Battling Fatigue

    • Anonymous
      January 8, 2007 at 7:15 pm

      Hi everyone! Im new to the forum. I am 21 years old and I was diagnosed with GBS back in summer 2005. I didn’t have the really severe cases like I’ve read about, but it was still very bad. They said it was a “very classic case.” Its been about a year and a half and I suffer from fatigue and dizziness that I believe is left over from GBS. I’m in college and also have a lifepartner(I love calling her that hehe) that I have been with for almost 3 years now and its definitly hard to maintain energy to devote to her and to school and to just everyday life. Just thought I would talk about some of the things I have done and will be doing soon to get this fatigue under control.

      First, getting 7-9 hours of sleep at NIGHT. I use to think I could stay up late and just sleep later in the day but the body knows better. I go to bed at about 11pm and wake up at 7:30-8am.

      Next I try to eat well. I basically try to get 100% of every vitamin and mineral and sometimes even more. A multivitamin might be good for people who cant get it through food. And eating foods that are good sources of energy and fuel.

      Your mental state. How you think, GREATLY affects how you feel. Not that its all in our heads, its certainly real, but I have found that these days I have been feeling better since i have started to tell myself “Im not tired today, today I wil feel better, I’m not dizzy today, etc.” Also, believing that you are getting better and that the fatigue is not permanent is a must too.

      Don’t drink alcohol, nuff said.

      I currently smoke cigarettes and this is something that I am going to give up TOMORROW and see how it affects the fatigue. I assume that it will make a huge difference. A month ago I didn’t smoke for two days and I got really hyper so that would be great if when I quit a lot of the fatigue will go away. Is there anyone who has quit smoking post-GBS and has noticed their fatigue was greatly reduced?

      Lastly, exercise. Its good because it will boost your overall endurance. Jogging and running and stuff is really good to do. I have’t started exercising yet, but im going to start after I quit smoking. A few months ago I did some martial arts and the fatigue wasn’t as bad, but i stopped and the fatigue got worse again.

      So thats just my little contribution. A lot of it is common sense I guess but I just figured at least some of you guys might benefit. Anyway, anyone an ex-smoker here that quit and noticed an effect on your fatigue level? let me know please, much thanks. ANyway, I will catch you guys and gals later, take care and keep on keepin on!

    • Anonymous
      January 8, 2007 at 8:21 pm

      The fatigue factor seems to plague all of us. I totally agree with your ideas on ‘getting fit and eating well’. I’ve found on this site that many of us were very physically active before GBS and it makes it that much harder to accept when the fatigue factor bites you in the butt.
      Our bodies need all the TLC they can get. Light exercise, even if it’s done from a wheel chair helps both the body and the mind. Ditto on eating healthy.

      I’m not a smoker but listen to your own suggestions. Time to quit! It’s a new year. That’s only going to help you fight this thing a little better. If not for yourself, do it for your “life partner”. Chances are you are going to need her around as she needs you.

      Take care,


    • Anonymous
      January 8, 2007 at 9:12 pm

      JayDee you have great ideas and a good attitude. Eating healthy and watching portion control is the best advice all of us can start with in 2007.

      Smoking you know that is a no no and I stopped cold turkey. Going on a ventilator was extreme and so was being totally paralized! Have not had a ciggy for 14 months. Also you might see that the dizzy feelings go away when you quit. When you smoke you are putting chemicals into your body and as you come off them when you quit you might notice some nerveous energy. Don’t go back smoking, but replace that urge with something like exercise. Not eating, that is how many gain weight when they stop smoking. When I got GBS my Brother gave up smoking and he took up eating, agained 35 pounds. Now he has that to drop! He is not as young as you and has alot of bad eating habits to over come!

      [B]You know to consult a doctor before doing any exercise program. [/B]

      Start out slow and do exercises to benefit all areas of your body. Upper body, Lower body and Core, but don’t forget those tiny muscles all over your body! Stretches are good to start with and also range of motion. Remember to warm up before and cool down before you end your routine. That will help you to avoid injury! Make sure your program encludes things you like to do or you will not stick with it! While you are feeling fatigued you might want to walk rather than jog to start with. Change off your program to keep it interesting. Do weights three times a week and you are not out to become Mr. Universe or break any records YET. Just give those muscles their strenght back. Slowly increase your routine and later add some jogging while walking. Not too much! Listen to your body! You over do it or you just might find yourself getting a set back with your GBS. The other days walk and enclude something else you enjoy like Basketball or Washing the car! Give those muscles time to heal in between lifting weights and working on the machines if you go to a fitness club or gym. DO NOT LET THEM TELL YOU WHAT YOU NEED TO DO…..they will push you too hard if they do not understand GBS. Have a dog? Walk the dog, if not borrow a dog they are girl magnets! They cuter the pup the cuter the girls! Did I say that? LOL If you find that you get too tired doing land exercises try working out in a pool in an aqua aerobics class or do laps with a kick board. Don’t try to swim where their is a slight current, some of us have found that even the water coming back into the pool from the filter is enough to push us off balance at first and put us out in the deeper water. Floating devices give you some extra help to keep you from being fatigued quickly. Hot tubs are not recommended but a slightly heated therapy pool makes it easier if you are not moving quickly. Since you might find that your body is not able to regulate its body tempature and you will find yourself getting chilled.

      Please let us know how you are coming with your exercise program and I think we all can benefit from your youth and attitude on getting fit! Remember some of us will be exercising from our wheel chairs! But that is ok you can Sit and Be Fit too!

      You and others might benefit from this site that Liz passed on to me and it is my gift to others. Please pass it on for ideas and the correct way to do these exercises. [url][/url] Click on the “FITNESS” button and then on “Exercise” and pick out the ones you know you can do making sure you are not just working one area! Go for total fitness and improvement for 2007. Personal trainers are even better if you can find one that is familar with GBS.

      Remember GBS stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly!

    • Anonymous
      January 8, 2007 at 10:59 pm

      hmmmm, you really think the dizziness may go away when I quit? I was thinking that it might too, especially since its most likely connected with the fatigue. Actually, I’m starting to think the smoking is the main reason that I have maintained the fatigue. I appreciate the words of wisdom and motivation, thank you! I also wish all of you a great recovery. It is slow, but the wait is worth it. Take care everyone.

    • Anonymous
      January 8, 2007 at 11:13 pm

      It is the cause of much more than you realize. Smoking has a great effect on your blood vessels….dizziness could be cause by poor blood flow. Also could be a side effect of poor breathing….effecting the amount of oxygen you are getting into the blood. Headaches too! Fatigue is the big residual of GBS but can also be compromised by smoking. Short of breath and poor circulation all will result in fatigue. Besides until the mylin regenerates, your nerves are leaking energy and the muscles are not getting the right signals. So it can be a combo of things! My body needs 10 to 12 hours a day to just feel tired and not exhausted….any more than that starts to make me groggy so I figure that is too much! My naps last from 2 to 3 hours! No longer can I take a cat nap and be ready to party! Watch the sugar intake too that can wipe out your energy too! All goes back to making good choices!

    • Anonymous
      January 9, 2007 at 8:34 am

      I agree with the health food/exercise thing. I have been very disciplined with vitamins, food and my strength training. Not up to running yet, though. Maybe in spring I’ll start. Research your vitamins, dont get the local pharmacy stuff, like centrum. Invest in something good try or for absorbable vitamins. And good luck in quitting smoking. Your body will thank you.

    • Anonymous
      January 9, 2007 at 9:07 am

      Many have in the past discussed the terrible effect of residules in gbs/cidp.
      I am thankful for so many who are willing to share their thoughts, questions and ideas. Here is a summary from one of the news letters that includes more than my personal experience covers.
      Treatable causes of persistent fatigue in GBS/CIDP include a non-nourishing sleep pattern that can often be improved with intervention by a trained physician. Depression can also be a major cause of persistent fatigue and is often responsive to appropriate medical therapy with antidepressant medication. Persistent pain which can occasionally occur in patients with CIDP and GBS may also rob one of energy and appropriate treatment for the pain can be very helpful in reducing fatigue. Finally, gaining weight and getting out of shape are both common contributories fatigue in GBS/CIDP. Reconditioning exercises and weight loss may be of great help.

      There is much more availabe in the news letters and through other sources such as the personal experience of all the members that are so willing to share and help others as they work with there experience with fatigue.

      Keep up the good work.

    • Anonymous
      January 9, 2007 at 5:09 pm

      Hi, Welcome to the family Stevieboy! Fatigue is just one of those residuals that you have to put up, that’s what I am finding out since December 2006. I know, just by reading what others have experienced, that I don’t have much experience but it is really easy to overdo it in exercise and then pay for it the next day. There is a limit of exercise that your body can do and won’t do for you. Just be careful to not overdo any activities, it will catch you, LOL!
      Good luck in quit smoking and remember that we are here for you and proud of your accomplishment of quitting!!

    • Anonymous
      January 9, 2007 at 6:29 pm

      Welcome Stevieboy,

      You have a great attitude and that is so important with everything, including getting well.

      Just wanted to mention that although you said you are careful to get 7-9 hours sleep per night, you might need more. I find that I need at least 10-12 hours per night post GBS. It makes a huge difference in the fatigue and in the amount of residuals I have the next day. It’s worth trying – it can’t hurt you and could improve your quality of life.

      Best wishes,


    • Anonymous
      January 11, 2007 at 7:09 pm

      I have a question for people who go to the gym or exercise post GBS, does it help a lot with the fatigue? Do you find that over time the fatigue is going away or at least lessening?

    • Anonymous
      January 11, 2007 at 8:08 pm

      I make sure I don’t over do it at the gym, but I do have a regular routine that I follow. Whether the exercise is giving me a job and a purpose to life. Or it is giving me mental exercise and getting me around other people that are seaching for the same thing. I come out of there and I am relaxed. I feel like I have accomplished something. I come home and get something healthy to eat and I go lay down and rest. But I feel like I need rest not like I am so tired or fatigued from doing nothing. I have accomplished something that is going to help my body stay healthy until my demyelinating is totally reversed and healed. When I wake up I feel like I have slept well. The rest of that day I do my regular routine and feel great! If I was suffering from pain or sore muscles I would not quit going I would just make an adjustment to my routine. Listen to your body. Remember everyone is different! This keeps me in shape as far as my breathing, balance, range of motion, circulations, stamina and strenght is constantly increasing. I ramp up my routine to the next level or add something that is more interesting and keeps me moving and being active! Personally for me I can not imagine where I would be without exercise. I would probably be a couch potatoe. But remember you are talking to someone that requested a good lip reader to come into my ICU room and tell my Doctor I had a leg cramping up that it needed stretched by someone from PT. Just move it I told him! Jake moved my legs back and forth a few times and also my arms. I was satisfied and so where the muscles. They were not able to move on their own but after moving I did not have constant pain in that leg either! I really thank my Doctor for going to bat for me and listening to me! I hope this has inspired you to continue to be as active as your body will allow and don’t be afraid to ramp up your routine as you feel you are able. You can always back off a few steps to let your muscles catch up. Make sure you give your body time to heal between routines too. Drink plenty of water to flush the muscles and remember to warm up and cool down.

    • Anonymous
      January 14, 2007 at 5:11 pm

      Stevieboy do u really feel fatigue ? ๐Ÿ™‚

      You seem to be very active .
      I want to be that active to but cant push my self to it. Dont got the strenght for it. I always try to be positive , i go a psychologist once a week and have done it for 2 years now.

      Whenever i try to train and try to train hard (well its hard, for me now but not before GBS) i get muscle rupture or muscle inflammation.

      Belive me i like your attitude but not all of us got your strenght and maybe some of us are more fatigue then other even whit positive thinking and whitout cigarettes.

      I got 3 kids maybe that take alot of my strenght and house + i work 50% nowdays. You only got your girlfriend maybe thats a reason you dont feel fatigue as much as me.

    • Anonymous
      January 14, 2007 at 7:29 pm

      Hey Giorgio, I hope you get better. Contrary to what you believe I am actually not very active at all. So far I have been discussing the idea of exercise and things to do to prevent or help supress fatigue, but I am certainly not extremely active. In the past 4 months I have been to the doctors on three separate occasions thinking I had mono or the flu but it turned out I pushed myself too much and payed for it for days each time. I’m sure my fatigue is not as bad as some, but it’s there. Obviously the more you do on any given day, the worse your fatigue would be. My GBS wasn’t the most severe case but I do suffer some residuals. I know mine may not be as bad, but I am just hoping some of my imput may be helpful or even motivating to some. I hope everyone is doing well and continues to get better. Stay positive!

    • Anonymous
      January 15, 2007 at 7:32 am

      I have found that there is an intial boost from physical exercise but the fatigue is still present. In an article on Physical training and fatigue, fitness, and quality of life in Guillain-Barre Syndrome and CIDP in the 28 December 2004 volume of Neurology a 12 week study of bicycle exercise training in 20 patients with severe fatigue, 16 with relatively good recovery from GBS, and 4 with stable CIDP. Training seemed well tolerated, and self-reported fatigue scores decreased 20%.

    • Anonymous
      January 15, 2007 at 9:13 am

      I was doing great, until last thurs I went for colonoscopy. I have been mostly laying around since. Today I am at work. Ugh-I have to make it thru the day!!!!

    • Anonymous
      January 21, 2007 at 4:24 am

      i’m a bit older than you (!) but was very active and could go on and on and on pre-gbs. that stamina is now significantly diminished, and when i tried to do the gym thing and resume my pre-gbs activity levels, my body rebelled. i started feeling more stiffness, cramps, amd numbness to the point that i got scared of a recurrence (even though my md told me not to worry – but then, he was the one who did not detect my gbs symptoms until i insisted on a neurologist referral). i’ve backed off and am taking it one day at a time. although i don’t smoke, i find a glass of wine relieves the stress and helps me enjoy my meal and sleep better. easy to get to dependent on such, for sure.

      in summary, i think you’re doing great, and even though young bodies can recover better and faster, and each case is unique – still, just LISTEN to your body and don’t overdo it, like i tend(ed) to.
      54 and learning,
      8+ weeks gbs 7/05

    • Anonymous
      January 21, 2007 at 5:26 pm

      This seems to be the one issue that I still cannot accept. I can deal with wearing AFOs to walk, a cane, using my powerchair when I am tired, giving up most of my sports, etc, but I hate this feeling of feeling so tired all of the time. I am sick of taking naps on a beautiful day, especially 3 hour naps on some days, & after being sick so long (almost 5 years now), it is getting harder & harder to remember what it felt like to feel normal. I am 53, but my 55 year old husband recently retired, & I now realize how much energy a healthy person has. I am tired of explaining how tired I am all of the time!

    • Anonymous
      January 21, 2007 at 5:50 pm

      Hi Guys: I try to do 30 minutes on my exercise bike everyday, though some days I just can’t make it. It is a hard day today-slept for two hours and am still tired this afternoon. I find the exercise feels great emotionally, but doesn’t help my fatigue much and can cause great pain in my legs. Still I feel the need to do it and, despite the pain, it feels that I am helping my body stay in better shape. I gained 40 lbs after I got out of rehab and have lost 7 since starting the biking. It is a daily battle to do it but at least I battle. I like your attitude Stevieboy and wish you the best. Jeff

    • Anonymous
      January 22, 2007 at 5:01 am


      Here is another post I can relate to sooooo much……………”I hate the feeling of being tired all the time”…………….

      Amen, to that! :rolleyes: or ๐Ÿ™


    • Anonymous
      January 22, 2007 at 10:34 am

      Pam said it for me! I am weary of being tired and can no longer remember what “normal” felt like. I just had my post 12 year anniversary . . .

      When I regularily practice yoga I feel better because I move around with greater ease. But at times, I even over-do that. I just can’t find a consistency from one day to the next in what I can do ๐Ÿ™ In reading the various threads this seems to be a fairly common “nature of the beast” ๐Ÿ˜ฎ

    • Anonymous
      January 22, 2007 at 2:31 pm

      I do mild exercises every day and I train on a mini-bicycle for five minutes a day. If I try to do more I will only get the cramps. I think the exercise does help me from being even worse than I am now, but nevertheless I am always tired and never pain-free. I too am tired of always being tired:mad:.

    • Anonymous
      January 22, 2007 at 8:10 pm

      I think that we all agree fatigue is something we all complain about. Some of us got too confident and pushed too hard only to have their body remind them to slow down. Remember to exercise a hour day you can break it up into segments if necessary 5 minutes an hour for twelve hours adds up to an hour of exercise. We all lhave to learn to pace ourselves and only do what you are capable….if at first that is only 5 steps or to walk across the room…that is exercise that is the foundation you build from. If you feel pain…immediately stop! Eating healthy does not mean just eat from one of the food groups it means to get a well balanced diet from each food group. Same with exercise. I agree with Judi the Yoga is harder than it looks, but the benefits are a well balanced workout! Walking is the most balanced workout for the total body. It can be done inplace, outdoors or inside the mall. Most burn out because they push too hard….they take the enjoyment out of exercise. I started doing exercises in bed in the hospital then gradually moved to the floor and parallel bars for support. Then at home for practical rehab and then off to more out of home rehab…walking up the street without my walker….only walked to a friends but I was able to do that with a big smile on my face…..she was layed up with a ankle injury that required surgery! I walked up to cheer her up. We yelled to each other thru an open front door. I could not make it up her steps and walk and up the steps to the livingroom and she would not come down to the front door! but what a brag for my hubby when he come home! Then off to rehab for PT and OT where I worked out on the bed, wall, chair and in the pool. Now I have no restrictions on me but still use common sense to build up my body slowly. 14 months after the onset. I still have the fatigue and I do take long naps. I also had trouble with my nights and days getting mixed up but that is now traveling back to the normal routines. I worked slowly to set up a schedule for the week and try to do the same thing each day so I don’t get over whelmed. I do not have as many responsibilities and give many on this forum credit for how they have managed their lives. There is just not one answer that will work for everyone. I am surprised when I have a busy day that could not be helped because of tests and appointments. Sometimes it makes me go sit down in the evening and forget about housework. Sometimes it reminds me to take the next day slowly. Some times it knocks me off my feet a few days later. I just have learned to back off and not do what I think I can do! I do what I know I can do! Good luck with figuring out what you are able to do today….tomorrow is another day!

    • Anonymous
      January 23, 2007 at 8:15 pm

      Dear Lady Kit

      I just wanted to say that I think your post is brilliant.

      This is doubtless going to sound really weird, but I amost welcome the fatigue at times. Yes, I did say that. I think it is because I start off feeling tired and wrecked and slowly realise that it’s not oridinary tiredness but it is that weird fatigue coming on. I get scared when I feel tired a lot of the time but, when that strange fatigue sets in, I know what it is, I know I have one choice – lie down, – cos there is no other choice. The relief that comes after lying down is actually peculiar – my legs twitch etc and that tells me that things are happening as they usually do and I will be lying down for X number of hours and I may ‘let it be’ as I have little say in the matter. Anything that wants doing is going to have to wait. I suspect that I have been very lucky in this regard.

      Whatever I might have planned to do, I can forget it cos it is not going to happen. The scary moments are when I think of the ‘what ifs’.

      I talk to much so

      God bless

    • Anonymous
      January 24, 2007 at 12:11 pm

      Greetings All Fatigued People!

      I think the best help I get with fatigue is venting about it here. And being reminded by all of us to take it easy and rest a lot! I get depressed when I keep going to bed at 7pm after working all day, but I try to remind myself I am lucky to be able to do this. For the most part, I am happy working but wish I could control my hours during rough weeks. Here’s hoping I’ll make it to get a few groceries after work today… if not, I will get them when I get them period

    • Anonymous
      January 24, 2007 at 10:28 pm


      I have to agree with you. You’ll get your groceries – when you get them, and not before.

      God bless

    • Anonymous
      January 25, 2007 at 7:42 am


      In MY case, it doesn’t matter how much rest or sleep (in particular), I get ……..{it can be 4 hours or 10 hours} ………I STILL feel just as tired as I was…. before I slept! This worries me a little. I just don’t have the energy at all!! I need to see what my Dr. says, I guess. Thank you, Mr. GBS ๐Ÿ˜ก


    • Anonymous
      January 25, 2007 at 9:17 am


      then 10 hours is not enough. i slept 20 hours at the beginning. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 25, 2007 at 5:37 pm

      I know, I know, I did another one of my disappearing acts. Things have been crazy for months now! I just passed my nine year anniversary and thought I should get my caboose back on here. I have a new therapist (sliding scale) and (SHOCK) actually KNOWS A GBS PATIENT!!! Someone who had it as badly as I did. Perhaps worse, not sure.

      Anyway getting on to the matter at hand:

      Fatigue is the major thing I struggle. For those of you who don’t know me (I diseappear for months at a time… short attention span) I got GBS when I was 19. Went back to school gung-ho, deep denial, PTSD big time. After a lot of time in therapy, I worked through most of the post traumatic stress, though I’m still very jumpy around loud noises. But being in your early (and then mid) 20s it is very confusing to be so exhausted all the time. I imagine it’s equally bad when you’re trying to be a parent and a spouse, but all my friends were so darned active all the time. Let’s go out, let’s do this. I was fighting to even keep a half-time job. I ended up jumping around in various professions trying to find something I could do part-time and not finding one. Basically, I had energy to work or make sure I eat well/exercise. I couldn’t do both, no matter how hard I tried. I even tried some of those exclusion diets to help with fatigue. No fun, and all the energy I got from the diet went into worrying about what I could eat.

      Annnyyywaaay, most of you have heard this tirade before so I’ll abbreviate: After getting suicidal two years ago, I went back into therapy to learn that I wasn’t a worthless human being for not being able to work. (Everyone in my family works as much as they can, and then some. Doesn’t matter if you work at McDonald’s so long as you work long and hard.) This past April, a small miracle occurred and I got through my disability case in under a year and a half (including appealing and getting a hearing). So I’m on disability and arguing with Medicare about the meds I take for extra energy but it’s lovely to have some money coming in, however little. And I applied for some monies and got financial aid from the state/fed gov’t to go back to school. I’m currently studying to take the CPA exam, which should be in about a year since I also have a take a bunch of boring business classes. They’re even giving me $400 a month to help me survive!

      Still, every day fatigue is something I wrestle with. I have to correct myself when I say, “I’d do it but I’m lazy.” Because usually I’m just denigrating myself. I never know how I’ll feel the next day. I’m currently struggling to fit in exercise without killing myself. I’m taking a twice weekly yoga class (I leave for it in an hour and a half, in fact) but otherwise every time I try to do something I try too hard and set myself back. Currently struggling to set up a 20 minute walk each day. Some days, I can run more than one errand. Some days, I still don’t leave the house. It hasn’t really gotten better over the years (well, except for when I discovered Provigil which stopped me having to take a nap every day). But how I cope with it is slowly getting better. Very slowly.

      The trick, I think, is a good support system that will call you on being the lil overachiever we all try to be still. My mom will often run to the grocery store for me if I’m too tired rather than let me overdo it. And I’m with a fabulous man now (who I’m marrying in a year and a half!!!!) who is incredibly understanding and loving. He’ll come home from a 9 hour workday and, if he has the energy and I don’t, he’ll attempt (emphasis on attempt, but ya gotta love him!) to prepare food for us because he knows I worry about money. He calls me on trying to do too much. He holds me when I have one of my meltdowns where I rant against the world about how unfair it all is, how petrified I am to not be able to do anything to help out financially (he basically supports us) and he reminds me that as far as he’s concerned, I never have to work another day in my life. And I sniffle and thank him and tell him I’m not quite ready to accept that scenario but I appreciate it. And then we hug and go back to our quiet little life of TV, Xbox 360, game nights and trying not to order too much takeout.

      I guess my point is that so many newcomers here (over my nine years) post and ask if the fatigue gets better and it breaks my heart to tell them, not really. At least they’ve discovered a few helpful meds over the last few years, which can make quite a difference. But what’s that cheesy motto (why is it the cheesy ones always end up being the most apt???) “Grant me the serenity to change what I cannot accept and accept what I cannot change.” Personally, I am such a type-a personality, I’m horrible at that last part. But slowly I’m chipping away at shifting my expectations. I have to remember that everyone has different levels and I can’t keep comparing myself to others (which is soooooooooooo hard in yoga class, by the way) and that just because my life is harder now, my world is a tad smaller now, does not take away from its brightness. Granted, it’s certainly helped finding a supportive, loving man who does his best to understand my tiredness (though he still asks if I want to take a nap when I’m tired and I have to explain the difference between tired and sleepy).

      Anyway I’m officially rambling (for you new folks, this is a medium-sized post for me… I’m wordy) so I’ll finish this post now.


    • Anonymous
      March 19, 2007 at 6:45 pm


      I am going to respond to your post, which previously, I was going to get on the board to put my experience out to everyone. Who knows, it may help someone else.

      I contracted GBS back about 120806. Hospital with blood plasma, then short physical therapy stay and then home. I was not paralyzed in any way, however, I did lose control of my legs, had that lump in my throat and I cannot forget the light headed feeling. As matter of fact, I did not realize it until recently, but many things people mention to me about the hospital, I have no recollection!!!

      When my family began researching GBS and I did also when well enough, we kept reading about duration of recovery, couple of months, a year, two years.
      Never gave that much thought because my case did not seem that severe and so I assumed recovery would be fast. Was I wrong!!!

      When I first came home from hospital, I took a few more weeks to recoup and by the time I had a doctor appointment in beginning of February I was feeling really good. Here we are in March, and for the past several weeks I have been experiencing the light headed feeling, a very minor tingling or numbness in the feet and fingers and I suppose this is either called a setback or a normal GBS reality that there will be reoccurences.

      I need to tell this part of the story. When I first went to rehab, I was fortunate in that one of the medical secretary’s who worked on the floor made sure I got good attention. I happened to speak with her on the phone last week since she called to see how I was doing. She made a comment that I did not have GBS. When I asked why, she stated “you recovered too fast, normally people are in rehab much longer.”

      That got me to thinking, there was no question by the medical people that I had GBS. My recovery was fast; but, the real issue is the word “recovery”.
      I am starting to realize that those long periods of recovery I keep reading about are very real and people should expect the unexpected. Certainly, I would conclude my existing symptoms are nothing like what they were when GBS was contracted, but, nonetheless, very annoying.

      I have not suggestions or recommendations, but what I have done to help myself with GBS and there are 3:

      1. Get enough rest and sleep. Exercise, but not to a point where you wear yourself down.
      2. When you go to your doctor, you tell him what is going on and do it with conviction. Many doctors have treated very few cases of GBS. As a note,
      when I went to my doctor office, one of the other doctor’s with whom I chat once in a while stated to me, “you have GBS, huh?, I recall I had a patient four years ago with the same thing.” Thus, this made me think, you have got to be kidding, you had one patient in the last four years!!!!
      3. I did quite a bit of research on the nerves and nervous system and did confirm with a doctor that there is one vitamin that is known to address the health of the nervous system. VITAMIN B12. And, it should be the sublingual type. I take several a day, they taste good and I have to beleive they work.
      But, again, this is what I do. If you want to consider it, first ask your doctor if he or she has any problem with B12. As most of you probably know already, most doctors are anti-vitamin.

      Well, anyhow, that is my story.

      tonya 030

    • Anonymous
      March 20, 2007 at 8:37 pm

      Dear Seattle girl

      Good to see you posting.

      Just want to clarify something. You are with a man who holds you when you hit meltdown and rant against the world? Has he got any brothers?!!!!

      I’m glad your disability case came through.

      You reminded me of when I did that “I feel guilty because I am lazy” thing. But – you’re not lazy, you just think you are. There’s a big difference. Mind you, it can be hard to realise that and to accept it. I well remember feeling that way. It didn’t encourage me to move or do anything – I would lie there and feel guilty. Now, if I get fatigued, I lie there. No guilt. Some of the guilt has disappeared perhaps because hubby’s left and I no longer hear “if you’re tired, go to bed” – I can lie on my couch for as long as needs be. And when I can get up, if I am then tired, I CAN go to bed!

      Anyway, I soo understand about the – ‘I’m not sleepy-tired, my body is fatigued and doesn’t feel able to move around.’ I can understand where your man is coming from – it must be hard to understand GBS fatigue when you haven’t experienced it.

      He sounds like a genuine guy who loves you. Him saying you don’t ‘have to’ work another day well, I would take that literally – you don’t ‘have to’ simply to avoid starvation or to keep a roof over your head. It sounds like he is offering you a security blanket. Even without GBS, that’s a grand thing to be offered. Mind you, considering my past, I’d want it in writing!

      But regardless of all that – congratulations to you. To have found love is the best of all.

      Oh yes, being a so-called worthless human being has absolutely nothing to do with one’s ability or otherwise to work in paid employment.

      I’ve never met an ugly child or a worthless human being.

      God bless

    • Anonymous
      March 20, 2007 at 8:53 pm


      When medical people used the word ‘recovered’ it does not seem to mean what lay people might think it does. I found that one out! When a person recovers from GBS, it is no longer attacking them but that doesn’t mean that it hasn’t left its calling card.

      After all, if you broke your leg, had it in plaster and were eventually able to walk again – you would have recovered from the broken leg. That you might not be able to walk as well as you once did, gpt aches and pains, limped etc would not detract from the medical fact that you had ‘recovered’ from the broken leg.

      Again, say you had abdominal surgery and recovered from it – meaning, the outcome was a success. Thus, you recovered. The fact that the majority of people would later suffer pain etc because of adhesions of scar tissue would not change the ‘recovered’ diagnosis. It’s a terminology thing, that’s all.

      I had an operation a while ago and I ‘recovered’ (for which I am glad). That the majority of people who have had it will then go on to have adhesions, pain and discomfort, does not change the scenario that I ‘recovered’ from the operation.

      Oh, as to taking Vitamin B12 I would caution you to check into it before embarking on it. I know little about vitamins but understand that the B vitamins work best together, not in isolation. And I would also say that – don’t forget, when you take supplements you are taking a drug. A constant high dose could prove detrimental – as with any other drug. That might be why doctors are anti-vitamin, though I did not know that they were.

      Some vitamins show disease-fighting properties but, taken in excess, can actually increase the incidence of the disease they fight! I would advocate moderation,

      God bless

    • Anonymous
      March 21, 2007 at 10:37 pm

      Abby, I appreciate your reamblings on as you called it. I can relate to things you have said and refused to say things like that and hardly even let the thought go thru my head. When I first started coming to this forum , about the time it was started years ago, I would not post, because it seemed to be that this forum did not want anyone to tell the truth about how they really felt, and about all the residuals that goes with GBS. This forum was to be for support and encouragement only and it did not want anyone talking about their residuals as I stated earlier. I know there must be some on here who remember the beginnings here and what they did and didn’t want posted. So, I took it that I was the only one with residuals that was very crippling and did not post much. Yeah, I have changed names about 2 times now as it be a long time between my posts and then I would lose my password, or the forum would just not let me log-in is the reason I look like a new poster. The truth is that this all the posts I have under this name and under this password. ๐Ÿ™‚ To me, I think it is better to know what may lay ahead and therefore is not such a shocker when we don’t make a full recovery. Yeah, I can say that now; as I see others posting who are just like me and will probably never make a “full recovery”…full as in my terms. lol ๐Ÿ™‚ Talk more….sometime when I have more energy. ๐Ÿ™

    • Anonymous
      March 31, 2007 at 10:33 pm

      I’m really feeling like this is in me and here to stay. I have read so many posts from people that have been in the shape I’m in for many years. For some stupid reason I thought I’d be different , I was going to beat this and by working harder to beat it was the way. I have been feeling pretty good for about a week and did several things I wasn’t able to do in the past few months. I was picking up the gym activites , the yard work, house work….and then as most of you know, it caught up with me. I have felt like the walking dead today and even the slightest activity almost makes me pass out or feel like my legs are going to collapse. I helped put fresh sheets on the bed a few minuites ago and almost couldn’t put my pillow in it’s case. We are having my birthday supper tomorrow night and I’m supposed to cook fajitas , I hope there is enough energy to do this without being a party pooper. I’m getting a IVIG Monday and I hope it helps. I’ve heard to take it easy and read that over and over. I have a very dear friend on this forum that I should have payed more attention to. If I had maybe this wouldn’t be hitting me so hard. My friend has residuals and they are really tough, it hurts so bad to know this and not be able to help especially when I feel so good. Then the very next day I feel the same way as my friend. I’m a infant in this stage and not smart enough to pay attention when the experienced ones are trying to teach me even if they don’t know they are teaching. It reminds me of when I was growing up and not listening to my parents and now I see they were right and only telling me for my own good. I want to listen and absorb instead of just hearing so bad. Oh well what will be will be! God grant me the serinity to accept the things I can not change , the courage to change the things I can , the wisdom to know the difference.

    • Anonymous
      April 1, 2007 at 1:17 am

      [B]Tim don’t be too hard on yourself[/B]…we all have had the same experience. You have to have the experience before we can tell you what you have done. We all have pushed our bodies for some reason…..some of us have pushed more than other. You can not go thru life not knowing what and what you can not do. You have to test your ability. Now that you have had this setback you know to give up a few things each day and see what works for you. For others it can be a busy vacation for a few weeks. Others it was a busy weekend that zapped our energy. Just sitting watching a sports event on tv verses a slow movie. Also you have to take in consideration what did you do the day before and the day after. I keep a Journal…it started out to be on my calendar and now is my daily planner with larger spaces for my notes. Wednesday and Thursday I had doctor appointments and the days before I knew not to stay at the mall and the gym too long. Those days I actually tried to conserve energy. I cut back on all activities…I did them but not for as long of a period as usual. Then without thinking the weekend was coming up and I squeezed grocery shopping and a trip to the mall for something on sale. I felt fine till the weekend and then the fatigue showed up. I looked back at my schedule for that week and I knew it was too much. Next week I had about the same number of appointsments and also needed some things from the store. I spread things more evenly over that week and it did not take as big of a hold on my energy level. This week coming up I have a Dentist appointment and have to take my car for repairs. I will have to wait for the car to get fixed…something that does zap my energy is sitting and being over stimulated by crowds of people. I am a people watcher! I don’t get to relax but I have learned to watch my schedule and make appointments if I see that one is starting to fill up. I shop for groceries for a longer period of time….rather than for one weeks worth I extend it to 10 days worth of groceries. I make a big circle and do things in one area of town rather than run to the east side and then back to the west side….one day I do the east side chores…usually when I am there or an appointment anyways. I might wait and go toward the west side of town in a few days. Doing things two days in a row don’t sit well with my GBS. I realize that some have to try and go to work or take care of another family member but by budgeting your time wisely you body will benefit. My rule now is I don’t let anyone talk me into something that might wear me out! I ask for help if I just need a few things from the store. I don’t cook everyone of my meals…..I sometimes cook extra and have left overs. I am sure you will be very skilled at working out your own schedule and review your calendar to fit your new lifestyle. It does get better, but it takes time! Your young and your head goes a million miles an hour. Mine does too but I know this old body can not always listen to the head or brain. I feel like I am in a video game that some one took a wrong turn and missed an energy pill! I have to go bad and look for other routes. Enjoy your game you are writing the rules. I have a friend that had GBS and he was young and played sports….after the GBS he continued to do what he liked, but in another way….he become a Coach and let the kids use up their energy. I am volunteering my time now and am hoping that will keep up my skills and get me back into a routine so soon I can go back to class for a degree or find a job that I will be able to do. I am into this for 17 months now and see changes all the time. Some are mile stones and some are tiny but they are just as important to me as the milestones! Stay possitive! Believe in yourself! ๐Ÿ˜Ž

    • Anonymous
      April 1, 2007 at 5:10 pm

      Dear Tim, Kit is right, try not to be too hard on yourself, although I know we are sometimes. Those days when we feel so awful are just so debilitating emotionally. I think for many of us, it is a vicious circle, having some wonderful days or weeks, feeling like we can conquor the world, and in the back of our minds knowing we will at some point feel those residuals again – somehow we are never quite prepared for them though. I always say that dealing with post GBS and CIDP is very much a mind game, and it doesnt matter how much we try to prepare ourselves for the inevitable down, or worse times, our mind, being the powerful thing that it is, wont quite let us do that. I hope that the IVIg will give you enough energy and strength to have a huuuuuge party with dancing on your birthday! ๐Ÿ˜Ž ๐Ÿ™‚

    • Anonymous
      April 2, 2007 at 6:55 am

      Tim, listen to Ali and Kit, they have said it so well. Remember what you said to me about having faith when I was having a hard time dealing with my disability interview? Now I will say it to you: have faith! You will feel better (about yourself) if you will give yourself a little time to recover and learn. Sometimes having faith means believing you will regain the faith you have lost temporarily, if you know what I mean. That’s a hard nut to crack, I know…

      Your post tells me you may be struggling, but you are definitely smart and strong enough to emerge victorious. Don’t worry if you fall now and again, as long as you get up that’s okay!:)

    • Anonymous
      April 2, 2007 at 1:51 pm


      Even after 10 years, I still go through denial occassionally. Please keep reading and posting here. I think this is what helps keep me sane sometimes!

    • April 2, 2007 at 4:20 pm

      I am 5 years post this time. I had GBS in 1989 and went on to full time employment after 2 years of recovery. I had energy and even went back to ballroom dancing. I was 49 then. Now I will be 67 this month and am fatigued most of the time. I do water aerobics twice a week and keep my house up since I am single and live alone. I sleep 10 hours every night. I mowed the grass the last few years and wonder if I can do it this year. I ache a lot especially at night in my legs. Steps bother me. If I go up a flight of steps, I feel tired and have to take them slowly. I guess it is a combination of GBS and aging but I see others older than me doing a lot better. I am thankful I can do the things I do but wonder why I did so much better after the first recovery. By the way, it wasn’t really the first recovery. I had GBS also when I was 19 and recovered from it. I have worked all my life as a secretary and retired in 2002 when I got the latest GBS attack. I am so glad I don’t have to work anymore. It is great to get up when you feel like it and do what you want to do during the day. I don’t take meds except for Advil when I am aching a lot.