Exercise and CIDP

    • June 14, 2011 at 10:00 am

      I started to try and work some exercising back into my daily routine. I was diagnosed with CIDP back in January 2011. I have had three rounds of IVIG 4 weeks apart. I am feeling pretty good. I never did have a lot of debilitating symptoms since diagnosis. Mostly annoying symptoms like tingling in my feet, some slight muscle twitching at night, burning sensation on my hands and some fatigue. Sometimes after the IVIG I feel almost completly normal and can forget about my CIDP (except at night sometimes some symptoms creep back). But for the most part I am feeling good. So I tried to do water aerobics the other day. I did not do anything very strenuous. I did about 45 minutes in the water at a slower pace. But I noticed that i felt very tired the rest of the day and then my neck buzzing thing (mild tremor felt throughout my neck and head) came back that night. My feet also felt tingly and weird. Did i over do it with the water aerobics? I want to exercise because I feel I am gaining weight being so sedintary (plus I have been experiencing some anxiety and depression for which I seem to reach for more food for comfort) but I am afraid of causing more damage to my nerves. How do you know it is ok to exercise. Should I avoid all exercise for now or keep trying to do some type of exercise with limitations. I am very frustrated as I use to have high energy and stamina before CIDP and now I feel sluggish and pudgy.:(

    • Anonymous
      June 14, 2011 at 5:07 pm

      I exercise regularly and I encourage others with CIDP to do so as well. Having said that, everybody is different when it comes to this disease, and one size does not fit all, especially when it comes to exercise. First of all, discuss your exercise questions with your doctor. At one point I was overdoing it, and my doctor cautioned me to cut back, which I did. He told me that overexertion can actually worsen CIDP, and none of us wants that. The best advice I can give is to listen to your body. Try different types of exercise. Start very slowly and work your way up. See how your body reacts. If you are in more pain, or overly fatigued, or have more weakness, cut back or switch what you are doing. If you know a good physical therapist, they can often recommend exercises based on your particular desires, taking into account your CIDP symptoms. Accept whatever physical limitations you currently have, but keep up the fight to improve your physical capabilities. Exercise is also THE BEST way I know of to improve your mood and mental state, which is so important when dealing with the stress of any chronic illness.

      By the way, I was floored to hear about your head/neck symptoms. I thought I was the only person in the world that had those same types of complaints. In fact, some of my earliest CIDP symptoms were head and neck spasms and pain.

    • June 14, 2011 at 5:11 pm

      Did the neck tremers ever go away? That is one symptom that is driving me crazy. I feel like I have to massage my neck constantly to make it feel normal. I sure wish it would stop!

    • Anonymous
      June 14, 2011 at 11:56 pm

      The neck/head symptoms have come and gone over the last couple of years. When they get bad, I have found that phyical therapy (especially traction and electric muscle stimulation) have greatly helped.

    • Anonymous
      June 24, 2011 at 2:23 pm

      I was encouraged from the beginning to exercise. Already from the beginning of my stay in the hospital (no feeling in hand and feet) I was (trying) to push away the foot-board away from the bed, I had a stress-ball in my hand and was squeezing it while, when I could sit on my bed with the side-boards on, I would throw it at the wall and catch it. Also I was walking around my bed on my toes (holding the bed) and on my heels. sitting and getting up from a chair without hands and without first sliding to the edge. In my house I would continue excercise during ironing, cooking and anything else I did standing up. Gardening was a very useful exercise ( cutting away small branches and leaves, picking them up. picking fruits from a tree and picking wild weeds from the flower beds (without diving in them). Now, a year later, I go for long walks (hm, two kilometers back and two kilometers forth) along the beach way (wide pavement without trees, obstacles and uneven parts). It really helps a lot I believe and the doctors are amazed at my progress although the testing doesn’t show such great improvement. Personally I believe that excercise helps you not to focus on yr disease and is also a great stress-reliever. exercise is very easily done in and around the house and this gives you the chance to lay down for 15 minutes to get your breath again. Go exercise but rest as soon as your muscles start burning (that was the advice from my physicians as well as the physiotherapist.

    • Anonymous
      June 24, 2011 at 2:26 pm

      By the way, tremors, tickling fingers, neck, back, feet etc. are still very prominent. I was told that this is normal and will take a long time to go away. In order to avoid my husband to file a divorce because I keep kicking him out of bed during my sleep (spasms in arms and feet) I was prescribed Neurontin (Lyrica did not help).

    • Anonymous
      June 24, 2011 at 11:43 pm

      What type of neck issues do you have? I have been struggling with neck pain/spasms since my CIDP symptoms began.

    • Anonymous
      June 26, 2011 at 2:32 pm

      To start with I have a hernia of some kind there and have frequent infections there and in my right shoulder. cartilage is damaged and nerves get some pressure sometimes there. Horse-riding, intense athletics, dancing and motor-bikes (when I was young (lol) is the cause and arthritics don’t help (plus I am still riding motor bikes, horses and dance whenever I can, also I do a lot of gardening (just got an apple tree down with my chain-saw). The feeling that I have since CDIP is a weird tremor (as if I have a vibrating phone on my neck (arm, legs, fingers or wherever). This gets more intense, starts feeling like electricity going through me and then starts twisting of some kind (mainly legs, fingers and arms twitch, neck not so much).

    • June 27, 2011 at 8:52 am

      I don’t feel my muscles burn during my exercising so I don’t know when enough is enough. I have been only doing slow kick boarding back and forth in the local YMCA pool. Sometimes I just walk back and forth…i usually do this for about 20 – 30 minutes. It doesn’t seem like that much exercise to me. I actually feel really good during and right after the exercise. My problem is later in the day fatigue hits me and by night my feet and legs start to ache and vibrate on days when i did the exercise. So now I am afraid to actually exercise for fear it will make me feel icky. I know I need exercise but don’t know how to incorporate any into my life. Walking in a pool I thought would be ok because it is not strenuous on your joints.

    • Anonymous
      June 28, 2011 at 11:13 am

      I don’t know about walking in a pool. It is not strenuous on your bones, but it is on your muscles. I am thinking how one could understand if you’re overdoing it for your muscles. Healthy people have this burning sensation. Obviously you don’t (I didn’t in the acute (initial) phase of CDIP). Another way of telling is if your muscles stop collaborating, limbs feel tired, you can’t keep hands/feet steady, veins pop out (the latter also depends on the temperature and amount of fat on feet/hands/legs/arms – I am very thin and it shows!!)

      However, if you have a swimming pool or something nearby, you could swim (start with paddling) without flip/flops, play with a ball with other people or sit down in shallow water and paddle with your feet. I was also told that light weightlifting (until 1,5 kilos (3,3 lb) with arms/hands) was good (1 thick book in each hand is the same).
      For coordination and ‘sense of space’ I was told to march on the spot (in the beginning looking in a mirror), right hand and left foot forward and vice versa. walking small steps up and backwards , walking sidewards trying dancing steps (tsatsa, quickstep) by yourself. Trying to stand on one foot, knee up, then the other foot. If CDIP crept up to thighs and buttocks, lift up whole leg (make sure you keep your balance). Try pick up things with your toes, play with small balls with feet and fingers.

      They gave me a lot of these exercises to do in and around the house and you gradually build up your condition and muscle volume without traumatising your bones or muscles and at the same time keep oxygen-rich blood circulating which helps your nerves grow back. If you get tired, your blood is less rich in oxygen, your muscles cannot get rid of toxins, start burning and get traumatised (this was how they explained stuff to me!!).

      To round things up, take it easy. These things take time. Don’t think you wish to become a female bodybuilder.