As some of you know but others don't I have been suffering from nerve pain in my feet for the last 4 years. The pain has put me in a wheelchair and the medications have been less than promising. It helped destroy my second marriage and put me on disability. And NO ONE has been able to figure it out. I've had bone scans, ultrasounds, an MRI, xrays, blood tests, vascular tests (to check blood flow) and nerve conduction tests (to check the nerves). I've been asked if it was all in my head (meant that it could be psychosomatic and I have checked it out) Well you just never know. Somebody here on JWD mentioned Erythromelalgia (EM) to me in a PM. I have done a lot of research on this problem and it describes it so well that I joined a yahoo group for EMers. Their stories mimic mine. There is no cure. They have no idea what causes it. The professionals have few ideas on how to improve quality of life. AND it seems EMers have very differnet medications to help them cope with it. That means there is no one medications that will benefit all EMers. I've tried a lot of different meds. Some made things get worse. Some did nothing. Some made more problems due to side effects.
- Anti-inflammatories - made things worse
- Elavil that heps me sleep
- codiene - created terrible sleep problems resulting in having 4-5 naps during the day
- SSRI - packed 25 pounds on me and gave me anxiety attacks
- Lyrica (anti-convulsant) back in May, and had a dreadful reaction to it. My arms started shaking and having spasms so bad that I dared not hold anything hot incase I spilled it all over myself.
I was staggering all over the place like a drunk person. and would suddenly break out crying/sobbing
So I was leery of trying another anti-convulsant. Much of the literature for neuropathic pain recommends Gabapentin as a first choice for this kind of pain. Initially the gov't would not pay for this medication. But after trying various medications with poor results they finally approved it. (There was no way I could have afforded $26.00 a month just at the lowest dosage and that would increase as we titrated the med up at least 10 times). Well I started taking it Monday night. I wasn't expecting any reaction and I was not disappointed. But last night there was a HUGE change. I have slept with my feet hanging over the side of the bed and with no covers on them for the last 4 years. The pain from just a light sheet was unbelievable. Last night I was able to pull both feet up onto the bed AND have them covered. It's only been 36 hours but what a difference. I've also been able to go back to sleep almost immediately meaning I am getting more real rest. On the codiene I was only able to sleep 2-3 hours without waking - wide awake. Will it last? I don't know. But I'm on the lowest dose so there is room to increase the dosage. I still have pain and sometimes it is tough to get through it but one step at a time. hmmmm Maybe I should try a pair of shoes. Well I put my slip[pers on and I left the computer. I started moving furniture around and the top of my china cabinet fell over along with almost everything in it breaking a few dishes along the way. So there I am with broken glass all around me and the weight of this solid wood cabinet that weighs a ton leaning on my shoulder. Now if the phone was closer I would have called for help and I'm surprised no neighbors came to check on me. I was finally able to prop the cabinet up to take the weight off me and moved to the other end and was able to get that part back on the bottom half. And then went back to the first side and straightened it up and got it back on the bottom half. If that isn't a test of how this med is doing I'm sure I don't know what is. I still have my slippers on and with the broken glass everywhere I'm not too keen on taking them off. But the pain is not too bad. I'll see how it goes over the next few hours. Think I will try to attach the top to the bottom so this doesn't happen again. Lee PS I'm still nervous to look at what is in the top. I had my crystal glasses in there
I was staggering all over the place like a drunk person. and would suddenly break out crying/sobbing