sigmadelta 04/02/18
Last reply 4 months ago
Burning sensation driving me mad!

Hi all,
I have has spms for several yrs now, and it seems to have entered a new phase which is particularly painful.
Its as though from the chest down my entire body feels as like I have second degree burns all over it, including the soles of my feet.
It is remorseless, and whilst I am still defiantly managing to totter about with 2 sticks the soles of my feet make it feel like agony.
I can’t stand the sensation of my clothes against my skin, the same as when you have bad sunburn?
Of course the irony of it all, like most MS symptoms, its all a lie… my skin isn’t burned, it just thinks it is.
Anyone else have this or found anything that can give respite from it?

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stumbler
4 months ago

@sigmadelta , these sensory symptoms can add a very uncomfortable facet to our lives.

There’s some details of this annoyance here :-

https://www.mstrust.org.uk/a-z/altered-sensations

Discuss it with your MS Nurse to obtain some medication to help.


sigmadelta
4 months ago

Thanks for your response stumbler, I just checked out your web link, and it pointed out that my symptoms are not actually real, it is all to do with the nervous system..lmfao.
Like I didn’t already know that?
I do despair stumbler, if the medical profession actually have a clue as to what is going on with MS.
Simply adding latin-based names to symptoms doesn’t impress me at all.
I have had several appointments with my “MS nurse” over the years, and if the past is anything to go by he will probably prescribe E45 cream to soothe my skin.. hahaha.
Besides, their hands are tied. They can’t suggest anything that isn’t on the NICE list of pre-approved medication.
I simply wondered if any member on here had any ‘Old Wives Tales’ that were worth trying.
We are all up for trying anything.


dekkor
4 months ago

Hi @sigmadelta,

I’m sorry you’re suffering with this. I can relate to how miserable these burning sensations can make one feel. I’ve been taking Nortriptyline for a few months now and it has definitely taken the edge off. Is this something you’ve already tried?


stumbler
4 months ago

@sigmadelta , if your MS Nurse is not helpful, have a chat with your GP.

As well as Nortriptyline, there is Amitriptyline, Gabapentin and Pregabelen that are all available for this problem.

E45 cream? Ha Ha!


sigmadelta
4 months ago

Thanks for all your suggestions,.
I am not to keen on heavyweight meds, particularly gabapentin and pregabalin, they are both narcotic and addictive, something which is not often made clear by GPs when prescribing.
My wife was on Gabapentin for 2 months for a spinal pain, she went through hell coming off it.

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