Reply To: Trying to figure out if I'm having a flare up
I’m a nurse with CIDP and similar problems. Great difficulty getting to sleep, leg pain and burning in both legs and spasms in my right leg. These symptoms can be common as the disorder progresses. I have very good days where I am active and can work around the house and go out to the store. Currently I’m having a challenging time where I have been sleeping most of the day, need to use the walker/Wheelchair and have greatly increased symptoms including shortness of breath.
According to my doctors and research this is “normal” for what we have. There is really very little new research on CIDP unless you are in a clinical trial.
What works for me:
IVIG infusions: 250 mL of normal saline followed by 15 grams of 5% Octagam given over 4 hours. I have this every 4 weeks and the infusions are given 2 days back to back. The side effects were too many to infuse the full dose of 30 gm in 1 day. Splitting the IVIG over 2 days and pre loading with 250 mL of normal saline has fixed my adverse symptoms. IVIG works very well for the fatigue, breathing problems, pain and spasms. Unfortunately, it only lasts about 2 weeks. I pre medicate with 1000 mg of Tylenol and 50 mg of benadryl.
Leg pain: walking and standing of the most affected leg.
Leg burning: going out on the porch and standing barefoot on the cold floor. In the summer I have a fan blowing on my feet, but the cold floor works best.
Sleeping: I take 300 mg of gabapentin at 7pm. Then when I cannot sleep I take 50 mg of benadryl and do something around the house until it starts working in about 30 min. If I am really tired and shaky, benadrl doesn’t work and
a shot of whiskey or rum works best. As a disclaimer you are not supposed to mix gabapentin with alcohol. I like your idea of the MM. I’ll have to look into it.
As a side note, I was a first responder after 9/11 and the doctors at NYU say there is no link between CIDP and CIDP. I’m interested if you were there and if there are others that have developed CIDP.
Thank you for posting your question, it feel good to write this out.
Have a beautiful day!