Burning sensation : Can anyone tell me if this is... - MPN Voice

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Burning sensation

Wyebird profile image
49 Replies

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 .

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Wyebird profile image
Wyebird
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49 Replies
EPguy profile image
EPguy

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.

Wyebird profile image
Wyebird in reply to EPguy

Thank you yes it’s not an issue

EPguy profile image
EPguy in reply to Wyebird

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.

Wyebird profile image
Wyebird in reply to EPguy

Haha it’s quite a nice glow it seems that it isn’t common judging by the lack of replies. Maybe it’s not a symptom just a phenomenon🥴

hunter5582 profile image
hunter5582

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.?

Wyebird profile image
Wyebird in reply to hunter5582

Hi Thanks for replying. it’s soft tissue

hunter5582 profile image
hunter5582 in reply to Wyebird

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.

Wyebird profile image
Wyebird in reply to hunter5582

Thank you I will raise it again next week during my consultation

lynnieb profile image
lynnieb

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

Wyebird profile image
Wyebird in reply to lynnieb

I think you are right. At the moment it’s a pleasant glow.Thank you for replying

Sandymacp profile image
Sandymacp in reply to lynnieb

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.

Wyebird profile image
Wyebird in reply to Sandymacp

Oh dear this is what I’m afraid is going to develop. Thank you

Phantasia profile image
Phantasia in reply to Sandymacp

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.

Wyebird profile image
Wyebird in reply to Phantasia

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.

Sandymacp profile image
Sandymacp in reply to Phantasia

Thanks for the info. I am off the HU now and taking Pegasys. It could also be erythromyalalgia. Its rare but can be part of the ET package. My doctors said no but I am going to try them again as its becoming unbearable.

Tilly_Rose profile image
Tilly_Rose

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

Foot arch
Wyebird profile image
Wyebird in reply to Tilly_Rose

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.

Timjonze profile image
Timjonze

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

Wyebird profile image
Wyebird in reply to Timjonze

Ophs should have said thanks for replying sorry

Wyebird profile image
Wyebird

Ah yes you see I’m wondering if it’s the start of things more unpleasant

Timjonze profile image
Timjonze in reply to Wyebird

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

Wyebird profile image
Wyebird in reply to Timjonze

How awful for you. I read about venesections. I suppose I’m lucky I have ET Calr. My understanding is that you haemoglobin could drop. Sending best wishes

Timjonze profile image
Timjonze

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!

Wyebird profile image
Wyebird

Haha I like that term ‘wonky blood’ glad you don’t find it unbearable .

Loubprv profile image
LoubprvVolunteer

HiThere is a condition called erythromelalgia.

However your experience sounds very mild.

Louise x

Wyebird profile image
Wyebird

Hi thanks do you know if is it MPN related ?

flirt_2015 profile image
flirt_2015

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😣

Wyebird profile image
Wyebird in reply to flirt_2015

Ooh🤗🤗🤗I do hope so x

flirt_2015 profile image
flirt_2015

Must be mpn related

dancingfiend profile image
dancingfiend

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.

Wyebird profile image
Wyebird in reply to dancingfiend

Oh that’s awful. I’m under an MPN specialist luckily enough.

Paul1993et profile image
Paul1993et

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

Wyebird profile image
Wyebird in reply to Paul1993et

Never heard of carbasalate calcium thank you

Paul1993et profile image
Paul1993et in reply to Wyebird

Aspirin..

Wyebird profile image
Wyebird in reply to Paul1993et

Lol yes I googled it xx

Oscarsboy profile image
Oscarsboy

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.

Wyebird profile image
Wyebird in reply to Oscarsboy

Thank you

Phantasia profile image
Phantasia in reply to Oscarsboy

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.

Oscarsboy profile image
Oscarsboy in reply to Phantasia

Thank you. This will be up for next discussion

Phantasia profile image
Phantasia

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.

Wyebird profile image
Wyebird in reply to Phantasia

Hi Thanks for your reply. I went onto Peg last June. Yes this is what I’m afraid of. That it’s going to lead to worse symptoms. I’m pain free at the moment

Ettiel profile image
Ettiel

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.

Wyebird profile image
Wyebird in reply to Ettiel

Thanks, I’m only ET at the moment and my bloods are great. My fear is that it could be the start of things to come

Ettiel profile image
Ettiel

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.

Wyebird profile image
Wyebird

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🥴

Ettiel profile image
Ettiel

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.😬

Wyebird profile image
Wyebird in reply to Ettiel

That’s really sweet of you to say do. Sending love

EleanorPV profile image
EleanorPV

I got similar to this on statins.

Wyebird profile image
Wyebird

Unfortunately it’s not due to statins I’ve been on them for over 15 years x

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