When things get really bad?
I use the lidoderm patches and cut to fit the place needed. But, I don’t like how the ‘place’ affected gets totally sensorily dead.
Try doing some mind games to keep you going – I remember how MUCH IT HURT when I had my onset, and I compare what I feel now to then. Small comfort in ways but at the same time? I STILL CAN FEEL! I know of others w/CIDP who cannot feel anything at all-all over their bodies! For all the not feeling? They still have pain!
I turn to mind-games to work for me in that I keep telling myself I MUST be getting better somehow, even tho it might be worse now. I have to do this to keep my sanity. Positive thinking is the best power we have with this issue- to work & defeat it or at least come to terms with it.
Yes, it’s a given-that constant unrelenting pain! Don’t ever let your docs forget it. They could easily if they aren’t constantly reminded? After all, most of them do not have a clue.
Keep faith and learn or re-learn your limits again. Push them at times? But not too far and admit that you have those limits. Go from there and find other ways to get some things done.
There are many other meds that can be used to ease the PN type pains… Lyrica and Neurontin aren’t the only ones by far. Its up to you tho to decide which other meds to try or not in the long run. I am all for anything that can help you get by or thru the day….any day. Don’t give up, get sleep when you can!