Complex Regional Pain Syndrome: When the Nurse Becomes the Patient

When diagnosed with CRPS, I put my healthcare background into play to try to bring more awareness to 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 (the exaggerated concerns about the risks associated with opioids that in turn prevent their appropriate use), 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). This 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.”

How do I know? The RN has become the patient! I am a CRPS Warrior on a mission alongside the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), a nonprofit organization dedicated to bringing forth understanding, education, and advocacy on a syndrome few practitioners understand (including me!). This is why I volunteer on RSDSA initiatives including the recent conference, “Creating Your Own CRPS toolkit” and annual CPRS/RSD Awareness Walk taking place September 15, 2018  (https://rsds.org/events).

Nurse Beth at center at the 2017 RSDSA Long Island Awareness event for CRPS/RSD

According to Jim Broatch, RSDSA’s executive vice president and director, “RSDSA’s mission is to provide support, education, and hope to all those affected by the pain and disability of CRPS/RSD, while driving research to develop better treatments and a cure.” Since many patients see up to seven practitioners before obtaining a CRPS diagnosis, their unexplained symptoms often go untreated, according to Mr. Broatch. These symptoms may include: disabling pain, color changes, temperature asymmetry, swelling, vasomotor instability, sudomotor abnormality, and impairment of motor function (see more about symptoms and diagnosis below).

As a nurse, did I see patients whose symptoms were ignored due to lack of objective and diagnostic findings? Yes! Was their severity of pain inconsistent with injury or events dismissed rather than recognized as CRPS? Yes! Humbling to admit, but despite my background in surgical intensive care and emergency departments, I, too, had no idea what CRPS was until I was diagnosed almost 12 years ago after a fall, tearing my ACL which led to relentless burning and neuropathic pain.

The Full Symptoms and Signs of CRPS

For CRPS patients, the challenge of getting 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, often leaving them feeling hopeless.

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, MI), major traumas (eg, fracture, surgery, amputation, trauma), or spontaneously. Current guidelines offer the following criteria:3

To be diagnosed with CPRS, a patient must report at least one symptom in three of the four following categories:

  • sensory: hyperalgesia (increased sensitivity to pain) / allodynia (pain response trigger from stimuli which does not normally provoke pain)
  • vasomotor: temperature and skin color asymmetry (differences on one side of the body) / skin color changes
  • sudomotor: edema (excess fluid underneath the skin, causing pain) / sweating changes or asymmetry
  • motor/trophic: decreased range of motion / motor dysfunction (weakness, tremor, dystonia) / changes to the hair, nails, or skin

In addition, a doctor must observe patient symptoms in two or more of the following categories:

  • sensory: evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure 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 a decreased range of motion, motor dysfunction, and/or trophic change.

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

The Unexpected Daily Regimen

Despite my nursing experience, it took more than six months for me obtain a diagnosis of CRPS Type 2 (the result of a confirmed nerve injury) from a neurosurgeon after ruling out other differential diagnoses alongside numerous consulting practitioners. Since that time, CRPS Type 1 (which occurs with no 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 the images herein as examples.

Livedo reticularis (purplish discoloration due to swelling) of the skin.

After a series of trials and errors, my current daily management plan includes the following—however, this list is not meant to offer medical advice—you should talk to your doctor about a treatment plan that’s right for you, whether it includes medication, non-medication therapy, or both:

  • 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 pain (nucynta) (Note: daily nucynta not needed since adding low-dose naltrexone & ketamine)
  • low-dose beta blocker (restorative sleep)
  • specialty compounded ketamine cream (other medications may be added)
  • PEA cream (palmitoylethanolamide) to decrease glial activation
  • Vitamins including: D3, Ca+, probiotics, Co-Q10, Acetyl-L carnitine, thiamine, riboflavin, creatine, methylcobalamin, pyridoxine, and lots of C+ to combat 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. 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. These may include cognitive behavioral therapy, graded motor imaging therapy, peer-led support groups, counseling, journaling, acupressure and massage, pet therapy, and nutritional support.

Shiny, wet looking skin.

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

Instrumental in my care and mental well-being have been 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. Utilizing a variety of treatments including chiropractic, physical therapy, and acupressure have improved my inner energy and mental focus on the fact that CRPS is not my fault.

Some obstacles I have faced along the way, however, involved insurance (ie, delays in obtaining coverage, or lack of coverage) and finding vested practitioners who were also local.

Cold, cyanotic (bluish/purplish discoloration due to skin surface having low oxygen saturation), and red burning of the skin.

The Promise of Hope

For me, sometimes a short-term goal may be as simple as getting the dishes out of the sink into the dishwasher, but I hope this brief summary of my experience as a practitioner turned patient may encourage others to understand more about what CPRS patients are going through. I also encourage you to take advantage and share some of the free educational publications on the RSDSA website at https://rsds.org/.

Updated on: 06/21/18
Continue Reading:
Living With Burning Pain: One Patient's CRPS Story
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