Chronic Fatigue with CIDP?
AnonymousOctober 18, 2011 at 11:12 pm
I’m just wondering if chronic fatigue syndrome is often suffered with CIDP. There are days that I feel my fatigue is keeping me in bed more than my pain. Has this happened to anyone else on this site? Any ideas on how to kick this fatigue that has completely taken over what little life I was living? Please help!
I thank you for any advice.
Take care of yourselves.
PS:I’ve been dx’d with CIDP, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Miller Fischer Syndrome, Migraine Disorder, Pancreatic Insufficiency, IBS, NOS autoimmune disorder, sleep phase disfunction (no restorative or REM), and more…….
AnonymousOctober 19, 2011 at 4:04 pm
[QUOTE=GH-CIDP]From Parry and Steinberg:
“[i]Recent studies have shown that a careful exercize program can reduce fatigue in GBS and CIDP patients. … avoidance of exercize leads to deconditioning and an increase in fatigue.[/i]”
It is important to get exercize but not to overwork to the point of exhaustion. When I started outpatient therapy, I would do it twice a week for about an hour and a half, and mostly rest on the off days. Now, further into my recovery, I no longer do therapy, and can be active everyday, but still have limits. You need to find the right balance between exercize and rest.[/QUOTE]
Thanks GH-CIDP. I need to retry excersise. A few months ago, I did 30 minutes on a stationary bike and was in bed for 3 days following:confused: I guess I need to find my speed and balance. I’m glad to hear you are active on a daily basis:) You are an inspiration:)
AnonymousOctober 19, 2011 at 5:57 pm
After 4 years of this, I can tell you from my experience that I always thought I’d feel better, but I still don’t.
So, I’ve come to the conclusion that I guess this is the way I’m going to feel, and the past is past, but even though I feel exhausted and in pain when I wake up, I still try to get up (most of the time). It’s just a matter of accepting that I’m in pain and feeling below-par. It takes me up to an hour to feel better in the mornings, because everything hurts and is cramped and my hands are so sore and swollen in a claw. So I do some gentle stretches in bed, and then I can get out of bed, and then I do some arm-swings, and relieve the shoulder and arm pain; and then I start walking and after awhile my legs & feet feel less pain, and I can start my day. I find that it’s better to have 2 cups of coffee before I shower, just to get my hands limbered up a bit, because it hurts them too much to hold onto the soap or towel or to be bent from the pressure of soaping-up. Each one of us develops our own working routine that works best for us, and we have to work around the pain and our mobility/disability factors.
AnonymousOctober 20, 2011 at 11:10 am
Hi… After first being dx with GBS I have experienced extreme fatigue – for the past 14 years. Since I finally got SSDI and don’t have to search for jobs as I kept getting fired due to attendance, I am able to get the rest my body needs. I have accepted that 12 hours is my normal sleeping time. People that I haven’t seen in awhile ALL say how good I look. It’s because I can now give my body the rest it needs. I do mild exercise and probably not enough but do stretches and run after my cat *lol* And fortunately, I remember my dreams very well so I feel like I have several lifes running all at once. I know, a bit off I am but I smile through it.
I take vitamins heavy on the B complex and am going to a pain doctor next week although I’m a bit scared… but I am getting an MRI of my back next week and just want to see what’s going on there. May not be GBS related but it sure hurts all the time.
One thing I always say is rest, rest and more rest!!! And I’m not the only one that will say that – I believe its just part of the lovely residuals from GBS.
Oops, I just got to typing away and I hope I’ve shared something that you need.
AnonymousOctober 24, 2011 at 4:54 pm
12 hours of sleep is the ideal for me, but do to the stresses of life or travel, or other circumstances, I don’t always get that. A lot of the time I feel tired, & after almost 10 yr. I still can’t get used to that part of CIDP. I can still remember the person I was, who could do so much on 6-7 hr. of sleep & it hurts. I am tired of being told that I am now almost 10 yr. older, as I see my classmates & what they can do, most of them still working full-time as well. But it is what it is, & there are worse illnesses to have; small consolation I know, but it’s the best I can do…
AnonymousNovember 1, 2011 at 9:13 pm
Are you able to perform your “daily duties” as a housekeeper, mom, wife, etc… The things that you are use to doing that don’t wear you out so much? If so then increase some of these things, like if you dust 3 times a week then start dusting 4 times, then times, etc…. If you only vacuum once a day then do it twice a day, or make it more difficult on the once a day by moving furniture, etc… Also a schedule can be very important. If you get up @ 8:00am then get up then even if you are tired and move yourself to the couch. If you take a shower everynight before bed and are tired then just take a quick bath. Keep the routine but at very minimal level and build it up.
The idea with these syndromes is to find the limits we can live in that are still productive and make us feel “humand and useful”. If I have a big event coming up I rest the day before and schedule very minimal days afterwords. It took me time to learn this, trial and error.
Of course if it is too bad then talk to your doc. It could be a combination of meds, that are easily changed, it could be you need a med added, and ALWAYS have your vitamin levels checked. One time my vitamin D level was so low I had to take a prescription!!! I didn’t know vit D came in a script:eek:
March 4, 2012 at 2:07 am
Chronic Fatigue Syndrome is a name given to chronic fatigue when no specific medical condition causing it has been diagnosed. Persons who have CIDP have chronic fatigue associated with it, but it is not called Chronic Fatigue Syndrome in that case. It is just an aspect of CIDP.
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