CIDP and exercises

Alex, can certainly sympathize with your shock — I was just diagnosed, too, and I’ve bailed from my normal gym routine. Will be interested to know what others think about exercise…

I don’t know about everybody else but I do know when I over do it I usually feel it the next day . I to use to be a pretty good athelete but now I have a hard time keeping up with my 10 year old daughter. Everbody is different you have to try and see how far you can push yourself.But then make sure you get lots of rest . you can’t get enough rest.

I have had CIDP for 4 years…I am just now getting back into my exercise routine that I had before. It seemed like every time I tried in the past to exercise that I would relapse. So my advice is to start out slow and be careful not to overdue.

I just had a doctors appt. last week and I am just now getting reflexes back and I am feeling pretty good about that.

My treatments of IV-IG are spread out to every 9 weeks now and I take neurotin to help with the tingling.

Good Luck

Hello,
I’ll try to answer, but I can only advise and speak from my experiences. First off, with CIDP, the muscles are not damaged, the nerves are the ones that are damaged and they cannot send a message to the muscles to work. Until you reach a stage where progression of CIDP can be controlled, the ONLY thing exercise or working out in a gym can do, is MAINTAIN the muscles. If you still have good days and bad days and relapse, CIDP is not under control. IT IS VERY VERY VITAL THAT YOU LEARN WHAT YOUR FATIGUE LEVEL IS AND YOU MUST LISTEN TO IT. For myself, I found that working with a personal trainer (I tried it) was pushing me beyond my fatigue and I felt like I drained myself. During my first two years with CIDP, I needed naps! Almost all of us do.

I am not downgrading exercise at all, but if you are a high self motivator, during the first year or two, you can benefit by just working in exercise with your daily routine.

CIDP is a syndrome that moves slow, so don’t push for too much too soon.

All of this advice is coming from a “couch potato” who has yet been able to build up self-motivation. I would benefit from exercise if I only had self-motivation:D

Hi, Alex.

As you can see, I tend to float from one side of the Pond to the other–a lot of us do.

What Liz says is so important I’m going to repeat it: IT IS VERY VERY VITAL THAT YOU LEARN WHAT YOUR FATIGUE LEVEL IS AND YOU MUST LISTEN TO IT.

Just wish I had said it that way myself!

Deb

Sorry you have got to join us. I was a very athletic person too and that is one of the frustrations of CIDP is that I can safely run any more due to my foot drop. However, I try to concentrate onwhat I can do. There was a bit of a discussion last month on exercise here is the link
(Link deleted by administration)

I few of us discussed what we do. I am a great follower of use it or loose it BUT as others have said you need to listen to your body as fatigue is a darn nuisance I call it the terminal tiredness:rolleyes:
Good luck – nice group of people here to chat to

Hi, Alex…I too was quite physically fit when diagnosed four years ago. As soon as it seemed as if IVIG was working, I started a regular exercise program. However, I knew I could no longer do step aerobics and weight training, so I joined a water exercise class. It was very slow but it felt good in the water and at least I was exercising. After about six months, I started doing beginning yoga and continued the water exercise. Four years later, I am doing very well and now take intermediate yoga and group exercise classes five days a week. My reflexes have returned, I am way down on the amount of IVIG I take, and I am living a fairly normal life. I believe the exercise…particulary the yoga…has helped my progress. Who knows? I might just be lucky but my sanity and physical well-being were both improved by exercising early on. When I pushed too hard, I paid. The slow and steady pace may be frustrating but it worked for me. I hope you find success as well…Annie

Before I realized the reality of my CIDP, I had dx of fibromyalgia. Any PTs I had were always very careful to give me very mild exercize, so not to damage my muscles any more.

Then I got out the old dx of CIDP. I had to get PTs to teach me how to swallow without it going down wrong. They wanted me to take short walks, every day (for the FMS). So now my most essential exercize is ALWAYS remembering to swallow correctly. The alternitive is to be coughing for half a day.

If I sit a while, especially with this hot computer sitting on my lap, my legs are very week afterwards, feel like my thigh muscles will collapse. Guess I’d better quit.

Take care
Patricia

Alex:

Welcome to the Board. Your questions are very good ones. I don’t know if there are any absolute right or wrong answers. However, I can relate what has worked for me.

The first few months after my diagnosis of CIDP were basically lost as far as exercise goes. At best, I was able to go to PT to work on some very basic exercises to help regain my balance and to avoid getting contractures (joint stiffening) in my toes. I couldn’t run a step for all of those months. Gradually, as the IVIg stabilized my condition, I regain the ability to run and jump. Natually, I had lost a lot of fitness, but was grateful for the opportunity to do anything physical.

After a few more months, I started noticing that I would get overwhelming feelings of fatigue, especially after long days at work and in hot weather. I tried just taking it easy. Funny thing…the less I exercised, the more fatigued I felt. Luckily, I found an article (email or PM me if you would like a copy) describing a study in which patients with stable CIDP were given a fairly rigorous exercise program to follow. Although it was a small study, it showed a marked decrease in fatigue among the people that followed the exercise program.

Two things about the study seemed very important; first, the subjects had to be in the stable phase (symptoms under control, reflexes returning). I’m afraid that if you are not stable, the extra motor activity will overwhelm your nervous system; second, the exercise had to be consistent and had to involve some kind of aerobic activity.

This has worked for me physically and certainly emotionally. I went through a whole long list of reasons why I shouldn’t try to play soccer again (too old, bad balance, reflexes shot, etc.). When I found I could do it, I felt more free and less a prisoner of CIDP than ever before.

I hope this helps.

Brian Sullivan
Burlington, VT

Alex,

Hello. I was dx. with GBS last August, then CIDP in Nov. 2005. I have ran for over 20 years, average 20 miles a week and have done lots of races and a few marathons. I ran a 1/2 marathon at my usual time 2 weeks before the symptoms started. Anyway in July I ran a 5 mile race and came in almost last. Usually I did very well for my age group sometimes first place. In May 2005 I was 1st in my age group in a duathalon. My feet where numb the day of the race in July, the day after I could not climb the stairs. By August I was dx. with GBS and treated with IVIG. The symptoms would return after 35 days so I would be tx. again with IVIG. In Nov. 2005 I was dx with CIDP. I was started on Cellcept 1000 mg 2xs a day and recieve 60gms of IVIG every 28 days. This works very well for me. I do wts. at a fitness center 2xs a week and ride my road bike or go to a cycling class 3xs. a week. Once I became stable I started yoga and pilates classes and limited cycling classes that was around Dec. 2005. I also take Neurotin. So in time if you are stable you should be resuming some form of physical activity. I am not running at this time, the cycling is easier on my feet and lower extremities. I have never really experienced the fatigue part of CIDP too badly. Maybe its because of the exercise like the article stated. It would be nice to have more studies related to CIDP and exercise. We are such a small % of the pop. I suppose thats why there is not.

Good luck to you. It seems that we all have varying forms of the disease and various ways of being tx.

Pam K

Alex,

Sorry to hear that you’ve had to join us. Like you, I was extremely active until about 5 years ago – I went skiing almost every weekend for years and suddenly my legs weren’t working properly and I’d fall for no reason. Went to the gym almost every day, walked everywhere (i live in nyc).

Needless to say, I don’t do ski, walk around much anymore, etc. My big thing is: modify my life. Instead of giving up on exercise, I’ve found other things to do instead. I go to pilates classes (and the exercises can be modified) instead of using weights because I can’t always rely on my muscles responding the same way from one gym visit to the next. If I have the energy I’ll ride a stationary bike on the lowest setting possible (I don’t always have the strength though to do this.)

It’s important to note, however, that we all have different responses to this disease. Progression, relapse, improvement is different for every cidper.

My advice: listen to your body! It will tell you what you’re capable of doing that day.

For me the most effective way back to excercising was seeing a Physicial Medicine and Rehab doc (Psiatrist) who set up a PT plan. We have worked on strengthening and balance exercises. In my case one side is weaker than the other. My reflexes have begun to return except my ankles. Both the doc and the PT have cautioned me about overdoing my exercises cause that will lead to a relapse. For the record, I’m going on a year since dx, have IVIg every 4 weeks, and take 60 mg Prednisone every other day.

Alex,

Exercising with CIDP can be a real drag, but I think it is very important. I’m starting my fourth year with CIDP. For me, deterioration and progress have been incredibly slow. I just started to see my first real improvement in the last few months. Regular exercise is what has kept my body from completely wasting away. More importantly, regular exercise has served as a set of metrics that helped me measure how I was doing. I have a very specific exercise routine that I have followed since the disease came into my life. By tracking how I was doing on the exercise bike or how many leg lifts I could do (you get the idea) I have been able to report back to my neuro at each visit what my progress (or lack there-of) was. I found it more accurate than using descriptions like “I feel like I’m a little more numb this time”.

Keep in mind what others have said. Listen to your body and don’t overdo it. But do whatever you can to keep some semblance of muscle tone and aerobic capacity. Eventually we all hope our symptoms recede. When they do we want to have as much physical capability as possible.

best,

tim

Hi. Just my own experience here. By the time I was diagnosed with CIDP the doctors told me I was only a couple of weeks away from being in a wheelchair. I could barely walk, was going up stairs on my hands and knees, and I could barely do anything normal with fingers, hands, arms and legs. I was started on prednisone and have been on it for 13 years now. It took almost 2 years to get back to what I would call mostly “normal” function. I am now able to work out – though I won’t claim to have been a work-out master before . I can do normal weight training and aerobic-type exercise (elliptical, bike, treadmill), but repetitive motion is a problem for me. So I can do most things I want to do, include having learned in the last few years how to ski and snowboard, but I cannot keep up with my boyfriend in how much or how long I can do such things. I just don’t have the strength or stamina of a “normal” person.

My first post as a CIDP patient! I was diagnosed with CIDP in July (last month). I was a tennis player and exercised in the gym for a long time. Started getting symptoms in March 2006, stopped exercising in June since legs got too weak and wobbly. Neurologist had me get a Lombar puncture, which gave him high probability of CIDP. Started with IVIG, which “failed”, got chect tightening, nauseous, about to throw up, and low blood pressure. BUT – I was mostly done with one bag. So, next week, it helped a lot! Dr. now has me on prednisone(60 to start, now 50mg). As for the exercise, I started back a cou[le weeks ago. It felt good, but I started slowly. Leg exercise went from 120lb before, now, 75 lb. Bicepts – 50 lb before, 35 now, Tricepts – 50lb before, 45 now.
Prednisone has continued keeping the strength up. I am very concerned about the side effects though.

BobV, Gaithersburg, MD

I have found that my exercise routine has changed, but I still exercise regularly. I used to be an avid walker. Now, I can’t because of fatigue and balance issues. I found that using a stationary bike help keeps me in shape, helps my leg especially calf muscles avoid atrophy, and keeps my depression in check. Always exercise in moderation.

I have found that my exercise routine has changed, but I still exercise regularly. I used to be an avid walker. Now, I can’t because of fatigue and balance issues. I found that using a stationary bike help keeps me in shape, helps my leg especially calf muscles avoid atrophy, and keeps my depression in check. Always exercise in moderation.

I try to have the phiosophy that I have CIDP it does not have me.

Good luck and God Bless!

Alex,

Wow ! You have gotten a lot of great information. All is correct and I think you see a definite trend. If you over do it you will need extra recovery time.

One of the things that happens with CIDP is the destruction of some nerves that feed muscles. The entire muscle will not fail, just some muscle fibers. But operating on less muscle fibers will tire out the remaining muscle tissue quicker. So the trick, as others have mentioned, is to know your limit, and try not to overtax what you have. Recovery time slows.

The answer will vary from person to person, and sometimes from day to day. Depending, you may be able to do more tomorrow, or maybe less. The key, I think, is to remain flexible, use what you can, and take care of yourself. Remaining sedentary is not the answer.

You will be best able to answer your question. Listen to your body. Staying fit is one of the best pieces of advice I could give. Don’t over do it would be the second.

Good luck
Dick S

Alex,

As an amatuer athlete, I completely sympathize with you! I remember how depressed I became when I had to stop running and cycling.
Good news is, this is not a permanent condition! You can get back to what you were doing.
What worked for me was yoga. I had never tried it before, but suddenly it made sense. I recommend Hatha yoga because it is very gentle, not as rigid as other forms. I noticed immediate improvement to the numbness and tingling.
I never had an ivig, I did Homeopathic instead. Started yoga and Homeopathic in early april, by May I was riding my bike again, June commuting to work 2 days a week, and began running again in July. And now I’m bike commuting 3 sometimes 4 days per week.

Chances are you are going to be getting tired faster than you normally would. You’re not using energy very efficiently, that’s why. So you want to conserve. Keep the work easy and build endurance over time. Your focus should be on stopping the attack on your nervous system, and then healing your nerves. A lot of that healing can be done nutritionally, rest goes a long way, but that’s also where the yoga comes in. Heal the nerves, keep your body as fit as possible, and it will heal itself.

Make small goals for yourself, things that are achievable but will also tell you that you are improving. That will keep your spirit going. Celebrate every achievment!
I recommend also keeping a thorough log of your symptoms. Include the good things too.

Best wishes to you!

Kelly

I’m so new to this-my best friend was diagnosed and I want to help-I would love a copy of that report about exercise.
Could you lovely people please tell me how you feel on a day to day basis?
Most people go into remission after successful infusion, don’t they?
Do any of you live alone?
How can someone who loves you help?

Lynda,

Your a great friend for coming here and asking questions and inquiring about how to help. My main advice is for them to listen to their body, don’t try to do to much. As a friend I would say anything to help would be great, running errands, taking care of housework, etc until they know what they can do. It can be quite a bit of trial and error at first, between the Neurontin, other meds and the general exhaustion. Just make sure they know you are there to help and don’t be afraid to ask, I had a hard time asking for help at first. Take care.

Jerimy