I’m new to this
Not to GBS though - which I have had for two years exactly now
I’m still very reliant on carbamazepine and pregabulin for the pain and worried about the effects of prolonged drug taking of the above. Wondered if anyone else is worried about this and if they also suffer from depression… Currently have flu as well which makes everything else that bit more painful. According to my specialists i have been left with hyper-sensitive nerves and what they call permanent chronic fatigue…
I also still have that permanent “frostbite” feeling in my hands and feet and my overall stamina is poor
I'm also new to this, but not to GBS. I'm 30+ years in. When I as diagnosed they didn't have any pain meds that were available as long term therapy. They just kept telling me that "pain is good, it means you still have feeling", so I get your frustration. I still have some numbness, hypersensitivity and experience fatigue regularly. I have learned to live with the pain though. It gets tough when I overdo, the pain seems to magnify the minute I try to sleep, but Ibuprofen is all I take.
About a year ago I started seeing a great internist and he found that my Vitamin D level was almost nonexistent. He started me on 50,000 iu's daily and as my level has finally hit the bottom end of normal I am noticing it has helped with pain management.
I still find that the best pain reliever for me is proper rest. When I'm stressed or fatigued the pain is significantly worse. It's tough to get people to understand that sometimes, they think you're being overly dramatic. And unless someone has experienced this kind of pain, they just don't get it.
I am getting close to my one year mark and came on today specifically to see what people are saying about the meds and memory (more word-finding than memory, I suppose). At any rate, I have the same concerns you do and though not sure I can do without my nightly dose, am encouraged by Charlotte's answer. I am on Gabapentin (400 mg) and Tramadol (50 mg), and take them about an hour before bed - when the pain seems to kick up a notch. I also have the fatigue, I am able to work, but even half days are a struggle. I can walk for a good distance, but the mental part is what seems to knock me down. I have a few good hours and then have to call it a day - which I am grateful for as I know there are many people who never get back to work at all. I don't know about your history with depression, but I never battled it until GBS came along. I think it may be one of the side effects, but I need to look at it again. Maybe you can check the side effects of your meds and see if it's listed. It's no fun, and I'm thinking of cutting down my Gabapentin to see if that helps. I tried to get back on the 50,000 iu's/day of Vitamin D, but my test results show that my Vitamin D is very high...
Not sure if any of this helped, but I agree with you - it's good to share frustrations! : )
I’m on 600-900 mg of Gabapentin depending on the day, more pain, more medication. I also have issues with getting words from my brain to my mouth. I can visualize the concepts but struggle for the words at times. I don’t know if this is a side effect of the Meds or something else. I get tired much easier than I used to but wouldn’t call it chronic fatigue, I work a 40 hour week but I do have a desk job.
I was taking Gapapentin 3 times per dat … 900 mg total. Gapapentin made me dizzy and sleepy … My neurologist suggested just taking 1 tablet at bedtime. This has seemed to work for me so I don’t have the dizziness during the and feel much better. I contacted GBS July 2015. I do experience fatigue some days and week muscles some days. How does Gabapentin effect everyone else…dizziness…sleepiness ??
