CRPS - anyone suffering with complex regional pain syndrome

Hi
I was diagnosed w/CRPS 1.5 years ago. My pain is in my foot. ( no injury). I’ve been tried on gabapentin lyrica and now savella w/no help. I had sympathetic nerve block w
/relief & had a stimulator place a year ago ( my insurance paid). Stimulator decreased my pain a little. I’ve tried physical therapy, chiropractor and pain Mgmt. I find most doctors shrug their shoulders & don’t know what to do with me. This is extremely depressing and like you find many days don’t feel like eating. I went from being very active to unable to walk half a block. I hope you find some relief soon.

I’m glad you’re here. Welcome.

First, let me say this. THANK GOD YOU HAVE A DIAGNOSIS. Second, now you have a place to leap from.
Is your journey going to be easy? No. Has it already? I’m not one to blow sunshine up your butt. CRPS has taken my life and turned it upside down. But I’ve decided it will not destroy it. What say you?

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

Hi
I was diagnosed w/CRPS 1.5 years ago. My pain is in my foot. ( no injury). I’ve been tried on gabapentin lyrica and now savella w/no help. I had sympathetic nerve block w
/relief & had a stimulator place a year ago ( my insurance paid). Stimulator decreased my pain a little. I’ve tried physical therapy, chiropractor and pain Mgmt. I find most doctors shrug their shoulders & don’t know what to do with me. This is extremely depressing and like you find many days don’t feel like eating. I went from being very active to unable to walk half a block. I hope you find some relief soon.

I’ve was diagnosed with CRPS two years ago after a hard and long painful search for answers. 9 doctors shrugging their shoulders, one giving up, another telling me it was in my head, another saying I was only a drug seeker, another saying it was only my knee replacement rehab (yeah, I can’t control my foot and it’s on fire and I can barely stand to touch it because I’m in rehab? Try again.)
I kept going like you and finally found someone who knew what to look for and was told the truth although yes, I wasn’t ready to hear it either.
But like you, I am smart enough to know the truth when I hear it. I guess intelligence and education can be a double-edged sword. 20 years in pharmacy (at that time) and healthcare told me that my career and way of life was over (I was the only breadwinner due to the fact my husband’s disabled as well.) I crashed and hard.
But when healthcare turned their backs on us later, I began to grow as angry as you are right now. What had we done to meet out this punishment from the community I’d devoted my life to?
You are beginning a new day. You have reason to be angry and hurt. Grieve now. I’m here to listen and be a sounding board when your family and friends don’t or can’t understand.
But move along and move ahead.
You are not your pain.
You are who you are, PAIN INCLUDED.
And now you are a warrior.

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.

I’ve was diagnosed with CRPS two years ago after a hard and long painful search for answers. 9 doctors shrugging their shoulders, one giving up, another telling me it was in my head, another saying I was only a drug seeker, another saying it was only my knee replacement rehab (yeah, I can’t control my foot and it’s on fire and I can barely stand to touch it because I’m in rehab? Try again.)
I kept going like you and finally found someone who knew what to look for and was told the truth although yes, I wasn’t ready to hear it either.
But like you, I am smart enough to know the truth when I hear it. I guess intelligence and education can be a double-edged sword. 20 years in pharmacy (at that time) and healthcare told me that my career and way of life was over (I was the only breadwinner due to the fact my husband’s disabled as well.) I crashed and hard.
But when healthcare turned their backs on us later, I began to grow as angry as you are right now. What had we done to meet out this punishment from the community I’d devoted my life to?
You are beginning a new day. You have reason to be angry and hurt. Grieve now. I’m here to listen and be a sounding board when your family and friends don’t or can’t understand.
But move along and move ahead.
You are not your pain.
You are who you are, PAIN INCLUDED.
And now you are a warrior.

Thank you very much for your reply. I have been about as squeaky as a wheel can get with the SS (I like dropping the A because it likens them to Nazis and that comforts me for some weird reason). Have not looked into Kratom. I do have a prescription for Cannabis, here in Florida, that I'm convinced has saved my life and has definitely saved my sanity, thus far.