OK, I think the newbie has figured it out….

Welcome to the forum. You will find lots of helpful info here. As far as your questions go I will try to address them: “Any suggestions on how you all manage (if thats the word.) to carry on?” The way I do it is: I do everything I can but then listen to my body and when it says rest I do just that! Even if it means not doing something….fortunately for me, my family is understanding and knows that I do what I can.
“How do you explain it to others on days your body just isn’t working right?” I can tell you how not to! (A friend of mine corrected me one day!) Don’t say I have a problem with my nerves! She told me it sounded like I had psychological probems!!!! 😮

“Also, the pain for me is very intense, is this a common theme?” Yes many of us have pain or tingling that is quite intense. Many of use take neurontin, lycra (not sure if that is the correct spelling) and antidepressants that help with pain such as cymbalta. If you are not taking anything at the present, one of these drugs might help.

Again welcome and feel free to post questions or use the search function and query past posts as I said there is a wealth of information here.

Hi Busy Mom,
My son Kevin who just turned 11 has had cidp for 15 months now. We are getting loading doses every month over 4 days. His energy level is almost back to normal. I suspect that after you find a treatment schedule that works for you and you follow it for a while, your nerves will have a chance to repair and there is a good chance you will be stronger. I do not know your history, but if you are maintaining or managing your farm duties, mom duties etc., you must have a mild case as my son (compared to some) I imagine your ivig will help you to get back to normal. Kevin was at a point where he could not even walk, get in the car, button his pants, zipper, hold a pencil, you get the point, he was pretty weak. NOW, he is pretty much back to normal. As a matter of fact, today we are going to go paintballing with 12 of his friends. The gun alone weighs about six pounds, plus all of the running.

In my opinion, the best way to explain things is to have a family meeting with info from the website describing the condition and the limitations you could face. When we have doubters, (and we do) I print out posts from others explaining what they are feeling to show family members this is real. I gave everyone a copy of the info, even the school and teachers. If you work, maybe you coould do the same at your job. For quick explanations, I just tell people Kevin has an overactive immune system that attacks the myelin sheath (or coating) over his nerves. I explain that if he does not get ivig, a product compiled of about 20000 different peoples immunities, he cannot walk. I let them know especially at infusion time he gets very sick, throws up and has headaches. I also tell them that he is really strong and just wants to be treated regular. BUT…. if he tells you he is too tired to do something, it means he really is and you have to respect his request.

For the most part, people are pretty understanding as long as you give them a detailed explanation. The biggest obstacle is for those who do not know, because the outwardly appearence looks so normal, people don’t get it unless they are told.

Regarding pain, God has blessed us and we have not had to experience that except occasionally. But as mentioned, many on the site take Lyrica, neurontin, and cymbalta. Cymbalta works for pain and depression. I do not know, but maybe when the ivig starts working, putting out some of the inflamation, some of the pain will subside. I am just guessing, as we have no experience in pain. Maybe someone who has experienced pain can tell you.

Manage is a perfect word. You will have to do just that. Manage with what you have, delegate to others, and give up things that really aren;t that important. You will gain a whole new perspective on life and what is important and what is not. I do not even have cidp, and just taking care of Kevin has taught me to prioritize and circular file!! That is the good that comes out of this illness. You find new ways to manage, realize what is important in life and appreciate what you do have. I know even at 43, this experience has helped myself and Kevin grow to be better people than we could have imagined. You will just have to learn to let go!

Good luck to you and best wishes for the road to a healthier New Year!
Dawn Kevies mom

Welcome! We all have had problems trying to even explain how we feel just to each other. For the ones that have not been educated on GBS/CIDP with all the variants it is very had to express how we are feeling today because yesterday it was very different. You have good days and bad days. Describing the condition and the limitations you could face will be with at first and then because they see you on a good day once they stop asking what they can help with because you must be cured! It is best to listen to your body and explain to your family they need to learn others jobs so they can pitch in and pick up the slack. Also, step back and take a deep breath and ASK them to help take some of the duties from our routine. Let them carry the laundry basket. Maybe all you can do is load the washer and dryer and then your energy is spent. They may be asked to fold the clothes and put them away. Also let them fold them backwards or ugly it does not matter. It hurts to see things done the “wrong” way but reach out for that extra help. You will start to see what was important to you before will all change and having good friends and your famly around is what is important and not that the window seal is dusty! If they can not see out the window, sooner or later they are going to pick up a rag and wipe it clean. Keep a Journal so you can see how great it was on those good days and how much you do get accomplished as a family with your circle of support! You will find we admire our caregivers here very much. They have kept our lives comfortable for us, so we can take care of ourselves. This is your new job for now! REST and take care of yourself! It is not greed and with this illness there will be no speed. Keep the lines of communication open with everyone, family, friends, doctors and us! We are all here for you! Keep checking back many will add to your thread and give better ideas. Stay possitive is my advice to you for the New Year. Happy 2008 by taking one day at a time. Enjoy!