out daily although painful it does help loosen it up I hope you get some answers soon and iam sure someone on this sight can help a lot more we have some very knowledgeable people but I wish you luck and I hope you get some answers soon best wishes leighanne

[Hannah2308 in reply to Leighcox85]

Thank you Leighanne, I am sorry you have this disease at such a young age. I have bought Epsom salts and taking daily baths which I hope will help, and also painkillers. I don’t know whether I should be resting or keep moving. There is very knowledgeable people on this forum which I am very grateful for as I didn’t have knowledge of MPN’s before. Best wishes, I will post results of bone marrow biopsy , hopefully next week. Thank again x

[gilded]

Hello Hannah, I was recently diagnosed with CALR positive ET. I’m now 79. I experienced pain and stiffness in my left leg that was worse when I stood up after resting or sitting. I don’t know if this is related to ET or ageing bones.! However, my osteopath is brilliant and after a few sessions with her, the pain has abated.

[Hannah2308 in reply to gilded]

Thank you gilded, you seem similar to me. I have always been active but this is keeping me back. It is painful going upstairs and it is my left side. That’s good about your osteopath, I’ve got good on too but she wants to know the results of my X-ray and BMB. Thanks again and hope you keep well.

[hunter5582]

The hip pain may not be directly related to the ET; however, there may be a more subtle link. The deregulation of the JAK-STAT pathway does not ethan cause the body to make too many blood cells. It also causes the body to make too many inflammatory cytokines. This can exacerbate a number of inflammatory conditions. In addition, the presence of inflammation from an injury, illness, or condition can also cause reactive thrombocytosis.

Given what you are describing, collaboration on your treatment team between the MPN Specialist and the orthopedist will be important. It will not happen on its own. you will need to ensure that information is shared between the providers.

Hope you get this sorted and find relief soon.

[Hannah2308 in reply to hunter5582]

Thank you Hunter, I’ve been reading all your posts and you are very knowledgeable. I’ve being doing some research on my own as I haven’t really had anyone to speak to. The research have done appears to be quite frightening, but I should know a bit more on the 4th August when I visit the haematologist and get BMB result. I hope to list all my questions and take your advice about collaboration with all parties. Thanks again Hunter, much appreciated.

[hunter5582]

Yoda says "Do or do not. There is no try." Yoda is very smart. A bit of a Daoist actually. the key point being you have very reasonable and important questions to ask. Suggest not only writing them down but handing the doctor the list as well. Ensuring collaboration between providers is most often up to us as patients. We need to be our own case managers and ensure information moves between providers.

You may also want to contact the folks at MPN Voice about getting a buddy. It really can help to have someone to talk to. mpnvoice.org.uk/?s=buddy

Learning more about the role of inflammation in MPNs and other disorders sounds like a high priority. I have a number of inflammatory disorders: PV, osteoarthritis, insomnia, eczema, GERD and resulting hiatal hernia. Systemic inflammation is the underlying key and connection between many things I experience. I am fortunate to have found some things that helps with this.

Here are a few resources if you are interested in learning more.

europepmc.org/article/pmc/5...

hindawi.com/journals/mi/201...

mpn-hub.com/medical-informa...

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

Hope that helps. All the best my friend.