CRPS - anyone suffering with complex regional pain syndrome

Hi ,
Wishing you all less pain and lots of healing. I’m new here and newly diagnosed with CRPS. I’ve been reading a ton- learning as much as possible. After a doctor seemed clueless about CRPS ( though did concur with CRPS diagnosis), I found one that is consulting with me soon. He seems like he is very versed in CRPS. I do not have pain -only extremely stiff finger joints and immobility of wrist and fingers, shiny stretched skin on my dominant hand. I had the intense on fire with entire body trembling, burning (13 on pain scale) when too tightly casted and then wrapped too tight after surgery. I’m hoping to not ever experience that again. It began after a simple wrist fracture that was casted wrong ( had dropped hand and palsied arm). I’m an active person yet didn’t get out of bed for 2 months.

Hello @livelifes and welcome to Mayo Clinic Connect. That is great news that you have found a doctor well-versed in CRPS and that you are meeting with him soon.

Your wrist cast was casted too tightly and that was the cause for you? How soon after being casted did you experience the symptoms set in?

Thanks for your reply. Actually, I was casted with wrist drop which was problematic for finger ROM in an ortho urgent care- then splinted by hand surgeon slightly less of a wrist drop, then corrected in neutral ( correct position) but too tight. I began to have tingling and numbness within a few days. Then had an emergency surgery and had the burning pain a few days later ( also bandaged too tight).

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.

Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

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.