New – intro and questions
AnonymousApril 5, 2007 at 10:11 am
I wasn’t sure where to put this, as I’m both introducing myself and asking a question.
I’m 22 years old (almost 23), and last year I was hospitalized with GBS. My neurologist used plasmapheresis to nip it in the bud. After some physical therapy, I am able to walk again, but I still have nerve damage in both of my legs, which causes severe pain, cramping, and difficulty walking. I’m on Neurontin (which has worked wonders! – on a scale of 1-10, I used to be a 10, and now it’s down to about a 4! – fantastic!) and a muscle relaxer to help stave off cramps. I’ve got a great pain management specialist helping me with the pain.
However, I still have difficulty walking (especially long distances) and I have to utilize a cane from time to time.
I was also diagnosed with fibromyalgia – as my doctor put it, fibromyalgia comes on after a traumatic event. I just had one. Nothing can be done about the pain, but I’m finding tiny ways to help, and every little bit always helps. 🙂
I still realize how lucky I am that, a little over year later, I’m up and about. I’m a little disheartened by the fact that my problems seem to be experienced by a lot of you, but at the same time, it feels really great that I’m not alone in my experience.
I’m actually glad that I’m back in school now after that experience.
However, I have a few questions. I’m significantly overweight, and I was before I was hospitalized. Adding Neurontin (which has the side effect of weight gain) hasn’t exactly helped. Although I’ve successfully lost 11 pounds, it almost feels like it’s throwing a deck chair off the Titanic. I’ve been working on my diet (been forced because of problems with my stepfather’s heart), and I’ve been trying to work out.
The problem with working out is that I can’t do enough to really get a benefit. I’ve been going to an aqua aerobics class, and I’ve been trying to get into a water pilates class instead (it should be easier on my legs), but I always feel that I can never get to the point where I’m exercising enough to get a benefit. If I do too much, my legs cramp and I have to stop. If I do too little, I don’t get any of the real workout that I need (plus I feel like a moron standing in the back, doing very little).
Does anyone else have this issue? Does anyone have any idea where I could possibly get any information on how to work out after Guillain-Barre has done this to my body?
I just feel stuck – I need to lose weight to feel better, but in order to lose weight, I need to feel better.
AnonymousApril 5, 2007 at 10:24 am
I was originally dx with GBS, but my dx was changed after I kept on getting worse instead of better. I was strictly in a power chair for over 2 years, then began to walk a little with a walker, then two canes, then one cane. I also have severe foot drop, so I need AFOs. Since I had CIDP I was on weekly solumedrol (steroid) infusions for almost 2 years. During that time period I gained 80#, but I have to add that I did lose 30# the first few months after I got ill, so I had actually put on about 50#.
I have managed to lose that weight (I am 5 years out), mostly by following Weight Watchers diet, it hasn’t been easy though as I am also limited to the exercise I can do. I have been going to water aerobics classes for almost two years now, but it does exhaust me, & I do suffer a lot of cramping afterwards. But that is all the exercise I am able to do. I hate to say this, but you will probably not be able to get enough exercise with your residuals to lose any substantial amount of weight. I think you will need to change your eating habits in order to lose the weight, & permanently. Good luck…
AnonymousApril 5, 2007 at 10:29 am
Welcome to “The Family”. I’m glad you found us! Your predicament is a vicious circle and you are not alone! Even a little excerise is better than none. You won’t see “fast” results but it will be a steady improvement. For me, personally, I favor yoga and any kind of water therapy. I tried Pilates’ and loved it but wow did I get a huge set back! So, I’m sticking with the yoga. It is so good for gentle stretching and toning your body.
I question the Fibromyalgia as the residuals of GBS can be so much the same. I had that same Dx before we knew the long term effects of GBS. I have improved so much during the past 12 years. No return to employment, no marathons (altho some days feel like one;) ) and a careful expending of energy but so much better!
Damage to nerves can take a life-time to heal that’s why we call it:
GBS ~ getting better slowly 😀
Again, welcome. We’d like to get to know you 🙂
AnonymousApril 5, 2007 at 5:52 pm
[FONT=Arial][FONT=Times New Roman][SIZE=3]Hi and welcome. The answer is yes when it comes to your exercise. I have a gym membership (in fact just expired), as well as gym equipment in our basement. I would go and keep trying to have some kind of work out.[/SIZE][/FONT] [FONT=Times New Roman][SIZE=3]With aerobics, Pilates, yoga, walking, elliptical, bicycle, it all burns and cramp so badly I cannot carry on. I was so excited to try jazzersize but that had the same results, I pushed so hard hoping the pain would go away but could barely walk on my feet so I had to stop. Regarding weights, same happens to hands and feet, depending what is holding or touching a bar.[/SIZE] [FONT=Times New Roman][SIZE=3]Exercise often makes me feel like I am about to collapse because my legs cant keep me up anymore and my whole body starts shaking inside – its weird.[/SIZE][/FONT][/FONT][/FONT]
[FONT=Arial][FONT=Times New Roman][SIZE=3]I have tried walking in the neighborhood soooo many times and my feel just cramp and burn so badly in my feet. In fact we had such wonderful weather here the last few days I was tempted to try for the billionth :rolleyes: time. I started taking Lyrica last night, maybe that will help and I can do more.[/SIZE][/FONT][/FONT][FONT=Arial][FONT=Times New Roman]
AnonymousApril 5, 2007 at 8:33 pm
From October thru January when the GBS was at its worst, I had difficulty swallowing. It felt like the food would go down a few inches and stop there. So I had to chew my food about 50 times to make sure it was liquid or drink a carbonated beverage to force it down. I realized that I had never really chewed my food well. I ate less and continue to do so now. I think my body deserves to rest and get better. You might want to try chewing your food really really well…maybe count to 50 chews before you swallow. Try it a few times and you’ll get into the habit. Also try and cut back on the carbs. I make sure that I do not eat a protein with a carb – it keeps the protein from getting absorbed properly. My nails and long and strong. That way I know I am getting sufficient protein to rebuild my body. Every little bit we can do for our bodies helps it to heal faster…..
AnonymousApril 10, 2007 at 7:39 pm
Long story which i will try and shorten here.
A couple of months ago I got slight tingling in my feet and hands, and the right side of my face became weak. within 12 hours both sides of my face were paralyzed and I had been diagnosed with bells palsy. They put me on a 5 day regimen of steroids and anti-cirals. since that didnt seem to be working I contacted a facial paralysis research center and they recommended me to a facial paralysis specialist fairly near me because the doctor I spoke with said that experiencing problems in the hands and feet as well as having acal apralysis on both sides of my face wasnt normal for Bells palsy.
The new doctor put me on another 10 days of steroids and anti-virals, and when i asked if I should go to a neurologist he said to wait and see how i responded to the treatments.
In retrospect, and after reading up on bells palsy, it seems pretty well documented that if you experience symptoms anywhere other then your face it isnt Bells palsy.
after about a month and a half of slow progression of weakness in my arms and legs and a ton of testing by a neurologist i decided to see because the “Facial paralysis specialist” seemed to be more interested in geting pictures of my face to put on his website before/after then he did in listening to what was happening to me. They diagnosed me with Guillen-Barre syndrome though it tooka long time and they weren’t 100% sure since I didnt have degraded reflexes, and i ahd some other symptoms that were not typical. When my legs started to get very weak, the doctor put me in the hospital and decided that even though he wasnt 100% sure I had GBS he was pretty confident after all the testing (SPinal taps, blood tests, EMG and NVS, and observation). They put me in the hosptial for 5 days and now a couple of weeks later I am starting to feel less “Numb and tingly” in my feet and hands, and my legs seem to be a little stronger then they were prior to going int he hospital so the doctor is confident that GBS is the right diagnosis despite the fact I had a much slower and less severe onset then the typical gbs patient, and it seemed to progress from the top down more then the normal bottom to top progression.
My question is this (So much for making it short). If I have GBS i have read that steroid treeatments actually make GBS worse, and I am wondering in what way and if there is anything I should keep an eye out for in terms of symptoms?
alternately since I seem to have developed the symptoms comparitively slowly, I am concerned that its possible I may have CIDP (in which case the steroids were the right treatment). Is anyone aware of any tests that my neurologist can run that will eliminate CIDP versus GBS (HE may have already run the test, he ran me through a ton of testing to eliminate as many posibilities as he could before putting me in the hospital for GBS)
Hoping someone can tell me the name of a test so I can scan the pages and pages of testing results I had copies made of which are written in medicalese so i can’t tell what the heck they are testing for in many cases.
AnonymousApril 10, 2007 at 7:56 pm
My GBS ‘starting symptoms’ sounds very much like yours. I did start with the tingling toes and fingers (gp said I was hyperventilating), another trip to the gp followed a couple of days later and he diagnosed me with Bells Palsy because half my face was numb. Gradually over the next few days things started to weaken, swallowing affected etc.
How long did it take for you to get to your weakest point, or the point where you got to your worst?
AnonymousApril 10, 2007 at 8:20 pm
Thanks for answering me. It took about a month and a half before my legs were weak enough so I couldn’t get up and down my stairs easily which after I spoke to my neurologist is when he told me to drop everything and get to the hospital. Prior to that he was still trying to determine if I had GBS (WHich was his main thought) and he wanted to eliminate a bunch of other posibilities before he gave me IVIG treatment. I do know now that I DON’T have a lot of stuff which is kind of nice (At least until is tart getting the bills for all those tests I guess). Compared to many peoplesstories in here my onset and symptoms are far less severe at this point, and I keep thinking I am starting to get on the mend when one side of my face or the other sems to get a little better, then i go backwards again the next day and it is paralyzed again. Is that normal during the recovery process to go forward and backwards alot?
AnonymousApril 10, 2007 at 10:22 pm
I honestly hate to put a spanner in the works here, but have you read the article called “Whats in a name : [FONT=Arial]Important Differences Between GBS, CIDP and Related Disorders”[/FONT]
Glenn, when did you start with your first symptoms, as in what date?
AnonymousApril 11, 2007 at 1:57 am
Hi there, thanks for sharing your story. You’re on the right track doing things like water aerobics/pilates and walking because they do help improve muscle fitness and reduce muscle pain. You might have to work with your Doctor as to an eating plan of some sort maybe? You will have good days where you can push yourself a little bit more and bad days where you feel you can’t do anything and that’s o.k too. I’m naturally a slim person but I’m a little ‘chunky’ for me at the moment because I can’t get around like I used to so that’s been frustrating but I just do what I can do. I’ve got drop foot, pins and needles and numbness still left in my feet so I’m doing aqua aerobics, physio exercises and working out at my local gym and every two weeks the personal trainer re-assesses my programme so I’ve found this combo to be working really well. Hope this helps and keep up the good work, it’s good to hear your trying and that’s better than doing nothing. Just remember things take time 🙂
AnonymousApril 11, 2007 at 8:40 am
One thing to remember during and after GBS is that generally most of the pain comes from the damaged nerves, overdoing it, and sometimes trying to ‘push though’ that nerve pain can be counterproductive. Unfortunately it is a common misconception that the pain felt is muscle pain and not nerve pain. However, having said that, being inactive for so long after the attack or because of fatigue, doesnt make it easy for us to know which pains are muscle pain, and which are nerve pain. :confused:
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