Fatigue and GBS
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July 26, 2006 at 11:40 am
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I was diagnosed with GBS on 10-31-00. Does anyone else experience the degree of fatigue that I have ?? It’s absolutely unbearable sometimes. I have ZERO motivation, seriously. I sometimes find that I have sat for over 30 minutes and still can’t get the energy or w/e you want to call it, to get up and going. My mind is saying ” C’mon..just move ” but my body says ” No “….I have been to my physician about this and to my neurologist. They both seem to think it’s just fatigue caused by the GBS. I’m not sure if they are just laying it off on the GBS for lack of knowing what else it may be, or if it truly is related to the GBS…. I would love to hear from anyone who may be able to relate to this. I wake up exhausted, I go to bed exhausted, I find I can nap at just about any time of day or night with little or no improvement in the tiredness 🙁 It’s very discouraging to want to get up & going and not being able to do so -
July 26, 2006 at 4:31 pm
Hi: Fatigue is probably the most serious residual from GBS. If you look at some of the threads on this forum you will see how many people discuss this issue. Take and look and you can also find references to studies by docs that substantiate this fact. So your condition is familiar to many people with GBS and it is a condition one must learn to live with and find a way to not let it totally dominate one’s life. So I would recommend you read this earlier threads to see how common this can be. Good luck, Jeff
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July 26, 2006 at 6:33 pm
Two articles that discuss fatigue..
[url]http://www.gbs-cidp.org/forums/showthread.php?t=102[/url]
[url]http://www.gbs-cidp.org/forums/showthread.php?t=478[/url]
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July 26, 2006 at 7:15 pm
Sja,
Fatigue is definitely by far the worst problem I have, the past couple of years have become unbearable. If I was able to wake up by 9:30, then by 10 I would already be slurring my words because of the fatigue. I lost my sense of humor, and my poor kids just see mommy sleeping all the time. 24 hours sleep a day was not enough for me. No person could possibly understand unless they have gone through it, it is extremely debilitating and soul destroying. Doctors really werent even that interested because how does one explain that you are so tired you cant function. I was prescribed Provigil a few weeks ago (one of the things it is supposed to treat is narcalepcy (sp)), I just cant tell you how much difference it has made in my life! I dont really know what kind of drug Im dealing with, but I almost feel human again. Attached is a link that may be of interest to you.
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July 26, 2006 at 7:55 pm
If you go to the threads that they gave you links for, you will see that fatigue is a huge problem for many, if not all of us. Neurontin itself at high doses will knock you out, so I have switched to Lyrica and take much less and am no longer in the midst of a Neurontin fog 24/7. Also I am on Ritalin which has helped me a great deal. Good luck, like many of us you will need to find the right combination of meds that works best for you.
Jerimy
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July 27, 2006 at 2:50 am
Yup, the fatigue thing! Remember, it’s the nerves that tire out and can’t send healthy messages. I believe you’ll find that in other threads which you’ve been directed to. Never give up! One thing GBS will teach you is patience:rolleyes:
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July 27, 2006 at 1:43 pm
I try to get 8 to 9 hours of sleep a night. But there are those days where I just can’t or won’t move. Years ago my doc. put a diagnosis of Chronic Fatigue Syndrome down for me and then I saw something insurance that they don’t want people with this. Just FYI on that.
I do have a bit of a problem with my job as I am single and have to take care of myself. I have tried and tried to explain to my boss what is going on. At least I am good at what I do or I wouldn’t be able to keep a job. My social like sucks… this is a wonderful place for friends. Come visit often 😀
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July 30, 2006 at 5:18 pm
HooBoy!! Do I know about fatigue! It’s only been 16 months since i first got GBS and I was out of the hospital pretty quickly (3 weeks) and even though I have regained everything else, I am soooo tired all the time. i used to volunteer for a lot of things and I can’t do that any more. I used to could clean my house in a day. Nope. I used to could walk down to our barn to feed the calves, but now, just getting to the first gate is a chore. The only thing I want to do is sit. So I sit a lot. The problem with that is the weight gain, but shoot! I don’t have the energy to walk to the frig. so it’s okay. I’m hoping that it will get better. I’m tired of being tired! I know what you’re feeling, I can sleep any time, too. After sleeping 9 or 10 hours at night, I can take a nap during the day with no problem at all. Bye, I have to go lie down, now.
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January 8, 2007 at 6:58 pm
I hear ya. Im new to this forum. I was diagnosed with GBS back in summer 2005. I still suffer from fatigue and dizziness and its definitly a pain in the @$#%! Hope everyone is doing well and getting better!
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January 8, 2007 at 8:11 pm
Obviously you are not alone. There have been so many immediate posts regarding our battle with fatigue. Some time ago Chrissy sent me the best article on fatigue. It made so much sense after reading it that I sent it to my Primary Care Doc and took a copy to my physical therapist. They both were pleased to have the information and it changed some of the therapy we were doing. It may even be one of the articles that some one else suggested earlier. I’m sure if you contact Chrissy on the members list she could forward it to you. I’m a bit computer illiterate or I’d do it myself. This may get you there [url]www.jsmarcussen.com/gbs/print/trial1.htm[/url].
It is well worth reading and may even give your Dr. a different perspective.
Good luck, rest often. You may not want to, but sounds like you are needing it.
JayDee
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