Five years with migrating RSD. It has affected my entire body and organs.

Posted by islandhippy @islandhippy, Mar 22, 2016

Suffering for nearly 5 years now with migrating RSD. Initial doctors failed to diagnose and treat me for nearly a year despite very pronounced symptoms. What started as RSD in my leg is now all over and impacting my organs as well. I’m trying (and have tried) SCS, IVIG, ketamine infusions, acupuncture, LDN and so many other first and second line meds, off label meds, PT, biofeedback, hypnosis, oils, nutritional/dietary changes, creams and even surgical nerve decompression. Nothing has been remotely effective, and now I have small fiber neuropathy. My overall health is compromised too. Does anyone have any suggestions? (BTW, my original orthopedic injury is still painful and not properly repaired.) Any physician who sees me and hears I have RSD, quickly ends the appointment and sends me on my way replying that my injuries are beyond their expertise. I welcome any and all suggestions. Help??!!

Hi @islandhippy, and welcome to Connect. I’m Alyse, and I’m one of the community moderators here. I’m sorry to hear about your consistent struggle with pain, but I’d like to provide you with a few resources that may benefit you.

Have you considered seeing a doctor at Mayo Clinic? If you wish to make an appointment, please visit:

I’ve included a link to the various treatments, as well as home exercises/therapies you could try. (
Also, Mayo Clinic does provide the Pain Management Adviser e-newsletter that could be helpful. (


@islandhippy you may wish to join the RSD conversation happening in the Brain & Nervous System group where you’ll meet @oldnana and @rowan.

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