Living with CIDP

As I adjust to life with CIDP, I collect here what I will call "CIDP hacks," that is, steps I am taking to mitigate the effect of this disease.

1. If possible, stay ahead of the pain. At this stage, for me, this involves six 500 mg Tylenol pills spread across the day and three 100 mg gabapentin pills spread across the afternoon and evening. (I have tried THC gummies and have found that a 5 mg or 10 mg gummy makes me feel relaxed and sleepy and does seem to reduce the pain. At this time, I'm focusing on gabapentin for this role, but the gummies may be an alternative.)

2. Hunt for a good way to sleep. In a regular bed, my tossing and turning seemed to upset some nerve somewhere and I suddenly woke in pain. I have discovered that sleeping on the couch gives me more control of my sleeping positions and thus a better night’s sleep.

3. Use speech-to-text for correspondence. I have always been proud of my ability to type and write, but the numbness and loss of coordination in my fingers now seems to make that hard. I have discovered that my iPhone has a speech-to-text option, as does my MacBook (the F5 key) and so now I am dictating my email and text messages. The dictation is not perfect, so I go back and make a few corrections, but this is much faster than trying to type.

4. Prepare for the fatigue. I get tired very easily. I try to factor that into my plans.  I try to make sure that when I “hit the wall”, I am at home and can collapse onto the couch. 

5. Find some good shoes. It is hard for me to put on shoes. So I found on Amazon, for $50-$60, some shoes that I can step into and easily put on.

6. Grieve. There is a mental/spiritual/psychological aspect to this disease, as it greatly disrupts my lifestyle. I am not sure what the solution is, but I am trying to identify this impact and deal with the associated grief. It is grief – I miss my old lifestyle and I miss my plans for the future. Since I must slow down, I am now trying to enjoy the slow lifestyle and not feel guilty for taking naps, sleeping in, or in other ways being inactive. (As often with depression or grief, it is important to have a small circle of friends who are supportive. I am thankful to my wife for helping me and there is a small collection of friends from my church that seem to keep up with me.)

Some Recent Improvements in my Battle with CIDP

From March 16 to March 20 I had daily IVIG infusions at the Cadillac Munson hospital in Cadillac, Michigan. The IV infusion took about 3 1/2 hours each day and involved insertion of an IV, some Tylenol pills and, prior to the IV drug, some benadryl by infusion. The benadryl created some drowsiness and encouraged me to nap during the first hour. After that I read email, rummaged around on Facebook, chatted with the nurses, and dozed off some more. I had no side effects.

By the end of that week, I had noticed some small subtle improvements. In the week that followed, I was no longer digressing as I had before, and my walk was a little bit better. Some pain in my feet was reduced (to level 2 or 3 instead of levels 4 or 5.) This was encouraging!

My condition is still frustrating. I have pain in my feet, especially in the afternoon and evening, and at times it's hard to concentrate. It is still very hard for me to get up from a sitting position. Walking, although done more smoothly, is still painful.

About a week after my infusion I got an email from the Mayo Clinic in Rochester Minnesota inviting me for a visit! In this way, I will be seen by some specialists in this disease, and I am hopeful that this will lead to a constructive regimen for the future.