I was on a c pap for 1.5 years it helped that part has improved but I am left with 60% lung capacity .
Its all up and down. I took the c pap back. I probably messed up but I felt like I was going scuba diving every time I put it on. Sleeping was disruptive with it. I am now inquiring about the SomnoDent for sleep apnea with my dentist. Check out the article from estaban. Stay as busy as you can. Exercise as much as you can.
I have extreme fatigue daily, and it's especially debilitating if I do anything "extra," like go out for an appointment.
For myself I'm able to occasionally push my way through it, like go out to dinner with friends, and do things around the house. Sometimes I don't last as long as others but its better than sitting around. All the guys in the neighborhood envy me. I take naps everyday and take up to two weeks to complete my honey-do list with out getting into trouble with my wife.
I had my first real fright a fortnight ago. I get the train to the city then catch a bus to the hospital to get my Ivig treatment. On the way back the bus was late and when I checked the train I catch I had 60 seconds to make it to the platform. I ran all the way and then found the escalator was not travelling in the right direction so I tried to rush up the stairs. Well, I made it to the top of stairs, went to put my foot on the platform went as weak as a kitten and my legs just buckled underneath me and I went down like a bag of chaff. How embarrassing! I then tried to stand up and fell back down because my legs just wouldn't support me. Luckily the conductor was right there and witnessed me fall down. This held up the train while a stranger offered to help me get to my feet and helped me onto the train. OMG! I don't know what I have damaged in my elbow but hell it still hurts. Nothing else seems damaged. I am off to see the GP next week. When I am tired I just have to sleep. I also take magnesium and calcium. I haven't noticed any extra energy but that could just be me. I have had several relapses and have also been dealing with a lot of UTI infections and have been hospitalized 3 times and on antibiotics from the doctor twice. One thing seems to cause another. If I go shopping I have to come home and go to bed I am so zapped. All I can do is rest rest rest. So frustrating!
i do suffer from fatigue too but iam still able to work full time (i work for a trade union) the maian reason is CIPD has also effected my breathing I only have 40% lung capacity wich makes sleeping difficult and I cant walk for any great distances and do feel tired most of the time
Mine fluctuates in severity. At the worst I have to stay in bed and at the least I can push through it. Fortunately I'm retired, I couldn't predict when I would be able to work as well as be that productive. On most occasions when I push through it I tire easily. If I could get rid of the fatigue I could live with the rest. My breathing is affected as well. I have wondered if oxygen would help. Have you tried that?
i dont take oxygen but do sleep with a mask which pumps air in too keep my air waves open
I have been on a c- pap for 2 years I fatigue easily and even sitting I will nod off. Driving I will nod off. With IVIG I have been able to improve but I have lost so much feeling that damage occurs and I don’t know it .
I've had severe symptoms of CIDP for two years, with only in the last six months mediated and medicated by IvIg and Imuran.During the year before IvIg, I experience swings in remission/relapse based on extent of exercise.
I constantly exercised and in this way I think I self medicated by using my bodies natural defenses. My exercise was on the IronMan level. I was also taking the max dose of Nortryptaline, as my neurologist wrongly thought my CIDP was advancing diabetic neuropathy. If I ever felt fatigue, I just assumed the diabetes was getting to me and I jumped up and ran or walked one or two miles (I have a big yard) day or night.
I'm currently experiencing good results from 120 grams, every two weeks of IgG and I am still taking the Imuran. However, I believe the combination of extreme exercise (swimming 90 minutes each day & walking 3-5 miles per day) is forcing the Ig antibodies to penetrate deep into the extreme reaches of my muscles and hard-working nerves. Remylinazation is happening in me and with luck your son will also reach this point.
Previous to the present grueling work-outs I assumed the IgG would past out of my body quicker if I exercised hard. But the life of IgG is up to 21 days. Now, I'm thinking IgG goes through the kidneys, and if still viable, is passed back into the blood stream until it degrades or is destroyed by its natural antagonist (macrophages?).
I never though I'd reach a point of positive nerve/muscle function, but I have and I credit my constant nerve and muscle activations... even when I was dead tired, I got up and worked out!
I also consume three, double espressos... and that is just before noon, lol.
I must say that I have a contradiction here. When my feet hurt so bad that I can't fall asleep. I get very fatigued during the "neuro period" (they come in for a week of misery every 3-8 weeks). I find myself to tired to even roll over in bed. When I combine that with insomnia (since age 21) it is just horrible. But on the good end, I am always "on the go" and even with my sleeplesness, I feel a bit punchy and can work any task to completion. However, if you throw in a bit of depression, I lose all interest in everything. Can't answer the phone, get the mail etc.... Luckily my depression does not last long and seldom visits of late. I verage about 3 hours sleep a night.
For depression I take PAXIL, for pain Nortriptalyn. Both are anti-depressants, but they activate or deactivate different hormones between neurons in the brain. I also take the maxim dose of gabapentin, which helps me sleep a solid 8-9 hours. It's a killer, pain killer! A year ago I was without IvIG, pain killers, and I slept on and off, and like you, I managed a fitful 3-4 hours of sleep each night.
Richard G said:
I must say that I have a contradiction here. When my feet hurt so bad that I can't fall asleep. I get very fatigued during the "neuro period" (they come in for a week of misery every 3-8 weeks). I find myself to tired to even roll over in bed. When I combine that with insomnia (since age 21) it is just horrible. But on the good end, I am always "on the go" and even with my sleeplesness, I feel a bit punchy and can work any task to completion. However, if you throw in a bit of depression, I lose all interest in everything. Can't answer the phone, get the mail etc.... Luckily my depression does not last long and seldom visits of late. I verage about 3 hours sleep a night.