November 11, 2011 at 12:06 am

[FONT=”Microsoft Sans Serif”]I am growing so tired of many personalizing their role in everything.

The bigger picture!?[/FONT]


April 27, 2008 at 7:27 pm

I can relate to being so tired that I had to go rest after brushing my teeth and having to eat meals in bits because it was too tiring to eat a “normal” meal all at once. I would not call either of these “normal” for CIDP, because of two things. 1) I do not think this is normal (but it happens) and 2) there does not seem to be a standard for all people with CIDP–there is a lot of variation.
What you might do….
Plan to rest after any activity.
Get better pain control–this is really important because pain is extremely tiring and it sucks the life out of you.
Eat in little bits. Use a microwave to reheat or serve only one thing at a time or (what I did most) eat what is best served warm at first and later eat things that the temperature really do not matter.
Also, why wait until you are off the prednisone before starting PE. I cannot think of any reason to do so. You are worse. Get the PE going!
Have you discussed the runs with your doctor and are you both sure that this is not representative of a bowel disease that might also be causing/contributing to the neuropathy. I do not know if you spend a lot of your limited energy running to the bathroom, but if so, think about ways to not use all your energy for just this. If you can be sure that the loose bowels are not infectious, then Imodium or similar medicine might give you a little longer rest time between trips to the restroom.
I am not sure why standing is so hard. It can be because it hurts, in which case, you need better pain control. It can be because it takes more energy now to balance, and using a walker or even cane can help this a lot. I lean against the wall a lot, too! Oh, well.
Finally, hang in there and keep hoping for better days.
With Hope for cure of these diseases.


April 17, 2008 at 10:28 am

Hello Linda,
We actually have “THREE” chronic illnesses, Chronic Syndrome, Chronic Fatigue and Chronic Stress to fight and we do get so tired of the struggle.

Would a Hug from all of us help!