Diet, Exercise and GBS

    • February 9, 2008 at 1:18 am

      I have enjoyed the inspirational stories on this forum so I wanted to share mine as well.
      I am a male in my mid 40’s who just finished IVIG treatment for GBS, and I’m on the mend.

      In late August I was sick of this overweight stuff and started the South Beach diet (again). This time I decided to walk on the treadmill 50 mins. a night so I would have something invested in the diet. Walking progressed to jogging and I decided I would shoot for a 5k on Thanksgiving day, it was one of those “life achievement” events I would attempt. I had lost 25 pounds by Thanksgiving and was able to run 3 miles per day, 6 days a week so I was prepared. I ran the 5k in a reasonable time and felt compelled to push myself even farther over the remainder of the winter (read on to see how that went awry).
      I then returned to my 3 mile a day routine and did pretty well the next week, but by the first week of Dec. I was barely making 3 miles a few times a week. I track every workout and include notes on how I feel, which turned out to be helpful for my doctor. I pushed on, but by Christmas I was struggling to make 2 miles and all my daily notes kept saying things like “tired legs” or “heavy legs”. I continued, figuring I was just burning muscle instead of fat since I had now lost 35 lbs. since August.
      Each week I grew weaker and I started experiencing drop foot and walking stairs was becoming difficult. I had no numbness in my legs and did not notice any issues with my hands. I tried Protein shakes and a calorie increase and it “seemed” to help, but still by Jan. 6th I had to stop running.
      I consulted other runners and everyone said one of two things: 1) take a week or two off or 2) run more miles and it will pass. Running more miles was impossible since I couldn’t push my legs, so I switched to an upper body workout.
      I pushed on and noticed some other minor body changes internally, but didn’t really pay them much notice, since I was still dieting and also working out
      lightly. I did notice walking was now a shuffle and my calves were hurting since I now couldn’t walk normally. Late in January My wife no longer allowed this to continue and literally sent me to a doctor.
      I gave him my running journal and he did a normal physical and blood test. I still didn’t have any numbness or hand issues (so I thought). I couldn’t rise from a crouch, I couldn’t walk on my heals and I couldn’t hold my feet up to walk normally. My Dr. scheduled an MRI for the following week but didn’t seem overly concerned, since I was in pretty good spirits about this odd phenomenon.
      The blood tests showed no vitamin deficiency or abnormalities, and when the MRI on my back showed no pinched or trapped nerve it became a major issue. By this time (late Jan) I was rapidly growing weaker and having issues internally. I had stopped exercising and started reading on the Internet, which led to much anxiety regarding my possible infliction. GBS shares many symptoms with several untreatable diseases, that are very, very scary.

      The day my Dr. informed me of my MRI results was nearly 2 weeks after my first Dr. visit and he couldn’t get me in to see a specialist for another 7 days, which I knew would be too late, so I checked myself into the hospital.
      This move forced a Neurlogist to evaluate me and she quickly made a 90% prediction of GBS. We talked, reviewed my notes and took a retrospective look of my situation.
      The next morning an EMG exam proved her initial diagnosis correct and I started my 5 day IVIG procedure (remaining in the hospital for 4 days). My hands were very week, but I just didn’t notice until a few days prior, and my reflexes were nearly non existent. It was getting pretty scary the 5 days prior to checking into the hospital as I grew weaker and weaker.

      Somewhere in late November I contracted GBS, with no apparent trigger (no flu shot, no flu, no cold or any sickness). I had suffered thru 6-8 weeks of GBS which I mistakenly thought was “fatigued muscles” due to my first ever running routine. If I had not been exercising I would have noticed this drastic change in my body, but since I had never run before it slipped under my radar.

      I’m now just a few days removed from my last treatment and I can’t believe how much better I feel. I can walk normally, crouch and rise like its nothing and walk stairs like a youngster. One of the IVIG treatments created some side effects (very severe headache, nausea and fever), but after it cleared I was fine.
      My Neurologist said I can begin walking in a week and work on rebuilding my stamina. It was such a traumatic experience to my legs that I suspect it will take many, many weeks to get back to my previous level of jogging.

      I can’t believe how quickly things have turned around since starting the IVIG treatment; 7 days from a hospital visit, lots of rest and I’m nearly good as new.

    • Anonymous
      February 9, 2008 at 4:50 pm

      I am glad you took the time to post to this forum. Your story might help others to not put off questions about their bodies. Checking yourself into the ER was a giant step that gets the medical attention you need. I hate waiting for a specialist. Your experience with GBS was more like my friend Son and my friend Father….they got it from the waist down and come back quickly. Rehab helped them get back into exercising regularly. It definately is a wake up call. I hope your sucess continues and that your story helps others to listen to their bodies. We all are very lucky that we have spouses that push us into going to the doctors. Our caregivers are very important to this group! Welcome and please keep posting about your recovery.

      While in the hospital I heard of a Bride that was at her rehearsal dinner and colapsed with GBS. She had it from the waist down. A Neuro in the ER worked quickly with her as her body started to fail. Her groom made arrangements for her to be married in the ER that night because they did not know how the outcome would be. They video taped the quick ceramony and showed it too all the people that come from all around the country for her wedding the next day. Two weeks later she put on her wedding gown and got married in a church. She slowly walked down the isle but she got to wear her gown!

    • April 22, 2008 at 9:26 pm

      Unfortunatly my recovery did not last. I was cleared by my Dr’s to resume my running routine 3 weeks after finishing IVIG treatment. I was clipping along at a wonderful pace and worked my way up to 3.5 miles a day by mid March. Then I started having minor muscle pulls (so I thought). I rested, and restarted, which aggravated other leg muscles. I slowed then one day I could barely walk at a rapid pace and I knew I had relapsed. The next day I had tingling in my feet a one hand. 3 days later I was at the Dr. and he confirmed it was starting again.
      A week after that and I was worse than before, I could barely walk, I could not rise from a crouch and my hands were cramping badly.
      I just finished my 5 days of IVIG (2nd time in 2.5 months). I have again suffered the migrane headache after the 3rd treatement, but all-in-all I’m doing ok.
      My Neurologist is not going to let me exercise very much for quite some time. She is going to monitor me with EMG tests and just keep my running routine at a minimum. Her thought is my entire nerve system was not fully recovered and I shocked it again, causing the rapid deterioration.

    • Anonymous
      April 23, 2008 at 12:58 am

      You stated that your doc is not going to let you exercise much and that your running routine is to be kept to a minimum 😮 It sounds as tho your body is trying to tell you that this is to much to soon! I only know this “stuff” from a GBS standpoint but you may be doing much more harm than good. Please check out the other threads on exercise and recovery. I wish you well.

    • Anonymous
      April 23, 2008 at 11:04 am

      Hi
      I’m Eric,46 CIDP dx last Sept, affected since a tetanus Booster late May.

      Been through 5 day load of IvIg, and two subsequent monthly treatments- keeps getting worse, SSDI claim pending.

      First- is ANY exercise adviseable? I know our friend, here, is aMarathon Man, but, my experience is if I doo too much on any day, I relapse? (Yet, my workaholic, project driven personality is making me psychotic!) Anyway, I would urge our “runner” to tone it way down,, and then increase in VERY slight increments, noticing the changes, week by week? (For me, changinmg a tire or riding the Mower or walki9ng Waklmart seems to be my limit- for a former Rugby/Football Player/ Bike enthisiast, this is gard to swallow!)

      Second, unrelated- most everyone I’ve come in contact w, who suffers from either of these “cruds”, has had a vaccine just prior to onse, AND, I’m readuing some of you have had some success in Legal Recourse? I’m not a sue happy person, but, if SSA doesn’t come through, I’m in a bad way- has anyione the name of a Good Lawyer, in VA who isfamiliar w the GBS-CIDP/Vaccine relationship? This is something I might well be forced to pursue.

      Third- OK, Gamma Globulin’s NOT working- Steroids are losing their effectiveness, and the next step, I’m told is immunosuppressents, like CellCept or imuran, or Cyclospoirin? Has anybody heard or had success qw anytghing more Natural, Homeopathic or alternative? At this point my perscriptions have their own remedial Prescriptions?

      Smilin in the Rain,

      Eric

    • Anonymous
      May 13, 2008 at 9:28 pm

      Eric,
      I had GBS twice – twenty years apart. I have gone the natural route both times. The first time I had the best holistic doctor on the East Coast in Shillington, PA. Suzanne Sommers writes about him in one of her books and meantioned him on tv. But he has changed since I have gone to him so I would no longer recommend him. I am currently reading an excellent book on autoimmune diseases. What I suggest is the following:
      See what you are eating that is loading down your body. Give up sugars and starches to begin with. I did this for the last seven months and feel great – more energy, no headaches, no hunger attacks. You have to take the load off of your body so it can heal. I am also eating right for my blood type. I have cut out wheat, potatoes, corn, peanuts. (That is because I am an O) I eat lots of protein, red meat, chicken, turkey, eggs, shrimp and then a salad. My blood pressure is back to normal. I take lots of vitamins. If you decide to go down t his path, email me and I shall personalize what you can do. I wish we didn’t have most of those pharmaceuticals because they are a quick fix with side effects. If we only had antibiotics, then people would be forced to go the natural route – eating correctly and giving the body what it needs to mend itself.
      My philosophy is to let the body repair and don’t push it as far as exercise goes. I did not physical therapy even though I sould not stand for over four months. It did not do any damage. IN fact, I do not have the pain that most GBSers have. I wonder if that has anything to do with it.
      PS…..I used to love to go to Rugby games and their infamous parties – no I was never a muffin girl……but I do know the words to their songs. They have to have THE best parties.

    • July 27, 2008 at 5:52 pm

      Well, I’m going to have to remove this thread from the Success Stories section.
      I have been unable to shake GBS and have returned for my 5th IVIG session. They have also started me on Prednisone. Its not known if I have GBS or CIDP, and I’m awaiting an appointment with a Nero-Muscular specialist.
      I never returned to exercise after the first time (when I thought I was 100%).
      I can only go 3-4 weeks between treatments and by that time I can barely walk or use my hands.
      Its been a frustrating 9 month battle with no end in sight.

    • Anonymous
      July 27, 2008 at 7:09 pm

      Oh do I have much joy for you. I sure hope my story lands with a happier ending too. So far I have been in the limbo phase with many doctors and seeing a specialist at Duke soon. And I pray they can fix me! Your story has given me some hope! Thanks for sharing.

    • Anonymous
      July 27, 2008 at 11:20 pm

      Hello again ZBRD. I am glad you returned to give us an update. Everyone is different but we have have many things in common. I am sorry you have to go thru this setback and I hope you learn much from the experience. I think your Doctor should have supplied you with more information too. If you took rehab they should have adviced you to listen to your body and don’t over do it. I think you did too much too soon too! I am 2.5 years after my onset and I am not able to walk very far. I am still just getting back some of the basic abilities that I had lost. I am not able to get up into the standing position in the middle of the room without crawling over to furniture. And then that was a struggle. Just in the last 6 months my upper body strenght has come back. Something clicked and it was like a light switch had been flipped on! Now just this week I am able to reach up the middle of my back with one arm and reach down with the other hand to adjust clothing. I had been using the silly rubber bands to try and increase that for years….now it is back to where I can work more and continue to see good results. They told it that you Get Better Slowly and I thought I would beat all records. But I took a steady approach to exercise and only did what I think I could do. If I felt over taxed I backed it down a little and advanced slowly. If there was something I could not do, I did not forget about it I just kept testing myself to see if there was any change. I worked to get every tiny muscle strenghtened and worked on range of motion and breathing and balance. It did come back, but we did not set any record! Hopefully you will find out what works for your treatment and what your body can handle without having a set back. Have they thought about using PP instead of the IVIG? The IVIG did not work for me and they then wiped all that out with the Plasma Exchange. Steriods do not work with GBS so that will be a good indication if you have GBS or the cronic form called CIDP. Don’t give up and keep the communications open with your Neuro. Stretches will keep those ligaments and tendons and muscles moving…that is all you need to do for now. Let the nerves heal. The sheath of the nerve heels very slowly. I have been told only 1mm per day. For a guy that is 6 feet tall that is alot of months. Keep possitive and keep in touch!

    • July 30, 2008 at 1:46 pm

      Thanks LadyKITUSA, I like the part where you say a light switch clicks on and you felt noticeably better, I’m focusing on that wonderful time to come :-).

      My Dr.’s did not feel the return to exercise after first IVIG had any negative impact on my recovery. They keep telling me if you can exercise then do it, if I can’t then, obviously don’t. They think it was just a matter of time after first IVIG that I relapsed.
      Its 9 months after onset and I’m worse than ever so I’m starting to worry about long term issues. I desperately want to know I can return to jogging, golf, hiking at some point. thinking I may be restricted to a minimal effort in these areas in the upcoming years is disheartening to say the least.

      Steroids (predinosone) is weird. It gives me energy, kind of like a super caffeine rush, but it does NOT help my muscles and my ability to walk. As a matter of fact its now 6 days after my last IVIG (3 days) and my calves still hurt and I walk like a 100 year old (can’t lift feet, can’t move fast).
      I’d love to know what steroids have done for others ?
      I was told it was intended to stretch out the time between treatments. All I’m getting so far is a lot of energy to sit around (since I can’t walk any better)….and I don’t really need that!

      Looking at 6 more weeks before seeing specialist….I’m wondering if weekly IVIG might help ?

    • Anonymous
      July 30, 2008 at 10:47 pm

      ZBRD The fact that your Doctors did not feel your return to exercise after the first IV had any negative impact on your recovery. When you exercise to the point like you did and over do it….any set back might not have an impact on your permant recovery. But it is going to have a big impact on your mental state of mind, depression and attitude. Not to mention the steps back you take to get your body back into healing again. Not everyone has such a big relapse, I think yours was so dramatic because you ignored the effect it was having on your body when it started to make you reduce your distance. That is pretty dramatic. Just listen to your body more and consider what the doctors think. Your case is going to be very different than others they have had or will have. 9 months after the onset is not a lot of time in the large scheme of things. Just to have the IVIG stop any attack so the body can heal the covering on the nerves and start to mend any nerve damage to the nerve itself….is going to take awhile longer. No one can tell you what point you will heal to or if you will be able to do any or all of those things. The fatigue is one thing I hear people that have been ok for years and then do something that really is too much for their body. My friends Son is an adult with children and when he plays too rough with the boys or rakes leaves he can feel the GBS slow him down. It is not the whole body he had it below the waist and that is where the fatigue effects him. Some people have gone on to do a mountain climb or play a sport in college. I think it just depends on how smart you are with your body. Doing too much will catch up with you so you might want to just hike and golf but not do the jogging. Or take up swimming because the boyancy in the water is not as hard on the body as maybe jogging. I am sure there is some adjustment you will have to make for your new lifestyle. Want to walk 5 miles a day? Divide it up into very small distance and do that for only 5 minutes each hour rather than try to do it all at one time. That way of pacing yourself will pay off in the end. It might be too early for your body to start stretching out the time between IVIG and until your body repairs the mylin sheath to the nerves you are leaking so much energy thru the coverning of the nerves out in to the body and who knows how much constant signal is getting to your muscles. As that heals and the signal gets constant it is going to be hard for the muscles to work properly and effeciently. Atleast that is what I have experienced. You need to learn to be patient. Remember that this process can not be hurried up with steroids they are just an aid. Your body is going to get better slowly. For now concentrate on every tiny muscle, tendon and ligament to make sure you stretch them and keep them moving. Yoga might be the best exercise to get your total body back into shape? I have not heard of anyone that has had the IVIG every week that again is something others can respond to also. I think you need to see at what point you feel you need the next dose and communicate with your doctor. Some get them every 6 weeks, others can not go past every 4 weeks. That is a schedule that comes from your communication with your doctors. Keep a Journal that will help also to tell them how the exercise and good nutrition has helps. When you did something that was too much, or a long day how it effected your body. How long it took you to recoup. Notes can tell the doctors alot about how the meds are working. I am sure others will let you know what effect the steriods have had on them. Keep posting your ideas they will help others start thinking too! If you have GBS and not the cronic form of GBS (CIDP) the prednesone is not going to help. The type of IVIG or brand might be something to consider? Have you talked to your doctors about having Plasmapheresis instead of the IVIG?

    • July 31, 2008 at 4:19 pm

      Again KIT…THANKS. You are very knowledgable in this area. I’m going to work on my patience, which I’m pretty good at anyway. Since I haven’t seen a neuromuscular specialist yet we are holding off on the Plasmapheresis until that appointment is kept. My Neuro wants a plan of action from the specialist.

      I can’t say the Predinose isn’t helping…it gives me energy, I just don’t know if that is what “helping” in GBS/CIDP terms is ?

    • August 16, 2008 at 4:23 pm

      I visited a Neuro-muscular specialist and his team at a teaching University this past week. They concluded I have CIDP not GBS as originally thought. Since my Neuro started me on IVIG early on they felt it has helped keep the Axion intact as I have no damage to muscles (yet).
      It was an interesting experience as they did a 1.5 hour long EMG test. Looking at every measurement and redoing any suspected number. They kept testing my skin temperature and warming up the test area (with a hair dryer). They have found that cool or cold extremities (arms/legs) can impact results.
      They found my feet to be weaker than my hands and this explains my serious walking issues. In the end they have forwarded a treatment plan to my Neuro for implementation. I will continue on the predinsone and get IVIG every 18 days on a set schedule. They also want a bone scan, lumbar puncture and more blood tests. We are going to use this consistent IVIG dosage schedule for several months, then take a look at where I am.
      A big benefit to seeing the Neuro-muscular specialist is now I am a patient. I can email/call him and so can my Neurologist. They are hopeful for an eventual recovery, but as most of us know that “definition” is pretty broad.
      Nearly 9 months in and I continue to slide downhill, even after an IVIG session.

    • Anonymous
      August 16, 2008 at 5:46 pm

      Zbrd,
      Hi! I have read all your posts on this forum. I was diag. on April 11,2007. I have progressing very slowly. I walk only with a rollator. I also live in Indiana & am curious what neuro-muscular Dr. you saw and what neurologist you see. My neurologist is at Ft. Wayne Neurology, Dr. Gupte. I have also seen Dr. Kincaid at IU Med. Center. He diag. me with rare form of GBS Acute sensory neuronopathy.
      Talk to ya soon
      Cathy:)

    • Anonymous
      November 3, 2008 at 12:05 am

      well, i think diet does play a role. it did with my step sister, who went holistic and natural after realizing she was lacking in some nutrients.

      for me, i wonder if not enough fat in the diet had something to do with it? after 60 days of slowly progressing gbs, i went out for a dinner with my son’s swim team (end of the season award dinner), and had a couple of plates of mexican food. this was after also losing some weight, perhaps too quickly.

      that evening i felt the gbs switch turn off. it was like magic, and a sensation i still don’t know how to describe. i expected to be fully back to normal by morning, but the road back was slow. i was somewhat afraid of a recurrence (and still am), but worrying is not going to help. i am listening more (and significantly more than my md-s were) to my body.

      hope you get better and stay well – mentally, physically, and spiritually,
      ferenc

    • Anonymous
      February 3, 2010 at 5:11 pm

      [QUOTE=Carolyn]Eric,
      I had GBS twice – twenty years apart. I have gone the natural route both times. The first time I had the best holistic doctor on the East Coast in Shillington, PA. Suzanne Sommers writes about him in one of her books and meantioned him on tv. But he has changed since I have gone to him so I would no longer recommend him. I am currently reading an excellent book on autoimmune diseases. What I suggest is the following:
      See what you are eating that is loading down your body. Give up sugars and starches to begin with. I did this for the last seven months and feel great – more energy, no headaches, no hunger attacks. You have to take the load off of your body so it can heal. I am also eating right for my blood type. I have cut out wheat, potatoes, corn, peanuts. (That is because I am an O) I eat lots of protein, red meat, chicken, turkey, eggs, shrimp and then a salad. My blood pressure is back to normal. I take lots of vitamins. If you decide to go down t his path, email me and I shall personalize what you can do. I wish we didn’t have most of those pharmaceuticals because they are a quick fix with side effects. If we only had antibiotics, then people would be forced to go the natural route – eating correctly and giving the body what it needs to mend itself.
      My philosophy is to let the body repair and don’t push it as far as exercise goes. I did not physical therapy even though I sould not stand for over four months. It did not do any damage. IN fact, I do not have the pain that most GBSers have. I wonder if that has anything to do with it.
      PS…..I used to love to go to Rugby games and their infamous parties – no I was never a muffin girl……but I do know the words to their songs. They have to have THE best parties.[/QUOTE]

      Not sure if your on the forums anymore Carolyn but i’m always intrigue when i hear of people with autoimmune disorders reporting that they healed themselves with dietary changes etc. as i admit that i’ve eaten junk food/fast food all my life and wonder at times if that possibly brought on my CIDP.

      Thanks for your post !!

    • Anonymous
      March 5, 2010 at 10:40 am

      Hello. I want to give you a bit of a warning. Dr.s were unsure of whether or not I had CIDP or GBS. It took 21 days from onset of tingling in hands and feet to get to the point where I couldn’t walk, so I was in a bit of a grey area. I was in the hosp for 10 days, and received IVIG, although I never needed a respirator. After 6 months of recovery, and frustration that I wasn’t better, I pushed myself harder than I should have (not ridiculously so, just a little!), and then declined, so we all came to the conclusion that I possibly had CIDP, and started IVIG treatments regularly. (And I sooo wanted to feel better!)

      It then took three different IVIG treatments (and 9 months) for me to realize that I would start to feel better right BEFORE the next IVIG treatment was scheduled. I’m lucky that I can read my body pretty well (I credit that to being a runner, and I see that you’re a runner as well). But as well as I could read it, recovery and progress was sooooo slow that it seemed incomprehensible to me.

      We stopped IVIG treatments, and my recovery has been slow but steady (mind you, a little forward a little backward, but overall, progressing).

      I have to listen to my body. If I feel cold, it’s a sign I should rest (or if I feel tingling in my body, or numbness in my toes, or a bit light headed, etc). There are so many ways our bodies tell us to rest. I just had to listen. I had to change my life.

      I found that Dr.s could tell me very little about what to expect or what happens after the initial IVIG treatment. My neurologist, (who is on the foundation board AND considered a world expert on GBS), told me he didn’t know what happens after a couple of months of GBS recovery, because he didn’t see any patients after the initial release-from-the-hospital visit. (I cried!) They only continue to see people that they think have CIDP.

      I was also in the Dr’s office when he received a call from the pharmeceutical company that provides the IVIG for CIDP patients. They were sending him to a conference in Florida, and lunch in NYC, and “kissing up” like you can’t imagine. (Another time when I was in the office, they had provided a catered lunch for the staff…We’re talking salmon!). I don’t think the Dr. would have prescribed extra IVIG if he really didn’t think that I had CIDP, but that pharmeceutical company was in his face.

      What I’m trying to say is that I’ve found that my recovery is in my own hands. (As you can tell, I trust Dr’s very little. They let on like they know more than they do until you ask very pointed questions!)

      The only way they can determine whether or not the “grey” cases are CIDP or GBS, is by how the person feels after more IVIG. For me, it was realllly hard to tell because I so badly wanted to feel better. Recovery was so gradual that I honestly could not tell!!!

      It will be up to you to determine how the IVIG affects you. I’ve since come to learn that if you don’t feel markedly better after a few days, the IVIG isn’t helping (a tough thing to admit!).

      It’s not all doom and gloom! Mind you, many wonderful blessings have come with GBS. Stay open to them! Physically, as long as I take GREAT care of myself, my life is a little different than it used to be. Mentally and emotionally, I am much more at peace with myself and life. Any Bernie Seigel book is wonderful for people trying to heal from any illness!!

      Keep at it! You’ll figure it out!
      Best Best wishes for a wonderful path!
      Gale
      Two more tips: (1) Not to be contradictory, but when I started to get better (after about one year) and I rested too much, my muscles would ache (not tingle, but ache), and exercise helped (walking, not running). I did try running one day and went so far backwards, it just isn’t worth it to me. Now, after two years, I can down-hill ski, in-line skate, and even cross country ski. But it took me two years to get here (and I still won’t attempt running!). AND, I still need to rest in the middle of every day.

      (2) Food has alot to do with how I feel as well. I figured out at one point I was allergic to corn (can you imagine?? Corn is in everything!!! Corn flakes, chips, etc!!), and was then able to give up any pain meds (including ibuprofen). That’s how much that food allergy affected me! I went from 3 – 4 neurontins per day to nothing!! That allergy taxed my system something fierce!
      Good luck!

    • Anonymous
      March 5, 2010 at 10:51 am

      I re-read your story and have to tell you one more thing. I so worry about you. I think you are not resting enough.

      Recovery from this illness is counter-intuitive!!

      It’s not like exercising where you push yourself a little harder to get better every day. That will make you worse!!! (I know someone that relapsed SEVERELY this way!!!)

      It’s more like “financial budgeting.” You have so much in you account that you can use. If you keep a little extra in your account, your account builds.

      If you use what you don’t have, you overdraw, and go into debt (your recovery goes backwards). And it takes a long time to dig out of this hole.

      Hope this analogy makes sense.

      I’ve found it’s as “simple” as that. Please note: Simple DOES NOT mean easy!!!!

      Rest, my friend!! You’re the only one who can make yourself better!!
      Gale
      46 years old
      GBS, Jan, 2008

    • March 5, 2010 at 9:47 pm

      Very insightful Gale Force Winds. It sure sounds like you had/have GBS not CIDP. Your ability to return to an active life is very impressive. Do you still get IVIG treatments at all?

      For me, I unfortunatly have CIDP that just won’t “go away”. I recently passed my second year of IVIG treatments every 5th week (for 5 days). By the 4th week I am growing weaker, my muscles (calves especially) start hurting, my hands cramp and get very week and my walking slows to an “old man” shuffle. I also get stingers and electical shocks in various parts of my body.
      In the beginning I tried to return to jogging when I was feeling better, but my legs are so heavy even when I am at my best, so I dropped that effort. I did find last summer (2009) that I could ride a bike pretty well. Sitting down took the weight off my legs and peddling was doable. I rode several times per week sometimes up to 12 miles. Nothing competitive, but I was getting some exercise. But then as I grew closer to “Treatment time” I had no energy and stamina so I would go a couple of weeks without exercise. Very frustrating and I never really got any stronger. What I mean is by the end of summer I wasn’t able to go any farther or longer than the beginning.

      All that said, I am growing to realize I will probably never return to running, my body just can’t do it (even if a bear was chasing me). I recently had to get a “Port” installed to receive the IVIG due to vein issues and that felt like another step backwards.
      I can’t complain too much, as I’m able to work 9 hours a day at my “office” job and I really like my work. I even am able to work from the hospital when I am getting treatment. Of course by the end of the day my CIDP has pretty much worn me out so my evenings aren’t too exciting.
      Maybe someday I will beat this thing and return to jogging I sure miss the feeling of “light feet” under me, it won’t be long before I completely forget what it was like.

    • Anonymous
      August 28, 2012 at 7:47 pm

      Carolyn,

      I would be interested in talking with you about the proper nutrition for my blood type.  Please contact me at keller_tania@yahoo.com

      Thank you!

      Tania

    • June 25, 2015 at 2:17 pm

      Cyclosporine: I have been dealing with CIDP for about eight years. I had one five day treatment with IVIG. I thought it helped but got a life threatening complication from the drug. No more IVIG.

      Prednisone was a disaster for me and did no good.

      Plasmafarisis did not help.

      Chemo with cytokines for six months did not help.

      I heard about cyclosporine on this forum. I was on it for a couple of years and I got a lot better. I stopped cyclosporine for a year or so and after a virus my condition has deteriorate significantly. I’m back on cyclosporine, probably should not have stopped, and hopping for improve the again.

      PS when I overdo exercise I’m a basket case for three or four days.

      Ubbietom