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Originally Posted by DavidHC
Hello all,
I have an upcoming appointment with my neurologist and I'm thinking of speaking to him about possible medications for pain. I've been having some pain in my hands and feet (rarely elsewhere on my body, since I have whole body SFN), so there has been an increase, though not enough to need regular medication. However, because it has increased and because I sometimes have moments of pain, and finally because it's all a new development, I'd like to have a prescription in reserve in case it breaks out. It usually takes weeks for me to get an appointment with my neuro, so I don't want to risk not having something in case the pain comes on intensely and doesn't go away. I hope I don't have to use it, but I think it's a precautionary measure.
So I'm writing to get some idea what medications people use/would recommend for SFN. I have very little burning, and much more electrical currents, creepy crawlers, some numbness, internal shaking/vibrations. I also have various autonomic symptoms, like sweating issues and orthostatic hypotension. The pain is throbbing or stabbing pain when I get it and most often at the tips of my fingers and toes or in my hands and feet more generally.
I wouldn't know where to start, so suggestions are welcome. Thank you.
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Hi David. I'm unusually allergic so this may not be that helpful to you. But I did want to give you the worst case scenario that has been my own experience with the families of drugs commonly used to treat neuropathic pain.
I was put on Amitriptyline (at varying dosages) for three years. I became very fond of it because it helped with the pain, helped me to sleep and seemed to be side effect free. But finally I realised that some of my most annoying symptoms were becoming worse and I was also having to increase the dosage to get any pain relief. One day I just stopped taking it and my heart palpitations, severe sicca and extra fatigue all disappeared. The painful SFN flared up like mad for a few weeks though but settled down to exactly the symptoms you describe after a while.
Then I tried Gaberpentin as the burning pain returned. This was a traumatic experience for me and my husband as I became psychotic - terribly angry, visual disturbances and too dizzy to function and still suffering the pain.
After this the neurologist recommended Cymbalta. I was desperate enough to give it a go. Five months later my mouth was horribly dry, the SFN was exactly the same and the main benefit seemed to be that I coped with my symptoms rather better because it improved my mood somewhat. But I felt this wasn't a good enough reason to keep taking it because I wasn't clinically depressed. So I tried to taper off it quite slowly. Disaster! I had the most awful backlash - retching constantly, psychosis, dehydration and brain zaps. So I had to restart it and then taper by emptying the lowest dosage capsule down the toilet a tiny bit at a time. A week after finishing this I got pneumonia followed by a whole host of awful health problems, each of which hospitalised me for weeks. I feel that the Cymbalta withdrawal triggered a huge slump in my resilience somehow.
Now I have the odd night from hell with the SFN and flares of BMS but otherwise I'm like you with the widespread crawling, tingle, wet sensations, burning and freezing. My mantra is to keep my friends close but my enemies even closer. Pain being the main enemy - I choose to put up with it rather than risk further drug induced side effects or dependency. However I'm newly found to have primary Sjogrens so, after five long years of these symptoms slowly progressing, I'm very much hoping this means that my SFN is at last acknowledged as inflammatory in nature and I can get back onto further disease modifying treatment once more. Have you been tested for Sjogren's Syndrome I wonder?