Reply To: Recent CIDP diagnosis

February 20, 2018 at 5:17 pm

Regarding alcohol, I have a link from the Scottish NHS, somewhere, where they address alcohol consumption and CIDP. Basically, they said, since CIDP already affects your balance, excessive drinking will make that worse : ). Moderate alcohol consumption, they went on to say, was just fine.

My original doctor started my on 80mg of prednisone in December of 2017. It really never helped me and I sought a second opinion in late March of 2017. My current doctor started me on regular doses of IVIG in April of 2017 and he also started tapering the steroid doses. Happily, next week will be my last week on Prednisone!!!!! Hopefully then I can get rid of my fat face and belly.

As a precaution, once I’m off steroids, he said he will continue the IVIG treatments as is to make sure the CIDP stays in check in the absence of prednisone.

Overall, my arms and hands seem to have healed rather well. I still have some residual weakness in my calves, and my feet at the end of the day hurt with the added bonus of numb toes.

At this point, I think the numbness in the toes and foot pain is here to stay. The other issue I have is fatigue. I built myself up to handling 8, even ten hours at work, but after that I am worn out. I often go to bed to at 7:30 or 8 and get up at 5:30am. I find 10 hours of sleep allows my body to recuperate to an extent.

But, at the end of the work week, my day off is a lost cause, as I need to rest and rebuild my strength.

This is the damnedest malady I’ve ever had. I’m grateful that I progressed from not being able to walk to now resuming a 50 hour work week and being able to meet the physical needs of the job once again.

I think, though, I will have to come to grips with my foot pain and fatigue as the long term effects of CIDP that just will not go away.