I'm curious about how many CIDP patients deal with fatigue and to what degree.
Fatigue hit within the first few weeks of my symptoms. It was hard to stay awake even. I had to take 2 naps a day and sometimes go up to bed at 6. I thought fatigue was something I would have to accept. I was iron anemic and had infusions to correct the deficiency. I started taking magnesium, calcium and d. Not only did the fatigue improve but so did the flu like feeling I had been living with for 4 and 1/2 years. Now, I can go all day. I recommend everyone with fatigue to get a nutrition panel done. Insurance may not pay. It was around $200 but worth a million to feel the way I do now.
Thanks for the info. I'm taking mag., cal., need to take vitamin d. My fatigue fluctuates but is constant. I've tried all kinds of things. Its like a bad girl friend, I can't get rid of it. I definitely will try the nut panel.
It hits everyday like a wave. Most days I take two naps and go to bed by 7:30. I fall asleep all the time.
How long have you been dealing with the fatigue? Mine has been almost 4 years.
Jordan said:
It hits everyday like a wave. Most days I take two naps and go to bed by 7:30. I fall asleep all the time.
When I feel fatigue coming on, I walk one mile, sometimes two or three, using eight or ten pound hand weights. I have a big back yard and I walk it four times around for one mile. I force myself because at the quarter mile point of my walk it is up a five-degree grade and it takes a big push to make it the first time around. I have a AFO for a foot-drop, gait disturbance and sometimes breathing problems.
At the root, we all have a muscle motor-sensory deficits. I can usually beat all or most my problems with a specific work-out when walking, or with my weight-machine or my stationary bike.
I am convinced I held off CIDP for over 10 years by consistently working out. I am not a jock; more of a geek, however when I'm at the beach these days all the young women on the beach ogle me...LOL. And this in itself is a great confidence builder, but with a withered left leg from CIDP my Tarzan appearance is defeated. It is then that I pound my manly chest with my clenched fists and duplicate Tarzan's yell, whereupon Cheetah arrives to help me back to my truck... kidding of course, bawana.
I take Imuran twice daily and I am infused with 120 grams of IgG every two weeks. These work-outs REALLY help when I relapse, when it seems like every muscle in my body feels like it is wrestling giant pythons.
BTW- I also swim every other day for 90 minutes... pretending that crocodiles and black mambas are in pursuit.
Breeze said:
How long have you been dealing with the fatigue? Mine has been almost 4 years.
Jordan said:It hits everyday like a wave. Most days I take two naps and go to bed by 7:30. I fall asleep all the time.
have had fatigue since I had a knee replacement in May of 2013. I was doing really well with my physical therapy. I was walking around a football field 2 times every other day and walking around my block everyday. About 5or 6 weeks into my recovery, I noticed that it was harder and harder to walk and my pace was so slow. My feet were beginning to go numb in places and I was getting electrical shocks from my hips down often. I would walk to the CVS pharmacy from my truck and by the time I was done, I could hardly get back to my truck. I was so fatigued. I went to a specialist and a neurologist and both of them started doing many types of blood test, brain scans, MRIs of my back where I have had cervical and lumbar surgery to fix me from an accident. I had spinal a spinal tap and myelogram of the whole back, and a nerve conduction test. The result of nerve conduction test indicated that I had CIDP. I am doing infusions now every three weeks.
I was getting IVIG every four weeks then I had knee replacement which sent the CIDP in high gear. Lost feeling in both legs up to my knees, lost feeling in my hands, pain was intensified feet were on fire and needles. The muscles in the replacement leg got stiff making rehab difficult. Doc increased IVIG to every two weeks plus put me on revlimid with steroids. That was a couple years ago.
Fatigue effects me everyday. I take my time in the morning when getting showered/dressed to avoid wearing out by 8am! I do limited activities and when I do tasks conservation is the key. I notice increased tinglies when overdoing it. Walking is not easy, so I don't push this in fear of getting all tinglie while away from my safe haven. You should know I am currently going through a bad relapse. When I was "in remission" I could do 75% of what I wanted. Fatigue wouldn't set in unless I pushed the envolop by doing excessive activities. When I get fatigued it's time to sit and recharge, or nap.
Sounds like the fatigue I have. When I do a task it usually wears me out. I used to get the tingles when I'd over do it, not sure were they went. I always have balance issues particularly when I stand up after sitting for a while. Sometimes I believe its from the weakness in my legs. Some mornings I get up and go right back to bed. I haven't hit remission yet. Currently on prednisone wondering if I shouldn't go back on IVIG. Prednisone isn't holding things off like IVIG. At least with this disease my dog and I have the same sleeping schedule and my wife doesn't say a thing.
I know if I do to much or move to fast the breaks come on fast. Some weeks I don’t make it out of bed for a couple of days. Othere times I feel allot better. It is difficult to find the right pace.
It takes me two days to mow the yard. My lot is 100 X 110 and I use a garden tractor. I mow one day and trim the next. However some days when I don't feel to bad I really enjoy doing projects around the house. (my wife enjoys it to...ha ha) I don't want to give up doing things, sitting around doing nothing isn't good. I'm already dealing with trying to get ride of an extra 30 lbs. because of prednisone. Now that spring is finally here hopefully the sun shine will make us all feel better and we can all have a great summer.
I was diagnosed in May 2013. I have been so fatigued that I have fainted several times. I would fall asleep on people during a conversation, no kidding. I am constantly tired. This is especially the case after returning from a trip to the doctor or any short outing. Just transferring from the car to the wheelchair( and vice versa)takes a lot out of me. I think I will take the advice of MABES as well.
Have any of you had sleep studies? I have severe hypersomnia but now I think its related. Does the IVIG help? I know the medrol has helped significantly but I struggle daily. I also take 250mg of Nuvigil twice a day. but when I flare it does nothing!
I did and it revealed a complex central sleep disorder. I didn't have apnea. Probably because there wasn't a chance. I woke up over 90 times but wasn't aware that I did. I was given a vpap but it made me more tired because of breathing shallow for so long. I have gotten much stronger and will try again soon. They say it will make everything better as soon as I can tolerate it.
I was diagnosed with apnea, tried the vpap. It did nothing but stop me from snoring.
mabes said:
I did and it revealed a complex central sleep disorder. I didn't have apnea. Probably because there wasn't a chance. I woke up over 90 times but wasn't aware that I did. I was given a vpap but it made me more tired because of breathing shallow for so long. I have gotten much stronger and will try again soon. They say it will make everything better as soon as I can tolerate it.
estaban said:
Thanks
ARTICLE ON FATIGUE:
https://www.gbs-cidp.org/newsletters/printer%20versions/fatigue%20i...
I have chronic fatigue with my CIDP. I still work one day a week plus babysit a 2 year old 2 days, this by itself is enough to wear you out! But after my day of work it literally takes me almost 2 days to recover. I am a hairdresser my day from start to finish averages 10 hours. Over the last 7 years I have learned to adapt at work I use a chair to sit down and I have a full-time assistant. I am not willing to stop working yet as I fear I just would lie in bed all day. It is hard to think of showering and getting dressed on my off days it’s just too much work. I do know showers do help and if I can force myself to keep moving it is better. I use to tell my husband my legs feel like tree stumps hard and heavy like I am carry dead weight. Some days you can fight the fight and others days not so much. My average bedtime is 6:30 or 7 I think it is due to my body just shuts down maybe because I don’t sleep through the night. It is a vicious cycle.