Burning feet...

[JaynieQ]

Does anyone else suffer? Mine are driving me crazy, particularly at night. I get bad foot cramps too.. I’ve ET Jak neg, just taking aspirin at the moment.

Any suggestions gratefullly received... Thanks for listening!

Jaynie

[Raphael_UK]

Yes I have that, it’s so bad in the morning I struggle to get out bed. It’s horrible. Have ET (MPL) on Hydroxy & Asprin.

Raff

[JaynieQ in reply to Raphael_UK]

That sounds bad Raff. Have you found anything that helps you? So sorry to hear you suffer too!

Jaynie

[Raphael_UK in reply to JaynieQ]

I find the better hydrated I am the less my symptoms are. If I drink alcohol the pains are worse the next day, however if I drink lots of water even when I have had alcohol the pains are not so bad. I find it hard to drink 2 litres of water a day, but for me personally, it seems I need to drink this amount to feel ok. I wish you all the best Raff

[JaynieQ in reply to Raphael_UK]

Wise words about the water - I’m definitely not drinking anything like the amount that’s recommended.. I pushed the boat out on Saturday night and had 3 G&Ts - they were lovely but boy did I pay for it that night!!

Thanks for your help Raff, much appreciated x

[susieq75]

Hi Janynie,

I am so sorry to read that you are having this awful burning pain in your feet. Difficult pain to have. I sympathise as I have it in both feet and hands tonight so have a fan on as it helps. There is a condition called Erythromelalgia that can go with ET, it makes your skin turn red in the affected area. I was diagnosed with it at the same time as ET, not sure about other MPNs. Aspirin usually helps this condition but I am allergic. The doctor tells me that when when platelet count comes into the normal range I MAY have some relief. in the meantime, a fan helps, as does lidocaine gel rubbed into the area.

I hope you get some relief tonight and get some rest. Raise this with your doctor and hopefully they may suggest a cause and treatement.

Keeping you in my thoughts and wishing you a better day tomorrow.

Susieq

[JaynieQ in reply to susieq75]

Thanks Susieq! Sorry to hear you were struggling too... Hope you finally got some rest?

I’ve been reading up on Erythromelalgia - I think ET people can get the secondary type that can be helped by lowering the platelets? I’m due to see my specialist in June, in the meantime I might invest in a fan and some Lidocaine! Do you find the condition is worse in warm weather? My feet are either freezing or burning - there seems to be no in-between..

Thank you so much for taking the time to reply Susie - I felt quite desperate last night but today’s another day..

Take care and stay cool!

Jaynie x

[susieq75 in reply to JaynieQ]

Thanks Jaynie for you well wishes. Hope you managed to get some rest last night. It is the kind of pain that drives you to distraction. I do find warm weather makes it worse and I don't suffer with cold feet at all the opposite in fact, I have to wear sandals in the winter! My own doctor just like Frances just told me what it was but no real interest in how difficult I found it, as his interest is in blood counts, but I pursued it with him until he prescribed the Lidocaine

Please do raise it with your doctor in June and in the meantime as others have said here drink plenty of water and if staying cool helps then stay cool!

All the best and I really do hopeyou find relief

Susieq

[Thouaret in reply to JaynieQ]

Hi Janynie. I too have your hot/cold syndrome! Usually freezing in day and burning at night. I take an ice pack to bed which definitely helps. Seems to have eased a bit recently so no ice pack tonight!!

[JaynieQ in reply to Thouaret]

Hi Thouaret - the extremes of feet temp eh? Oh for the days of ‘normality’.. But who knows, we may get back to that happy place one day! Glad to read that you’ve had some relief

Jaynie

[francesb]

Hi, yes, I was told its erythromelalgia and a part of having an mpn. Mine is not as bad now, I used to get up several times a night to put my feet in cold water, maybe aspirin and other treatments have helped. My consultant showed no interest, just told me what it is. Good luck, Frances.

[JaynieQ in reply to francesb]

Hi Frances

I’m glad it’s better for you now. May I ask if you’re on HU or another medication for your platelet count? I’m on aspirin only and have been for 2 years. The burning only started a couple of weeks ago so the aspirin is not helping now.

Thanks for taking the time to reply

Jaynie x

[francesb in reply to JaynieQ]

Hi, I was on nothing when the burning started, then aspirin for a year, then Hydroxy. The feet definitely improved over time. I still get it to a degree but nothing like as bad as at first, good luck, F.

[JaynieQ in reply to francesb]

Thanks Frances, great to hear of your improvement! It gives me hope!

[EleanorPV]

Before diagnoses (PV jAK2+) my hands and feet burnt. I found it difficult to wear shoes. I found no drugs helped. Keeping my environment cold, helped a little. I haven’t suffered from it since starting Pegasys. This could just be coincidence, as my HCT was within normal range. On pegasys I need to drink at least 3lts of water.

[JaynieQ in reply to EleanorPV]

Hi Eleanor- wow 3 litres, that’s a lot of water! And glad to hear that your feet no longer bother you.. I can only hope.. 😊

[jillydabrat]

Hi Jayne, I have PC JAJ2+ and the burning feet is what I repeatedly nagged my GP about for months before my diagnosis, which was 3 years ago. I am on Hydroxy and warfarin. I still have burning feet but it's not just the burning it's the feeling that you are walking with something between the bottom of the foot and the floor even when you walk barefoot. I hate that feeling. When I moisturize my feet I feel like I am not touching them. Just one of the strange symptoms we get but it's bloody irritating.

[JaynieQ in reply to jillydabrat]

Hi Jilly thanks for your reply and I hope your symptoms are improving.. And yes, it is the strangest feeling and always worse at night. Bloody irritating indeed! 😊

[stillkicking]

Hi Jaynie,

Sorry that you are suffering with burning feet, anything going wrong with feet is miserable! I developed foot troubles when my platelets got above about 1100. The weird feeling of frost bitten toes has gone since I started Hydroxyurea treatment several weeks ago and my platelet levels have been coming down. Hope things improve for you too.

[JaynieQ in reply to stillkicking]

Great news Stillkicking! I think I’ll be on HU before too long so fingers crossed it has the same effect on me.

Stay well!

[Fionnuaghla]

I get the red hot pokers in my feet. Definitely, lots more water really helps. I used to get out of bed during the night just to stand on the cold tiles of the bathroom floor. A very helpful person on this forum suggested filling a hot water bottle with cold water to take to bed and I find that really good. In the evening I do not wear socks or slippers, just bare feet and flip-flops. Hope this is helpful as it can be quite a sharp piercing stab in the feet.

[JaynieQ in reply to Fionnuaghla]

Thanks so much for the top tips Fionnuaghla! I’ll definitely try the cold water bottle- genius!

[Mazcd Partner MPNVoice in reply to JaynieQ]

that's exactly what I was going to suggest, a hot water bottle but filled with cold water and some ice cubes. Maz

[JaynieQ in reply to Mazcd]

Thanks Maz!

[Tinkerbell13]

Sometimes wonder if we lack magnesium and perhaps worth trying to take it....spray one which is absorbed by skin is probably the best.

Also know how important to drink lots of water, 2-3 litres a day??

Hope this might help you. Kindest regards, Tinkerbell

[JaynieQ in reply to Tinkerbell13]

Thanks Tinkerbell, I’ve thought the same but a recent blood test came back with normal magnesium levels. I have got a spray and it definitely helps with the foot cramps!

[Tinkerbell13 in reply to JaynieQ]

Guess we just all have to get back to drinking yet more water....wishing you well, always, Jaynie, Tinkerbell.

[JaynieQ in reply to Tinkerbell13]

Thank you so much Tinkerbell and the very same to you.. x

[Stephen399b]

I get this most of the time, but not as badly as you by the sound of it. My problem is the foot and leg cramps. Will not suffer for a couple of weeks, then it strikes every night. I have tried everything that I have heard of to help, but noy joy. Quinine, magnesium tablets and spray, sodium, hydrating (admitedly I don't drink enoughwater) etc

If anyone knows a remedy, please pass it around.

ET, Jak2+

[JaynieQ in reply to Stephen399b]

Hi Stephen the cramps are awful! I’ve found that an Epsom foot soak every couple of nights does help, along with a magnesium spray. Hope you find something that helps

[Paul123456]

Stephen

I had bad foot/leg cramps at night but pretty much solved by wearing thermal bed socks. Think it boosts blood flow.

Best Paul

[Stephen399b in reply to Paul123456]

Thanks Paul

I had read that, but interesting to hear it works for you. Just need a night shirt and hat with a tassle!

[Paul123456]

Agreed an image worthy of Jeremy Corbyn. I’m only confessing behind anonymity of pseudonym! By chance I forgot my socks like night and had first cramps in six weeks.

My guess is that the tendons running the length of the soles of my feet contract at night. This causes alternate cramping between calves and shins. Pre bed stretching helps but for me, only the socks are the magic bullet.

For those with ‘burning’, there are various cooling/freezing/menthol sprays? PV patients suffer badly with pruritus, caused mainly by white mast cells releasing histamines. Is the burning a function of histamine or high platelets?

[JaynieQ in reply to Paul123456]

Hi Paul the thought of compression socks in bed... hahaha I just can’t go there! But thanks for the input and the giggle..

As for the burning - anti hist does work sometimes but not always... Very tough to figure out for a non scientific person like me!

[Paul123456 in reply to JaynieQ]

Jaynie

Should stress not compression socks but loose fitting thermal socks. I believe one shouldn’t wear compression socks in bed, aside from the look!

[JaynieQ in reply to Paul123456]

Phew... thanks for the clarification Paul.. Mind you, thermal socks in bed ...!!

[susieq75 in reply to Paul123456]

Hi Paul,

In the case of ET induced erythromelalgia A.K.A, Burning Man Syndrome, the pain and redness are a result of high platelets being "stuck" in tiny capillaries in the extremities, especially toes and fingertips. Aspirin can bring rapid and dramatic relief for some people but not for others. The pain is like when you get a steam burn from the kettle, a scalding pain.

Anything that makes blood vessels dilate or constrict can trigger it for me and many others, this includes changes in temperature, eating, walking, exertion the list goes on..... In the summer I have to sleep with bags of ice under me or I don't sleep.....winter not so bad

All the best to you

Susieq75

[JaynieQ in reply to susieq75]

Hi Susieq

I find that stress or anxiety can trigger it too or anything involving adrenaline - and as a motorbike rider that’s fairly frequent for me!

Jaynie x

[susieq75 in reply to JaynieQ]

Very impressed Jaynie- a motorbike rider! That would certainly trigger adrenaline!

Susieq x

[JaynieQ in reply to susieq75]

Thanks Susieq! I had a mid life crisis and passed my bike test in my 40’s - it’s fantastic fun.. Just hope I can keep riding x

[susieq75 in reply to JaynieQ]

Sounds like midlife adventure to me!!! That is amazing and of course you can keep riding the bike things will settle down and you will find a way to do it.... you are some woman Jaynie hold onto that!

All the very best of everything

Susieq

[JaynieQ in reply to susieq75]

Thank you so much for your kindness Susieq..

[Ebot]

An earlier post mentioned red hot poker stabbing sensations in the feet. I had this once over a weekend in my toes - enough shooting pain to make me have to stop and take a deep breath - and my haem was definitely concerned about it. I was told to call the CNS if I had it again. I’ve had the odd twinge since but nothing as sustained. Just flagging this up as I think different from overall burning pain.

[Roger41]

Hi, at night I used to get cramps.

When my feet are cold I wear socks.

Cramps could be a number of issues refers back to the medical team.

? Could be short of potassium but you do need your levels checked.

I get cramps after my gym sessions so I eat half a banana?

Make sure your water intake is increased and keep food on board regularly not too long between meals.

Hope this helps.

[JaynieQ in reply to Roger41]

Thanks Roger41 - lots of really helpful stuff there! I’ve had magnesium and potassium tests and both came back as normal.. However I’m not convinced because the cramps definitely ease when I use a magnesium spray..?

What an unusual condition we all share!

Jaynie

[Roger41]

I agree..

I also find stress is not good.

I have a place where I do meditation and allow my body to relax.

Magnesium salts in bath water help too.

[Wyebird in reply to Roger41]

Yes stress takes its toil on me too. I don’t think the professionals have picked up on this as a significant symptom.

[Wyebird]

Hi Jaynie, I’m ET and do not suffer with burning feet. How horrid for all you sufferers. I picked up on someone suggesting a ‘cold’ hot water bottle. Maybe filling and placing it in the freezer during the day could help further.

[JaynieQ in reply to Wyebird]

Thanks Wyebird, yes that’s a good tip. I’ll be doing that for sure! My hot feet are sometimes accompanied by hot hands, arms, legs.. It’s fairly random! Hey ho, could be a lot worse

Jaynie

[Roger41]

Distress does not necessarily show in a physical way but it has an effect on your reaction to the situation.

It plays a significant part each day. Some times you just know things are not right.

But if you find a safe emotional space you can manage this.

Hope this gives you an on-site into your condition.

[JaynieQ]

Do you have an MPN Royrichmond?