Yo Duck – Might I suggest an important part of your treatment include physical and/or occupational therapy. I did not respond well to the traditional PT/OT and my neuro did not even include it until I asked for it. What I got was so minimal as to be useless. I asked the PT to help me establish a baseline from which I/we could work together and adjust as needed – that made sense to me.
I found that just as most doctors don’t have much experience with CIDP the ‘licensed’ PT/OT folks had even less and they weren’t intertested in any variation from ‘the book’… so, like most of us I scrounged around and found something else – that worked – for me.
I do a form of Tai Chi for pople in wheelchairs – it feels good, doesn’t over do it and makes sense to me – the guy with the CIDP.
Something to consider. Best to you.
I would like to agree very much with being proactive yourself with keeping muscle strength by doing lots of leg lifts and stretches and exercises. Get a good stabilization for the foot so that you can do lots of non-weightbearing exercises without pain there. It is SO much easier to keep muscles than it is to try to build them back up.
WithHope for a cure of these diseases
I thought I would add my two cents worth…
I was walking on the treadmill – but the pain afterwards was intense. Gareth Parry recommended water jogging, same kind of result – less pain. I started doing that and it is great – a couple of times of week for about 30 – 40 minutes. I also do Pilates 3 times a week for about 30 minutes.
At the end of the day, I listen to my body. If I don’t feel well, I don’t over exert myself. If required, I go back to bed….:p (Doesn’t happen very much anymore)
But I guess that is what is the most important thing – taking things slow and recognising that you might not be as fast and furious as you used to be.
Hi Erin, I am an Exercise Trainer who a few years ago came down with GBS/Miller Fisher. When my eyes finally opened and I went back to the Y to exercise I had to practice what I always preach, and that was start easy lift low weights – do 8 to 12 reps at a slow count – lift 2-pause 1-lower 4 – Do this every other day 3 times a week to strengthen those muscles. after a week or so add a little more weight gradually. It took me a while but slowly I got those muscles strong. Also cardio walk outside, or treadmill or elliptical, bike-whatever you do start slow and each time add 30 seconds to your program. Hopefully this will help you. Keep the faith
That’s true Janet. Seems like we are released from the hospital, told we are normal and to go about our daily life. We don’t hear about what happens down the road. I have been trying to find some info on the internet regarding the exercise thing. I think I will tell the trainer about my GBS and that maybe I need to do less repetitions and more sets with a rest between the repetitions. That’s the only thing I can figure out. I started walking a couple of weeks ago in the evenings for 1/2 hour for about a mile or more. I did feel pain in my shins for a few days after that. I was walking briskly and up and down small inclines.
I had to drop out for awhile because dealing with three (maybe four) chronic dis-orders sometimes gains control of me; Chronic syndrome (severe CIDP and maybe CMT), chronic fatigue both triggered by chronic STRESS. Now that my stress has dropped down, motivation and the physical feeling of HOPE are back. EXERCISING is VITAL to me for more of a recovery and to re-build muscle strength. I am trying to set up an exercise routine, but I need to add about two more things. For me (wheelchair user), I can only stay on my feet and stand when holding onto something sturdy. And I cannot lay on the floor, I cannot get myself up.
1. I do squats, but have to be careful I don’t go down too far. How many should I do.
2. I do side kicks and back kicks, How many should I do.
3. I do marching steps, how long should I do? 1 minute or 2?
4. I do side stepping walks back and forth (I have exercise bar). How many times is good?
What else can I add?
Another day at physical therapy and I surprised myself by doing something I haven’t done before. I got on the mat and I got myself into a crawl position and then I raised myself up onto my knees, but boy, could I feel the strain in the muscles of my unworked upper legs, so I didn’t stay like that long. I’ve got to find some exercises I can do at home that will work those muscles in a gently way, maybe stretching? Problem is my bed doesn’t work too well and I can’t get myself up yet if I get on the floor and for any standing exercises at home, I have to hold onto walker.
Hello Cheryl, before I talk about me, I just thought I’d mention that when I went to the symposium in Phoenix, the panel of doctors all said that pool therapy was the best for us.
I have gone to PT for the third time now and the therapist was surprised and pleased with what I could do when I did some walking with the walker. I think she thought that I’d only be able to do mat exercises because I wasn’t able to do anymore then transfer myself. The swelling is down again in my feet and if I can keep them like this, I’m better able to move forward and I think I’m getting my motivation back. This clinic has a pool, but it’s a very very small one, like a kiddie pool, so I don’t think I’ll try it. I need the exercising and the workout machines alot more.
More next week. GAD, I’ll be at physical therapy on my birthday.
I know that it is definately the muscles that are TRYING to work now, it is not pain. A “couch potato” or a person who was never physically fit, knows the difference.
I know that I will always be semi dependent on a wheelchair, but I have three goals that I want to work towards.
1. find out if I am strong enought to get up off the floor. Now that I am back to PT, I can try that in a safe place.
2. I want to be able to walk about ten feet with a cane.
3. I want to find out if I can get out of the back seat of a car. PT therapist can show me how to do it.
If I can do these three things, more INDEPENDENCE will open up to me.
I have CIDP and possibly a second syndrome CMT and I think exercising is something we need, but, NEVER over-do it and ALWAYS ALWAYS ALWAYS listen to your fatigue level. Like Brandy said, talk to your doctor about going to physical therapy and you could even try occupational therapy if you have a problem with hands. If you enjoy swmming, pool therapy is highly recommended. If you are a high motivator, do exercises yourself after you’ve completed physical therapy.
NEVER push yourself and over-do, ALWAYS listen to your fatigue level. I had to repeat that because it’s important.
The last two months have been very difficult for me. I got the swelling in my feet down, but I’ve been experiencing very intense numbness, which makes it unsafe for me to practice walking. Also, the numbness makes me toss and turn at night and I’m so tired from lack of enough sleep.
I’m still trying though. One of my favorite TV shows started tonight “Dancing With the Stars” and I used the music to move my legs around for exercise.
First off, I was just waiting on an appointment, I did go to see my new neurologist and I had a friend on friend, rather then doctor/patient, talk with my podiatrist. The swelling in my feet is strictly due to the fact that I am still wheelchair dependent and legs/feet are always in a down position. And of course, ELEVATING them is what I must do. So, I was told to sit twice a day, with my feet up, for a half hour. Knowing what to do and how long is what I needed to know in order to do it. Once I get the swelling down and my STRESS under control, I can get back to physical therapy and exercising.
I wonder what I can do to exercise the feet while I am sitting with them elevated?
Any Suggestions On What I Can Do Until I Find Out What Is Wrong And Know How To Deal With It???
My Feet Have Been Extremely Swollen For Two Weeks Now And The Numbness In Them Extremely Intense. I’m Going To Have One Huge Problem If My Feet Swell Anymore Then What They Are, Because I Am Now Pushing At My Boots To Get Them On. Without The Boots On, I Can Only Tolerate Standing For Seconds.
With The Combination Of The Extreme Swelling And The Numbness, I Don’t Know Whether I Need To Stay Off My Feet As Much As Possible, Or If I Should Use Them As Much As Possible.
I Know That I Have Gotten Out Of Condition And Need To Work On Rebuilding Muscle Strength.
You say you are too tired after exercising to go to the grocery store? I’ve been advised to use the store as my exercise. When you go there you are reaching, transferring, picking up different weights, if you can walk, then pushing the cart builds up strength and endurance as well. For me it is my big outing! I’m 9 months out and felt so liberated the day when I pushed the cart down the alcohol isle! I still have to borrow the store scooter to do all the shopping but just getting out of my home is therapy. Activities of daily living provide alot of exercise (sometimes too much!) Days when I am “busy” I don’t do exercises or I just do short periods in between and don’t do them all. Hope this method helps! 🙂
Cheryl, I know what you mean, I’ll join you in being a whimp because I was BS (before syndrome), but can I get by with using my wheelchair as an excuse! I did do the whole perimeter of the mall without even stopping, that’s arm strength isn’t it? And my legs did peddling.
Tomorrow, I’m going to use my arms and try again to get that big heavy bleach bottle out of the box!
I’ve got to get myself in shape, I’ve got a great vacation coming up and I want to do things.
My exercises are going to be the same on a week to week, month to month basis, homework I bring home from PT, so I won’t be posting daily. Right now it’s just simple stretching. Stretch one leg out straight, lean forward until you feel it, hold for a count of thirty//do other leg to a count of two.
Second exercise is to tug at my foot and pull it forward (I use a knitted wool scarf to pull the foot, gentle on my hands, easy to hold), hold for thirty seconds// do other foot to just a count of two.
And do it every day for a week.
I think the best thing that helps me is just doing some stretching. I am still in a wheelchair at almost two years after onset. My insurance decided that after a year I should be up running a marathon, that’s just not the case. I do everything by myself and do not want any help from insurance. Take care.
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?
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
I am fairly limited in the amount of exercise that I can do, due to being left with a fair amount of risiduals. I walk with AFOs for foot drop & take a cane with when I leave the house. But at least I have been stable for over two years now with my CIDP, & so I know what I have to work with. I do have a cleaning woman come every two weeks for the heavier cleaning, but I do the every day stuff like making my bed, dishes, cooking, laundry, etc.
What I have done for the past year is go to water aerobics twice a week, something that I really enjoy & I know is good for my body. In general, I know that I only have so much energy each day & have to really pick my battles. If I decide to go grocery shopping today, I might not make it to the 4th of July parade tonight. Trying to sleep in & even getting an hour of rest or sleep during the day really helps. I know now that more exercise will not make me stronger, it will only wear me out…
I might be an expert on this, so I’ll try to answer. If you still have good days and bad days (progressing or having relapse/remittence), PT or exercising will MAINTAIN the muscles, but will not bring about improvements until CIDP is brought under control. I am no longer progressing and I am at a point where I can benefit from exercise. I went through about five years of PT off and on, I have found that I no longer benefit from the PT. If I am going to improve anymore then what I am, it HAS to come from self motivation, so I have a 36″ mini trampoline to help me with my balance. Since my home has no stairs, I make steps out of my aerobic steppers, the motivation has to come from me now. I tried going to a gym and worked with a personal trainer, but “I” was pushing myself beyond my abilities and it exhausted me. I should have limited the gym to just three months, I did good with that. I am trying to rebuild muscle strength and come up from a wheelchair. If you can walk into the gym and use the machines yourself, you’ll probably do better then me. Don’t overdue it though and be careful of the length of time a contract is for.