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.

Chronic Inflammatory Demyelinating Polyneuropathy

In the summer of 2024 I had some tingling and numbness in my fingers and in my feet. I tried to ignore the symptoms, but in the summer of 2025 they got considerably worse. At that time I was scheduling total knee replacements, first for my left knee and then eventually for my right knee, and I wondered if my nerve issues in my feet were really due to bad knees. 

In October, I had a total knee replacement of my left knee. It became clear after surgery that this was not linked to my nerve issues. Eventually, I had a nerve conduction test (EMG) that came back with a diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP.). I have an auto-immune disease, a disease which is causing inflammations that remove the myelin sheath from my nerves. As I understand it, the myelin sheaths are essentially insulation and as the sheaths disappear, my nerves began to short out. 

This is a chronic and progressive disease, but there are attacks on the disease intended to put the disease into remission and stop the deterioration — or even allow some healing to occur. The most common treatment for the disease is an IVIG infusion. IVIG (another four letter acronym!) is an IV infusion of donor blood plasma that is intended to reset some aspects of my immune system. Beginning this Monday (March 16, 2026) I will have five consecutive days of four hours each of IV infusion at a local hospital. (I will not need to stay overnight.) After that, it is common to have the IV infusion one day every three weeks or so, and so evaluate the success of the infusion. My doctor has put in a request to the Mayo Clinic in Rochester, Minnesota, and so I may eventually get to be a research subject there. (And so my research career continues? If they study me, can I be listed as an author? I wonder if there is some physician at Mayo that would like an Erdos number of 3?)

I alternate between occasionally finding this very interesting — Why do my fingers feel like they do and act like they do? — and also, of course, finding this very frightening. Jan and I have both been a bit depressed by this as we try to figure out the direction of the disease and my disability.

I now walk with a cane. I have small issues with my fingers and so I do not write well. I'm beginning to dictate instead of type. (A draft of this post has been dictated using the MacBook’s F5 function) The constant barrage of symptoms from my nerves, especially tingles and stings in my feet, make it difficult to sleep at night. I have found two solutions to that problem. A doctor prescribed gabapentin and that certainly helps. And a good friend suggested THC gummies. I’ve discovered that a 5 mg THC gummy, which can be purchased legally in Michigan, makes me feel relaxed and does seem to remove the nerve pain for some time. 

At this time, I'm trying to find a good rhythm to the gabapentin and looking forward to next week's IV infusion.