I can use some Help and Guidance

Like several others I am new to the site and have been diagnosed with CIDP just a few months ago. I have it in the legs, arms and hands. I fell down once and I did not understand WHY so I got with my doctor to research what happened. I have gone through my first IVIG session and like others have had some side effects like headaches and now a rash on both lower legs. Can someone tell me the aches and pains in the lower legs (as I am having terrible pains, especially in the left leg from the knee on down) is this supposed to be there like this? I am not positive on what is going on. I did have knee surgery a few years back on the left knee and I knew it was not 100% right so I cannot tell if some of the pain is due to the surgery or from the CIDP.

One more question and I need guidance. I am having a terrible time sleeping at night. Again because of the legs. I find that I can only sleep in one position, and only for about an hour and a half at a time. Then I need to get up, head to the bathroom in order to cool my legs down from the swelling and pain. This has been going on for about 3 months now and I sure could use a full nights sleep. HELP....please.

Thank you for reading.


Hi Mack,

Can offer some empathy........just finished my first IVIG session yesterday and had the flu like symptoms, headaches, etc. Am new to this disease too, just diagnosed in August. Check back in with your doc and ask for help with the problems you are having. Hope things go better for you!


I'm nervous since I am starting first treatment Thursday nite. My doc diagnosed me in July and I have other autoimmune conditions as well. He hopes the treatments will help with them. I am concerned this is going to impact my ability to continue full time work. But right now I seem to spend a lot of time on the couch with my dog exhausted. Hopefully my energy level will increase dramatically. My doc has me scheduled for 4 treatments in a 2 week period and then once every 2-3 weeks initially going to once every 3 weeks. Other than the rash and headaches did you have any other side effects?

Had the headaches the 1st day, with the flu=like symptoms but the next 2 days were better. The arthritis in my hands is improved......less pain. Other than those reactions I seem to have done ok. See the neurologist mid'dec. no treatments till after that. Hope you are doing better!

thanks......I'll let u know how it goes

I have been having the IVIG treatment for thirteen years and the flu like symptoms do not occur as often, only if they are speeding up the dose. I did get some pain before but the more treatment I receive the better the pain and numbness get but I still can't be without treatment for longer then 8 weeks. I do not fall over anymore and I don't need any support to walk. As the treatments goes on the symptoms get better and the easier it gets, I feel that I live a close to normal life now and I really hope you begin to feel better,

Thanks...I am hopeful that I will have more energy.....I turn 60 next month and know that I am too young to be this tired.

I was diagnosed Aug 2010 and have, fortunately, tolerated ivig just fine. My treatments are back to back twice a month. I have been wheelchair bound since late Dec 2010. I am getting better. The leg aches are constant but livable. I too toss and turn because of it. Neurotin and advil help. This is slow recovery so I have learned patience in my progress. You will get better with time. Stay strong!

I was having terrible muscle spasms in my legs that kept me up at night. I currently take Gabapentin for nerve pain, and was given Baclofen for the muscle spasms and tightness. The Baclofen has been a God-send to me. I would not be able to sleep through the night without it. Maybe you could ask your doctor if it could be right for you? I wish you luck!