My Decision to Drive to the Spero Clinic in Fayetteville, Arkansas

In recent years, although the understanding of different mechanisms of CRPS has improved slightly and a multitude of new interventions have been proposed and are now in use, there has been limited evidence for the effectiveness of any therapeutic modality and no strong consensus exists regarding the optimal management of CRPS.

Connor’s mom Anne was the first to find the Spero Clinic back in April 2021 when she took the time to research CRPS and all of the treatments, widely accepted western medicine as well as functional medicine.

I wasn’t able to research much about CRPS, at the beginning, because reading the below details from the National Library of Medicine made me so emotional, emotional enough to cause me physical pain.

“This poorly understood disease…is often undiagnosed, overdiagnosed, or even underrecognized [and] is one of the more challenging chronic pain conditions to treat successfully [because]… there are no definitive evidence-based medical treatment guidelines. Clinical trials have failed to support the efficacy of commonly used interventions by the medical community.”
– National Library of Medicine

My providers in Los Angeles were trained in the field of western medicine, their treatments have been “symptom masking” rather than finding the root cause of my pain whereas functional medicine, provided by Spero, is “a systems biology–based approach that focuses on identifying and addressing the root cause of disease” (The Institute for Functional Medicine, 2022).

In general, pain exists as a protective mechanism to warn you of a potential threat, or actual threat. The neuropathic pain (intense burning, hyperalgesia, and allodynia); brain fog; dissociation; joint stiffness; swelling of the limb(s); changes in skin temperature and texture, etc. are just some of the symptoms that present due to the greater issue: sympathetic nervous system dysfunction.

Up until this point, treatment has been to dull or turn down this alarm system without addressing the root cause. The practitioners a the Spero Clinic recognizes this dysfunction of the nervous system and target treatment towards it.

For the past few months, my doctors have been telling me that zero pain is not a realistic goal. Even though I believe differently. It’s defeating to sit across from one doctor after another and tell them I want full remission– zero symptoms, zero pain– just to have them shake their heads. One doctor looked me in the eye and said “Your left leg will never again look identical to your right.” It feels as though the doctors took my agency away and with it the power of healing. They made me question my future.

Given the opinion remission was unrealistic, my physical therapist and my occupational therapist said they believed it was time to scale back on our weekly visits. My occupational therapist explained that her job is to help her patients back to normal function, not to see us through to remission.

I was told to prepare for a life with pain– one where eventually the pain will “eventually fade into the background just low enough to carry on”. I was expected to accept my diagnosis and surrender to a chronic pain diagnosis at 24. We are taught that, the professionals, are the ones who know the most about our bodies. All but one of my providers told me that the treatments I was considering from Dr. Katinka weren’t scientifically proven, even “bogus.”

What was I to do?

At this point, I had had four lumbar sympathetic nerve blocks followed by my third Bisphonate infusion on September 23rd. I was tired and physically ill, these were common side-effects to the treatments. My 5’1 body can only handle so much. Now, I am currently still flooding it with: Pregabalin, Low-dose naltrexone, Cymbalta, Duloxetine, Relafin, and Doxepin. You can read a more in depth account of my previous treatments in my third blog post, “Treatment in Los Angeles.”

Given the lack of clear treatment options from medical professionals, my treatment team reducing care despite my goal of remission, push form Conor’s mom to try Spero and their proven success, it made sense for Conor and to turn to the Spero Clinic in Fayetteville, Arkansas. We didn’t want to wait around to see what happened after exhausting first line therapies. I would only be facing more invasive interventions with higher risks and side effects such as nerve beer blocks, ketamine treatments and spinal cord stimulators.

After making the decision to make our way to Arkansas, we left on October 6th for Santa Fe, which is halfway between Los Angeles and Fayetteville, Arkansas where the clinic is. We spent a few days with my mom and family friends eating sopapillas and fetish shopping— a nice respite between the 12 hour drives. We arrived a few days early to settle into our Airbnb in Rogers (about 30 minutes north of Fayetteville) from the 9th to the 12th, my first day of treatment.

For more information about the Spero Clinic, click here to read about their team, facility, treatments, and inspiring stories of patients’and their encouraging before and afters.

Stay tuned to hear all about my first week and wish me luck!

What is CRPS?

CRPS stands for Complex Regional Pain Syndrome. It is a chronic pain disorder of the nervous system that, as of now, has no known cure.

The condition usually appears after surgery or an injury to a limb — such as a broken bone, a fracture, or a strain. My CRPS showed up after a minor ankle sprain in November of 2021.

A great analogy for understanding CRPS is to think of the nervous system as a car alarm. A normal car alarm goes off only when there is real damage to the car from something like a broken window or a crash. However, in a person with CRPS, the car alarm is set off by much gentler stimuli, such as a gust of wind or a simple touch of the handle.

Essentially, CRPS is an over-reaction of the nervous system. The problem with treating CRPS is that once the central nervous system becomes hyper-sensitized, it becomes very difficult for it to return to normal.

To use another analogy, think of the nervous system as a light switch. Once a person’s CRPS becomes chronic, the light switch is turned on and can not be turned back off. Instead, it can only be dimmed lower, hopefully low enough for the pain to fall into the background.

My pain is two fold: I experience nociceptive pain and neuropathic pain. Nociceptive pain is a medical term used to describe the pain from physical damage to the body — such as an ankle sprain — which causes symptoms such as sharp, aching, or throbbing sensations. Neuropathic pain is used to describe the pain that develops when the nervous system is damaged or not working properly, and is characterized by burning, stinging, shooting, tingling, and numbness — all of which are worse at night. Unlike nociceptive pain, neuropathic pain does not develop in response to any specific circumstance or outside stimuli. Because of the nature of CRPS, I experience both real neuropathic pain and perceived nociceptive pain from my previous ankle sprain, despite the fact that it has healed.

My pain flares for a myriad of reasons, which makes it so debilitating. It can last seconds, hours, or days, and is often unprovoked, appearing completely spontaneously. My foot is sensitive to changes in temperature, touch, fabric textures, physical activity, stress, fatigue, hunger, my period, poor diet, etc.

Unfortunately, CRPS is not widely known or understood by many doctors. It is very often misdiagnosed, or not diagnosed at all. Many people receive the wrong treatments or no treatment whatsoever, allowing the condition to worsen. For example, before my diagnosis I was told to ice my foot, which I did daily for two months — it wasn’t until after my diagnosis that I learned icing my foot was only making it worse.

The most important thing you can have when fighting CRPS is information, which is why I’m starting this blog.

I’ve linked some websites below that I found to be great introductory resources for new patients.

Mayo Clinic

National Institute of Neurological Disorders and Stroke

Stanford Medicine

Cleveland Clinic

Cedars Sinai

Thank you for reading and I hope you find this blog to be a helpful guide while you or your loved one fights this condition. And to my family and friends, thank you reading and following along in my journey.

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