I have Reflex Sympathetic Dystrophy, and recently diagnosed with Neuropathy, and Central Pain Syndrome. I am unemployed, still have Cobra insurance, but it won't cover tests until I pay out of pocket $5000 with I do not have. I have filed for disability. I did have extensive bloodwork last month and did not have any low vitamin except D. No high sugar level etc. We think the neuropathy could be from the RSD, or the Central Pain, or from antibiotics back in April. At this point, both Neuro and Pain Doc say let move forward.

Many of the meds you all take have already been tried with me for the RSD - neurontin, lyrica, cymbalta, Klonapin - can't take them. Recently tried Savella. Could not urinate. Pain doc put me on Methadone. Spent 2 months going up in dose, but only took care of 10-15% of pain. Not worth it. Going back on Topamax now - up to 200mg so far. Has not helped so far.

Neuropathy symptoms - tingling in hands that goes almost to elbows, in feet halfway to calves - happened at same time, and within a week. It comes and goes a bit, but probably there 85% of the day. It is a possibility this could be something spinal with me, but it is an off chance... and I cannot afford an MRI at this point. A couple months ago started getting buzzing sensations in feet and hands, electric shooting pains from hands to wrists to arms - with the RSD I get horrible electric pains in upper body, but never had them in hands before. I am much worse at night. With the RSD, I usually only sleep 2-3 hours, but now, I cannot get comfortable at all laying down, the pain is unreal in my hands and tingling in my hands and feet. Feet don't hurt any more than normal (have RSD in both feet) but hands hurt a LOT. I only have slight RSD in right hand, but do have RSD in left hand. But this pain is different than the RSD pain.... and mostly at night. It is worse with low barometric pressure.

No amount of rubbing, ketamine cream, voltarin gel, heating pad, epsom salt soak, elevation nothing has helped it. Sometimes the hand exercises I learned at Occupational therapy eases it a little.

My question for you all is - I am loosing the strength, flexibility and mobility in my hands. When I tried to type out the answers to questions to the social security forms I ended up getting dictation software - which I am using now. I can not open a small bottle of soda, a bottle of water. I sent for little tools to use to help me do it. My hands are not numb - well sometimes the tips of my fingers and toes are numb, but most of the time they feel like they are asleep, or in vats of 7-up -very very tingly - but I cannot grip anything. Especially when I get up in the morning, I cannot close my fingers to touch the palm of my hand. My hands are so stiff. I heat up a microwave heat pad, heat them up and start working with them. An hour later, I can move them about half normally. 4 hours later, they are close to normal, but still about half what was my "normal" strength, which is a lot less than the average person.

I use a service dog for mobility. She wears a harness that has a fat, padded handle. For a year, I used her on my weak side, which is my left side, so that left my better arm for reaching for things, opening doors etc. Now, my hands are so weak I cannot keep hold of her, and I have to keep switching her from my left to my right side every 3-4 minutes. Thank Heaven she was trained to work from both sides. The other day when we were out, and I kept switching her, she looked up at me like, Hey, this is getting old, I am getting dizzy down here! She will adjust, but I wondered if this is something that is normal with Neuropathy or if it may be a sign that it really is something spinal going on. I go back to the Neuro and the Pain Doc in mid Sept.

The neck problem I have is cervical spondylolisthesis between C3-C4 and C4-C5.

I am also having a lot of problem coordinting my fingers typing. I am having problems holding a pen to write ledgibly for more than a few sentances (and it is also painful). Driving a car it is hard to hold the steering wheel. I bought a steering wheel cover that is anti-vibration and big and padded and it helped, but it is bad if I have to drive more than 15 minutes. My pain doc is at Cleveland Clinic, and it is a 3 hour drive. I hope I can get someone to go with me! Yikes.

Does this loosing strength and mobility seem normal for neuropathy? Do any of you have this? Should I be seeking other answers? Should I go for an MRI even though I have no way to pay? I already owe $900 for all the blood work and will have to work out a payment plan for that - with zero income that is not easy. Living off savings now.

Thanks!!!

Juli