@Henrietta 

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Henrietta

Neuropathic pain - letting off steam!

Ooh I’m getting very grumpy with my right foot 😤 a relapse between diagnosis and starting DMD is a little bit tiresome as is trying to find ways to explain what it feels like to MS team and family. So it’s been around 3 weeks. It feels like someone is constantly twisting my foot, as if I’ve been wearing shoes 3 sizes too small, outside sole is completely numb, ankle is in a tight vice, foot is hot then cold and just bugging the hell out of me. I know I’m so lucky - it’s not preventing me walking, it could be a lot worse, but it’s so very tiring being aware of my foot all the time! Trying to focus on all the rest of me which feels fine... trying to tell my brain/foot that it’s not actually happening, that the message is wrong and there’s nothing going on other than faulty wiring but I just wish it’d stop! Deep Heat and freeze gel and wearing a sock help a bit. Just want to get going on a DMD now, bloods have been done so fingers crossed I’ll be getting the OK soon... Seens that for the past 4 years I’ve been humming a Joni Mitchell song as a soundtrack to life - “Don’t it always seem to go that you don’t know what you’ve got til it’s gone” (life without MS, without Covid, without Brexit... sigh). Anyway thanks everyone just needed to get that off my chest... 😉
@Stumbler

@henrietta , the following might put these things into perspective :- https://www.mstrust.org.uk/a-z/altered-sensations If you don't want to go down the medication route, you could try a magnesium supplement or a Magnesium cream, to apply topically on the troublesome places..

@Henrietta

Thanks @stumbler I’m happy to take all the drugs available - already taking amitriptyline 50mg as the relapse last year which triggered dx was mainly feet / legs neuropathy. I’m going to get some magnesium cream tomorrow as it’s got even worse today so thanks for the tip. I think - based on what I’ve read - it’s like an MS hug, it feels as if the world’s strongest man is throttling my foot and ankle. I guess it’s just my body’s way of reminding me I have MS...my MS nurse said last week to keep her posted and I’m lucky in that they have a twice-weekly symptom clinic at the National so maybe I’ll go to that. I just feel a bit of a fraud as I can walk and otherwise I’m not too affected... others have it so much worse than me. Anyway thanks so much for the link and tip about magnesium cream 👍