Not true. Those who are committed to helping others deal with the serious illnesses of GBS and CIDP are still here.

I found the article “Exercise for CIDP.” It’s in the Summer 2010 issue of The Communicator, the newsletter of GBS/CIDP Foundation International. Perhaps they still have copies available.

It’s a matter of pacing yourself. You do need to exercize, but must avoid overdoing it.

Right after I went home from the hospital I started doing outpatient physical therapy twice a week. The rest of the time I mostly rested up for the next session. I could just barely walk with a cane a month out of the hospital, so just getting to and from therapy by bus was an effort. Gradually, my strength and balance improved, and I was able to expand my walking range and be more active outside of therapy. I stopped physical therapy after six months. Now, I just do some exercizes at home, but mostly just try to get out regularly to run errands. I’m necessarily more sedentary because of my disability, so must pay more attention to diet and exercize to stay in shape.

I doubt you can avoid sore muscles — some of that just comes with the disease. My legs are sore every morning regardless of how active I have been. I find that getting up and around makes them feel better, but on the other hand, being on my feet for too long is tiring (and painful in the feet). Finding the right balance of activity and rest is the key.

My position is that the specific trigger isn’t worth worrying about, because the most important factor is that you were susceptible to it whereas the great majority of people are not. There is no suspected trigger which causes GBS to develop in most people exposed to it, and no way to identify the trigger for any particular case of GBS, with the exception of Campylobacter, if that pathogen is found.

Axonal damage is not unusual for both GBS and CIDP. It takes much longer to heal than demyelanation, but improvement is possible. Recovery is not necessarily 100%, although it can be. Time will tell. I am still improving very slowly more than one year out of the hospital. My attitude has always been to do the best I can with the hand I was dealt.

I, also, worked at a keyboard for long hours, and used to have serious back pain. Then I bought a good, executive-style chair with a high back and adjustable height and stiffness. It made a huge difference.

There has to be a division of responsibility between your doctors, and both need to know all the meds you are taking anyway. I don’t see a problem here, because you should discuss that drug with your neurologist anyway.

I’m conservative when it comes to taking drugs. Some doctors wanted to give me an antidepressant in the hospital, but I refused them. I wouldn’t presume to say whether you should take this drug or not, but you certainly should read up on it and discuss it with your neurologist before deciding to take it. The insurance company always has its say, of course.

Putting a problem off on the neurologist does not seem like a good reason to drop a General Practitioner to me. I see my GP for high blood pressure, skin rashes, and other ordinary stuff. I see my neurologist for CIDP. I’m not sure where depression would fall., as I was not treated for it.

I had periodic episodes of lower back pain long before developing CIDP, and the frequency is no different now. I don’t believe there is any relationship in my case, and I doubt there is a connection in most cases of back pain. Back pain is pretty common.