Bad Neuropathic Pain
Hi Guys,
Looking for some advice here. I've had RRMS for about ten years, though not diagnosed until 2009. To cut a long story short, seven relapses in three years on no DMD, none in the four years since on copaxone. Result! But…you knew there'd be one….my predominant issues are sensory: continuous pain, pain, pain, paraesthesiae, numbness and pain, pain, pain. This sly dog can manifest itself as a dragging, pulling sensation combined with severe burning from the calves to the soles of my feet. Oxy-acetylene lamp, burning coals, steel clamp. Sometimes in arms and fingers, thankfully less severely than the legs. And it's gradually got worse over the years, presumably because of pesky demyelination.
Ok, now despite amitryptiline, pregabalin. lamotrogine, clonazepam (to counteract the terrifying nightmares and hallucinations from pregabalin and sleepwalking from lamotrogine) and nabilone when needed (yeah, I'm lucky), acupuncture and reiki I still have pain. Acupuncture and reiki, you read it right! And to be fair, they do diminish the pain for about a week or so. The pain is decreased by the drugs but not for long and not consistently. Unsurprisingly, I'm not a happy bunny (despite the nabilone!). I go to sleep in pain and wake with pain, so never feel refreshed. Titrating and fiddling around with the doses just exacerbates the unpleasant psychotropic effects which although I'm more pain-free, I can't function.
So, has anyone been in the same/similar situation? Am going to phone the Pain Specialist tomorrow, but will probably have to wait a while to see him. Any ideas in the meantime? This is Week Six and I'm fed up. Not anxious, not depressed (look at that list!), just fed up.
@honeyb so sorry to hear you are in so much pain. Just a thought, have you tried medical marijuana? I know some have had luck with it when they find the right strain.
Hi orlando 27 and thanks for your comment. Maybe we should start a club! Interesting that you take pregabalin and gabapentin, as they're first cousins. Do they work better together (Remain! Remain!- sorry couldn't resist an anti-Brexuit comment. 'Better together' was the clarion call of the group who campaigned successfully for Scotland to remain in the UK. But I digress.)? I have a TENS machine somewhere; I'll dust it off and see how it works. Thanks for this, I'd never thought about using it. I don't have much spasticity, so baclofen probably not indicated. Alternatively, the nabilone which is synthetic cannabis, might be loosening me up as the original trials were for the relief of spasticity and the discovery that cannabis reduced pain was a spin -off. I'll ask my neuro about lemtrada. I have the feeling that it's only used for rapidly progressing RRMS in the UK, but I'll find out. At the moment I'm on copaxone which although seems to have annihilated relapses, has done a big fat zero for the slow and seemingly unrelentless demyelination. Fingolomid was mentioned but as my MRI showed no new lesions (horrible word, let's call them spots), he suggested staying on copaxone. No surprise that Richard Pryor described the condition as More Shit!