Hi,I was diagnosed with ET in february 2018. I am still coming to terms with the diagnosis.My main issue at the moment is with joint pain and stiffness in my left knee.This is my first post.I have read lots of the posts and like the practical advice offered. I am on hydroxy 1000 mg weekdays and 500mg daily on weekends also on aspirin and quite a few other meds . I am trying to maintain a positive outlook .I am dreading the cold weather and wonder if anyone can offer any advice on managing the joint pains and rigidity over the winter.
Winter blues: Hi,I was diagnosed with ET in... - MPN Voice
Winter blues
Hi there - I completely empathize with how you feel re coming to terms with your diagnosis. I don't have any particular symptoms (thank heavens!) that many others have mentioned, like the joint pain and fatigue, but nonetheless getting one's head around the fact that we now have a "cancer" can be just emotionally daunting. I know it took me several weeks of feeling just anxious and scared, and then that settled down (due, in no small part, to some of the great information and comments from those on this forum), but it's still definitely "back of mind". And having to do regular blood tests and take medication ensures that it stays somewhere in our minds. I'm feeling less anxious now, but of course still wish the whole stupid thing would go away, or that the doctor would suddenly announce that there's been a big mistake and I don't have anything wrong at all! Well, a person can dream, can't one? Anyway, regarding joint pain - is it from arthritis, and have you asked your doctor whether you can take something (prescription or otherwise) to help? I am sure others will weigh in here, with more experience on this than I. Meanwhile, it has really helped me to check in here, and no that I'm not alone, and I hope it continues to help you too -- including getting you some useful advice re joints!
Hi, If you have a warm water swimming pool by you try water walking. It gives a lot of people with joint pain relief. I have one about 30 minutes away and try to go 3-4 times a week. You don't need to know how to swim & the joy of being almost weightless is worth being in a bathing suit. Mmmmm....... exercise endorphins without all the stress on your joints.
Hi
I’d get your joint pain checked out. (I’m assuming from your post that you are working on the basis that your joint pain is related to your ET.) Probability is it has nothing to do with your ET diagnosis. You can sometimes get bone pain with PV. Joint pain could be down to a raft of other - possibly arthritic - related conditions. And if it is, best to address sooner rather than later. Once you have a definitive diagnosis you can at least pursue the most appropriate way to alleviate your symptoms and possibly repair (or at least stop further damage) to your joints. I’m in this position myself right now! Let us know how you get on.
I use an ultrasound massager, it helps a bit.
I have very severe arthritis in my knees and find doing exercise in the swimming pool really helps. I'm not a strong swimmer but I swim to the deep end and do various movements which stretch my knee joints and the back to the shallow end and do more, I do this for about 30 minutes 4 times a week. There are a few more ladies who are doing the same thing and we put the world to rights as we exercise. When I've lost more weight I am hoping to have my knees replaced, providing my platelets remain stable.
Curcumin