Pain and CIDP

Hi Everybody, I was diagnosed about 10 weeks ago and have had 8 infusions with IVIG. I do have improvement in my legs they are stronger and I can walk a little with the walker but I still have a lot of pain in my legs. My Nero. Doc. says that its not the CIDP causing the pain but my bad back and I have a very bad back. I have been trying to find another Dr. but I cant find anybody that will take me. Is there any body else that has to deal with a lot of pain will this get better with more treatments?

I have scoliosis and degenerating disc disease in my back and neck, so I guess it's what you call a "bad back". I've had 5 IVIG treatments but don't expect it to have any affect on my back problems. Gary

The problem with pain is that it could be from the back, it could be genuine real pain in the legs or it could be "phantom" pain because CIDP does wicked things to your nerves and your nerves are playing with your mind.

Fortunately I did not get as bad as you before diagnosis - I don't need a walker - but I get those pains as well - probably due to all three reasons, with minor contribution from the back. Neuros can be smart but that does not mean they have YOUR answer. A competent chiropractor will probably sort out the back issue - no doubt you have lots of detailed X-Rays (etc) to help, AND - if they are competent they will tell you if they can not help but should be able to either support or otherwise what the Neuro says about your back.

I find that exercise does bring on pain - but really have a problem sorting out what might be "real" and what might be "phantom" (nerves playing tricks with my mind). The only clue I can get is that if they are probably "real" then they are fairly constant. One that shoot in and out for no obvious reason might be "phantom".

Will it get better? Like me - we can always hope! But everyone appears to have the same message - slowly!

IVIG helps to a point but it is used so you do not deteriate further. I get 62gm X2 every 3 weeks

Be patient it will get better. It took me about a year of being on ivig for the pain to get better. I also take gabepentin for parathesia. Your nerves are going to hurt as they regenerate but your pain will improve. Hang in there stay calm and have faith