Neurontin is a scam: I knew it!

[Mama_Tiger]

I have some painful nerve damage in my foot, and the hypersensitivity along part of my foot was so severe that I would wake up every night not even able to abide the touch of the sheet on my foot, and could barely stand to wear any shoes or anything else on my feet.

Since the neurologist put me on Neurontin several months ago, the effects have been truly wonderful. I lay down and slept through the night the first night, and have not once been troubled by that hypersensitivity in the ensuing months. It has really made a huge difference in my life, for seemingly such a small thing.

I don’t know if it’s a cure-all, but for the uses it’s recommended for, it can truly make a big difference. I know that it has improved the quality of my life just by allowing me peaceful sleep for the first time in several years, not a small thing.

[Qadgop_the_Mercotan]

@tygerbryght

How about this? I would like to see some proposed pathway this drug employs to relieve pain.

We don’t know yet. For centuries we didn’t know how aspirin and opiates relieved pain either. Yet we used them.

I think that in claiming it to be useful for as many different problems as, say, aspirin is, the manufacturer has engaged in exploitative behavior by promoting its use for so very many off-label conditions. I’m glad for anybody with an off-label condition which responds (or appears to) to this med, but I have trouble believing it is the drug itself which is causing the improvement in all of those cases.

I thought they were just pushing it for neuropathic pain. Unapproved yes, illegal yes, but certainly evidence is indicating it works well for this type of pain. It would be a shame to lose a useful drug because of idiocy and illegality by the pharmaceutical industry.

*TMI warning: I have managed to keep it that way through using annual bilateral radiofrequency treatments for my neck, my low back, and my sacroiliac, plus caudal injections of steroids. (Neck and low back were separately injured; the one in an automobile accident, the other in a slip-and-fall. My SI/pelvic problems are probably related to a patent malformation of the neck of my left femur, which the ortho who did my hip replacement said probably wrecked first my knee, then my hip.) And, just to complicate matters, I have DISH (Diffuse Idiopathic Skeletal Hyperostosis).

Sounds like a lot of your pain is not neuropathic in origin then. Which means neurontin unfortunately wouldn’t help you, as you discovered. I truly hope better pain management techniques and meds are found to help you and those with your type of pain syndrome.

[tygerbryght]

@Qadgop the Mercotan

…
Sounds like a lot of your pain is not neuropathic in origin then. Which means neurontin unfortunately wouldn’t help you, as you discovered. I truly hope better pain management techniques and meds are found to help you and those with your type of pain syndrome.

Thanks, but I’d gladly accept a postponement in that, if it would buy help for “aging” Cerebal palsy patients. I have an e-friend in Florida who is 40, and although her CP was never ‘all that bad’ (she managed to earn two degrees, and worked for several years as a social worker), her body seems to be falling apart around her. She told me several years ago that in the last decade or two, as the earliest CP patients lived longer and longer, doctors began to document that their bodies usually began to fail them in ways that resemble the aging process by their early 30s, with many dying before reaching her age. As if she needed more challenges, she and her husband were seriously rear-ended by a drunk driver about 5 years ago - so badly that she had to have surgery on her neck.

She still grits her teeth and does as much as she can, but in the last three years I have sadly noted that each year she is able to do less and less. And suffers more and more. As bothersome as my pain is, I don’t think it’s really as bad as Lisa’s. And I’ve had 20 more years to live, with prospects of another 20 or more ahead. I’d gladly give her half, if she could live them more comfortably.

From various pages on the UCP website:

There are major research programs being conducted on the aging process and on the dysfunctions associated with aging. However, very few of these programs specifically address the problems of older persons with disabilities due to cerebral palsy. This is true despite this Foundation’s active but unsuccessful solicitation of research grant applications in this area. We will continue to try to focus attention on the problems and needs of older persons with cerebral palsy.

Anyone who looks at these links I’m providing will note that there is nothing really recent.

and

Aging-a natural concept, really. We get older. We notice changes in our bodies, beginning with decrease in energy and mobility. Our joints and muscles hurt. We may develop osteoporosis. The arthritis sets in. And we may even experience bowel and bladder problems. All of this results in the loss of independence and many times the onset of depression. But we tell ourselves that aging is a natural process. After all, that’s how a sixty- or seventy-year-old body feels, right? The problem for people aging with cerebral palsy is that they’re not in their sixties or seventies when these worrisome problems begin to happen. They are in their thirties and forties. Some of them even experience symptoms of premature aging beginning in their late twenties. The following are some of the documented physical, social, and psychological stresses experienced by individuals with cerebral palsy as they age

Also see Physiological Burn-Out and Funct1onal Skill Loss in Cerebral Palsy
Caution: Contains some heartrending case histories.

and An Introduction to Ageing and Cerebral Palsy

Upon rereading some of this, it makes me wonder whether Neurontin might not help with Lisa’s pain. Though I wouldn’t blame her for balking at yet another pill. She already has 12 different daily meds. :eek: