CRPS - anyone suffering with complex regional pain syndrome

CRPS can move into the abdomen and intestines.

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Dr’s just want to fix the symptoms so that is no help at all I am lost as to how to manage this very frustrating

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Yeah, but if it is CRPS related, it needs to be managed in the whole scope of things. It means your CRPS is progressing. THAT needs to be addressed as well, especially if it hasn't been for awhile. NEW EVENT! Yes, you need to manage the symptoms but if it's CRPS related that may be harder to do than just tossing meds at it. CRPS is BRAIN CONTROLLED not GI controlled, You may need to increase fiber in your diet vs taking a pill. Get me?

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Yes I do but it’s very hard to talk to doctors that don’t know much about CRPS I have to be proactive for myself and look for my own answers I am very careful about my diet especial now just lost as to what to do

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I have received a diagnosis, which seems to be the most difficult leg of this incredibly wonderful (Sarcasm doesn't come through in text... but you can be assured, it's there) rollercoaster. This all started with a broken leg, fibular fracture, that my initial "surgeon" allowed to manifest into one heck of a nasty infection over the course of a year and a half. My wife, using the doctors at the Mayo Clinic, saved my life by forcing a second opinion. After all of the antibiotics and debridement surgeries (ya, more than one.) I started exhibiting symptoms of CRPS. Started in the shower. As soon as the water from the shower head hit my foot, my entire world came to a screeching halt. So, before collapsing in the tub and writhing in agony, I pondered, "... that's weird, I thought I turned the water on and someone must've replaced the water in the tank with already on-fire gasoline." The next two hours in the bath tub were pretty rough.
More to the point, though. I've received two different sympathetic nerve blocks through injections, one in my lumbar/spine and the other at my knee. The relief from the injections was so intense I openly wept without regard for decorum and it was awesome, for about an hour. Then I gradually slipped back into my new normal, which is pain. Debilitating, overwhelming, ever-changing and excruciating pain. The "On a scale of 1-10" schtick that every P.A. starts any appointment off with is usually an invitation for me to dive into a diatribe of innocuous drivel about how pain scales on a ten-point basis are ineffective, irrelevant and subjective.
10. It's a 10. I've become so brow-beaten by several different broken systems and I have very little fight left in me, so I tend to just stare at the wall and wait for the doctor to say whatever they've already decided they're going to say before feigning to listen. I don't know what part of the brain generates empathy, well that's a lie its the right supramarginal gyrus, but I digress. My point is, most physicians that I have encountered aren't interested in my input at all. Vanity seems to be the causation here, but I could be wrong. I have a fairly high IQ, which is always received by physicians as a threat of some kind to their superiority.
So, now my Doc at Mayo had scheduled the surgery to implant a neurostimulator that would have most likely generated some semblance of relief in my life and my insurance provider is refusing to cover the procedure because it is "experimental". Which, I don't understand how since it's been around since '65, but I'm just one human represented as a number to Cigna (Health insurance).
Which leads me to here. I was wondering if anyone else has encountered this issue? Every other story I read is a long one as well, which is terribly sad, because there seems to be a lot more of us than is being represented. Anyway, I can't work.. I can barely make sure I eat something every day(lack of drive, not in need) and the social security administration arbitrarily decided that I'm not disabled, even though every doctor I see seems to believe otherwise. How is it that the SS is more qualified to make a medical decision than a team of physicians at the Mayo Clinic?
The Mayo is doing great by me and I wouldn't be here without 'em. It just seems like there's this general belief that I'm playing hooky or something by everyone else involved, causing roadblocks, detours and round-a-bouts.
In the interim, I sit in agonizing pain and just stew; worrying that I'll be forced to continue on subsisting like this.

Jump to this post

I have received a diagnosis, which seems to be the most difficult leg of this incredibly wonderful (Sarcasm doesn't come through in text... but you can be assured, it's there) rollercoaster. This all started with a broken leg, fibular fracture, that my initial "surgeon" allowed to manifest into one heck of a nasty infection over the course of a year and a half. My wife, using the doctors at the Mayo Clinic, saved my life by forcing a second opinion. After all of the antibiotics and debridement surgeries (ya, more than one.) I started exhibiting symptoms of CRPS. Started in the shower. As soon as the water from the shower head hit my foot, my entire world came to a screeching halt. So, before collapsing in the tub and writhing in agony, I pondered, "... that's weird, I thought I turned the water on and someone must've replaced the water in the tank with already on-fire gasoline." The next two hours in the bath tub were pretty rough.
More to the point, though. I've received two different sympathetic nerve blocks through injections, one in my lumbar/spine and the other at my knee. The relief from the injections was so intense I openly wept without regard for decorum and it was awesome, for about an hour. Then I gradually slipped back into my new normal, which is pain. Debilitating, overwhelming, ever-changing and excruciating pain. The "On a scale of 1-10" schtick that every P.A. starts any appointment off with is usually an invitation for me to dive into a diatribe of innocuous drivel about how pain scales on a ten-point basis are ineffective, irrelevant and subjective.
10. It's a 10. I've become so brow-beaten by several different broken systems and I have very little fight left in me, so I tend to just stare at the wall and wait for the doctor to say whatever they've already decided they're going to say before feigning to listen. I don't know what part of the brain generates empathy, well that's a lie its the right supramarginal gyrus, but I digress. My point is, most physicians that I have encountered aren't interested in my input at all. Vanity seems to be the causation here, but I could be wrong. I have a fairly high IQ, which is always received by physicians as a threat of some kind to their superiority.
So, now my Doc at Mayo had scheduled the surgery to implant a neurostimulator that would have most likely generated some semblance of relief in my life and my insurance provider is refusing to cover the procedure because it is "experimental". Which, I don't understand how since it's been around since '65, but I'm just one human represented as a number to Cigna (Health insurance).
Which leads me to here. I was wondering if anyone else has encountered this issue? Every other story I read is a long one as well, which is terribly sad, because there seems to be a lot more of us than is being represented. Anyway, I can't work.. I can barely make sure I eat something every day(lack of drive, not in need) and the social security administration arbitrarily decided that I'm not disabled, even though every doctor I see seems to believe otherwise. How is it that the SS is more qualified to make a medical decision than a team of physicians at the Mayo Clinic?
The Mayo is doing great by me and I wouldn't be here without 'em. It just seems like there's this general belief that I'm playing hooky or something by everyone else involved, causing roadblocks, detours and round-a-bouts.
In the interim, I sit in agonizing pain and just stew; worrying that I'll be forced to continue on subsisting like this.

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@kaynine Welcome to Mayo Clinic Connect. It's been a long journey regarding your CRPS and you are still in debilitating pain.

You will see that I have moved your question into a discussion where members are currently discussing CRPS so you could more quickly connect and get support. You will notice members like @misskit @faithwalker007 @missbiss @smallengineguy @csteel have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the comments to find previously shared suggestions.

Regarding your insurance coverage, has your provider mentioned another kind of surgery/treatment options since this particular surgery is not a covered procedure?

Jump to this post

I have received a diagnosis, which seems to be the most difficult leg of this incredibly wonderful (Sarcasm doesn't come through in text... but you can be assured, it's there) rollercoaster. This all started with a broken leg, fibular fracture, that my initial "surgeon" allowed to manifest into one heck of a nasty infection over the course of a year and a half. My wife, using the doctors at the Mayo Clinic, saved my life by forcing a second opinion. After all of the antibiotics and debridement surgeries (ya, more than one.) I started exhibiting symptoms of CRPS. Started in the shower. As soon as the water from the shower head hit my foot, my entire world came to a screeching halt. So, before collapsing in the tub and writhing in agony, I pondered, "... that's weird, I thought I turned the water on and someone must've replaced the water in the tank with already on-fire gasoline." The next two hours in the bath tub were pretty rough.
More to the point, though. I've received two different sympathetic nerve blocks through injections, one in my lumbar/spine and the other at my knee. The relief from the injections was so intense I openly wept without regard for decorum and it was awesome, for about an hour. Then I gradually slipped back into my new normal, which is pain. Debilitating, overwhelming, ever-changing and excruciating pain. The "On a scale of 1-10" schtick that every P.A. starts any appointment off with is usually an invitation for me to dive into a diatribe of innocuous drivel about how pain scales on a ten-point basis are ineffective, irrelevant and subjective.
10. It's a 10. I've become so brow-beaten by several different broken systems and I have very little fight left in me, so I tend to just stare at the wall and wait for the doctor to say whatever they've already decided they're going to say before feigning to listen. I don't know what part of the brain generates empathy, well that's a lie its the right supramarginal gyrus, but I digress. My point is, most physicians that I have encountered aren't interested in my input at all. Vanity seems to be the causation here, but I could be wrong. I have a fairly high IQ, which is always received by physicians as a threat of some kind to their superiority.
So, now my Doc at Mayo had scheduled the surgery to implant a neurostimulator that would have most likely generated some semblance of relief in my life and my insurance provider is refusing to cover the procedure because it is "experimental". Which, I don't understand how since it's been around since '65, but I'm just one human represented as a number to Cigna (Health insurance).
Which leads me to here. I was wondering if anyone else has encountered this issue? Every other story I read is a long one as well, which is terribly sad, because there seems to be a lot more of us than is being represented. Anyway, I can't work.. I can barely make sure I eat something every day(lack of drive, not in need) and the social security administration arbitrarily decided that I'm not disabled, even though every doctor I see seems to believe otherwise. How is it that the SS is more qualified to make a medical decision than a team of physicians at the Mayo Clinic?
The Mayo is doing great by me and I wouldn't be here without 'em. It just seems like there's this general belief that I'm playing hooky or something by everyone else involved, causing roadblocks, detours and round-a-bouts.
In the interim, I sit in agonizing pain and just stew; worrying that I'll be forced to continue on subsisting like this.

Jump to this post