Has anyone been diagnosed with CRPS? If so, can you share your story?

I commiserate with your pain and truly understand your need for answers.💖

I've written within this past year or so about my CRPS journey, which started with a devastatingly harsh fall onto concrete floor in a food warehouse in our town. First foot orthopedist turned out to be an airhead, dismissive of what I felt in the ankle/foot, telling me "let's given 6 more weeks...". Bottom line: The fall was in June '21 and by end of November I was fed up with his repeated refrain of "Let's give it another 6 weeks because soft tissue damage take times to heal." He flat out refused to order an MRI or anything else for that matter, just PT (which did NOT address my pain, nor ameliorate it). I finally demanded at least a nerve conduction study, to which he reluctantly agreed. He never called to inform me of results, which I learned via the Patient Portal that did indeed indicate damage/involvement of nerves. The month following the study, I made appointment to again request that my expanding/intensifying pain be acknowledged and addressed, as well as have him finally concede to an MRI (had kept saying all those months that in his expert opinion (!) an MRI was NOT indicated nor would it help at all with what he arrogantly stated was "...just pain that will improve with time -- just accept that and go on with your activities and life.") Yeah! That was last time I had anything to do with this hubristic, dismissive "professional". I brought the conduction studies to my neurologist (within a different practice). Ankle was still swollen and painful ONE WHOLE YEAR POST INJURY. He firmly stated that an MRI most definitely SHOULD have been done. He ordered it, and along with the results of conduction studies recommended a foot orthopedist in private practice. That doctor, after thorough examination, etc., concluded that there was nothing that could be done at that point regarding the pain that now was BURNING NERVE PAIN, of entire ankle, up the lower leg, over the entire foot of Pain Scale 7 to 9 out of 10. PERSISTENT, 24/7 PAIN. My neurologist diagnosed Complex Regional Pain Syndrome. So I had a diagnosis at last, but the horrid journey to that place could have been so different if the first foot orthopedist had taken care of my pain more professionally. (Actually, I've since learned that several other patients had complaints about him also, including improperly done surgery, so I'm glad that I ditched him.)

The takeaway from the extensive research that I did: Early intervention can help to lessen the possibility of ending where I have, now more than 2 years with CRPS and its constant 24/7 burning nerve pain. My pain management doctor and superb podiatrist highly supported PT. None of the centers within my area had been at all helpful, so I did an extensive search, vetting other places and therapists. I finally opted to go with a highly skilled therapist who had helped with damages to knee and strengthening supportive muscles. He knew nothing about CRPS but willing listened to what my condition entails (CRPS was unknown to ALL the therapy clinics to which I reached out). He helped release the tightness that had developed, teaching me what I could do to help myself since PT is what is indicated as being most helpful and advantageous for CRPS sufferers.
So three and a half years after the horrid trauma to the entire left side of my body, the ankle/foot/lower leg are the areas STILL affected due to the ensuing CRPS. Twenty-four/seven, BURNING nerve pain, averaging a sometimes low of about 6 to unbearable high of 8-9 out of 10. Emotionally, mentally, physically draining.

What have I found that helps?
•Self-massage
•Stretches of muscles/tendons (as taught in PT)
•Elevating legs (including against the wall)
•Heating pad
•Alleve when most needed (I cannot take most often prescribed meds like gabapentin, codeine, etc.)
•A topical cream compounded by my podiatrist
•Breathing exercises
•Relax/release of whole-body muscles, etc. (especially nice when done to relaxing music)

These are what I do to deal/cope with my personal hell of CRPS.
The condition has no cure. 😳
Despite what a few members have posted, surgery is not what has been cited in medical journals for addressing the condition. For those that have obtained total release/relief, I'm certainly happy for them. But research literature squarely indicates that CRPS does NOT have a cure, while also acknowledging that PT is a crucial way to deal with aspects of the condition.

I did accept TWO shots (on either side of ankle) by the second foot orthopedist to whom I'd been sent for consultation. But it was so incredibly painful (and did not release me from pain nor ameliorate the condition) that he told me there was nothing more that he could do and referred me back to my neurologist. And thus came the diagnosis of CRPS Type 2 (due to trauma) in June '22...

I'm 76 and have many comorbidities. CRPS is just "there" on a daily basis but not the main focus of my concerns at this point. It has indeed added yet another level to my ataxia and gait issues. As I sit here typing this, I have needed to periodically get up, stretch out the left leg, wiggle the foot/ankle to release some of the tightness...but the pain itself does not go away. I've learned to live with the consequences of the trauma to the affected areas but will not allow CRPS to define my daily life. No. Too many more significant issues call for my attention.

I hope you locate professionals who will LISTEN, brain-storm, be willing to consult with others on your medical team, and guide you to at least a more tolerable dimension in you pain journey. God bless.🙏🏽

Sorry to hear about your suffering =(. It’s sadly too common. I agree, PT has been the most helpful for me—but only when it’s the most appropriate. It’s well past time now that providers need to learn that pain isn’t just linear, that it’s a message the brain sends out so often and always with chronic pain syndromes we have to find ways to retrain the brain. Sigh.

I got lucky and after “only” two years of PT that made my condition worse, I found a PT who understood chronic pain.

Have you tried GMI (graded motor imagery)? It’s a treatment for CRPS that has been effective for me. You can start it on your own when without a PT, though it’s better with someone to guide you.

I commiserate with your pain and truly understand your need for answers.💖

I've written within this past year or so about my CRPS journey, which started with a devastatingly harsh fall onto concrete floor in a food warehouse in our town. First foot orthopedist turned out to be an airhead, dismissive of what I felt in the ankle/foot, telling me "let's given 6 more weeks...". Bottom line: The fall was in June '21 and by end of November I was fed up with his repeated refrain of "Let's give it another 6 weeks because soft tissue damage take times to heal." He flat out refused to order an MRI or anything else for that matter, just PT (which did NOT address my pain, nor ameliorate it). I finally demanded at least a nerve conduction study, to which he reluctantly agreed. He never called to inform me of results, which I learned via the Patient Portal that did indeed indicate damage/involvement of nerves. The month following the study, I made appointment to again request that my expanding/intensifying pain be acknowledged and addressed, as well as have him finally concede to an MRI (had kept saying all those months that in his expert opinion (!) an MRI was NOT indicated nor would it help at all with what he arrogantly stated was "...just pain that will improve with time -- just accept that and go on with your activities and life.") Yeah! That was last time I had anything to do with this hubristic, dismissive "professional". I brought the conduction studies to my neurologist (within a different practice). Ankle was still swollen and painful ONE WHOLE YEAR POST INJURY. He firmly stated that an MRI most definitely SHOULD have been done. He ordered it, and along with the results of conduction studies recommended a foot orthopedist in private practice. That doctor, after thorough examination, etc., concluded that there was nothing that could be done at that point regarding the pain that now was BURNING NERVE PAIN, of entire ankle, up the lower leg, over the entire foot of Pain Scale 7 to 9 out of 10. PERSISTENT, 24/7 PAIN. My neurologist diagnosed Complex Regional Pain Syndrome. So I had a diagnosis at last, but the horrid journey to that place could have been so different if the first foot orthopedist had taken care of my pain more professionally. (Actually, I've since learned that several other patients had complaints about him also, including improperly done surgery, so I'm glad that I ditched him.)

The takeaway from the extensive research that I did: Early intervention can help to lessen the possibility of ending where I have, now more than 2 years with CRPS and its constant 24/7 burning nerve pain. My pain management doctor and superb podiatrist highly supported PT. None of the centers within my area had been at all helpful, so I did an extensive search, vetting other places and therapists. I finally opted to go with a highly skilled therapist who had helped with damages to knee and strengthening supportive muscles. He knew nothing about CRPS but willing listened to what my condition entails (CRPS was unknown to ALL the therapy clinics to which I reached out). He helped release the tightness that had developed, teaching me what I could do to help myself since PT is what is indicated as being most helpful and advantageous for CRPS sufferers.
So three and a half years after the horrid trauma to the entire left side of my body, the ankle/foot/lower leg are the areas STILL affected due to the ensuing CRPS. Twenty-four/seven, BURNING nerve pain, averaging a sometimes low of about 6 to unbearable high of 8-9 out of 10. Emotionally, mentally, physically draining.

What have I found that helps?
•Self-massage
•Stretches of muscles/tendons (as taught in PT)
•Elevating legs (including against the wall)
•Heating pad
•Alleve when most needed (I cannot take most often prescribed meds like gabapentin, codeine, etc.)
•A topical cream compounded by my podiatrist
•Breathing exercises
•Relax/release of whole-body muscles, etc. (especially nice when done to relaxing music)

These are what I do to deal/cope with my personal hell of CRPS.
The condition has no cure. 😳
Despite what a few members have posted, surgery is not what has been cited in medical journals for addressing the condition. For those that have obtained total release/relief, I'm certainly happy for them. But research literature squarely indicates that CRPS does NOT have a cure, while also acknowledging that PT is a crucial way to deal with aspects of the condition.

I did accept TWO shots (on either side of ankle) by the second foot orthopedist to whom I'd been sent for consultation. But it was so incredibly painful (and did not release me from pain nor ameliorate the condition) that he told me there was nothing more that he could do and referred me back to my neurologist. And thus came the diagnosis of CRPS Type 2 (due to trauma) in June '22...

I'm 76 and have many comorbidities. CRPS is just "there" on a daily basis but not the main focus of my concerns at this point. It has indeed added yet another level to my ataxia and gait issues. As I sit here typing this, I have needed to periodically get up, stretch out the left leg, wiggle the foot/ankle to release some of the tightness...but the pain itself does not go away. I've learned to live with the consequences of the trauma to the affected areas but will not allow CRPS to define my daily life. No. Too many more significant issues call for my attention.

I hope you locate professionals who will LISTEN, brain-storm, be willing to consult with others on your medical team, and guide you to at least a more tolerable dimension in you pain journey. God bless.🙏🏽

Sorry to hear about your suffering =(. It’s sadly too common. I agree, PT has been the most helpful for me—but only when it’s the most appropriate. It’s well past time now that providers need to learn that pain isn’t just linear, that it’s a message the brain sends out so often and always with chronic pain syndromes we have to find ways to retrain the brain. Sigh.

I got lucky and after “only” two years of PT that made my condition worse, I found a PT who understood chronic pain.

Have you tried GMI (graded motor imagery)? It’s a treatment for CRPS that has been effective for me. You can start it on your own when without a PT, though it’s better with someone to guide you.

Thank you for sharing your story. I also do some of the things that help you. I wish you the best🍁.

Thank you!!!

I'm so sorry this is happening to you, and glad you got an appointment somewhere where you feel you may be able to get help. I was also diagnosed with central pain disorder (aka central sensitization, central pain syndrome, chronic pain syndrome, etc.) first years ago. However, my PCP now thinks I may have CRPS, only it's not as severe as it could be because I've had proper treatment for central sensitization for years at this point. There's a lot of overlap.

It did end up that I had "more going on" though--I was ultimately diagnosed with seronegative spondyloarthropathy (an inflammatory arthritis that doesn't show inflammatory markers in blood tests), POTS, and HSD/hEDS (different doctors don't agree on if I have hypermobility spectrum disorder or hypermobile Ehlers Danlos, but it's treated the same).

First thing is, were you confident in the workup you had before you were diagnosed with central pain? The symptoms you're naming can happen with central pain, but could also be symptoms of other conditions. One could have central pain and/or CRPS while also having other co-occurring conditions. Some are treated similarly, but with the conditions I was diagnosed with, they required different treatment. Part of the reason my pain wasn't improving was because an inflammatory arthritis pretty much has to be treated with medication. Do you think you may be hypermobile? (If you're not sure, you can look up the Beighton test and see where you are.) Symptomatic hypermobility can cause widespread chronic pain like what we see in CRPS, central pain, and fibromyalgia, or they all can occur in the same person.

Second thing that pops into my head is, what kind of treatment have you tried for central pain/central sensitization? There are medications, but I've gotten the most leverage out of working with PTs who are specifically trained in chronic pain and central sensitization--they helped teach me how to decrease the pain signals (because in central pain, the central nervous system/brain begins to perceive more and more stimuli as threats, and so sends out disproportionate pain signals as a warning to prevent us from a "threat"). This is something that I find very few doctors focus on are are aware of, and if they are, they don't always explain it well, and it ends up sounding like they think the pain is in our heads and they want us to meditate it away (which is not what I'm saying).

The other thing I learned with proper PT is proper pacing. Because our central nervous systems are hyper-sensitive, we can't take on exercise the same way as someone without central pain. The pace has to be much gentler--it's like trying to teach a child who was previously bitten by a dog to not be afraid of dogs; you can't jump right in. I was hurt numerous times by PTs who were too aggressive (including at Mayo Clinic). We've also been using Graded Motor Imagery (GMI), which is a treatment that's been used for both central sensitization and CRPS.

These are all things that could help, and in the short term you can take elements of a pain neuroscience approach (interventions you can do on your own to quiet the pain signals), but it sounds like you're also wondering if there may be something else going on. I kind of feel like you might want to make sure central pain is the only thing going on. It's unfortunately very easy for providers to lump everything into the bucket of "central pain" because so many things are symptoms of it. I was diagnosed with central pain at Mayo Rochester, and they missed all the above diagnoses because of the red herring that central pain presented.

I'm wishing you all the best and hoping things go well for you at your appointment.