How much exercise is good?

    • Anonymous
      October 8, 2008 at 2:17 pm

      I realize the adage “no pain, no gain”, and as I get back function I am trying to figure out where to push a bit and where to stop.

      I have made great progress with Ivig and Integrative Manual Therapy, homeopathy, diet, chiropractic’s, and never stopping exercise, just taking breaks.

      I still need breaks for pain, insomnia( a big issue lately), and recovery from weekly ivig doses.

      I keep thinking the old thing, of “keep pushing, you’ll get there”. I have read post from others who have gotten there.

      I think I’m saying the same thing over and over, but how do I know how much is too much, regarding both physical and cognitive exercise?

      I went for a walk today and added a slight jog on the way home. The more percussive movement was very challenging. After showering my feet and legs are tender to bear weight on.

      Also, I want to get better, but there is definitely an aspect of fear of getting worse , or not getting better.

      I’d be glad to hear from others who have been on this path ahead of me.

      Thanks, Erin

    • Anonymous
      October 8, 2008 at 6:04 pm

      I just saw something on TV today and they said the average person needs to have at least 2 1/2 hours a week in exercise. Whether it be walking or jogging or any physical types of exercise they claim 2 1/2 hours per week is actually a good number to stay fit! Hope this helps

    • Anonymous
      October 8, 2008 at 7:29 pm

      I’m no expert on exercise or recovery, but I can relate what others have said. Gene, one of the wise people on this site who is not longer with us, used to say that you should recover from any activity within 24 hours of doing it and that if you do not, you have done too much. I know that I have pushed the limits a lot and ended up with everything cumulatively getting worse with escalation of pain and muscle protesting. His suggestion seems to work; the only hard part is that you only know a day after the fact….

      At this meeting that I went to last weekend, Dr Jacobs said that you really need to be slow and steady in increasing exercise and that warm-up is especially important. I understand this–I have stupid, slow, sluggish muscles since this illness and stretching and warming them up will do more for us to prevent injury and overdoing than it would for the typical “healthy” person.
      He also suggested short periods of exercise (30-45 minutes) three times a week. this also makes sense from what my body can do, because the longer I try to do something, the wimpier I get at it–it noticably deteriorates and so short times are better. He talked about swim walking, walking, and bicycling with the arms also being used.

      At the meeting in Dayton, one of the ladies there was talking about physical therapy on horses and how good that is for balance. Another said that she used to crawl a lot when she could not walk and this built back up strength and balance until she could walk again. It takes less strength because the “fulcrums” are shorter, but it still used lots of muscles that are shared with walking. We humans do this for a reason–aren’t we magnificently designed?


    • Anonymous
      October 8, 2008 at 7:39 pm

      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

      Phyllis canon

    • Anonymous
      October 8, 2008 at 9:55 pm

      Erin, Everyone is different and has different limits so you need to find where your weakness is. Those are the areas that you can not rush they will need time for the nerves to heal before the message from the brain gets efficient. Meanwhile what I did was work on range of motion of every joint from head to toe. Just this Summer I had a big increase of my reach behind my back that I could actually reach up to the middle of my back but not above that to fasten my bra. I still have not able to touch my fingers from one hand to the other fingers to the other hand. Reaching from below and from above with either hand. I still am using a towel and stretch band to increase that range of motion. Even now I get cramps when I hold or reach a certain way the hands cramp up. I keep working on getting them stronger. My breathing has really come a long way from having a colapsed lung to the present time. Swimming did help with that. Also the little bit of resistance in the beginning from the water really helped and then I moved on to the aqua weights. Also the water bouncing me around helped with my balance and gave me a freedom to move around that I still can not describe to people. But coming out of the pool was like someone was piling weights on my legs as gravity took over. It was very easy to over exercise in the pool. But it did help with stamina. The stability ball did also help with the core muscle when I did not go swimming. Strenght come much later in little steps. I went from just being able to lift a sippy cup to now not thinking that a gallon of milk is too heavy. I had a injury to my shoulder and I worked on that very hard to get it to unlock and that took 8 months. Now my upper body strenght is almost back to normal but I am able to lift things to the top shelf, but can not lower the object down safely. It comes crashing down. I still need to work on that weakness and that other set of muscles. My lower body is still weak and that was the first area to notice the weakness from my onset. Walking long distances or using a treadmill is still too much for me. I can walk in the pool and hold on the side and kick my feet and side step from end to end of the pool to get all the muscle groups moving. Steps take alot out of me still. Hills are not my favorite and once my legs get stronger I know my balance will be better and it is alright now! Just not when the wind blows I feel unstable. I have no strenght to resist wind but do have it in the pool against the water. Those that mentioned that warm up and cool down exercises are so right. You want to avoid injury at all cost! Remember that exercise time does not have to be done all at once. If you were to break up your daily routine and work out 5 minutes each hour that you are awake doing one area or another, it all counts! Also make sure you count into that also the stuff you are doing that day. I do less exercise if I have to go to the store to grocery shop I take that off my walking and leg lifts. Remember to work the upper body, lower body and the core. If you are having back problems work on the abs they help the back strenght. Remember to rest whe you are tired and don’t over do exercise. Don’t hurry thru a routine..actually a slow routine is better for us and having to hold a pose rather than to jump, kick and jab and run thru your routine. Try Yoga? It is a good place to start and will show you where your strenghts and weakness are. I used to have a tape and once I got down on the floor I did only the floor exercises. I started out by doing only the standing or sitting exercises. I am still not able to ride a bike that is too repetitive for my body. I need more variety. Remember do an exercise that you enjoy! Keep up the great work! ๐Ÿ˜Ž

    • Anonymous
      October 8, 2008 at 10:39 pm

      Hi Erin, I joined the YMCA back in February 08, when my PT ran out. I go everyday for one class or another. Arthritic swim 3 days. Silver Sneakers classes (which I’m not old enough to be a member yet, haha, but they welcomed me with open arms) offer Range of Motion 2 days a week (in a chair or standing up), Yoga Stretch (in a chair or standing up not on the floor) 2 days a week and a Cardio class 1 day a week. The instructors have stressed that the “no pain no gain” is not true and if you start to feel pain, drop down to a slower pace. But if you feel the “burn” that’s ok, that some kind of acid is working in your muscles. And again Gene’s advice is dead-on. I’ve tried to push it and have paid the price…hard-head that I am on this, more than once ๐Ÿ˜‰ . Best wishes to you!

    • Anonymous
      October 9, 2008 at 4:44 am

      I exercice daily and physio on satrudays. I think this is more than 50% of my treatment (the other is gabapentin, wich I don know how I would survive from pain without it).
      Here are the exercices I do; [url][/url]

    • Anonymous
      October 9, 2008 at 6:59 am

      Hi, I went to your exercise website and we do some of those exercises at the YMCA classes ๐Ÿ™‚

    • October 9, 2008 at 8:39 am

      Erin, What’s been said is wise and I’m in agreement. Exercise is very individualized and it is hard to know your personal limits. Especially now, I seem to hit “the wall” really early now, but still feel better having pushed through it and finished my routine. I can’t run, but the elliptical machine seems to give me a good aerobic workout, moves those feet to pump out my fluid build up and is relatively safe for me. 30 minutes is sufficient for me. Swimming has also been very good for both and limbers up and stretches me very well.

      I lift weights on a machine now too since free weights are a little too dangerous. (I get very wobbly … )

      I can ride a bicycle and my wife and I ride almost every evening.

      Warm up. Do what you enjoy and what you can do [B]safely[/B]. I’ve been warned that recovering from an injury with CIDP is lengthy and very difficult.


    • Anonymous
      October 9, 2008 at 9:59 am

      Gary, you are right! It has to be individualized. I joined a gym and was going for 30 minutes three times a week and I got weaker! I was finding it hard to climb stairs, etc. So I had to quit and now I try to build small bits of exercise into my day i.e. walk about a block or two and return, gardening, walking around the yard, make an extra trip up and down the stairs. Your body tells you what you can tolerate. Listen to it. Someone said if you are not recovered in 24 hours (which I was not!) then it is too much. I think the key is to keep moving in what ever manner your body will tolerate.

    • Anonymous
      October 11, 2008 at 2:27 am

      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.


    • Anonymous
      October 11, 2008 at 7:04 pm

      thanks all for sharing. It helps me to get some understanding abt how fast and slow I would be best to proceed.

      yesterday I had a wonderful swim, then walk in a community pool. I was having some difficulty walking before and after. Too bad I can’t always walk in water.

      today I woke unable to move much of anything. I crawled to the bathroom, was able to walk back by manually helping my left leg which had gone a bit lame.
      I had a series of myoclonic tremors after moving, and took meds and have slept all day. This evening I am still walking unsteady, and am fatigued.

      Hopefully, I will feel better tomorrow.

      Wishing you all well.

    • Anonymous
      October 11, 2008 at 7:28 pm

      Erin it sounds like you did TOO MUCH! You might only be able to do half that or even a quarter of that. Remember to only walk half the distance you want because you have to turn around and walk back! REST and go back and maybe start out a little bit slower this time! If you are using the pool then you want to do even less because the water is helping you along. It is very easy to over do it! Sorry you had this experience. We all have learned by our mistakes! Take care and let us know how you are doing after the next visit to the pool. I think everyone forget you are not exercisiing to loose weigh here and not doing alot of cardio yet. You are trying to get your body to move and work on balance, breathing, range of motion and slowly on strenght and cardio. The movement in the water and the resistance of the water will start to build up your strenght.

    • Anonymous
      October 12, 2008 at 5:09 am

      Hi Erin, as much as you probably dont want to hear it, i think you may have over done it. Nevermind, i think we have all been there as well, and it is so hard to tell sometimes, esecially if we have a wee bit of stubborn woman syndrome as well!!!!!!:p In a way it upsets me to think back a year ago to being in a simialr situation – wanting to get better quickly, not knowing how hard to push myself, and desperately fearing a setback or relapse etc. I had to set wee goals and no matter how much i wanted to go over and above and prove i could meet the goal and MORE i had to be strong with msyelf and only MEET the goal. My exercise started from the very basics ie getting a shirt on, to then getting a shirt AND pants on, to then go from walking with sticks around the house to making it out of the house. Then i was off in leaps and bounds (not really but i tried to kid myself) and went from walking to the neighbours letterbox, to then two , then three etc letterboxes. Once i could walk the block, i tired to jog, unfortunately no matter how strong willed you are if the messages arent getting thru you wont win!!!!!!!
      I too had the same advice from my doc, if you dont recover in 24 hours (maybe should be 12 hours when first adding somehting new) or if you feel pain, STOP. Also increasing things slower is definately the key.
      All the best and good luck
      (Dont forget – find something you enjoy doing ie biking, swimming etc – you suffer enough with this so dont make exercise something of a chore)
      As much as i love running it sure was difficult to get back into it, especially on wobbly legs but as i am out there doing it i often think of people on the forum and they give me inspiration to dig in a couple of extra kms!
      Kiwi chick

    • Anonymous
      October 12, 2008 at 8:48 am

      I was in rehab at a gym that did not know much about this illness and pushed me to hard. My legs started to feel better after I finished 6 months with rehab in the gym. My rehabilitation Dr. has me doing short distance walking around the house and yard and three times a week on stationary bike with no tension. I started slowly and can gradually add tension and get up to thirty minutes three times weekly. Listen to your body Erin and good luck to you.

    • Anonymous
      October 12, 2008 at 11:19 am


      My one and a half cents worth…

      You asked how you could better deal with what awaits you. And how much is too much.

      I think the first place of understanding is that we are all a little different in how we deal with and suffer from our afflictions. At the beginning I was mainly sensory. So little muscle loss or problem. So for me, I had balance and coordination problems, but not so much strength.

      Others have had a more pronounced muscular loss, but little sensory involvement.

      For each of us, a different regimen would be needed. But I think one thing is always true, you need to do as much as you can, but not more than you should. And it will vary day to day.

      It takes a while for muscles to recover, even more so with CIDP. So if you do too much, it will take extra longer to recover. If you can train yourself to do, but not over do you will be the best. It is definitely a moving target.

      Good luck with everything !!

    • Anonymous
      October 12, 2008 at 12:58 pm

      well, it appears that i tried too hard this week. Today is my second day in bed. It’s a shame cuz the weather is beautiful and I’m a train wreck!

      I have more strength than yesterday, yet still too fatigued to do much more than quiet reading. Even answering questions like “would you like to sit outside?” makes me cry. In fact I have no desire to sit outside, and be challenged by the moving air and temp change, bright light and sound.

      I went for a short walk with the dog this morning and was chilled for hrs. I don’t feel cold presently, yet the skin on the outside of my calves is still cool to the touch under clothing and bed covers.

      Dick, I have both sensory and motor involvement, though in the past year I have made huge improvements. I can stand with my eyes closed and don’t tip over, and I have regained 30 lbs of muscle loss.

      With all that, my strength and balance still fluctuate. Sometimes it’s one element, like balance, other times it’s the other or both. Right now it feels like will power, nerve, or personality is weak. I am hoping that it all clears soon and I see the next path of healing ahead.

      Thanks everyone for you re assurance and feelback.