AnonymousSeptember 12, 2006 at 10:25 pm
I am a 10 year GBS survivor w/residual pain in my feet, legs & hands. My ? is: Does this ever get better? I’ve been on pain medicine for 10 years, 2 percocet a day, which has been working for me. Now my Dr.’s want to take me off. Is anyone having the same problems, If so, what do you do for the pain?
AnonymousSeptember 13, 2006 at 8:22 am
Howdy, this is my first post here. I have been dealing with GBS for 8 years now and I too have the same problems with pain. Mine is mosty located in my middle back and upper legs. On occasion I get pain in my face as well. Gabapentin did nothing for this but I don’t know about the other one listed. I have yet to find a doctor that takes this seriously enough to help me with all of this. I always get the “It’s in your head” treatment.
AnonymousSeptember 13, 2006 at 9:31 am
I had good results for the pain with Cymbalta but I did gain weight so I am going off it, and wow… the pain is back.
And Curiosity…hang in there, remember we are only given as much as we can handle and someone must think you are a very strong individual. That’s my theory…And remember when you are feeling down, there is strength in our numbers……
AnonymousSeptember 13, 2006 at 9:59 am
I take Lyrica based on my Neuro’s advice and I know of another person who has GBS that takes it as well. Neurontin doesn’t work well for all of us, in my case I have to take so much Neurontin to make a difference it makes me comatose. So while Gene is correct that it is a noted adverse reaction to Lyrica, it is still prescribed for some of us.
[quote=gene]lyrica can cause gbs.
gene gbs 8-99
in numbers there is strength[/quote]
AnonymousSeptember 13, 2006 at 10:58 pm
I have experimented with some of the pain I am in and found that after I fell off the bathroom scale and JOLTED my whole body. I had places that hurt that never hurt before. I visited the chiropractor to see if he could help and that eased up some of the places. Other places were just too weak, muscle wise to hold his adjustments. I used Yoga, stretches and very basic slow exercise to start to strenghten my muscles. From doing just the basic stuff that I could think of like the stability ball and some of the exercises they had me doing from rehab, I was able to strenghten places to where I again visited the chiropractor. My balance got better thru strenght in my muscles. Even now I can get a pain from a tiny muscle that is not up to par and I work on that isolated muscle to get it going again. The water aeroblics of various kinds have really helped. The water had helped me get some of the weight off joints and get range of motion.
At some point I might find I have hit the limit of what exercise can do for me, so I am printing out all these threads and keeping them on file.
Thanks everyone for your replies to others, you don’t realize how much they have helped me thru an hour or a day or a week. I has all added up to months lf suggestions, opinions and others sharing their time with others that has helped me beat this!
Your attitudes have shone me what I want to become and where I don’t want to end up! Thank you all! Keep up the good work!
AnonymousSeptember 14, 2006 at 10:45 am
I also take Lyrica (like Jerimy) because it is the only things that I have not had an allegic reaction to. There are many available chioces for pain management — you just have to find the right one that works for you. You might be better off if you try a non-narcotic alternative like Neurontin/Gabapentin (which most people can take), Cymbalta, Lyrica, Amatriptaline, etc. Check some of the other posts here on the forum…there are many drug choices listed that could be alternatives for you.
I hope you find some relief.
AnonymousOctober 3, 2006 at 11:47 pm
Hi Kelly: I too suffer from chronic pain in hands and legs. I take a fairly high dose of neurontin but also valium, which is used to treat the pain in my legs. I haven’t heard it mentioned on the forum but it works really well for me in combination with the neurontin, and since I never need to raise the dosage for it to work there is no fear of addiction at this point. Good luck. Jeff
AnonymousOctober 4, 2006 at 12:34 am
Also if you read the literature for Gabapentin under nervous system it list as infrequent “neuropathy” wouldn’t that be like Lyrica? But in the days Gabapentin was first put on the market GBS probably wasn’t well known so maybe they called it Neuropathy which is a Peripheral Nerve Disease.
AnonymousOctober 4, 2006 at 12:55 am
i try to live with the pain. my hands are the worst and sometimes they feel like they’re on fire. i just (flushed) some out dated darvocet. wasn’t working anyway. now i have vicodin. i only use it when i just can’t stand the pain anymore. i am 5 years post gbs and also have autoimmune hepatitis, so the pain meds. aren’t good for my liver. believe me, i feel your pain. i hope your doctor can find something for you that’s non addictive and will give you some relief. being on percocet for so long is really not a good idea. good luck.
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