Forever positive

[Participant1_-]

Hi there , I'm new to this site and don't really know where to start ,I was diagnosed with CMT 9 months ago as well as having rheumatoid arthritis and fybromyalgia and degenerative spinal problems , I am on Methotrexate and humira injections and at the moment.I am trying to carry on working but one of the worst symptoms with CMT are the spasms and pain right from the top of my legs to my feet they are more than cramp my feet turn in at the most frightening angle and the pain is excruciating .I wonder if there is anybody else experiencing these symptoms it can happen mostly a night but also getting out of my car and also lifting my legs to go upstairs when both legs spasm together there is nothing I can do and I'm in agony till they release I would be most grateful to know if anybody has this and also any tips in dealing with it · Many thanks

[Jealousone]

Hi I'm Jealous One from Australia. I have CMT type 2. That affects all limbs but mostly legs and feet. I thoroughly empathise with you. Sounds like you are dealing with tremendous pain

Sounds like nerve pain too - that is intolerable. Its worse at night. I'm on pregabalin or Lyrica. It slows down nerve impulses so you don't feel pain but not sensation. It takes a while to tritate the dose until it's satisfactory for you. It has alot of side effects so its not for everyone.

I hope you get it all sorted.

It's alot to deal with and it all takes time

We all know how you feel and are there for you 🤗

[Participant1_- in reply to Jealousone]

Thank you so much it's so comforting to know I am not on my own , not that I would wish this pain on anyone else but the fact that someone knows completely h ow you feel makes so much difference x

[Pam49 in reply to Participant1_-]

Hi

We all know what you ate goung through and you have other issues too.

We are all here for you and we all try to understand our CMT the best we can. I am ob numerous medications for mine, but having taken them for so long they are not that effective any more. My neurologist teied me on a couple of other meds but they didnt help either.

I try to work through the pain but like you said it is unbearable at times and the sleepless nights are too many to mention! My GP gave me Amytryptiline to help me sleep and yes for the first week it worked but once again once its in your system it doesnt help that much.

We just have to manage the best we can and remember yoy ARE NOT alone we all with CMT are here to sound off too.

Pam

[Hidden]

Yes, I have that as well and I also get that in my hands. It was scary at first but you get use to it eventually. I take baclofen, it's supposed to relax the muscles, but unfortunately it doesn't do that for me. Best thing is to learn to try to relax the muscle as it's happening and try to let it just happen and wait till it passed. I found the more I panicked the worse the episode and longer it lasted. Good luck to you 😊

[Participant1_- in reply to Hidden]

Thank you ladies , I know what you mean and I try at first to stay calm.but as you say it's difficult ,My neurologist I thought at the time wasn't very helpful and couldn't understand why I was having to wait so long but when I went back 9 months later he said there is not much be could do and sat shaking his head , I thought oh bells teeth this is not could I thought I would have been given medication and off I trot , but no!!! He wants to do a nerve biopsy as he thinks there is something else going on . But I'm only 4ft 11 so there's not much room to have any thing else wrong with me lol . My children say if I was a horse I would be put down x

[Ladywonder in reply to Participant1_-]

Gotta love your children lol

[Ladywonder]

I to get in hands feet etc now even Inn my back I take nothing but plain old aspirin it takes the restless leg syndrome part away sometimes to help me sleep of the cramps are really bad elevate your leg press up against wall press heel or toe in to stretch your muscle hurts like hell but helps in the end . You should do calf stretching excersizing to help prevent any as may episodes. I have fallen down many stairs in my days do to spasms. You will eventually learn to get through it hang in there as not much we can do about it . I also fine eating a banana every other day helps.