CRPS and Arnold Chiari Malformation I

This is my first post here, my name is Amanda and I’m joining the group because I’m currently trying to figure out exactly what’s going on with my upper extremity pain. From October 2025 to this day, I have seen hand and back orthopedics, neurology, rheumatology, vascular and chiropractic.

My symptoms started with chronic neck and upper back pain around 2017 and have progressively involved both shoulders, arms, wrists, and hands. It was a noticeable different pain and topography, on April 20th, 2026. I now deal with significant burning/neuropathic pain, numbness, tingling, weakness and grip problems, tremors/twitching, temperature sensitivity, and noticeable color and skin changes in my hands. Cold can cause burning, numbness, and color changes, and I’ve also developed painful superficial veins/spider veins around my shoulders and neck. Functionally, things like driving, typing, gripping, opening containers, applying makeup, and household tasks can be difficult. Overall, I have been struggling so hard attempting to remedy this and support myself. My therapist thought it would be a good idea to reach out to like minded people, so I don't feel like so much like I am on an island by myself.

My EMG showed bilateral carpal tunnel but no cervical radiculopathy or generalized neuropathy. I’ve also had extensive rheumatology/autoimmune and metabolic testing that has been largely unrevealing. I’ve tried occupational therapy, NSAIDs, gabapentin, wrist splints, and trigger-point injections. Gabapentin helps my neuropathy somewhat but hasn't controlled the upper-extremity pain, and the trigger-point injections didn't help and actually increased heaviness/numbness/tingling. I am struggling especially with the reality of my specialist's seeing me only for two appointments, only attempting one procedure / medication, and hearing it does not work immedietly push me off to the next guy.

CRPS has been diagnosed/considered, but there has also been concern for thoracic outlet syndrome, small-fiber neuropathy, vascular involvement, and other possible overlapping causes. This is interesting that it was diagnosed, as I had no onset to injury, stroke, heart attack or surgery. I’m currently seeing multiple specialists and am pursuing a second pain-management opinion because I still don't have a treatment plan that adequately controls my pain.

One other unexpected finding: my 2017 cervical MRI mentioned low-lying cerebellar tonsils but no definite Chiari. A July 2026 brain MRI now describes approximately 6 mm of right cerebellar tonsillar descent compatible with Chiari I. I’m following up with neurosurgery about that as well.

I am struggling with CRPS and Arnold Chiari Malformation I a lot, with work and life balance. These two could play a lot into each other.

I’m hoping to connect with people who have dealt with CRPS, thoracic outlet syndrome, small-fiber neuropathy, Arnold Chiari Malformation I, autonomic/vascular symptoms, or similar diagnostic journeys. I’m especially interested in hearing what helped with diagnosis, pain management, and navigating multiple specialists. I’m still trying to put all the pieces together, so I’m grateful for any experiences or advice. ❤️