Reply To: Electric Shocks anyone??
I know where you both are at. CIDP for me started out very much sensory, but as I got progressively worse, my muscles became more affected. I know where you are and how it hurts.
I have several different kinds of nerve responses. One is the VERY SHARP INTENSE pain. It usually doesn’t last long, usually 3 to 5 seconds, but it is so intense it will drive me to the floor with a loud vocal exclamation. For me they can go anywhere now, but they started in my feet, and then calf to feet, then thigh to feet, or anywhere in between. Now they can happen in my face, hands, legs, arms etc. People look at me like i am freaky, but when the pain is that intense and sharp, it dominates your life.
The next pan is the NERVE BUZZING. For me it is like how your hands feel after running a chainsaw for an hour. Or a gas weedeater that has one string too long. It is just Buz-z-z-z-z-z-z-z-z-z-z-z-z-z, no relief, just on and on. This pain may last for hours at a time.
Then the pins and needles. Familiar with a leg “going to sleep”. I get that one too quickly, but it is easy to deal with… wait it out.
Sometimes an extremity will just get “hot on fire” This one is just under the BIG SHOOTING PAIN, but it comes and goes.
Numbness for me is now constant. It is frustrating to not feel, and I have found that the higher my stress is, the more the numbness proliferates..
So… How to deal with it? The first drug I had limited success with was Neurontin (generic gabapentin). After a while I gave up on it. I just got too groggy and gained too much weight. We tried a couple of others (Cymbalta was one) with little result. Topomax seemed to work, and I took that for a couple of years. Then I tried nothing for a while, but a part-time job ended that. the extra work stress made my cheeks numb and I needed something. Right now I am using Keppra. It seems to be making a difference, but the biggest thing I can do for myself is to keep the external stresses down. If I get good rest, take the multi-vitamin (nothing fancy, just Centrum), and try to NOT over exert myself. When the nerve pains start acting up, I need to slow down and get things back on square 1, or I will be heading to bedrest.
Why are the pains there? As demyelination continues and the nerves suffer damage, they “speak up” and want to be heard. If the brain hasn’e heard from a particular area in some time, maybe it sends an “URGENT” massage and it knocks us back. The solution? find one of the pain medications that help YOU (they all don’t work for everyone) and take it. Reduce external stresses and relax. Try to shed some responsibility and let someone else pick up the slack. You will be better in the long run.
My neuro told me that when axonal damage is very severe, you will not get it back. Heed the warning signs and allow yourself to heal before you push onward. We each have a level of functionality that we should not cross. Respect the line. Live to the fullest, but re3spect what your body is telling you, and frequently this nerve pain is telling you to “cool it” just a little bit.