DIAGNOSED WITH GBS MAY 29/06 Need Tips On Faster Recovery

hi greg & welcome,

with your great, positive attitude your recovery will progress nicely. neurontin for pain. many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. give in to rest & do so lying down. the turtle wins this race not the hare. it’s a balancing act. the muscles respond to stimulus. the nerves to rest. remember gbs stands for Get Better Slowly. take care. be well.

gene gbs 8-99
in numbers there is strength

Greg-Glad to hear you are doing better. First I must say I am not a doctor or anything else-just a guy who reads alot. I believe I owe my speedy recovery to a positive outlook and nutrition since my onset 12-05. You need to rest and sleep alot but also get some projects-even small ones done-if possible for some satisfaction. The body needs extra vitamins and wholesome foods for healing and doesn’t need preservatives,msg,or any other additives or preservatives-these are all detrimental to nerve/myelin sheath repair. Try to avoid alcohol,coffee,soda pop,fast food etc until you feel you have healed sufficiently. I have not reached this point yet but slip in an occasional coffee or, glass of wine or something. Eat lots of veggies-think about getting a vita mix-its an easy way to get your veggies every day. I took multi vitamins,bee pollen,flax seed and an assortment of other whole foods and would be glad to share some info with you if you would like-just let me know. I don’t know how much these helped me but I am getting better every day. Good luck! Ted

Hi Greg, welcome to our family. Something in your post caught my attention. You said your taste buds are returning. I think you are the first other person that I have heard this from. I also lost my taste, eventually I could taste really salty things and really sweet things but just at the back of my throat. My friends and family would bring me all kinds of goodies trying to see if I could taste them. Eventually I was able to taste Chex mix and M&M’s. What a great combination. But believe me I wasn’t complaining. My taste seems to be pretty much back to normal now but it was definitely messed up for a long time.

Take care and remember, take time to smell the roses.

Sherry

healthy food: since GBS er feel fatigue quite often they should focus on healthy food, vitamins, olive oil; honey, eggs, fish, seafood, butter , any source of vitamin B, C, and E and obviously a lot of milk

A faster way? ~ we all would love that! Gene is so right about the turtle and the hare 🙂 I had a horrible time with my taste buds. Most of my food choices were “crunchy” so I could get that satisfied feeling. If I had a “soft” meal, I would eat and eat and eat. Even now, if I am “tired” my taste buds will take a vacation!
Sam ~ why do you say “lots of milk”? Most adults are lactose intolerant and that could contribute to bowel issues.
Greg ~ welcome to “The Family” from a fellow Canadian (Alberta):)

….takes time. I was very determined to get better as quickly as possible and I ended up slowing my progress 🙁 Don’t overdo/overexert yourself too much. Your body does need to be pushed a little…but it also needs the time to rest and relax in between your OT/PT sessions. I would come home after an hour of PT and sleep for 2-3 hours initially !! Eventually, it was less and less. Takes time to regenerate. And remember, everyone’s body/reaction to GBS is different, what works for some, may not be the best for others. Listen to your own body…positive thinking works wonders, determination is key as well. Just know what your body’s limits are….

Beside eating right and taking care to get enough vitamins, make sure to do exercises. Pt gives you the exercises to do and they help you get started, but you have to do them every day when you get home. EVERY day.

My PT therapists said: “What you don’t use, you will loose”.

I am post GBS over 6 years now and I still exercise everyday. If I forget, I can tell a few hours later that I have more pain and many things are harder to do. It might be old age too, but older people have to do the same to keep the parts oiled. We just have to do it more.

Note: I HATE to exercise!!! But it IS very important, and over doing something is the other problem to be careful of. If you do too much, you can cause your progress to go backwards.

Possitive thought, determination, and consistency is what we need to fight this terrible thing. And this forum helps us to share tips and frustrations to make our lives a little easier.

Gredwood, you are the 2nd person I’ve seen here that quit smoking just before onset of GBS. I too quit just before. I wonder if there is a lot more out there.
Andy

Greg,

Sorry, but there are no shortcuts with this one. As we often say around here, GBS means Getting Better Slowly. This isn’t what we would prefer, but true none the less.

Plenty of rest, and plenty of sleep are really necessary. Don’t overdo any physical activity, even when you feel good, because it can set your recovery back.

Good nutrition, and gentle physical therapy. Meds for pain. That’s about it.

Best wishes,

Suzanne

P.S. Judy Z- Lactose intolerant people can drink Lactaid, milk with an additive to counter act the lactose.

I smoked up to the day I went in the hospital. Come out 9 weeks later and never wanted a cigarette. I really had problems with my breathing and am glad I did not have to quit smoking by thinking about it. My body does still not allow it. I go into a resturant and I can smell the smoke and I cough. It is like a dry cough or tickle I get from the irritating smoke. Even smelling someones breath as they get into the car I start to cough. I never thought I would say I will enjoy going out in public when there is NO SMOKING in every public place, expect Casino’s and Bars that do less than 10% of they business from serving foods.

Also I lost my taste buds when I had GBS but I also started with loosing my sense of smell which is required to taste anything. Salt come back first as I remember because I never put salt on my foods it was apparent that some of the foods did have salt. Sweet come back even sweeter. I am not a chocolate person but fruits become sweet to me. Taste come back stronger from not smoking. What a joy to taste correctly!

After going thru this have you noticed how we notice every little joy in life? Even a blink becomes important and a pleasure!

Wonder what I can expect during my second year since the onset of GBS?:)

I had Miller Fisher variant of GBS. My face was paralysed – i couldnt open my eyes at first and when i could i couldnt move them. I couldnt raise my eyebrows or make a smile. The doctors were forever getting students to work out which facial nerves were affected lol. Anyway, one day out of interest they decided to see if i could smell or taste. I was able to smell my deoderant and they gave me sugar and salt to see if I could taste the difference and i could (at this stage i was being fed through my nose so hadnt had anything to taste except toothpaste lol) You would think if anyone with GBS was going to have their taste buds affected it would be someone with MF variant. The funny thing was i had a huge ulcer on my tongue from the tube when i was intubated. I could feel it onmy tongue but didnt feel any pain – thank god as everyone remarked on how painful it looked.