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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Oct 25 3:58am | Replies (366)Comment receiving replies
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.
Replies to "I have received a diagnosis, which seems to be the most difficult leg of this incredibly..."
@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?
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?
@kaynine I read, and then reread, and then reread your post. Your writing skills are impeccable, and they reflect terrible frustration, extreme anger, and some sadness. I feel for you. I really do. I also have intense pain from foot neuropathy. It never ends, and never will. I have some suggestions; first, fight Social Security again, to get your disability. Be a squeaky wheel, all the time. Be very careful of spinal cord stimulators. I had a DRG stimulator implanted 4 months ago, and even though I had a successful trial, the stimulator barely helps me. I also feel electricity in places that I should not be feeling it, and it is very uncomfortable. It has been impossible to get the amount of electric current right. Really look for blogs, from real people, about their experiences with the device you are considering. I have learned, from studying many stimulators, that complains about them are rampant. God, if your stimulator would help, it would be a blessing. Try using Kratom for pain. Write to me personally, if you want to know about it. It is a leaf from SE trees in Asia, and is not FDA approved. And most of all, try to find intense distractions that keep you engaged enough to not have pain be the primary focus. This is damn hard, but it does help if you find things that totally interest you. For me, it is taking IQ tests on line, learning more Spanish, and writing parodies to songs. Rough stuff, but you have to teach your brain to focus on other things, as best you can. This is all a bitch. LoriRenee1
I hear you and identify with much of your story!
I have a complicated story too (probably like most people here). I have been in chronic pain for nearly 5 years as a result of a botched shoulder/bicep surgery (not at Mayo). The surgery left me with nerve damage, structural shoulder damage and now CRPS. I have had 2 corrective surgeries to remove scar tissue on my shoulder, bicep and medial nerves near my bicep. I have had 10-12 nerve blocks, 5-6 steroid injections, countless hours of PT, and just spent 5 days at Stanford having Ketamine infusions. I spent 100 days at Stanford in the last 18 months seeing doctors having MRI's etc. All of this has left me in more and more pain. I am 64 and was a very good athlete but now I can barely use my right arm. Any movement or resistance irritates my arm/nerves. My World is upside down because movement is bad not good (ugh!). I am in so much pain that I need to lie in bed most of the day and ice my arm to cope. I take Lyrica (100 mg/3xday), Hydrocodone, and Lorazepam (to sleep). The only tangible step that I have left is putting in a DRG (dorsal root ganglion) stimulator. I saw that you are looking at a spinal cord stimulator and thought I would mention that some doctors feel DRG stimulation is superior to SCS for CRPS. It took my insurance company 3-4 months to approve the stimulator. I am not certain I want to move forward with it. I am concerned that because I have multiple causes of my pain (nerve, shoulder, crps) and the doctors at Stanford have not been able to isolate exactly which nerves are involved, that it would be a miracle for a stimulator placed in 1 or 2 locations in my spine to impact all of the damaged areas in my arm/shoulder. I am also a bit gun shy because everything I have done up to this point has exacerbated my pain. I know the right thing to say is that I won't let my pain own me, but right now that would be a lie. I have lots of confidence and am an accomplished person, but pain has a way of humbling the best of us. Right now my pain is winning. I wish that wasn't the truth, but it is. I haven't given up, but this is quite a fight.
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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.