My wife has had a chronic neuropathic pain condition since 2008, and this is pretty accurate. One of the interesting aspects of chronic pain is that there’s no way to measure it - no way for a doctor to know how much pain a person is in other than to ask, and the answer is inherently subjective. I’ve seen with my wife that clearly the pain itself can vary, with one day being better or worse than the prior, but also her ability to deal with it varies. If she’s tired, emotional, or cranky, the same amount of pain can be untenable.
They sometimes use antidepressants for neuropathic pain, and as I understand it the thinking is that they influence how pain is proceeded in the brain, but I always wonder if part of the success is simply that people on antidepressants get less derailed by a given level of pain.
I have genitofemoral neuropathy. This is a totally accurate description. The location of the pain sometimes causes me to kick into fight or flight without awareness. I take Neurontin just to keep the edge off and reduce the reaction to the pain. Sometimes I think my pain is only a 4 or 5, but my blood pressure reading will prove otherwise. It’s oddly tolerable at times, and “lock myself away from the world so I’m not a total asshole” other times.
It is. Thanks. It’s improved over the years. Either it’s healing or I’m becoming more tolerant. My neurologist said either is possible, so I’m optimistic.
Wouldn’t it be cool if there was some sort of gauge they could use to see which of those it was?
There was a while when I thought my wife was getting better. Then one night she took off her socks and one of her toes was black and swollen. It turned out that she had stumbled on the stairs earlier in that day, and apparently had broken her toe, but she didn’t realize because the constant pain in the other leg and foot was enough that the broken toe didn’t really stand out.
I do think she’s gotten a bit better over the last year or so, but it’s so hard to know if it’s that or she’s acclimated to the pain.
Oof. That sounds awful. I also understand how that would happen. My damaged nerve services the lower portion of my abdominal cavity, groin, and upper thighs, so I tend to have problems dismissing gastrointestinal issues. A couple years ago, I suddenly became super distended. Like a skinny guy with a basketball under his shirt. It turned out that I had an intestinal intususpeption that basically closed off my tract and inflated me like a balloon. I would’ve noticed the pain way earlier if I didn’t have jumper cables on my nuts. Lol
It’s amazing how little neurologists are willing to commit to certainty of any kind. I’ve gone to several, and all I get is speculation and hope. Has your wife had the same experience?
Yeah, similar. She has CRPS, and they just don’t understand that very well. Since it’s neuropathic, most drugs don’t do much and she doesn’t like the side effects anyway. They used to call it the suicide disease because so many people would just kill themselves rather than deal with the unending, untreatable pain. Treatments have gotten somewhat better though. Still, most doctors don’t know what to do with her.
I just looked it up. It sounds awful. I’m sorry she has to deal with that, especially having so little information. I’m frustrated with the level of support I get for my trauma, but at least they can give me some definitive understanding of the mechanics. I really hope they learn more about her condition.
My wife has had a chronic neuropathic pain condition since 2008, and this is pretty accurate. One of the interesting aspects of chronic pain is that there’s no way to measure it - no way for a doctor to know how much pain a person is in other than to ask, and the answer is inherently subjective. I’ve seen with my wife that clearly the pain itself can vary, with one day being better or worse than the prior, but also her ability to deal with it varies. If she’s tired, emotional, or cranky, the same amount of pain can be untenable.
They sometimes use antidepressants for neuropathic pain, and as I understand it the thinking is that they influence how pain is proceeded in the brain, but I always wonder if part of the success is simply that people on antidepressants get less derailed by a given level of pain.
I have genitofemoral neuropathy. This is a totally accurate description. The location of the pain sometimes causes me to kick into fight or flight without awareness. I take Neurontin just to keep the edge off and reduce the reaction to the pain. Sometimes I think my pain is only a 4 or 5, but my blood pressure reading will prove otherwise. It’s oddly tolerable at times, and “lock myself away from the world so I’m not a total asshole” other times.
Oh, man, that’s a tough one - sorry to hear it.
It is. Thanks. It’s improved over the years. Either it’s healing or I’m becoming more tolerant. My neurologist said either is possible, so I’m optimistic.
Wouldn’t it be cool if there was some sort of gauge they could use to see which of those it was?
There was a while when I thought my wife was getting better. Then one night she took off her socks and one of her toes was black and swollen. It turned out that she had stumbled on the stairs earlier in that day, and apparently had broken her toe, but she didn’t realize because the constant pain in the other leg and foot was enough that the broken toe didn’t really stand out.
I do think she’s gotten a bit better over the last year or so, but it’s so hard to know if it’s that or she’s acclimated to the pain.
Oof. That sounds awful. I also understand how that would happen. My damaged nerve services the lower portion of my abdominal cavity, groin, and upper thighs, so I tend to have problems dismissing gastrointestinal issues. A couple years ago, I suddenly became super distended. Like a skinny guy with a basketball under his shirt. It turned out that I had an intestinal intususpeption that basically closed off my tract and inflated me like a balloon. I would’ve noticed the pain way earlier if I didn’t have jumper cables on my nuts. Lol
It’s amazing how little neurologists are willing to commit to certainty of any kind. I’ve gone to several, and all I get is speculation and hope. Has your wife had the same experience?
Yeah, similar. She has CRPS, and they just don’t understand that very well. Since it’s neuropathic, most drugs don’t do much and she doesn’t like the side effects anyway. They used to call it the suicide disease because so many people would just kill themselves rather than deal with the unending, untreatable pain. Treatments have gotten somewhat better though. Still, most doctors don’t know what to do with her.
I just looked it up. It sounds awful. I’m sorry she has to deal with that, especially having so little information. I’m frustrated with the level of support I get for my trauma, but at least they can give me some definitive understanding of the mechanics. I really hope they learn more about her condition.
Thanks, me too!