I'm having trouble keeping my weight down. I have always been stocky, but loved to play tennis, swimming (water aerobics), treadmills, bicycling, working out with weights, etc. My neurologist (who I see this morning and I'm going to ask him about this) does not want me to exercise at my gym. He didn't say why, but I think that exercise in my condition, puts extra stress on my muscles and nerves, and could extend the damage further or even into new areas. Or it may be that my immune system is in a weakened state (from all of the IVIG and CellCept immunosuppresents) and being in a sweaty gym or pool could expose me to many harmful bacterial, fungal or viral bugs that would be detrimental to my health. But with no exercise, my weight continues to go up, even if I'm eating little or nothing. One side note: I also have severe hammertoes on both feet. My toes are permanently curled; I cannot straighten them out at all. This makes me unsteady upon standing. I fall pretty often, but haven't broke anything yet!!
I was first diagnosed with CIDP one year ago. I lost a lot of weight at first, but as my weakness leaves me barely able to stand, I would have to access some work-outs from my wheelchair. I could still ride bikes and maybe do some water aerobics, if I didn't drown anyway. I have to use an electric wheelchair to get around my house, as my arms are too weak to push a manual wheelchair. I don't have a way to transport my electric wheelchair, so my wife has to load my manual wheelchair for doctor's visits. I'm blessed to have on an electric wheelchair; couldn't do anything without one. All of this weakness is leaving me with a sedentary life-style that is not conducive to good health. I know I will never be able to play tennis again, but I don't want to give up. I understand that CIDP affects everyone differently. But there must be someone who has this problem. How does one exercise when profound generalized weakness is nearly all-consuming. Any thoughts or sugggestions ??
I am interested in thoughts on this - being a recent diagnosis and (thanks to an on the ball GP) probably an early diagnosis. Now in my 3rd week out from the first intensive 5 day IVIg I am confident that I am not getting worse and perhaps improving. Next IVIg is late next week. Main problem is leg weakness and poor balance but I am increasing my exercise rate and refuse to resort to a walking stick because that would be admitting defeat.
Week 1 was reasonably quiet to get over side effects, week 2 was pool work and minor home exercise and now I am out in the country getting lots of slow walking (and fresh air).
I can say that exercise causes at least temporary increase in sensations and some pain but am reluctant to stop (DON'T GIVE UP!!!) because the alternative might be worse.
As I said above - thoughts appreciated.
I also was diagnosed with CIDP about 1 year ago. When I first found out I had CIDP I had some weakness in the legs and lots of tingling and some numbness. I have been on IVIG every 21 days now for a year and am pretty much symptom free. I have not started up workouts either because when I was first diagnosed I noticed anytime I did pool aerobics or treadmill workouts my symptoms increased that day and the next day. So I pretty much don't get any real exercise but now that I am symptom free I am very active just doing my every day activities. I have a young child and am alsway very busy just chasing her around or doing house work, work erands, etc. I keep thinking I should start up my lunch hour 40 minute walks again but have been scared they will bring my tingling and pain back. Maybe I will start slow with 10 or 15 minute walks to see how I do. I don't know why exercise increased my symptoms I only know it did. Like Michael said above...Don't give up! Once you have your symptoms in check maybe you will be able to start exercising again. Good luck!
I am fortunate that exercise does not increase my symptoms. I only walk and cycle and do pilates and so do not do weights or aqua-robics or anything like that. I was recently warned by my physician that my sugar levels were climbing and he sent me to a dietician. The result was amazing and could possibly be relevant to you as well. She immediately saw that my problem was far more about what I was drinking rather than eating and proved to me that by drinking what I thought was healthy fruit juices and flavoured waters etc and eating tons of fruit I was causing myself huge problems. By cutting just those out and drinking green tea and water instead and only eating three fruits a day I have lost 10% of my body weight in just 4 months.
This may not apply to you but worth mentioning just in case.
Hey, I have been diagnosed for @ 18 months. IVIG is working well. I do understand about exercise bringing on weakness and gym germs, but for me, exercise has helped me both physically and psychologically. I go to the Y and both spin and work on the floor. I can tell periods where I am weaker (I end up overtaxing my muscles) and the exercise sometimes really wipes me out, but I know how this has helped me maintain. I dont think this will hurt your nerves any further, but if you overstress your body, you could be open for opportunistic bugs.
I hope you can begin exercise and get your body moving and stronger!
Although my diagnosis has not been confirmed, all of my symptoms fit CIDP. My weight was already pretty high, and the loss of balance began making me fall more often, significantly when the barometer fell rapidly. I don’t think I have any ligaments or tendons in my knees or ankles that haven’t been affected. This in turn has led to less activity, more weight gain, a real negative feedback loop. It really kills me to not be able to play golf… I’m a low handicapper who walks and carries my clubs. Today I begin physical therapy which includes an aquatic exercise component, aimed at stability and posture. I will pass on anything that may be of use in a general sense, we all have different needs. But one thought nugget for everyone… I was reading an article that argued that the best foot support is no shoes at all. We humans did not evolve the highly complex bone and muscle system called ankles and feet in order to fit into shoes/sneakers. Research of a rather recent vintage in podiatry has concluded that corrective shoes actually worsen the condition that they were designed to help. So go barefoot as often as is possible, that will naturally strengthen your feet and ankles. And the more active you are, the more weight you can shed and your circulation will improve. A virtuous feedback loop… and the psychological benefit is huge. Best wishes to all to feel better.
Your determination to better your condition is very commendable. I hate this disease and won't ever be able to do a lot of things I used to do (golf, running, hiking). I too fight my weight. But I am still ambulating. I think you should do as much as you can as long as your "recovery time" is short and you don't feel overly fatigued the next day. A therapist can certainly help you and your insurance should pay. After 2 years on IVIG I have found that strengthening has been the best form of exercise. About 6 months ago I began to very gradually increase the weight while working on my calf extension and hamstring strengthening exercises. It has really helped. I barely limp now but the numbness in both feet remains and I am fortunate to have no pain. I emphasize starting with light weights and slowly working up. I exercise only the muscles that I feel have been the most affected in my legs. Find an expert in shoe fitting and arch supports. That should help your balance. But, you are in a wheelchair and I am not. Again, I commend you for trying. We just have to fight this stuff. Do not overdo it. Lastly, I think the benefits of swimming in a professionally managed pool outweigh the risks of infection. I swim a lot using stubby fins for the safety aspects as well as exercise benefits. may you be blessed with better health
I was diagnosed with cidp in feb. Since then I did physical therapy till my insurance stoped paying for it. I was able to transfer from wheelchair till my body was to weak to tranfer. I had an electric scooter in my house and didnt have a way to transport. I get no exercise and I now cant pilvet my body to full seat back on my bedside comode. Making it even harder. This past week God blessed me with a used van with a lift to get to my doctors visits and ivig infusions. Tommorrow I go for ivig and im prayi.g my insurance has approved a higher dosage of ivig but I to am looking for ways to be active and pray I get my strength back.