“The Suicide Disease” x 4

It is said that Complex Regional Pain Syndrome (CRPS) is “ranked among the most painful of all medical problems and has been nicknamed the ‘suicide disease’ because there is no cure and limited effective treatments. The pain from CRPS is so severe that it has been known to drive people to the brink of death. On the McGill Pain index, CRPS ranks 42 out of 50, making it one of the most severe pain conditions of all, even rated more painful than childbirth, amputation and the pain associated with cancer.” – Reflex Sympathetic Dystrophy Syndrome Association

I have quadrilateral CRPS. That is, in all four limbs. Evidently this is uncommon. It is also a symptom of exceptionally traumatic lived experience combined with abysmal lack of necessary and appropriate psychosocial support.

Although mainstream medicine considers CRPS incurable, in my experience sufferers can find tremendous relief through a neuroscience-based recovery plan. My recovery has accelerated in the last 6 months, since I’ve been able to get Stellate Ganglion Blocks (SGBs) on more of an as-needed basis rather than spaced so far apart that I had to repeatedly reclaim the same ground. I was on a yo-yo trajectory. Each treatment gap was like being thrown back into hell. Virtually all my symptoms–including pain, muscle spasms, flashbacks, night sweats, sleep problems, anxiety, intrusive thoughts, and fatigue– increased to make my life intolerable once more.

Insanely, to achieve sufficient access to this quick, inexpensive, minimally invasive, and highly effective treatment took over 5 years of asking, advocating, begging, and educating the medical industry and its practitioners, as well as my insurance company. It seems I succeeded only because I managed to pull together a paper that presents scientific evidence and 3.5 years of personal biomarker data to support repeat Stellate Ganglion Blocks, as a crucial component in my recovery from sympathetically-driven health conditions as part of my individualized Interpersonal Neurobiology-based healing framework.

Photo: greenware Open Bird Project tile, fractured before it even made it to the art museum studio.

This post includes content generated by ChatGPT, a language model developed by OpenAI. The AI-generated content has been reviewed and edited for accuracy and relevance.

About Shay Seaborne, CPTSD

Shay Seaborne CPTSD teaches Relational Neuroscience for stress reduction, trauma recovery, and community building. Shay has studied the neurobiology of fear / trauma /PTSD since 2014 and Interpersonal Neurobiology (IPNB) since 2019. They write, speak, teach, and make art to convey their experiences as well as their understanding of the neurobiology of fear, trauma theory, Interpersonal Neurobiology concepts, and principles of trauma recovery. A native of Northern Virginia, Shay settled in Delaware to sail KALMAR NYCKEL, the state’s tall ship. But once they finally had mental health insurance, their life rapidly changed. The standard treatment for PTSD nearly killed them. The psychiatric abuse began a cascade of negative medical encounters that repeatedly caused additional harm and the development of severe Medical PTSD. Shay wishes everyone could recognize that "mental health problems" are symptoms of dysregulation, our mainstream culture is neuro-negative, and we can heal ourselves and each other through awareness, understanding, and safe connection.
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