fighting fatigue

    • Anonymous
      October 22, 2007 at 8:34 pm

      Hi All: It has been three months since I went back into the wheelchair and started on ocycodine. Mostly my pain is gone. That is a wonderful feeling and I find the less I walk the better I feel. Except for the fatigue which is worse now than ever. I don’t get that-I don’t walk much and I lie down often, take naps and sleep very well. I am trying to keep up my private practice and teaching half time-probably 45% of what I did before I got sick. But it is hard. I am tired most of the time and have few moments of feeling rested. My legs are always tired too, as if I just walked 5 miles. Partly I think it is this time of year which is hard on me for some reason, but I must admit it is scary. I spend most of my time when not working at home in bed and I have little desire to do anything but see my grandson (5 months old) which is wonderful. Yet I feel my life has collapsed so much and still I am tired. My doctor would give me something to help with the fatigue but he thinks it is not a good idea and could cause me more backlash fatigue later. So I am struggling right now and trying to rest as much as I can. Just needed to share it all with you. Jeff

    • Anonymous
      October 22, 2007 at 8:44 pm

      Sorry you are having a rough time with being tired all the time. Couldn’t your DR give you Provogil or Ritalin? I am sure Jerimy takes Ritalin to help him. A small dose won’t hurt you and may give you better quality of life. I think it should be your choice and the DR should give a trial basis of a few weeks on one of those medication.

      Good Luck


    • October 22, 2007 at 8:57 pm

      Im sorry to hear that Jeff, but I reconize this sitation I was like this few months ago, and some day are like this still, but I have more of better day then the worse one. I know this is not much comfort at this time, but remember one day at the time and then you start to feel little better. It is hard work to stand up from the wheelchair and walk, our musclar are not like they used to be. I was very strong of woman to be, so for me it was almost change that I was not very happy and almost cost me to be very dark about my futere but today im gaining about 80 % of my strenght and some guy´s say it is enoug for woman to be as strong as Im today 😀 but then it is the feet there is the same issue with theim but it is harder to get some muscler to work with me so I have major drop foot on let feet and somtimes on both feet if Im very tierd. so one day at the time, it is all that we can do and thank for that we dont sit in the wheelchair any more.

    • Anonymous
      October 22, 2007 at 9:03 pm

      Ben is on 200mgs. of Provigil twice daily. It helps him a great deal, but he still zonks out a lot. His doctor wants him to have a sleep study done, so we’ll be setting him up for that soon too.


    • Anonymous
      October 22, 2007 at 10:00 pm


      Fatigue is by far my worst post symptom. I had suffered for it for 18 years, but was able to carry on ‘normally’ by sleeping most of the weekend – and besides I was younger. 21 yrs down the line and Post GBS in full swing it has unfortunately become quite debilitating. I have heard one doctor (not mine unfortunately) say …… conserve to preserve, and I think thats basically what are finding when you feel better the LESS you walk. Provigil helps me not lie in bed all day unable to get up, sometimes I push too hard as it allows me to do so, but often to my detriment.

    • Anonymous
      October 23, 2007 at 1:02 am

      Oh the fatigue! I am always so sorry to hear how difficult it is for others, too. There are so many residuals to deal with but when you are “tired” everything else is more difficult to deal with. Does anyone remember what a good, restful, refreshing nites sleep really feels like ???:(

    • Anonymous
      October 23, 2007 at 2:18 am

      Hi Jeff,
      As you can see it just takes time and it happens all the time about being fatigued. I am battling it again and I take Ritalin twice daily but Im in that stage where nothing seems to work. I rest as much as I can so take it with a grain of salt and just relax. Take care.

    • Anonymous
      October 23, 2007 at 5:24 pm

      Hey Jeff,

      Fighting Fatigue… On one hand I would like to conquer that thought with embracing it. On the other hand, I say screw it and let me sleep. With 10+ years of this behind me and turning 50 this week, I don’t know what to say except that I understand you Jeff and we are not alone. I’ve got a rather odd attitude today – almost got myself fired at work and didn’t care. I agree but am so tired myself…

      Jeff, aren’t you the one with dream analysis? I’ll tell more later (if you are interested), but I find my favorite part of sleeping is taking enough drugs so I get in the REM state to dream it up! I’ve worked on dream stuff long enough I tend to remember my dreams very well. Now, I’m not talking wild sex dreams, but ones where I meet friends and maybe someone that actually would like to date me. So I wake up somewhat happier even knowing it is not in this reality, but I have experienced it. In my happy type of dreams I have no physical disabilities – pretty cool, huh?

      Dream on, dream on, dream on until your dreams come true… ?Aerosomith?

    • Anonymous
      October 23, 2007 at 8:56 pm

      Hey All: Thanks for the responses. My doctor is willing to give me drugs for fatigue if I want, but cautions against them. I am still not willing to take anything more at this point, but have noted your recommendations and will consider them carefully. I feel a little better today having slept for an hour and a half this afternoon.
      Chrissy-I like your attitude-take drugs and dream! Sounds good to me. Yes, I am interested in dreams and do dream interpretation for a living-great fun and always interesting. Chrissy you can pm me if you like with more about dreams. I do know where you are coming from though-at 62 I am not unhappy to have to rest more and take it easy. I worked hard for a long time and don’t need to prove anything any more. So resting and sleeping are not the worst thing to happen to me. It is just sometimes I miss being able to do some of the things I did before. And I want to have the energy to be with my kids and grandkids etc. But life remains sweet and I will continue to adjust-just needed to vent and I know you guys could relate. Jeff

    • Anonymous
      October 26, 2007 at 11:45 am


      If only everyone would be brave enough to share fears/angst/anger/sadness. We’d all be a lot healthier spiritually~
      Fatigue is just a part of life for me today. Its not bad, its not good. Thanks for your honesty, and keep a positive attitude for your grandson!!!

    • Anonymous
      October 26, 2007 at 2:23 pm

      Fatique has been a fact of life for me since 1993 first onset of GBS. I equate PAIN with FATIQUE:mad: . Last year I had a cold and sore throat so I went to see a local a GP for the first time. He immediately treated the sore throat (this is how my GBS started both times) and then started me on a coarse of b-12 injections- one a week for 5 weeks. I began to feel alive again for the first time since GBS onset in 2004. I get one a month now. I guess there is a wide difference of opinion regarding b-12 injections but they do give me a boost!
      GBS-MFv 1993 and 2004

    • Anonymous
      October 26, 2007 at 6:43 pm

      I happened to get a msg from someone I’d never met here and had long ago stopped coming here…so I get here and voila!

      Fatigue. It is dismantling my life. It has been really hard on my family. I have a great wife and 4 kids and its hard on them. I know it makes my wife feel so lonely when I am in bed and can’t even wake up to talk. I am tired in a way that almost seems like it would be better to just slip away…(sorry–just being honest)

      I have always been a strong personality, a fighter…but, this thing is unlike anything I’ve ever encountered. I am a guy that would never have expected this to be something that would beat me.

      Since the weather began to change about a month ago, here in Utah, I have really been down hard.

      My doctor just prescribed 200mg Provigil once a day. I am on day three. Yesterday it gave me a big lift and I went out and ran myself into the ground. you’d think I would know better by now :rolleyes:

      Anyway, it is nice that this was here. I needed it.

      November 6th—2 year anniversary of the full blown version of GBS

      DeadofKnight–my chess name on another website. I used to play at night a lot and Knights have been my favorite pieces forever…

    • Anonymous
      October 26, 2007 at 7:54 pm

      Fatigue is playing havoc with Brandy this time around. She has gone back to work, part time but must nap when she gets home and is in bed by 9:00 pm at the latest each night. By Friday, she can barely make it to 8:00 pm. At 22 she is struggling with this piece as she is sound asleep when her friends call. To look at Brandy today, except for her walk being a little strained and slow, she looks like she did 6 months ago. For now, Il let her sleep and hope that this too will pass.

    • Anonymous
      October 26, 2007 at 8:52 pm

      Hey Jeff,
      I want to thank you for being so great to me these past months when I have been struggling and so low. You have always been so gentle and supportive. So I want to say thanks and tell you I know your struggle with fatigue. And I am so sorry that it is getting you. I have recently had a breakthrough after years of this disabling exhaustion. All I can attribute this change to is 1) really slowing down and measuring all of my activity, 2) change in weather (its cooler now), 3) medication. I encourage you to just keep listening to your body and resting, sleeping and doing what you know is best. I wish you the best and appreciate your letting us know how your doing. Stay well.

    • Anonymous
      October 27, 2007 at 8:16 am

      Thanks Linda for your kinds words and you as well dave-not-taz and everyone else who responded. I see how important an issue this is for many of us and am glad I wrote about it. I am trying to listen to my body and not be too discouraged by what it is saying. I am finding meaning in how I must live and joy as well. I hope all of us can learn from fatigue and turn it from an obstacle to an ally-somehow. Anyway, thanks again for the support. It is nice to know what I write helps others as well as myself. Jeff

    • Anonymous
      October 27, 2007 at 8:30 am

      Hi Jeff,

      I read your post and thought, geez, that’s exactly how I feel. It’s like I have already done a full weeks worth of exercise by the time I walk to the kitchen. But, after some time now I am figuring out how to save up my energy for the day. The weather here in Florida just now changed this week and I honestly feel a lot better this morning. I don’t know why, but I don’t care!! You will be fine, as we all will, it’s just looking at things from a different perspective:) Take care….

    • Anonymous
      October 27, 2007 at 8:31 am

      Hi everyone I have ADHD and it is very bad so I take Concerta 72mg and I just started to take 10mg of Ritalin to help kick start the Concerta.
      I wonder if I didn’t have CIDP if I would need that much Concerta.
      The DRs have a hard time deciding about the dosage I need for my ADHD because I am taking alot. I was given the 10mg of Ritalin on a trial basis and I go see my family DR on Friday to give him an update.
      I will have to tell how maybe my having CIDP is affecting my ADHD and that is why I am on a high dosage.


    • Anonymous
      October 27, 2007 at 10:07 am

      Dear Chrissy – thanks for sharing. I’ve not been on this site in so long. My husband of 62 was diagnosed of colon cancer in June. I am 60 and GBS survivor from 2000. If I thought I bad residuals before, they are nothing now compared to the stress on my body from this whole ordeal. The good news that my husband’s cancer is contained in his tumor and it can be removed successfully in december. The doctor wanted to have him do chemo and radiation first, build up and then do surgery. This had been a long road and not a happy one, because I am the only caregiver, shopper, cook and in his absence I am running the business which I did before, but now more strenuously since he is unable to be there very often. Somedays I am so stressed that i just want to scream, and do sometimes. I’m so beaten down and angry that my family doesn’t desire to help out. My husband has had a very negative attitude about the whole ugly thing and he’s lost over 50 lbs. needless to say, I’m spending alot of energy trying to please him and get him to eat. He doesn’t want to go out and has become temporarily incontinent. It’s the same old thing with GBS, just because you look good, no one has sympathy for how you feel. I tried to explain to his dr last week, my condition and that I physically and stress wise can’t do all this running around anymore. No compassion there. My kids have their families and there’s only so much you’d allow a friend to do – it’s a personal thing and besides no one ever shows up to see what they can do. I know everyone is going to tell me to get help. I have a house cleaner and gardner once a week, but having someone around all the time and having to guide them or having them take up my privacy and rest stresses me out more. I hope you all will pray for me and my husband that this period will end soon and pray for more energy for me. I feel like I’m vibrating, but not going anywhere. I was paralyzed completely and GBS spread into my lungs. I am now functioning after 7 years, but no one knows the numbness in feet, face, hands and feet and my stress level, chronic fatigue better than you guys. This is the first time I have had minute to let you know what’s up. Hope to hear from you all. God bless you all. bunnyrarebit