Hello everyone! I’m Paula and I was diagnosed with GBS back in October 2012, which turned into CIPD this February.
I get IVIG every three weeks am on lyrica, nexium and baclofen.
Recently went to my neuro and explained that I still have hypersensitivity and stiffness, she was going to put me on cellsept but it interferes with the nexium so she gave me prednisone.
Prednisone was horrible! Insomnia and sweating! Weaned myself off of it.
My neuro said I’ll never feel normal, but she can try to make me feel "better"
I have the worst case GBS/CIDP she’s seen, attacked myelin/nerves/axons.
My question is what does everyone do to make yourself feel as “better/normal” as possible!
What kind of pointers ya’all can give me?
Hi Paula,
First, welcome to the group! It seems many of us got the "you'll never feel normal, again" speech. We each just make the best of the good days and learn to take it easy on the bad.
My first (best) suggestion: know your limitations. And rarely, if ever, push past them. This is NOT a disease that can be worked through, around, over, under or any other way you want to try and avoid it. It is what it is. When you're tired, rest. Pushing past your limits can actually make you feel worse and can take days to recover from.
That being said, I would (as my neurologist did me) encourage you to still stay as active as you can. Muscle atrophy is a big issue with CIDP, and that only makes the situation worse. Then you not only have nerves that aren't working right, but muscles that are too weak to do what the nerves tell them to. And, exercise is great for mood. Very many people get depressed, thinking that their life is over. Well, it's not. We may have had to take a different path than planned, but it is not over.
I would encourage you to do as many of the things you did, before, you just may have to do them in moderation.
Keep in close contact with your doctor, keeping her up to date on what works, what doesn't and why, and what suggestions you have for improving your quality of life. It is a coordinated effort between the info you give the doc and what she does with it.
I hope some of this helps. If you have any more questions/concerns please post as much as you need! These are great people on this site!
Thank You for the feedback it’s much appreciated!
I try to keep active, unfortunately my pt sessions ended and I have to wait until next year to receive more from the insurance company. Unfortunately, it’s winter now so everything is inside now. So it’s makeshift gym in my living room.
I try not to over do it, but I tend to not realizing it until the next day or so.
IVIG also tends to make my body tired the day of and for the following week my legs are in pain. If I’m lucky I will get a couple days of relief, not good since I receive it every three weeks!
I’m still trying to come to grips on how I came to be here(flu shot of all things), the mountain I have to climb and the ocean I have to swim to be able to live day by day as bravely as I can, not only for myself but for my children as well.
I’m determined not to let it beat me, by willpower alone if I have too.
I was only getting my IVIG every two weeks until the doc upped it due to my decline during the interval. Maybe your doc can up your dose/frequency to help you maintain?