HI everyone. I am new to this site. I have had Guillian-Barre for two years. I have not been diagnosed with any thing else. Or my doctor simply has not told me. I had a very mild case, i could walk a little from room to room, so i was not paralyzed. I have a friend who was. One thing he told me is stay away from heat - but my hot tub was the only thing which gave me relief while i was trying to find a diagnosis. I have been on gabapentin for 21 months and it works wonderfully. But whenever i try to get off i realize i still have symptoms. My friend also told me that exercise is not recommended but my doctor told me to exercise, exercise………So i would love some feed back.
Also has anyone else had the symptom of burning tongue, mouth and esophagus.
Isn’t it amazing how much that we just don’t know about Guillaim-Barre syndrome. I, like you had a mild case for over a year now. I too have been on gabapentin which has worked well for me. After a couple of days of feeling well my brain tells me that I must be getting better, so I cut back on the gabapentin and for a few days I am painfully aware that I still do have. My neurologist at the Mayo Clinic tell me that after a few weeks of feeling well I should coordinate with my personal neurologist about cutting back slowly on the gabapentin. I have been told that moderate exercise is good for healing. The difficulty is finding the balance of moderate exercise and suffering from result of too much exercise. I have read that, and been told by my neurologist that the syndrome can morph into other issues; for example my Guillain-Barré has morphed into a very painful small fiber neuropathy at least me feeling worse now than a year ago when first diagnosed.educating yourself is a very good way of managing your syndrome, this place is a very good tool to do that as there are some very intelligent people here who are willing to share their experiences.
I do not have a burning tongue and mouth but rather substantial pain in my feet and burning in my limbs and feet.
And as many have commented on in this site, debilitating fatigue is an issue many of us have to contend with.
Hi Glad,
I havent heard to stay away from heat, but if u find out why, please tell me. I only know that my friend who has MS cant do heat at all, and me, with GBS cant do cold ar all!
As far as Gabapentin, I find it to be very helpful too. Yesterday I missed the dose.and by the time I realized it, my body had so much fatigue and my hands/arms/shoulders/lowrr legs/feet were in so much pain I decided I would really try not to miss taking them again unless I actually felt my muscles were starting to be less numb and some strength was gained.
With the exercise, my neurologist had said (@ 2months) absolutely NO exercise, and now at 3 months he wrote me a referral to start physical therapy, but like u, my tongue is effected (numb), swallowing, torso still has the super tight belt like sensation (& SOB), not to mention all muscles that are trying to work feel like they are buzzing and most are completely numb. I had two rounds of IViG, and how do I know its time to start exercising, well, I finally saw my legs quadricep pull the knee cap up in a contraction … yay! So I guess if its doing that, theres some improvement and if so, I assume the demyelinating nerves have started regenerating now. I read the pamphlet for Physical Therapists giving them advice for patients having GBS, saying pushing us isnt good, but instead work our muscles but not past fatigue. The pamphlet is found online on the GBS-CIDP Foundation International.
I wish u the best, Kathy
Hi Kathy: I am glad the gabapentin is working for you. I have GBS for 5 months & was up to 3600mgs a day of gabapentin & still had some pain (the worst was also arms, hands & lower quads down) so I switched to Lyrica & felt even worse. I went back to gabapentin & worked my way up to 3600 again & still had pain. I slowly weaned down to 1800 & the pain was about the same, so I stayed there, but for the last 2 weeks the pain has become unbearable, especially in hands & lower arms. What dosage are you taking & have you tried different doses. Have you tried any other meds for the pain.
Larry
Kathy Cooper said:
Hi Glad, I havent heard to stay away from heat, but if u find out why, please tell me. I only know that my friend who has MS cant do heat at all, and me, with GBS cant do cold ar all! As far as Gabapentin, I find it to be very helpful too. Yesterday I missed the dose.and by the time I realized it, my body had so much fatigue and my hands/arms/shoulders/lowrr legs/feet were in so much pain I decided I would really try not to miss taking them again unless I actually felt my muscles were starting to be less numb and some strength was gained. With the exercise, my neurologist had said (@ 2months) absolutely NO exercise, and now at 3 months he wrote me a referral to start physical therapy, but like u, my tongue is effected (numb), swallowing, torso still has the super tight belt like sensation (& SOB), not to mention all muscles that are trying to work feel like they are buzzing and most are completely numb. I had two rounds of IViG, and how do I know its time to start exercising, well, I finally saw my legs quadricep pull the knee cap up in a contraction ... yay! So I guess if its doing that, theres some improvement and if so, I assume the demyelinating nerves have started regenerating now. I read the pamphlet for Physical Therapists giving them advice for patients having GBS, saying pushing us isnt good, but instead work our muscles but not past fatigue. The pamphlet is found online on the GBS-CIDP Foundation International. I wish u the best, Kathy