Help please

Hi all,

This is my first post… So hello to you all. :slight_smile:

I am looking for some advice… What do you do when you have a lot of neuropathic pain tingling in your arms and legs heaviness, weird sensations. I am really really struggling!! Am currently waiting for a MRI which I hate.l but suppose it is a means to an end!

I was was diagnosed about 5 years ago and diagnosed with probable MS about 12 years ago. This pain is really getting me down so any suggestions would be most welcome.


Hello Polar Bear.

My MS nurse is on holiday… Think everyone sick of hearing from me… Got a GP appointment tomorrow. I am on 30mg of duloxitine and 450mg of pregabalin… Was on the full dose this time last year and felt great… Thought I should reduce it and I have had a really tough few months so feeling very sorry for myself!!

The he advice I have been given is to bear with the hospital re the scan…

Toria x

1 Like

Hi Toria, I have almost constant neuropathic nerve pain in my toes which was unbearable, I am now on 800mg of carbazepine which makes it now bearable, still there but much much better.

take care, Kate xx

Hi Toria,

Can’t help you with meds but ask your Dr for a sedative for the MRI it will be a bit more bearable if you’re a little bit out of it!!

Good luck

Jen x

Hi Toria

I am on Amitriptyline and Gabapentin, Amitrip has helped the pain in my back but the burning pain in the soles are still in my feet and I’m on quite a high dose, it’s all trial and error. Hopefully the Neurologist should help you with this, or failing that a good GP. It’s good to see an MS nurse as they can at least advise you though they aren’t able to prescribe, a good one will speak with the Neuro on your behalf.

Good luck

Wendy x

Hi Toria

I have tingling in my left hand constantly but I work 32 hours a week and when I’m busy I don’t notice it so much. It bothers me more when I’m resting.

I also have burning in my left arm which is well controlled by 20mg of amitriptyline. I’ve been on that for 5 years now and have tried to reduce it or cut it out and the burning comes back so I stick with the amitrip. As for the burning in my feet, I live with that as it comes and goes. If I walk a long way, my feet burn when I stop to rest. They also burn at night so I stick them out of the covers and put the fan on them or I put a freezing water bottle on them (I keep a hot water bottle in the fridge for this).

I hope you get some relief soon. It sounds as if your pain isn’t giving you any let up. Make sure your neuro understands that this is really affecting your quality of life and it isn’t something you can just ‘grin and bear’.

Tracey x

I have constant tingling in arms, hands and legs among other problem. I have started taking Amitriptyline and it has started to help, I do try not to use my iPad too much on an evening as this makes my hands and arms worse. Consider what you do and if anything makes you worse then try to make adjustments.

Best wishes

Jan x