I am new to this forum and would like some advice please. My partner has rrms, was dx in 2006, he suffers with what he can only describe as severe burning down his right side, especially in his leg. Is this common with ms? He was taking gabapentin but this didn’t do anything so now he’s on amitryptalin which after 6 months has actually reduced the burning a small amount. we have only been together 2 years, and even though I have read about this as much as I can, theres lots of info and it can be quite confusing.
Any info would be helpful,and it would just be good to talk to other people.
Yes, that sounds like typical MS to me. I can egt all kinds of feelings that come & go in different parts of my body - burning, tingling, numbness… I’m on Gabapentin which generally works for me. I’m glad the Amitriptyline has been better, but if he’s not happy with it another one to try is Pregabalin, which is meant to be very good.
Something else I’ve been doing recently is mindfulness meditation, which is known to be beneficial for pain management & things like anxiety & depression. Mindfulness is simply about noticing what you’re experiencing in the moment - what the different bits of your body are feeling, what your breathing is like, what you can hear or taste, what thoughts & feelings you’re having. Often we’re rarely in the present moment - we’re worrying about the future, or feeling things based on the past, instead of just being aware of what’s going on right now. And when we are aware, we’re wanting to change what we’re experiencing. But with mindfulness, you simpy notice what you’re feeling & let go of the desire to change it. It can be tricky to do, especially with something like the pain - the idea of just noticing it but not doing anythng about it sounded like torture to me at first. But oddly, I’ve found it really helps. I used to say I’m in pain, but actually that’s not true - only a very small part of me would be in pain, and even then the pain would come & go, The rest of my body will be feelng all kinds of other things. If you want I can send you a link for a website that’s got a simple introduction to it.
Other than that, I just want to say welcome to the board (to your partner as well). There’s a wealth of knowledge & experience on here, so don’t feel bad about asking a many questions as you need.
If he’d like to try an alternative therapy for this (its is a symptom of MS) then he could try the Homeopathic remedy Belladonna. You can get it at a good healthstore and only costs a few £s. Its worth a try.
Hope this helps, Mary
i had that burning feeling together with a buzzing when i was first diagnosed.
try thinking of it as an electrical signal going through a frayed wire, thats pretty much what it is.
(although he won’t burst into flames!)
Thanks for replying, think he’s going to give the amytripilin a bit longer and then go back to the doctor, maybe try pregabalin. He walks with a bit of a limp as he can’t feel the floor properly, and in the last year he has struggled to go out on his own as he can suddenly come to a halt and his legs don’t seem to work properly and has to get someone to help him back to the car, which I know he feels embarassed about. He also has a problem with his balance which I understand is quite common. I might try to join our local ms society, think it might do him good to meet others who are in the same position as him. Hope everyone is as well as can be