Your life sounds just like mine with the 60 hour work week, board of directors, and other responsibilities of running an organization. In April I started to really struggle — getting foggy, cranky and less able to process information and act decisively; by May there was a rumor that someone was going to speak to the board about my decline in performance. That gave me the kick in the pants that I needed. Fatigue is a huge problem — caused by the disease certainly but also likely attributable to the meds. And you are so right about the role of stress in fatigue. I knew if I didn’t slow down and get the rest I needed I would simply fall farther and farther behind. It was scary to fully disclose my situation to staff, but of course those closest to me knew something was wrong anyway.
So now I am in the office 3 days a week, work from home 1 day and am off 1 day. With the blessing of my board, I am putting together a management team and am training someone to take my place as acting ED when I start stem cell transplant treatment next month in Chicago. I am hoping that this will be the magic bullet that enables me to get my life back … or most of it. Sharon
Dick S! I get the same thing! The ringing in the ears and then my hearing goes! Usually shortly after that I get an attack on my nervous system. I agree it’s an indicator of it being part of the disease process! Funny that you mentioned this. I get really dizzy too! When I get that way, I can’t drive!
Dick S! I started out in 1989 with the same symptoms. And then a year later the nerve damage had progressed. That pain you are talking about sounds identical! I describe mine as feeling like I placed my hand in the stove and forgot my dishcloth to get the hot pan out and touched the pan and got burnt! Only that the burning pain never goes away and stays over and over again.
Well you see what happened to me this past week! Landed in the ER with mine and my neuro finally decided it was time for IVIG’s. And was given pulse steroids at the same time!
They gave me a new drug called Oxycarbamezeprine. Yep! Long name! I take that with my Gabapentin now and boy does it help that bee stinging fire pan burning pain.
Flexeril also helps with those muscle spasms. That might be something also worth trying. But that Oxycarbamezprine can make you feel sleepy alot at first. But I needed that sleep! Really did!
I hope this helps some! Bless your heart! I truely feel for you Dick S!
Going through the same thing you are going through and yes! I am seeing 25 percent of a wheelchair and cruthes now too! Sucks! Really sucks!
I have a beautiful mind with all these things I want to do and this crap is keeping me from doing them!
Hope my suggestions help! Feel better soon! I know! Easier said than done! This CIDP stuff really is not fun having and I wished these scientist woud figure out a cure for us all! That to me woul be heaven! Hugs
Was he at vandy? the doc you refer to?
I did a google search on him and found this. Looks like he came from Wake Forest. They used to have a good basketball team.. hehe
When I went to vandy they acted like they could care less about CIDP. Like this guy they were all about als. For me vandy was a bad experience, in more than one way, and on more than one occasion. Having said that, Dr Uskavitch is moving his practice there, and I shall follow. I’m doing better under his care than I have in years. Those experiences goes back a few years so maybe it has improved. I was in the vandy stallworth rehab, oh 2 years or so ago, it was the most miserable experience of my life. They couldn’t get the correct drugs, correct amount, on and on. The people where cold and uncaring also. I was worse when I left, than when I got there, because of an injury I received there. I would rehab in a gutter before I would ever go back to that rehab center. 6 months later I was put in Tennessee Christian Rehab, and I never had it so good. The nicest people in the world. They have since been bought out, and I hear it has changed. This year marks my 9th year with CIDP, it put me out of work within a month after I started getting weak. I think I have be admitted to or seen a doctor at all but 2 of the hospitals in this area over the years. I hate the thought of going back to Vandy.