I take Cymbalta, but need more than the usual dose to settle the pain. The higher dose makes a huge difference, but it is a “once a year” fight with insurance to cover. My insurance did not ever cover Lyrica and it did not work as well and eventually did not agree with me. I also take L-carnitine and acetyl-L-carnitine and coenzyme Q10. I take flaxseed oil, but this is not for the neuropathy; it is for the heart and blood vessels. Most of the time on this, pain is pretty well controlled. tonight was one of the tough times where my legs hurt too badly to go to sleep for a long time, but these are pretty rare now (four years into this) and this week I missed some doses of these because of staying extra at the hospital where I work due to the severe ice storm we have had. (My front yard still looks like an ice skating rink–it is pretty amazing–and the roads are still dangerous).
I also take Sinemet which is a Parkinson’s drug and this also has helped a lot although my neurologist’s cannot explain it. Annastasia15, is this what you took–levodopa/carbidopa? I helps me to walk more normally (not normal, but much better).
WithHope for a cure of these diseases
Hi Lost wife and welcome! I know what your husband is going through…Most doctors that I had to deal with never really addressed the pain that I had prior and after my diagnosis with GBS in July 2007 either. The back pain was hellish (for lack of a better word). Most narcotics would take the edge off, but not eliminate it. Others who have posted on here are probably more knowledgeable than me regarding Neurotin (gabapentin), etc, as I was not prescribed anything other than hydrocodone for pain. It took quite a while (2 months+) before most of the numbness/tingling resolved. You husband needs to be aware that when he does regain feeling in areas of his body, he may experience what I call “over sensitivity” in those same areas. When I could finally “feel” my feet, hands, etc., they were overly tender to the slightest touch and itched like crazy. I attributed that to the nerves healing. I was like Jack Nicholson in the movie, As Good As It Gets… I couldn’t step barefoot on the smallest crack! The sleep problems, dizziness, and taste problems should also lessen as time goes on. Tell your husband GBS really [B][I]does[/I][/B] mean “Getting Better Slowly”, and to take each day one at a time. I know it’s frustrating for both of you right now, BUT HE WILL GET BETTER! Good luck to you both and keep us up to date.
GBS July 2007
I am brand new to this forum, as I have only recently found you. I was hospitalized with almost total paralysis on 12/25/09, and just released from the hospital last week. While there my pain was closely monitored and managed very well.
I am currently taking Neurotin (gabapentin) every 6 hours. At 6 AM, !2 noon, and 6 PM I take 600 mg. At 12 midnight I take 800mg. I have found that when I am inactive the pain is much worse, hence the higher dose at midnight.
I also take Baclofen a drug no one has mentioned yet on the same schedule. That is 5 mg each time. This drug helps with the awful muscle cramps that come with the pain and tingling.
If I am late taking my meds I am in awful pain and cramping, so I know they are working.
My current PCP is willing to continue to prescribe the above meds so I have no problem. The 2 hospitals I was in have very high reputations, as do my physicians who took care of me so I am lucky to not have a physcian who dismisses this as no big deal – and I am glad, since I gather I am going to have a long time recovering.
I have no problem sleeping with the meds. Good luck in your quest!
I too suffer from bad pain. I feel burning in my feet and legs. Additionally, and this is the worst part, , my lower legs feel like someone has a death grip on them. If you ever had the leg pains that were called growing pains, it is that bad. I find the word crushing interesting because that is a good way to describe it also. I take Neurontin and Cymbalta. The Neurotin works wonders for the shooting pains but doesnt touch the aching, crushing pain. The Cymbalta worked good for that for a while, we increased the dose, it worked good a while again and now the pain is back. I may try Lyrica but in the meantime, they gave me Vicodin. I go back to see the neurologist in a couple of weeks and we are going to investigate my options then. I only saw one person here mention Lyrica. Are they any others that have tried or are taking Lyrica?
Nate was on Neurontin, Oxy and Norco as well as various anti depressants when he was hospitalized.
He has since had his Neurontin nearly tripled and has been taken off the other pain meds and put on Tramadol by the Pain Clinic. It made a huge difference in his amount of pain and his mood.
His back pain got better and Tramadol does not make him dopey. It just kills the pain and has a nice effect on his Seratonin. Thats always good.
I am in my second year of recovery from a second bout of gbs and this time I had so much nerve damage to my legs that they are in constant pain. I take Ultracet ( or tramadol which I think is the generic) and I would not be able to function without it. I take 2 tablets twice a day (325mg each) and when I miss a dose or am late I feel the pain and then emotions set in on top of it. It doesnt affect driving or fuctioning for daily routines. I think it is a higher dose of Acitamidaphene (sp?) and something else but I love it and I can take it alot more often but I hate drugs so I only take more if we are on vacation or more active so I can make it through the activities. Hope this helped.