CRPS - anyone suffering with complex regional pain syndrome

I am not. Are there specific tests or criteria for this? Any success in treating it or does it tend to get progressively worse?

I have high arches too. Even needed girl shoes as a toddler in the 1980's to get enough support lol. Too young to remember so it's okay.

If you're able to pinpoint the discomforts and historical perspective I'd imagine a physician could as well. Have you had ultrasound?

Today, I'm going to see an ultrasound / PRP injection doctor (plasma-rich platelet). Saw my pain specialist yesterday who put me on Buprenorphine from extremely low-dosing of Tylenol 3. They gave me stomach aches and I stopped taking them knowing pain would get worse, and did. See how that goes. Had high hopes until he said PRP doesn't work for nerve damage, only cartilage. Still going to go talk though. If anything, I want my nerves mapped to figure out where the nerve damage is if only for peace of mind and to have a better understanding of my body.

I had a neuromuscular ultrasound on my wrists, elbows, and ankles. There were nerve changes but not in proportion with symptoms at the ankle.

Best wishes on your injection. I understand wanting to have your nerves mapped. I have told doctors that I do better when I have vocabulary/pockets.

I was surprised to find myself crying as I watched the video. (To be fair, I was having higher than normal pain.) It has been difficult being shuffled from specialist to specialist. I keep thinking I would like someone to look at me as a whole picture. And I feel like this doctor did that. My current neurologist has been amazing. She is ruling out everything she can. I am a therapist who has worked with people with chronic pain and I use CBT for Chronic Pain. I am pretty familiar with pain psychology. That has helped me in my own journey. I do find myself looking for reassurances. For example, my ankle pain flared up after my PT evaluation and I felt torn. I wanted someone to look at it and make sure I didn't actually cause an acute injury. I also felt foolish going to my doctors about it. I kind of want it to be okay that I go to a doctor for reassurance in these times because I can't always trust my body's physical cues. Thank you for sharing the video.

Hi @jeanniem. You, my friend, are not alone in feeling foolish for going to doctors in hopes of finding solutions for your pain and then having nothing wrong. That's okay. I felt foolish doing the same plenty, but we have to so we can rule out by process of elimination in getting to the bottom of our conditions. Good job on being your best advocate!

Heightened pain or no pain, the video by Dr. Sletten is pretty powerful and feeling like you've been heard or seen in important. It brought me to tears too. Dr. Sletten helps explain scientifically and brings validation. I completely understand your desire to want to work with a team of specialists who look at the whole picture. The only place I found that was at Mayo Clinic when I attended the Pain Rehab Center. What have been your most helpful CBT tools?

You're fortunate to be working with an amazing neurologist. Are they part of a large teaching hospital? Wow, having a leg up on CBT and being a therapist is such an advantage as CBT and pain go hand in hand. I can imagine even though you're well versed, it's still difficult to navigate your own journey at times.

Progressing forward, what is your next step? What tests have been performed or are upcoming? I'm curious, have you had a skin punch biopsy yet?

Thank you for your kind comments. As for CBT tools, I think the most powerful thing I learned was the impact of attention and stress upon the pain signals in the brain. If I give fearful, catastrophic, or even just undue attention to my pain (mental, emotional, or physical) the brain interprets that the pain signal is important and turns the volume up on the pain (or thought, etc.). On the flip side, when I am able to normalize my pain ("Oh, I recognize this sensation. My nervous system must have gotten knocked into high alert. I can handle this.") my brain interprets that the pain must not be as important and turns the volume down. There is a balance between catastrophizing and avoidance/denial. Often that looks like a cocktail of acceptance and normalizing. I come from a go-getter family where the expectation is that you always go above and beyond. Finding balance without feeling lazy is one of my larger growth edges.

My neurologist is part of the CHI network. It is part of the larger network that was hacked a couple of weeks ago. I am so glad I made it a point to print out my "important" test results and doctor notes! I just love Dr. Danielsen. She is thorough, letting me know what she needs to rule out without making a big deal of it. She is the first one who mentioned CNS involvement. I had a full workup at Mayo with a neurologist and he missed it. Maybe because everyone was so focused on my being a type 2 diabetic. (They were all expecting peripheral neuropathy.) Maybe it was because my symptoms had not progressed enough for him to make the connection. He found both small and large fiber neuropathy. (Yes, they did 2 punch biopsies. Both were positive.) He also found the MGUS and got me into hematology.

Moving forward, Dr. D. increased my Baclofen to 5mg 3x/day. It has helped with some things, which is good. She may or may not bump it up again before I see her in November. She wanted to send me to a spinal guy to look at my neck (and recheck my lower back) but, with the computers down, I am not sure how that will work. She did a short EEG that came out normal (but left me with a migraine!) but wants to do a three day EEG. She wants to rule out epileptic activity, as I am super sensitive to all types of smoke and often smell some form of it when no one else does. It lasts for hours, sometimes off and on for days.

Lots of moving pieces. I think we have come to an agreement that my CNS is overactive. The fact that the Baclofen has helped supports that. I also have some things going on in my back and, potentially, some CRPS in my left foot/ankle. It has been a long journey!

Thank you for your kind comments. As for CBT tools, I think the most powerful thing I learned was the impact of attention and stress upon the pain signals in the brain. If I give fearful, catastrophic, or even just undue attention to my pain (mental, emotional, or physical) the brain interprets that the pain signal is important and turns the volume up on the pain (or thought, etc.). On the flip side, when I am able to normalize my pain ("Oh, I recognize this sensation. My nervous system must have gotten knocked into high alert. I can handle this.") my brain interprets that the pain must not be as important and turns the volume down. There is a balance between catastrophizing and avoidance/denial. Often that looks like a cocktail of acceptance and normalizing. I come from a go-getter family where the expectation is that you always go above and beyond. Finding balance without feeling lazy is one of my larger growth edges.

My neurologist is part of the CHI network. It is part of the larger network that was hacked a couple of weeks ago. I am so glad I made it a point to print out my "important" test results and doctor notes! I just love Dr. Danielsen. She is thorough, letting me know what she needs to rule out without making a big deal of it. She is the first one who mentioned CNS involvement. I had a full workup at Mayo with a neurologist and he missed it. Maybe because everyone was so focused on my being a type 2 diabetic. (They were all expecting peripheral neuropathy.) Maybe it was because my symptoms had not progressed enough for him to make the connection. He found both small and large fiber neuropathy. (Yes, they did 2 punch biopsies. Both were positive.) He also found the MGUS and got me into hematology.

Moving forward, Dr. D. increased my Baclofen to 5mg 3x/day. It has helped with some things, which is good. She may or may not bump it up again before I see her in November. She wanted to send me to a spinal guy to look at my neck (and recheck my lower back) but, with the computers down, I am not sure how that will work. She did a short EEG that came out normal (but left me with a migraine!) but wants to do a three day EEG. She wants to rule out epileptic activity, as I am super sensitive to all types of smoke and often smell some form of it when no one else does. It lasts for hours, sometimes off and on for days.

Lots of moving pieces. I think we have come to an agreement that my CNS is overactive. The fact that the Baclofen has helped supports that. I also have some things going on in my back and, potentially, some CRPS in my left foot/ankle. It has been a long journey!

Hey there @jeanniem, I wanted to check back in with you to see how things are going. You remain on my mind since your last post. I related to your comment,

"I come from a go-getter family where the expectation is that you always go above and beyond. Finding balance without feeling lazy is one of my larger growth edges."

Boy, that resonated with me but more of those being my personal expectations. Not so much the lazy part, moreso never sit still, always accomplish something, the job is never done, put every one before myself. It all can take a toll physically, emotionally, and behaviorally and exacerbate symptoms.

I was recently rewatching patient testimonials from the Mayo Clinic's Pain Rehabilitation Center and wanted to share them with you:

Mayo Clinic Patients Discuss PRC:
- https://newsnetwork.mayoclinic.org/discussion/patients-tell-how-pain-rehabilitation-program-brought-them-relief/

There certainly are "lots of moving pieces". I hope that you consider choices. With chronic pain and symptoms we may not always be able to control what comes our way, but we can control the way we respond and the choices we make to help achieve a better life quality for ourselves. I myself had to dig deep to figure this out. It's taken a long journey to get there, but I've gotten there. The job of rehabilitation is never done. My wish is to inspire you and let you know you're not alone.

Wishing you a happy hopeful day! Keep on, keeping on, my friend.

I did take some time to look over the problem. I don't know that I would qualify, at least not at this time. I remain pretty active. I go swing dancing when I can (sometimes I pay if I overdo things) and am in the process of upgrading to an e-bike so I can continue to ride - even on bad days.

I appreciate you reaching out. Things are going well, all things considered. I am doing some aqua therapy and we are in the process of increasing my Baclofen. We might be adding in pelvic floor physical therapy and I am supposed to be getting in to a spine doctor at some point. Those lovely moving pieces! I got a new ankle brace yesterday and am hoping that helps with ankle and knee pain. I volunteer at the dance this Friday and I am hoping to get out on the floor! 🙂