I just fnished my first week of IVIg treatments (2), and am feeling fine. I was very glad my side effects were only a headache in the middle of the night. I do have a couple of questions for those of you that have been on IVIg for a while:
(1) Once you start treatments, does exercise help, and if so, what kind of excercise would help rebuild muscle strength in your legs?
I've been going to the gym and walking at least 5 days a week since Oct, which has helped, but wanted some suggestions on what now.
(2) Does treatment IVIg just stop the progression, or if you have a mild case (which thankfully, I think I do--caught within a year), can you improve, and can the nerve coverings regenerate?
Thanks for your help and advice. I go back for 2nd round in 4 weeks.
Exercise always helps unless you over do physical activity. Overdoing it is always a risk for CIDP patients and can throw you into a relapse. I walk,do squats(by going from a sitting position to standing in a chair,lunges, and writing the alphabet in the air with my foot(ankle strengthening).I also use a stretch band to do arm exercise and stretching. IVIG can put you in remission. It does for some but is not a cure. It is up to your body to regenerate nerves and flares usually leave a little scarring on the myelin sheath so nerve coverings are never exactly as they were before. I take a B12 supplement. I heard it can help. I have had it for 8 yrs.I was really functional until this year so always listen to your body. It is the first signal. Good Luck to you. Mary
I believe exercise helps. If nothing else, it is easy to become inactive when you have CIDP, and then you lose muscle tone. This just compounds the effect of the CIDP. So, it is best to use your muscles as much as possible just to maintain your muscle strength, so you can use them as efficiently as possible.
In addition, a neurologist told me that the process of using muscles, or even attempting to use muscles, helped to cause nerves to regrow. He said that the brain, attempting to send out electrical signals to the muscles, stimulates the repair to the nerves. So, he had me lie in bed and attempt to move my legs, even when they were totally paralyzed. (I would be interested to hear more on this from another neurologist, if any happen to read this. It is not something I have heard or read anywhere else.)
I am currently going to a gym. I write down exactly what I do on every exercise (how many repetitions, at what weight). That way, I know exactly how much progress I am making. I am still pitifully weak, but making progress, and it is motivating to know that.
Exercises that seem to help me include 1)toe stands while holding on to a chair or countertop 2)seated calf extensions-on machine at gym-with knees straight put soles of both feet on the bar then push or extend your toes to a full extension 3)walking while agrressively pushing off as if "racewalking" 4) a machine that allows 'leg curls' with bar behind the ankles then pulling heels back and up to the seat (your machine may be called something that strengthens hamstrings) When I go more than a day w/o exercising I know it! I totally agree with Bill about not overdoing it. And, the idea of keeping a journal or log is a good one. Do whatever you can do regarding exercise but do something. Try to gradually increase the weight you use but don't let a failure to progress bother you. I have been on the same weight with my calf extensions for months. Just cannot get past the hurdle. But I have made a little progress on some other leg muscle exercises. Lastly, talk to someone to lift your spirits. It is so easy to get frustrated and give up. DON'T GIVE UP!
I've been on IVIG about 20 months and I think it has just retarded the disease but has not reverted toward normal at all. I was 62 when diagnosed. You look younger so you might be in for a better prognosis! Blessings to you today!
thanks ! This info about exercise has really helped! barb
JMichaelS said:
Barb,
Exercises that seem to help me include 1)toe stands while holding on to a chair or countertop 2)seated calf extensions-on machine at gym-with knees straight put soles of both feet on the bar then push or extend your toes to a full extension 3)walking while agrressively pushing off as if "racewalking" 4) a machine that allows 'leg curls' with bar behind the ankles then pulling heels back and up to the seat (your machine may be called something that strengthens hamstrings) When I go more than a day w/o exercising I know it! I totally agree with Bill about not overdoing it. And, the idea of keeping a journal or log is a good one. Do whatever you can do regarding exercise but do something. Try to gradually increase the weight you use but don't let a failure to progress bother you. I have been on the same weight with my calf extensions for months. Just cannot get past the hurdle. But I have made a little progress on some other leg muscle exercises. Lastly, talk to someone to lift your spirits. It is so easy to get frustrated and give up. DON'T GIVE UP!
I've been on IVIG about 20 months and I think it has just retarded the disease but has not reverted toward normal at all. I was 62 when diagnosed. You look younger so you might be in for a better prognosis! Blessings to you today!
When I got my first IVIG treatment I was in the hospital and my neuro requested that physical therapy come and visit me to help me try to get back what I lost as far as strenght in my legs etc. I did the exercises as instructed so many reps so many times a day and I did eventually make great improvement! Maybe you can get a refereal to a pt and get a list of exercises you can work from. The hospital actually gave me a few sheets with diagrams of the exercises that I did daily.
I want to say that IVIG can help to stop the progression of CIDP as I know it did in my case. You can improve but I don't know about the nerve regeneration. Maybe someone else will know more about that.
I wish I was as lucky as you to only get IVIG 2x a week! I had to get them 5 times a week. I say had because I had problems with the IVIG and they had to change the course of my treatment.
It sounds like you are doing great and I wish you luck in your treatments!!
When I got my first IVIG treatment I was in the hospital and my neuro requested that physical therapy come and visit me to help me try to get back what I lost as far as strenght in my legs etc. I did the exercises as instructed so many reps so many times a day and I did eventually make great improvement! Maybe you can get a refereal to a pt and get a list of exercises you can work from. The hospital actually gave me a few sheets with diagrams of the exercises that I did daily.
I want to say that IVIG can help to stop the progression of CIDP as I know it did in my case. You can improve but I don't know about the nerve regeneration. Maybe someone else will know more about that.
I wish I was as lucky as you to only get IVIG 2x a week! I had to get them 5 times a week. I say had because I had problems with the IVIG and they had to change the course of my treatment.
It sounds like you are doing great and I wish you luck in your treatments!!
In my case, IVIg stopped the progression but did not reverse the weakness and balance problems until recently when I started working with a personal trainer twice a week. I am amazed at how much I have improved by using the machines at the gym. The physical therapists I tried earlier did not do any research on CIDP, used a "cookie cutter approach" and urged me to "work through the pain," which left me so sore and tired that I gave up. The trainer is careful to make sure I rest between each exercise and not overdo. I also walk several times a week and use a recumbent bike for 10 minutes at home several times a week.
I don't know if this improvement is because of a temporary remission or would have happened earlier if I had found a good trainer, but I am thrilled to see the improvement in my strength, flexibility and balance.
Thanks so much, Lou. Many of these are similar to what I've been doing with my trainer, and they are definitely helping with strength, stamina and balance.
Lou said:
Barb,
Here is a PDF file that I found on line that shows certain types of exercises for CIDP. I attached it to my reply.
I have found the Wii Fit program to be great! I can only do the simple exercises, but they are definately helping me and can be done in-doors (whilst holding onto something stable for some of them). What is interesting is that the basic left, right balance shifts are OK, but the fine adjustments are terrible, hence why the Penguin is full of fish, the Footballer has a headache, but the Skier has been sacked for going on the wrong course!
Hi Bonnie! I had several IVIG treatments over a span of 1 year. At that time they had to stop the treatments because I was having several problems with IVIG and then they put me on immunosuppressents.
I am glad to report that listening to what me doctor told me to do, listening to my body, and most of all God's healing I was just told I am in remission! I will start weining off my meds within the next few months.
For me the IVIG did the trick and stopped the progression of the disease and they just did an emg test again and I have drastic improvement in nerve conductivity and function.
It has been almost 2 years to the day that I was diagnosed!