@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

@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

@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 👍

Stumbler

@Stumbler

@henrietta , the clinic is a good idea. Don't minimise your MS because you're still walking. Those, who have had MS for longer, will probably go out of their way to offer you the benefit of their experience (like me 😉).

Henrietta

@Henrietta

@stumbler I’m extremely grateful - along with all us newbies - to get the benefit of your experience. I’ll contact my MS team tomorrow re symptoms clinic. Thanks again I feel so much better already just being able to discuss this with someone who understands and is kind to boot 😊

katfight

@katfight

@henrietta I have a similar problem with right foot also, try not to think about it does help but some days is worse so on them days I have 1 gabapentin (maybe once a month) and this works for me. I am going to try the the magnesium aswell though as id rather do that than take more medication. Hope your feeling better soon.

Vixen

@Vixen

Hello @henrietta. Well, my right lower thigh feels like it has a tight band wrapped around it since 20th June 2016 with no let up. It also feels like the soles of feet/toes are wrapped in a kind of face mask cream which makes them feel tight all the time. Like you, I 'can't complain' as it doesn't specifically affect mobility. But it's tiresome, boring and monotonous nonetheless because it's RELENTLESS. But hey ho, I have become good at finding things to distract myself with. These are the hidden disabilities we hear so much about, and certainly hard to communicate to others what it feels like. Keep going, we can do this...... :-)

Henrietta

@Henrietta

@katfight Thank you. I am really trying not to think about it, but it's quite hard! Hoping the magnesium cream helps :) @vixen OMG really? Maybe I need to get used to this then...love the tight face mask analogy, it's very accurate. I was being way too smug I guess, like, I've got MS but no symptoms, and then bam! Relentless, tiresome, monotonous and boring - yep! I'm listening to a brilliant meditation on the Buddhify app called 'Allow' (it's in the 'Pain and Illness' section) which is helping though :)

Cyphers

@Cyphers

@henrietta That sounds awful ☹️. I think numbness and pain together is just cruel: adding insult (and weirdness) to injury. My husband has it almost all the time. I’ll tell him about the deep heat and freeze gel combo. Drug wise gabapentin and Pregabalin might help or baclofen if you think the pain is connected to spasticity. I totally agree about Joni Mitchell. The song makes me well up. It must strike a cord with everyone, everywhere - psycho-social-bio-ecologically...I think you catch my drift. Take care 🙂

Henrietta

@Henrietta

@sereninthecity it’s just so odd knowing the sensations are caused by faulty wiring / messages and that there’s nothing actually squeezing the life out of my foot! Am getting a bit better at ignoring it / focusing on the bits of me which don’t feel weird 😂

Cyphers

@Cyphers

@henrietta Well done, that’s very zen!