Ondine
Bluelighter
Hi all,
So I underwent surgery to remove hardware from my foot (5 screws and a plate in my heel) two weeks ago. I'd been experiencing minor discomfort and nerve pain with the hardware in and decided to get it taken out as early as possible in the hope that it would alleviate that pain and make it easier for me to sleep.
Unfortunately, I awoke from the surgery in excruciating pain and entered into what everyone thought at the time was a delirium induced by the anesthesia. I have little recollection beyond the pain, but I tore skin from my chest and arms with my nails and had to be restrained and sedated. I ended up having to remain in the hospital for two extra days.
It now appears that what was thought to be delirium was likely a very intense manic episode caused by the precipitation of bipolar disorder (genetic in my Mom's side) and exacerbated by the pain. I've had quite a few of these attacks since then, with some being very intense and lasting for hours, and some being stoppable through will power alone. I'm beginning treatment with depakote and seroquel today, which will hopefully bring in some stability.
Unfortunately, the pain in my foot, which I originally characterized as a 10 on the pain scale while I was first in the hospital, has only gotten worse. I'd call it something like an 18 now, but I guess that's confusing to doctors and nurses somehow, so I still call it a 10. The pain was originally localized in my toes and the front half of my foot, characterized as an constant, intense burning, crushing feeling, with skin sensitivity, and frequently a shooting pain like an electric shock that would go up to my mid shin. Now the pain has progressed to the whole of my foot, with the shoot pain reaching my thigh. After seeing my surgeon twice and being told to tough it out (I'd had distantly related pain with the original injury due to a build up of lymphatic fluid), and being given an inadequate amount of pain killers (15mg of oxycodone, 4 times a day), I asked for, and was given a referral to a pain clinic. I went to my first appointment this morning, and was told that they were fairly certain I had CRPS, which was what I had feared. They offered to perform a sympathetic nerve block, and I accepted, just willing to try anything that would help. Unfortunately, the nerve block did little else than make me loopy and uncomfortable. At the same time, they prescribed a course of high dose steroids (though I need to wait for the okay from my surgeon before I can get it filled), and a specialized kind of topical cream that will arrive in 2-3 weeks. As I've read online and as they've described to me, these are all treatments that sometimes work on CRPS. They don't really understand it, and thus, don't have an effective treatment.
They scheduled my next appointment at the pain clinic for two weeks and it nearly broke my heart. I'm 21 years old and living with my parents currently while I recover. Both fortunately and unfortunately, my mother is a physician. She's very knowledgeable and a sweet person, but also conservative and uptight when it comes to prescribing medicine. She won't let me handle my own medication, and insists on sitting in during all of my doctors appointments, the result being that I'm afraid to ask for a stronger dose or kind of opioid from my doctor. The few times that I have the guts to, she passive aggressively undercuts me and discourages the doctor from making any changes.
When I went to the pain clinic, I had hoped that they would bring this up and offer to discuss changing the medication I was on, but they didn't, and I can't handle it. I don't believe that I can withstand another 2 weeks in this amount of pain, especially since it seems to be increasing, so I've decided that I need to make a plan.
I've read several articles on methadone claiming it to be the best opioid to treat neuropathic pain due to its effect on NMDA receptors. I feel like I need a plan to go about asking for it, or at least a plan to ask about switching to morphine, dilaudid, opana or fentanyl. I know I might need to go around my Mom to do this, and it's stressful, so any advice people could give, about asking about painkillers, or even personal experience with specific opiates and CRPS or nerve pain would be greatly appreciated.
I've researched other treatments extensively, but would also love to hear about anyone's personal experiences with a treatment that wasn't an opiate. I know that they aren't a cure for the syndrome, and that they don't specifically treat nerve pain. But I'm feeling like I'm hanging on by a thread here, and I need at least some relief, even if it's only temporary.
So I underwent surgery to remove hardware from my foot (5 screws and a plate in my heel) two weeks ago. I'd been experiencing minor discomfort and nerve pain with the hardware in and decided to get it taken out as early as possible in the hope that it would alleviate that pain and make it easier for me to sleep.
Unfortunately, I awoke from the surgery in excruciating pain and entered into what everyone thought at the time was a delirium induced by the anesthesia. I have little recollection beyond the pain, but I tore skin from my chest and arms with my nails and had to be restrained and sedated. I ended up having to remain in the hospital for two extra days.
It now appears that what was thought to be delirium was likely a very intense manic episode caused by the precipitation of bipolar disorder (genetic in my Mom's side) and exacerbated by the pain. I've had quite a few of these attacks since then, with some being very intense and lasting for hours, and some being stoppable through will power alone. I'm beginning treatment with depakote and seroquel today, which will hopefully bring in some stability.
Unfortunately, the pain in my foot, which I originally characterized as a 10 on the pain scale while I was first in the hospital, has only gotten worse. I'd call it something like an 18 now, but I guess that's confusing to doctors and nurses somehow, so I still call it a 10. The pain was originally localized in my toes and the front half of my foot, characterized as an constant, intense burning, crushing feeling, with skin sensitivity, and frequently a shooting pain like an electric shock that would go up to my mid shin. Now the pain has progressed to the whole of my foot, with the shoot pain reaching my thigh. After seeing my surgeon twice and being told to tough it out (I'd had distantly related pain with the original injury due to a build up of lymphatic fluid), and being given an inadequate amount of pain killers (15mg of oxycodone, 4 times a day), I asked for, and was given a referral to a pain clinic. I went to my first appointment this morning, and was told that they were fairly certain I had CRPS, which was what I had feared. They offered to perform a sympathetic nerve block, and I accepted, just willing to try anything that would help. Unfortunately, the nerve block did little else than make me loopy and uncomfortable. At the same time, they prescribed a course of high dose steroids (though I need to wait for the okay from my surgeon before I can get it filled), and a specialized kind of topical cream that will arrive in 2-3 weeks. As I've read online and as they've described to me, these are all treatments that sometimes work on CRPS. They don't really understand it, and thus, don't have an effective treatment.
They scheduled my next appointment at the pain clinic for two weeks and it nearly broke my heart. I'm 21 years old and living with my parents currently while I recover. Both fortunately and unfortunately, my mother is a physician. She's very knowledgeable and a sweet person, but also conservative and uptight when it comes to prescribing medicine. She won't let me handle my own medication, and insists on sitting in during all of my doctors appointments, the result being that I'm afraid to ask for a stronger dose or kind of opioid from my doctor. The few times that I have the guts to, she passive aggressively undercuts me and discourages the doctor from making any changes.
When I went to the pain clinic, I had hoped that they would bring this up and offer to discuss changing the medication I was on, but they didn't, and I can't handle it. I don't believe that I can withstand another 2 weeks in this amount of pain, especially since it seems to be increasing, so I've decided that I need to make a plan.
I've read several articles on methadone claiming it to be the best opioid to treat neuropathic pain due to its effect on NMDA receptors. I feel like I need a plan to go about asking for it, or at least a plan to ask about switching to morphine, dilaudid, opana or fentanyl. I know I might need to go around my Mom to do this, and it's stressful, so any advice people could give, about asking about painkillers, or even personal experience with specific opiates and CRPS or nerve pain would be greatly appreciated.
I've researched other treatments extensively, but would also love to hear about anyone's personal experiences with a treatment that wasn't an opiate. I know that they aren't a cure for the syndrome, and that they don't specifically treat nerve pain. But I'm feeling like I'm hanging on by a thread here, and I need at least some relief, even if it's only temporary.
