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15 Articles in Volume 18, Issue #5
Chronic Pelvic Pain: The Need for Earlier Diagnosis and Diverse Treatment
Cross-Linked Hyaluronic Acid for the Management of Neuropathic Pelvic Pain
Fentanyl: Separating Fact from Fiction
Gender Bias and the Ongoing Need to Acknowledge Women’s Pain
Letters to the Editor: 90 MME/day Ceiling; Ehlers-Danlos; Redefining Pain
Post-Menopausal MSK Pain and Quality of Life
PPM Welcomes Dr. Fudin and Dr. Gudin as New Co-Editors
Practitioner as Patient: Understanding Disparities in CRPS
States Take Action to Manage Opioid Addiction
Step-by-Step Injection Technique to Target Endometriosis-Related Neuropathic Pelvic Pain
The Many Gender Gaps in Pain Medicine
The Need for Better Responses to Vulvar Pain
Topical Analgesics for Chronic Pain Conditions
Topical Medications for Common Orofacial Pain Conditions
What’s the safest, effective way to taper a patient off of opioid therapy?

Practitioner as Patient: Understanding Disparities in CRPS

When Beth Seickel, RN, was diagnosed with complex regional pain syndrome, she put her healthcare background into play to help physicians grasp this multifaceted condition.

Despite the fact that chronic pain is a primary reason for emergency room and doctor visits, there is little to no pain education provided in North American nursing and medical schools, creating disproportionate consequences across the healthcare system.1 This disparity, residing in an atmosphere of opiophobia, has led to misunderstandings of the highest rated pain syndrome on the McGill Pain Scale: Complex Regional Pain Syndrome (CRPS), previously known as Reflex Sympathetic Dystrophy (RSD). The incurable, neuro-inflammatory condition in which the nervous and immune systems malfunction, causes nerves to misfire and send constant pain signals to the brain and spinal cord, resulting in what we in the pain community call “central sensitization of pain.”

The Full Symptoms and Signs of CRPS

After my diagnosis of CRPS almost 12 years ago, I began to understand how certain symptoms may be ignored or overlooked by physicians and nurses due to lack of objective and diagnostic findings. For instance, if the severity of pain is inconsistent with the injury or event,2 it is often dismissed rather suspected as CRPS. Despite my own Surgical Intensive Care Unit/Emergency Department background, I, too, had no idea what CRPS was until I tore my ACL during a fall and began to experience relentless, unexplainable, burning, neuropathic pain.

For CRPS patients, the challenge to obtain a prompt diagnosis and treatment from vested practitioners and hospital facilities, without falling through the cracks, has created an environment of fear and misdiagnosis, with little-to-poor treatment options. Many CRPS patients are simply labeled as “drug seekers” or incorrectly diagnosed with psychological conditions (eg, conversion disorder), leaving them feeling hopeless and, in some cases, suicidal.

I admit that the assessment of CRPS is challenging – there are no clear diagnostic tools and objective findings are often discounted. However, by recognizing CRPS as a combination of sensory abnormalities and autonomic dysfunction, evaluations may be more effective. For example, CRPS may occur as the result of minor traumas (eg, needle stick, sprain, burn, cut, bruise, immobilization, infection), major traumas (eg, fracture, surgery, amputation, trauma), or spontaneously. Available guidelines offer the following criteria:3

A patient must report at least one symptom in three of the four following categories:

  • sensory: hyperalgesia, allodynia
  • vasomotor: temperature or asymmetry, skin color changes or asymmetry
  • sudomotor: edema, sweating changes or asymmetry
  • motor/trophic: decreased range of motion, motor dysfunction, trophic changes (eg, hair, nail, skin).3

The patient must also display at least one sign observed at time of evaluation in two or more of the following categories:

  • sensory: evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or joint movement)
  • vasomotor: evidence of temperature asymmetry, skin color changes, and/or asymmetry
  • sudomotor/edema: evidence of edema, sweating changes, and/or sweating asymmetry
  • motor/trophic: evidence of decreased range of motion, motor dysfunction, and/or trophic change.3

If there is no other diagnosis that can better explain the signs and symptoms, CRPS must be considered.3

The Unexpected Daily Regimen

Although I had experience as a registered nurse (I am no longer able to work due to my CRPS), it took more than six months to obtain a diagnosis of CRPS Type 2 (with confirmed nerve injury) from a neurosurgeon after ruling out other differential diagnoses alongside numerous consulting practitioners. Since that time, CRPS Type 1 (without confirmed nerve injury) has spread to my other limbs, left eye, gastrointestinal system, nose and mouth. (I, too, was surprised to learn that CRPS may affect internal organs, not only the limbs.) See also Figures 1a-c.

After a series of trials and errors, my current daily management plan includes:

  • anti-depressant (Savella) for neuropathy
  • anti-inflammatory (Duexis)
  • anti-spasm (Robaxin)
  • N-methyl-D-aspartate (NMDA) modulator (Ketamine troche and IV)
  • glial cell modulator to combat neuro-inflammation (low-dose naltrexone liquid)
  • antihistamines, H2 blockers, leukotriene modifier (for neuro-itch and mast cell activation syndrome, MCAS)
  • mu-opioid for breakthrough (nucynta) (Note: daily nucynta not needed since adding low-dose naltrexone and ketamine)
  • low-dose beta-blocker (for restorative sleep)
  • specialty compounded ketamine cream
  • PEA cream (palmitoylethanolamide) to decrease glial activation
  • Vitamins including: D3, Ca+, probiotics, and a mitochondrial cocktail of Co-Q10, Acetyl-L carnitine, thiaine, riboflavin, creatine, methcobalamin, pyridonxime, and lots of C+, to combat my overactive nervous and immune systems.

Clearly, medications are an integral piece of treating chronic medical conditions, such as CRPS. Yet as a health professional, I recognize the importance of integrating supplemental modalities to complement any treatment plan as one without the other may hinder the health outcome. With CRPS, in particular, a treatment plan that aims to modify pain and restore function, for example, may take advantage of self-management tools in combination with outpatient and/or in an inpatient rehabilitation program. In addition, behavioral management approaches may be included (eg, cognitive behavioral therapy, graded motor imaging therapy, peer-led support groups, counseling, journaling, acupressure and massage, pet therapy, and nutritional support).

I have utilized many of these approaches, including co-chairing a chronic pain support group, meeting with a pain psychologist, and volunteering with the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), which has enabled me to continue using my nursing background despite the loss of my career.

Instrumental to my care and mental well-being were holistic nursing and acupressure applied to my non-CRPS leg. Of note, many individuals with CRPS develop biomechanical issues when attempting to minimize pain, such as through limping, which places additional stress on the body. Chiropractic, physical therapy, and acupressure have improved my inner energy and mental focus on the fact that CRPS is not my fault. Some obstacles faced along the way, however, have involved insurance (ie, delays in obtaining coverage, or lack of coverage) and finding vested practitioners who were also local.

The Promise of Hope

For me, sometimes a short-term goal may be as simple as getting the dishes out of the sink and into the dishwasher, but I hope this summary of my experience as a practitioner turned patient may encourage other healthcare professionals to spend more time learning about CRPS and what patients are going through. I also encourage practitioners to participate in RSDSA’s online, accredited CRPS courses—created with the Academy of Integrative Pain Management—and to take advantage of the organization’s free literature reviews, clinical guidelines, and educational publications. Together, we may be able to develop positive chronic pain outcomes for CPRS warrior patients and, on occasion, our colleagues.

Last updated on: August 1, 2018
Continue Reading:
Demystifying CRPS: What Clinicians Need to Know
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