Living with Neuropathy - Welcome to the group

It works really well for me with no side effects. If I am an hour late for a dose, the pain reminds me to take it. I have been taking it for eight years and nothing else works as well. Lyrica did not work for me.

@darlingtondoll @steeldove

Don't mean to chime in on your conversation. I certainly don't mean any disrespect. I have found that Lyrica works better for me than gabapentin. I have used it for about 13 years. I do have some side affects but nothing terrible like I've heard other people talk about. My issues began with a bad fall I took on my kitchen floor. It primarily works the pain associated with my spine. I have vertebrae in a couple different places slipping over the top of each other and 4 osteophytes (bone spurs) in my cervical area that are touching my spinal cord. It does help a little with my tethered cord and Tarlov cyst pain as well. I can't say that I notice much of a difference with the neuropathy though. I've had multiple doctors over the years tell me that everyone is "wired" differently and what works for one may not work for another. You just need to try different things to see if they help.

@steeldove @darlingtondoll @qball2019

I don't think we should identify a drug as a scam unless we can quote reputable medical literature to back up that claim. The article in the NYT criticizes prescribing practices, but does not claim Gabapentin itself is a scam. And how horrible is it that doctors are being discouraged from prescribing opioids and therefore forced to search for other options that may ultimately be completely ineffective 🙁

I am a bit sensitive about this topic because I remember being prescribed anti-depressants several decades ago, and virtually all of my close friends tried to convince me to stop taking it because they heard 'bad things' about anti-depressants. The truth of the matter is: That drug saved my life. Regardless of the horror stories my friends heard about anti-depressants, it literally saved my life. They obviously had no idea how depressed I was, how close to death I was - or they never would have tried to convince me to let go of my medically prescribed lifeline.

@steeldove @darlingtondoll @qball2019

I don't think we should identify a drug as a scam unless we can quote reputable medical literature to back up that claim. The article in the NYT criticizes prescribing practices, but does not claim Gabapentin itself is a scam. And how horrible is it that doctors are being discouraged from prescribing opioids and therefore forced to search for other options that may ultimately be completely ineffective 🙁

I am a bit sensitive about this topic because I remember being prescribed anti-depressants several decades ago, and virtually all of my close friends tried to convince me to stop taking it because they heard 'bad things' about anti-depressants. The truth of the matter is: That drug saved my life. Regardless of the horror stories my friends heard about anti-depressants, it literally saved my life. They obviously had no idea how depressed I was, how close to death I was - or they never would have tried to convince me to let go of my medically prescribed lifeline.

Time for a repeat about the Gabapentin "scam" : https://www.nytimes.com/2019/05/20/well/live/millions-take-gabapentin-for-pain-but-theres-scant-evidence-it-works.html

@steeldove and others

I tried every medication remotely close to effective in treating neuropathy pain, including Gabapentin, with either little to no effect or had unacceptable side effects. My siblings swear by it, but I felt nothing.

I haven't researched the charges made in the NYT article, and I've never heard claims that it has no effect on neuropathy pain. I wonder what qualifies the reporter to make the judgment calls made in the article. Obviously (so it seems to me) they don't have nerve pain that is intractable, or they don't have pain that's been brought under control by on or off label medications.

The bone they're picking appears to me to be that most doctors prescribe it in ignorance or indiscriminately, as they have historically done with opioids. I've read and heard many people say that it is an effective medication, enough so that I don't swallow everything the naysayers say or print. I'd like to know what people who are credible witnesses and who can cite credible tests would have to say.

It's hard to dismiss the testimonies of the many people whom it helps. Even though it didn't work for me, (and I don't remember what the side effects were that kept me from continuing to take it) it's certainly helped a lot of people. Is it possible that we're going to see a big political gaba scare that will put prescriptions at risk as happened with opioids? It's criminal to target those of us who have a history of taking the opioids and Gabapentin/Neurontin responsibly that our doctors promised would treat our pain. I'm disturbed that my PCP who had readily prescribed an opioid, specifically for pain, is now trying to get me to believe that it isn't intended to treat pain. Do I really look that dumb or gullible. The whole mess has me taking what my doctors are telling me with a gallon of salt.

Jim

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

@steeldove and others

I tried every medication remotely close to effective in treating neuropathy pain, including Gabapentin, with either little to no effect or had unacceptable side effects. My siblings swear by it, but I felt nothing.

I haven't researched the charges made in the NYT article, and I've never heard claims that it has no effect on neuropathy pain. I wonder what qualifies the reporter to make the judgment calls made in the article. Obviously (so it seems to me) they don't have nerve pain that is intractable, or they don't have pain that's been brought under control by on or off label medications.

The bone they're picking appears to me to be that most doctors prescribe it in ignorance or indiscriminately, as they have historically done with opioids. I've read and heard many people say that it is an effective medication, enough so that I don't swallow everything the naysayers say or print. I'd like to know what people who are credible witnesses and who can cite credible tests would have to say.

It's hard to dismiss the testimonies of the many people whom it helps. Even though it didn't work for me, (and I don't remember what the side effects were that kept me from continuing to take it) it's certainly helped a lot of people. Is it possible that we're going to see a big political gaba scare that will put prescriptions at risk as happened with opioids? It's criminal to target those of us who have a history of taking the opioids and Gabapentin/Neurontin responsibly that our doctors promised would treat our pain. I'm disturbed that my PCP who had readily prescribed an opioid, specifically for pain, is now trying to get me to believe that it isn't intended to treat pain. Do I really look that dumb or gullible. The whole mess has me taking what my doctors are telling me with a gallon of salt.

Jim

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

You are correct in your analogy of interviewing. My Neuro is a brilliant man but lacks bedside manner and empathy, unless I'm crying. I have felt trapped with him and because he is highly acclaimed, Im afraid to search for another who may not know as much or be as connected in the field as he. I go back for a follow up Wed after a slew of new blood tests which he tried to reply (via portal) by referring me to a Gastro Dr (for new findings) with not so much as even addressing the chief reason he did the blood work up in the first place...my heightened pain and failing body. This is what I mean. UGH! Because I know my stuff and generally come in prepared, he appears to be put off. I am polite in my presentation except when I get beyond frustrated or scared. That may result in tears or mild sass. Anyway, thanks for the advice. We all continue to help each other through experience. Unfortunately, I do not know specifically the nerves along the top of a foot but do know that mine burn and are painful from any form of flexing or pressure such as snug shoes, walking, standing, driving etc... which is why I cant drive, stand long or walk much. For me, due to Small Fiber Poly Neuropathy.