Can anyone tell me if this is an MPN symptom please. At first I periodically get a warm glow feeling on the arch of my foot. It’s there for about a minute. I mentioned it to my heamo but she didn’t think it relevant to ET. It doesn’t hurt.
Now I also get it just below my elbow too. Are these precursors to the burning sensations some MPN Patients get which luckily at this moment in time I don’t .
I get occasional hot foot, lasts a few minutes at most usually. For me it's a minor problem vs all the others, but I didn't have before my Dx.
Thank you yes it’s not an issue
Sometimes I use the hot one to warm up the cold one, can be sort of useful that way. I usually have cold feet/hands.
Hard to say what it is, but it could be a mild variant of the burning/tingling some of us get in the feet/toes. Odd locations though. One clue might be - Does it feel like it is in the soft tissue/skin or like it is in the joints/bones.?
Hi Thanks for replying. it’s soft tissue
That sounds like what many of us experience as a microvascular symptom. I did experience that in my feet/toes when I was off aspirin. Low dose aspirin fixed the problem for me. Some people find they need low dose aspirin 2x/day to fix the problem.
None of that is to say this is what is going on for you. Definitely something to review with your MPN care team.
Thank you I will raise it again next week during my consultation
Sounds familiar. I get burning toes, and also, in the shower, even cool water feels scorching. They also told me it is nothing to do with ET. Not sure I agree
I think you are right. At the moment it’s a pleasant glow.Thank you for replying
Yes, I have burning feet and lower legs. Gets very uncomfortable most evenings. Seems to be related to how warm my core is. Over my 15 years, it has gotten much worse. And yes, the shower is a problem . I get small pinpoint pain for about 15 minutes after a shower. Cooler water does help. And also had to quit aquasize classes because the water felt so cold even in a heated pool. Wah, wah, wah. Seems that all I do is complain.
It could be medication related. Do you take hydroxyurea? What you are describing is exactly what happened to me after taking HU for 7 months. Possibly peripheral neuropathy. Discuss with your specialist. It's a horrible feeling and I couldn't deal with it. Stopped me sleeping. I wish you the best and hope you find out what's going on.
Thanks, Hi it’s not an issue at all but upon what you and others have said I googled peripheral neuropathy. It can affect pre diabetics of which I am one.
Hi Wyebird the arch of my foot which used to get very hot and painful it was one of the symptoms i had before my diagnosis of ETJAK2 after taking baby aspirin and Hydroxycarbamide it disappeared thought this may help you x
Thank you for replying. Glad your symptoms are better for being on hydroxi. since being on Peg my bloods are really good and fatigue is nothing like it used to be. Time will tell if this is going to develop into more uncomfortable symptoms.
I had this exact thing for a while. Intermittent warm glow in the foot which was perfectly pleasant just a little unusual. I now have some less enjoyable issues with cold/burning/pinching feet but I’m not sure if the two are related
Ah yes you see I’m wondering if it’s the start of things more unpleasant
I think it’s really hard to say - they don’t feel completely related to me but I guess they could be. Who knows with this crazy thing. I’m also adjusting to new iron levels with venesections which might be related to the toe pain
Thanks. It’s strange and annoying but as things go not to bad. The pain is pretty mild. Just weird as it’s a constant reminder that your blood is wonky!
Haha I like that term ‘wonky blood’ glad you don’t find it unbearable .
HiThere is a condition called erythromelalgia.
However your experience sounds very mild.
Louise x
Hi thanks do you know if is it MPN related ?
Hi wyebird. I used to get this on my instep and wondered what it was haven’t had it for a while now🤞 Must be money related😣
Ooh🤗🤗🤗I do hope so x
Must be mpn related
I go to bed with stabbing, burning sensations in the joints of both big toes, sleep well, and wake with more pain, often in bones on top of left foot, especially during routine exercises. Very much hope for a MPN specialist consultation in the not too distance future to talk about this. It was a symptom quite a few months before diagnosis so can only think it is ET.
Oh that’s awful. I’m under an MPN specialist luckily enough.
Hi, I had this too, especially after working out. After the carbasalate calcium was increased from 100 to 200mg it was resolved, If this is in your case not an option.. a fish oil capsule also helped. Greetings. Paul
Never heard of carbasalate calcium thank you
I get burning sole sensation in my feet and often up my legs. I have it most of the time and worse at night. I am on hydroxy and two aspirin and unfortunately it doesn't make any difference. I would like to know the answer and what to do as the increase in aspirin has not helped. I hope you stay as you are with no changes. Its something im going to re check at my next meeting.
This is what happened to me after 7 months on HU. My haematologist took me off the med. It could be peripheral neuropathy. Your specialist may need to adjust or change your meds. It was a sensation I couldn't tolerate. I couldn't sleep or function. I still have it to a lesser degree 11 weeks after going off HU but it could take months to settle down.
Have your meds been changed recently? Could be medication related. I literally developed burning feet and lower legs overnight after 7 months on Hydroxyurea. My haematologist has taken me off the meds for now. 11 weeks later still experiencing a not as intense burning sensation. In my case it seems to be chemo induced peripheral neuropathy. I hope it doesn't get worse for you.
I have MF and am on Ruxolitinib which has been really excellent. However, just recently I developed hot burning soles which builds up during the day and becomes quite uncomfortable by bedtime. I wondered if it was related to my MPN and having read the above correspondence it appears it may well be. I bought a Chillmax pad (available in Boots) and it really helps.
While this symptom may be common among MPN patients I really wouldn’t worry that it’s a symptom of progression. Worth checking this with your haematologist.
Thanks heamo wasn’t that concerned but after reading a few posts I’ve researched peripheral neuropathy. It says it can be related to pre diabetics. Of which I’m one🥴
I’m sorry to hear that though having done a little research on it too I see there are quite a few causes. An uncomfortable symptom regardless.😬
I got similar to this on statins.
Unfortunately it’s not due to statins I’ve been on them for over 15 years x
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