Symptoms worsen when I go to bed.

[Jerrymohler]

When I lie flat in bed at night my feet feel frozen, numb, and burning terribly. Also some joint/bone pain. Usually I get up, take pain meds, and don't get to sleep until four hours later...usually it's a glass of wine that will finally get me tired. ET, JAK2+, Factor V Leiden, on HU, aspirin, 5mg Warfarin. Anybody else get worse when they go to bed? If the edema and swelling and redness and heat are bad, I'll only be able to walk with a walker the next day.

[bordeauxgirl]

Hello Jerry, I know this will seem a bit girly for a chap but I too have freezing feet when I go to bed but try a pair of those soft fluffy socks, (NOT ordinary socks) you can get them in black Lol, But they really do work I don't know why but whenever I suffer this problem my go to cure are my fluffy socks.

[francesb]

Hi, I get burning feet at night, it was much worse before I took medication (Hydroxy) and I had to get up several times a night and plunge my feet into cold water. I still get it but not so bad, plus I've got used to it. I was told it is Erythromelalgia which occurs sometimes in people with MPNs. Maybe ask your haematologist about this. Best wishes, Frances.

[lizzziep]

I got terrible burning in my feet when I was on Hydroxycarbamide. Eventually I was prescribed Amitriptyline, I take 3 x 10mg every night, it took a couple of weeks to kick in but it felt great when it did. I was changed to Anagrelide and the burning cleared, my feet are still a funny colour, I still take Amitriptyline, when I tried lowering the dose my feet started to get worse again.. The podiatrist said the damage to the nerves in my feet would probably be permanent.

Best wishes

Lizzie

[jane13]

u have probably done this but have u checked with yr GP that nothing else going on in yr legs? Cellulitis?

[Edgbastonian]

HiJerry You have my sympathy .I have the same thing <icy cold and numb feet in bed...... but no burning >since taking Hydroxy but only just twigged from reading your post that it could be connected with Pv or meds Usually wrap my feet in an old lambswool sweaterand avoid socks so allowing free blood flow . I put the pain down to arthritis, b ut so many odd pains who knows. I have been getting swollen legs since 1980 and wear elasticated knee socks most of every day to control what was initially diagnosed as Lymphdoema but has now been referred to as venous insufficiency and thought that was the reason for the cold feet.

I think it best you do check with doc for cellulitis(had that too) in your legs and also keep them well hydrated, especially if they feel hot and burning or tender.

Hope you get some really good sleep tonight.. Shirley

[Moina-vdh]

I, too, get icy feet. I never thought it has anything to do with the PV, but it's just how I am. On a second thought it might well be caused by the PV. I don't get any burning, though. My answer is very simple, as someone else said, soft fluffy or woolly socks. Nothing tight. Sometimes they get too hot during the night, and I take them off.

Might be good to do some exercise to get the blood flowing. A nice walk or at least moving your feet in circles and move you ankles and toes before bedtime can help a little.

Unfortunately, these tips are not likely to solve your problem completely. It may be worth taking it up with your haematologist, as your medication may contribute towards it.

All the best.