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Dear Ruby and Aussie:

I take neurontin too, I take 600mg 3 times a day. Did you say that you take Oxycontin? Vicodin and Oxycontin and Percocet all have similiar chemical make ups. I have had the SFN for about 10 years now. That is the problem with these meds. When you first start taking them Aussie, yes you will be in a fog but as time goes on your body adjusts and you are able to tolerate them, eventually you will have to have them increased because your body builds up a tolerance to them and recognizes them as part of your normal make up and it no longer is effective for the pain. Same thing happens in cancer patients and I think that neurontin would also act the same way.


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Ruby, how long have you been diagnosed? This disease is extremely depressing. The worst part about it for me is that people look at you and although you may walk funny and grimace constantly, basically you don't look sick so therefore how could you be. I think the other thing is that you want to do things but can't because of the pain and the function. Doctors are jerks in general, trust me. I went to a university hospital a couple of years ago when I was at my wits end for a second opinion. This is the only thing I got out of it "I totally agree with Dr. Kristl, he is doing everything that I would do" and then I got the bill for $5,000. One thing that I would suggest is that a couple of people have mentioned Neuropathy Centers of American, you can find the closest one near you by goggling, and supposedly they have a 95% success rate. I have never been to them because I am really getting to be a huge finacial burden on my family. I also suggest that you seek counseling. I just started 3 weeks ago and we are working on a lot of different mind over pain type of solutions and I am hopeful about that. Cymbalta made me really happy but made me sleep all day long and I am already tired from the SFN.

It has been the single most depressing thing I have ever been through, mostly because I thought that I was alone and that it was all in my head.


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People a lot of time want to only talk about the pain, to me that isn't helpful, but thats just me. I will say though that it has been the single most helpful thing that I have come upon. It has made all of the difference just knowing that I am not alone and it isn't in my head. I am probably going to lose my job in the next month or so because it has gotten so bad that I am having trouble walking and have very limited use and feeling with my hands.


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I am so with you in spirit on being hopeless. Stay in touch here, it truly does help. Nobody else, not even your family truly understands and empathizes like someone who also has the disease.:wave:





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