Hi my partner has been diagnosed with MS 7 years ago. He has had 3 to 4 relapses in that time that have led to him being in a wheelchair mostly. We attend a neurophysiology clinic, he uses a bike with a FES set up on his legs as it seems the nerves still work but his muscles need to grow and get stronger. This has been great and given him a new lease of life but with the weather getting colder he is suffering bad pain in his feet. He describes it as having your feet in a bucket of ice with barbed wire. He has had acupuncture, no change, tried most painkillers no change other than side effects, at the moment we are waiting to see a spin clininc agaito see whether he should try another pain killer. Anyone else suffer like this? What do you find works? I have tried Epsom salts, pain pen, electric blanket, hot water bottle, support socks and hypnotherapy. Hypnotherapy helps relax him but that’s it. Glad of any suggestions thank you.
sorry is this sounds mental but ms is mental as anything,
i try to confuse my nerves by quickly changing from a cool pad to a warm pad (as hot as i can bear it without burning myself).
i consider it my revenge!!
tbh i’m a little in shock and forget that my ms was playing up!
until i wonder what i’m doing with hot and cold pads - duh!!
What drugs does your partner take to help with this pain? Or rather, what drugs has he tried?
Is Amitriptyline one of them? That’s what I take for burning feet and legs. I know burning and icy feet are different, but they could come from the same source (from my, admittedly pathetically unscientific, perspective).
I take a high dose of Gabapentin and it does help my feet but burning pain in my back has increased as the weather has changed. I do take 50mg of Amitriptyline at night; this has helped; though I have had to increase it every now and then which is not good.
Good luck in finding something that helps, my email friend in Aus; says that CBT oil in helping her very bad pain in her legs.
I have this right now worse ever, i think its the weird weather. i am on diazepam at night and slept like a baby last night didnt wake me up. thats the only thing seems to help. i have tried most things. i could chop my left off. its weird like someone is hacking off my big toe it hurts so bad some days. nerve pain shooting up my foot makes me shout out.
I hate it so going to ring my MS nurse today i think, i have too. I cant do anything my leg is just a mess, spasms and ache and cramp and incredible tingling and vibrating and then on top the foot, ugh. i feel for him.
it seems to have started with this weird weather.
i will follow you i think see how you get on might help me too. good luck to him, but diazepam for me has given me a good sleep.
I have a lady who I go to when my feet are at their worst, she has thumbs! She works all the way down my spine and finds the bits that are stuck, then all the way down to my feet which can be in terrible pain or just feeling dead. Then I go home quickly and keep very warm. I do this each autumn as the weather changes and my feet become a problem. I find that if I go to her once a month there is an improvement. It lasts for a while which is worth it. Then they hurt again then I go to her again.
I have also found that as the weather changes, it is absolutely important now that I do not let my feet get cold. Firstly as I can have days when I don’t feel any temperature, I can go out in sandals not realising how cold it is till I see people with bobble hats on. Secondly, keeping my feet at a steady temperature all day and night prevents a little of that horrid pain that my feet seem to give. Without this I can’t get my shoes on, my feet are like painful flappy things. Anyway, I have also invested in some good, specialist walking shoes with a low back. They are almost spongy and meant for people who walk as a hobby, but have things built in for support, grip etc. I have only had them about a month, they are wonderful.
The last little thing, when I am in the bath whilst the water is still hot, I run oil onto my feet. Then when I get out I rub some more on and put fluffy socks on. My feet are then kept warm and fluffy. I think that if our feet are hurting, the skin is the most important container of all that, so it needs looking after. If skin gets dry, it will surely affect how the inside bits feel. You can guarantee in my house, I always have tea bags, loo roll and er, foot oil! No food, just the essentials.
My friend also told me that on a bad day, if sitting in the chair is the only thing, then do the alphabet with both feet then at least you are keeping them moving and circulation is maintained. Hope this helps.