Hot feet and hands

[MarybellM]

Happy Christmas everyone! My poor hubby hardly slept for past few nights with burning feet and hands. Anyone else had this? He has PV (Jak 2 positive) with pretty stable bloods on daily aspirin only at the moment (after initial venesections and a spell on hydroxi). Would be reassured if this was a ‘normal’ symptom.

[Indigo42916]

Hi there and Merry Christmas. This might be erythromelalgia. I have this in my feet, they feel hot and red. Elevating them helps, as it is congestion of the blood cells in the extremities.

Take care.

[MarybellM in reply to Indigo42916]

Thank you for the reply. I’ll give him a pillow at his feet tonight, just to try out the elevation strategy. Very much appreciate all the replies. Hope you’re having a lovely Christmas.

[Indigo42916 in reply to MarybellM]

Best to you and yours.

[bordeauxgirl]

Hi Marybell, A very happy Christmas to you and your husband, just to let you know I am PV and Jak2 pos, and yes I too had this symptom, I copped with it for some time and in the end I used to use a cold damp flannel on my feet ( even in bed) hands the same. It took a while for it to settle but eventually it has passed, I have heard that lots of us get this from time to time. But mine has stopped completely . So cheer up and know that some of us dont have this happening any more. Light at the end of the tunnel. Hope this helps. Best wishes, June.

[MarybellM in reply to bordeauxgirl]

Thank you so much for your reply. It really was reassuring and helpful. Last night, laid towel at hubby’s feet in bed and had a cold damp flannel at the ready. Guess what, no hot feet last night! Just remembering that he actually used to have this in the past, before his diagnosis so it was probably a sign of the PV in his system. At least it doesn’t happen every night or his sleep would be even more disturbed than it already is. We thought maybe wine was a trigger in the recent few days. Thank you again and hope you’re having a lovely Christmas.

[Lainy1]

Hi, I have E.T jak pos on HU 16 a week. I suffer badly every night with burning hands, breaks my sleep several times during the night.. I plunge my hands in a sink full of freezing cold water.. this helps but only for a short time..

All I wanted for Christmas was to be pain free for just one day.. hope you get some good answers on here.

Best wishes lainy 🤗

[MarybellM in reply to Lainy1]

Aw Lainy, that’s a shame about your pain. I hope some of the other replies to my post could help you too. Even knowing others have similar symptoms is reassuring. Really hope you have a better day today. X

[Aime]

Hi Marybell, I go through spells of burning hands more than my feet but sometimes both. I have PV too. If it’s a new symptom for your hubby, it is always better to check with your haem but it is I think a reasonably common symptom.

Kindest regards to you both Aime xx😺😺❤️❤️

[MarybellM in reply to Aime]

Thank you Aime. That’s really good advice. I’ll encourage Angus to phone his haemo nurse, just to make sure, but it’s reassuring that others have it too. Really kind of you to take the time to reply. I read the responses out to Angus and it definitely eased his mind that others have it too. He didn’t have the hot hands/feet last night. We are trying to determine if there are any triggers and at the moment we are considering wine as a possible suspect! He’ll just have to stick to the G and T. Thanks again.

[lizzziep]

I had a problem with burning feet, which then turned to ulcers due to the hydroxy I was on at the time. However I now take Amitryptilene which helps combat the burning. Now on Anagrelide so the ulcers have gone, but the burning stayed)

[MarybellM in reply to lizzziep]

Thank you Lizziep. Really kind of you to reply. Always reassuring that we’re not alone.

[Jerrymohler]

Erythromelalgia often comes with our MPNs. Flare ups can be extremely painful. Keep looking and you'll find plenty about it online. Facebook has a page, there's also an association, and, although it's a 'rare' condition, there are many sufferers willing to share their experience. Some use CBD oil, but unfortunately I haven't found an effective treatment that works for everybody. I suffer miserably. I'm sorry to here of his problems. They don't seem to ever go away.

[MarybellM in reply to Jerrymohler]

Sorry to hear it’s making you miserable. Will definitely look it up some more. Hope you find something to alleviate it soon.

[Hidden]

Hi, I am PV+ and I get burning, tingling feet and have done even prior to my diagnosis 18 most months ago. I find a cold water bottle is helpful. I leave it in the bed and just put my feet on it as and when needed. I tried Amitriptalyne too ( as per Lizzie P reply) because I also get disturbed by night sweats, but it didn't help either of the symptoms.

[MarybellM in reply to Hidden]

Hello there. Thanks for your suggestion - sounds easily manageable. Funnily enough (and thankfully) my husband hasn’t had the hot feet or hands since the time I posted about it. It seems to come and go mysteriously so can’t link it to anything particular he is doing or not doing. We keep a nightly chart of symptoms on a scale of 0-10. The regular symptoms he has are: fatigue, loss of concentration, breathlessness, loss of appetite, joint pain and abdominal pain. So we can definitely do without the hot hands... thanks again and all the best for 2018.

[Hidden in reply to MarybellM]

Tell him to get his stomach checked out. PV can cause an enlarged spleen which can affect appetite. Also the aspirin can cause stomach irritation which can give discomfort.

The other symptoms are all related to PV. I thought they would go once my bloods were under control but I'm still waiting!

Hope he keeps well.

Happy 2018 to you too.

[MarybellM]

Thanks for that - it’s really interesting. He has a very large stomach considering the rest of him is pretty tall and slim. We thought it might be related to the PV and have mentioned it to GP in the past but it wasn’t taken any further. Now that you have said this it will spur me on to chase it up. We always get such great support and advice from this forum. Thanks again.