Sore feet

[VTAR24]

Hi does anyone suffer from a burning sensation in ther feet it's not all the time as it comes and goes feet are not swollen but are just stinging and burning feeling ? Tks in advance

[Hatchie]

Before I started Rux I also experience this burning sensation. I would get relief from taking the anti inflammatory Naproxen.

I'm not sure where you are but in Australia you can get it from the chemist. My MPN specialist would give me a script for a slow release version which would provide longer relief.

[hunter5582]

While this can happen for different reasons, burning/tingling fee is a classic MPN microvascular symptom. This issue will often respond to an appropriate dose of aspirin. Some people need more than 1x/day. This is something you should review with your MPN care team as it is relevant.

[C_Anne_Orange]

I was diagnosed in 2021 and on Hydroxy and started having what you describe in my feet. My MPN specialist recommended adding a second low dose aspirin- one in the morning and one at night- that did the trick . I’ve been on Besremi now and still no tingling. So definitely talk to your doctor. Good luck!

[LaalRobbo]

Yes, I too am jak2 positive on 75mg aspirin and i haved this. It used to be really bad but less so now. Definitely symptom of ET.

[JP1952]

I get his but in my legs around my knees. The haematologist has never offered any advice.

[SmotMot]

I have burning soles ,toes etc and occasinaly warm red hands fingers. I know this to be Erythromelalgia. It was my first obvious symptom back in December 2022.I am on Hydroxycarbamidefor ET 500mg x4 and1000 x3 a week.

I'm also on Asprin 75 and have tried twice a day

My platelets are now 400 but there is no improvement in my sumptoms.

I have no support with this although they are aware that I still suffer. I have learned to adapt my life but in my case it has really had a huge impact especially as I love walking and exercise agravates my condition.

I carry a small fan with me at all times and wear sandals the majority of time. My aim every day is to keep my feet as cool as possible.

[Janlol]

Hi, I too have been diagnosed with Erythromelalgia, (I am JAK + ET). Suffer terribly with burning stinging feet but also with Raynauds when my feet get too cold. Seems very difficult to get it right. I currently have Flolan infusions every 5/6 months which helps with the Raynauds symptoms but makes the Erythromelalgia worse, seems to be one of the ET symptoms unfortunately 😢

[Lyndjs]

Hi VTAR24 ,

I'm sorry I can't help, but I too get the burning sensation in my feet, occasionally I'd say. No swelling, no redness but burning/ tingling sensation, usually in the evening when I've put my feet up.

I'll be very interested to read replies to your post. Thank you for sharing.

Lx

[LIGEBA]

Hi VTAR24 I also experience the burning feet. It comes and goes and what I have found in my case is that spicy (even mild) foods can trigger it as well as heat and humidity. Other times it can come on without warning for no reason. I take 2 low-dose aspirin each day. Not sure if that is helping or not. When it gets bad I put my feet in cold water or put some ice on them and that helps some. It can be quite debilitating when it does happen. I hope you find some relief.

[Uzza]

Yes, I do. I have been prescribed Duloxetine, it helped initially not so much now.

The redness come on about 2130 - 2230hrs and then disssapates over time, I leave my feet uncovered when in bed, which seems to help.

Regards,

Uz.