I was diagnosed with MS 14 years ago, and my primary symptom has been nerve pain. This manifests itself as trigeminal neuralgia, and a sensation of burning in my feet (from my ankles down, it feels like I’m wearing boots made of lava that are two sizes too small). I’ve been through nearly all of the anti-epileptic drugs to treat nerve pain - gabapentin, zonisamide, carbamazepine, pregabalin, zonisamide…now taking levetiracetam and topiramate.
6 weeks ago I started on Aubagio (after failures on all the injectables, Tecfidera and Fingolimod); since then, my nerve pain has got steadily worse, to the point where I’m going out of my mind with pain. There are 3 possible reasons why it’s got worse - current pain meds are losing their efficacy; my MS has got worse; or the Aubagio is making it worse (having seen my MS nurse last week). However, nothing has been suggested to alleviate this
I’m at the end of my rope. I can’t sleep, I cannot get comfortable in any position other than laying down. I cannot see a way out. There are no anti-epileptics left for me to try (other than sodium valproate, which I’m not keen on taking); and that’s if ever hear back from my neuro.
I’ve started hurting myself in other ways to distract myself from the pain in my feet. I’m not sure how I can carry on.
Any advice/help would be very gratefully recieved