CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Faithwalker007 (Renee) | @faithwalker007 | Nov 24, 2020

In reply to @misskit "Hi I was diagnosed w/CRPS 1.5 years ago. My pain is in my foot. ( no..." + (show)

Don’t let your pain rule your life. Get a scooter for mobility if you don’t have one! Pain is not your life. CRPS is not you, it’s your diagnosis.

Faithwalker007 (Renee) | @faithwalker007 | Nov 24, 2020

In reply to @faithwalker007 "I’m glad you’re here. Welcome. First, let me say this. THANK GOD YOU HAVE A DIAGNOSIS...." + (show)

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.

Faithwalker007 (Renee) | @faithwalker007 | Nov 24, 2020

In reply to @missbiss "Dr’s just want to fix the symptoms so that is no help at all I am..." + (show)

And they can’t surgically touch us lol what a conundrum we are to them! Sorry...

Erika | @erikas | Nov 24, 2020

In reply to @misskit "Hi I was diagnosed w/CRPS 1.5 years ago. My pain is in my foot. ( no..." + (show)

@misskit Welcome to Mayo Connect. You have been recently diagnosed with CRPS but you have found little relief from pain and, "most doctors shrug their shoulders & don’t know what to do with" you. You also were previous very active and now you are unable, "to walk half a block."

Mayo Clinic Connect is a place to connect with members like @misskit @faithwalker007 @missbiss @smallengineguy @csteel that have previously discussed this topic.

It sounds like you have tried physical therapy, chiropractor and pain management. May I ask if pain management is the same or similar to a pain clinic?

lorirenee1 | @lorirenee1 | Nov 24, 2020

In reply to @faithwalker007 "I’ve was diagnosed with CRPS two years ago after a hard and long painful search for..." + (show)

@faithwalker You are so inspirational. Your mind, wit, intelligence, spirit; sharp as a tack. And so good with words! YOU RISE!!!!!! I am sure not all the time, but man, YOU RISE!!!!! I just love you, Renee, LoriRenee1

lorirenee1 | @lorirenee1 | Nov 24, 2020

In reply to @kaynine "I have received a diagnosis, which seems to be the most difficult leg of this incredibly..." + (show)

@kaynine

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

@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

kaynine | @kaynine | Nov 24, 2020

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.

kaynine | @kaynine | Nov 24, 2020

In reply to @faithwalker007 "I’ve was diagnosed with CRPS two years ago after a hard and long painful search for..." + (show)

Right now, this shit is outstretching any difficulty I have yet to deal with in the entirety of my life. That includes a twelve-year stint as a humanist libertarian cop (Not too many of those.). Reading this reply resonated with me as well and I'd just like to thank you for taking the time.

wisco50 | @wisco50 | Nov 24, 2020

In reply to @kaynine "Thank you very much for your reply. I have been about as squeaky as a wheel..." + (show)

Never give up! Be that persistent person (I think about the dog and the bone analogy!) and believe in yourself. It worked for me after ten long years (and I know how lucky I was).

livelifes | @livelifes | Jun 11, 2021

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.