I’ve written a couple of posts about the pains I was experiencing with my ET - and I called it joint pain (it’s hard to describe but it was getting progressively more painful) and in January was getting so bad I changed my work pattern to 4 days a week.
My consultant put me on hydroxycarbomide in early February - and I am feeling so much better. My platelets peaked at 950 and are now down to 730.
He thinks the pains relate to Erythromelalgia which was a new word to me!! When I read up on it, it makes perfect sense now. I have had this pain for 2 years (getting progressively worse) and I think the problem was I couldn’t describe the pain.
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Wakeboarder
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That’s so interesting Wakeboarder. I definitely experience similar symptoms and have idiopathic erythrocytosis (too many red blood cells, cause unknown). I’m also in the process of being tested for some more autoimmune diseases which can also cause similar symptoms.
I’m not sure to be honest. I think the consultant is tempted to rule out Sjögren’s syndrome now and is testing for celiac disease or pbc (primary biliary cirrhosis or similar, which are all autoimmune diseases. Not a cheery prospect but hope to have a firmer diagnosis in about 10 days.
Just looked up Erythromelalgia. Looks like secondary erythromelalgia is the one that affects people with MPNs. Too many platelets getting together and causing trouble.
Primary erythromelalgia is a separate condition with different features, mainly burning sensation, redness and swelling in hands and feet.
I have had the same experince, but it was episodic over 12 years. FYI: "Erythromelalgia, formerly known as Mitchell's disease (after Silas Weir Mitchell), is a rare vascular peripheral pain disorder in which blood vessels, usually in the lower extremities or hands, are episodically blocked (frequently on and off daily), then become hyperemic and inflamed." Dosing with Duloxetine has helped immensely.
Hi - was yours diagnosed early or did it take 12 years to identify it?
I found the ‘not knowing’ really difficult. Now I know what it is and it’s under management (ie there isn’t something else undiagnosed) - it’s like a great weight off my shoulders.
It took 12yrs...Ilive in a regional area...so it was a visiting Dr at our hospital who picked it up. If I remember correctly, the JAK2 was only discovered in 2006. My GP is only now getting to grip with MPNs.
Yes. I’d also like to know this. My hips and also thighs and buttocks feel like they are burning slightly and there’s also a tearing sensations. I have redness on one spot on my right hip. These sensations come and go.
I had that especially in my left hand. Especially before diagnosis and once, really painfully after diagnosis. That’s all over and I believe that has to do with keeping ET under control.
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