Chronic Pain Syndromes: A Battle with Invisible Disease
Author: Cara Hoffart, DO | Medical Director, The RAPS Program | Director, Pain Management Clinic | Pediatric Rheumatologist | Associate Professor of Pediatrics
Column Editor: Amita R. Amonker, MD | Pediatric Hospitalist | Assistant Professor of Pediatrics, UMKC School of Medicine
After countless doctors’ appointments and numerous tests, 17-year-old Suzie and her mother were at a loss for what was happening to her. Up until a year ago, Suzie was healthy. Then she suddenly developed knee pain. Over a year, pain increased in severity and washed over Suzie’s entire body, resulting in myriad symptoms including leg swelling, discoloration, dizziness, shaking and even pain to the lightest touch. She developed abdominal pain, nausea, food intolerance and lost over 25 pounds. She used crutches to ambulate and needed assistance bathing and dressing. Her sleep was severely disrupted, resulting in fatigue rivaling her pain. She had an extensive laboratory and imaging evaluation that revealed no answers. She began to feel sad, irritable, distracted and overwhelmed. She was no longer able to attend school or spend time with friends. Her life was upside down with severe disability, and no one knew how to help her.
While all teens experience pain, up to one in three struggles with chronic pain. Pain is an individualized experience that can be hard for those without pain to understand. Furthermore, there is great variability between teens with chronic pain, making it challenging to find a diagnosis and treatment plan. Chronic pain can be associated with an underlying disease process (e.g., juvenile arthritis, sickle cell disease); however, many teens experience pain without the presence of an underlying etiology. Here, we focus on amplified pain syndromes (APS), which is an umbrella term including a variety of chronic pain conditions such as central sensitization; complex regional pain syndrome (CRPS); juvenile fibromyalgia; chronic headaches; chronic abdominal pain; and dysautonomia.
Diagnosing Amplified Pain Syndromes
Amplified pain syndromes occur when the child’s perception of pain is increased due to the abnormal firing of nerves which sense pain and control vascular tone. This results in severe, often life-altering pain. This condition typically affects adolescent girls (80%), but can be seen in younger school-aged children and boys. Pain may be localized to one part of the body, or can be generalized, and sometimes includes other physical symptoms in addition to pain. Common symptoms may include headaches, blurry vision, dizziness, heart palpitations, syncope, chest pain, abdominal pain, nausea, vomiting, diarrhea, sleep disturbance, fatigue, memory deficits and difficulty concentrating. Many teens also have co-morbid anxiety, depression and other mood changes related to their pain and the impact on life. APS can be triggered by illness, prior injury, or even stress. Even though there may be no clear trigger, this does not make the pain any less real. Teens with chronic pain are often made to feel that they are exaggerating their pain or that pain is all in their head. There is a clear physiologic biopsychosocial model underpinning chronic pain conditions.1 All teens and their parents deserve to have pain validated by acknowledging it is real and it is “not in their head.”
Children with chronic pain require some evaluation to rule out inflammatory or mechanical causes of pain. At minimum, we recommend:
- Baseline labs to include CBC with diff, BMP, LFT, CRP, ESR, TSH, vitamin D and possibly Celiac.
- Imaging may be indicated based on history and examination. Labs and imaging are generally normal in amplified pain syndromes, though chronic pain can reveal osteopenia or even bone edema on X-ray or MRI.
Some children with chronic medical conditions can develop secondary pain syndromes, but it is imperative to be sure underlying disease is well controlled before diagnosing amplified pain.
Treating Amplified Pain Syndromes:
Successful treatment for children diagnosed with APS requires focus on physical function and moving through discomfort to retrain the over-firing neurovascular axis and minimize the brain’s perception that this pain is dangerous. Treatment includes both physical and stress management interventions simultaneously.2 Pain and associated symptoms often worsen before getting better, and the ability to do normal things usually returns before pain resolves. Unfortunately, there are no medications that are shown to significantly improve pain in children with long-term APS.
Recommendations: 4-Pronged Approach
Intense Exercise Therapy
- 45 minutes of aerobic exercise daily, even when experiencing increased pain or muscle soreness.
- Focus on improvement in function (e.g., speed, endurance, strength, balance).
- Consider a referral to Children’s Mercy physical therapy/occupational therapy to meet with therapists trained in amplified pain syndromes to develop a home exercise and desensitization plan.
- Perform at least 5-10 minutes of desensitization exercises (e.g., rubbing, massaging, heat, cold, vibration, etc.) to affected body part(s) five times a day.
- Practice relaxation breathing, imagery and other relaxation techniques to work through pain and provide daily opportunities to unwind.
- Learn ways to incorporate coping strategies (such as journaling, creative writing, drawing, listening to music, etc.) into everyday life.
- Work with a counselor or psychologist to deal with stress from pain, school and all sorts of other normal things. Counselors do not need pain-specific training.
Decrease Attention to Pain
- Limit discussion and checking in on pain as this can worsen symptoms.
- Focus on functional/physical activities such as going to school, playing sports, spending time with friends and family, etc. Keep daily activity consistent, even when experiencing pain.
The Rehabilitation for Amplified Pain Syndromes (RAPS) Program
When addressed early, many teens with pain improve with this outpatient plan. However, some patients with severe disability or those not making progress can benefit from treatment in a multidisciplinary pain clinic. Of the patients we see in our pain management clinic, only about one-third need increased intensity and dosing of therapies and are admitted to the RAPS Program. The RAPS Program is an intensive interdisciplinary program at Children’s Mercy dedicated to treating adolescents struggling with chronic pain conditions. The RAPS program is the only treatment program of its kind in the region and draws patients from across the country as well as internationally. It is a transformative experience combining intensive exercise therapy, desensitization, counseling and self-regulation strategies over an average of four weeks.3 With this approach, approximately 90% of our patients return to full physical function and 70-80% experience pain resolution, as well as improved anxiety, depression, and school attendance.
- Woolf C. Central Sensitization: Implications for the Diagnosis and Treatment of Pain. Pain. Mar 2011;152:S2-S15.
- Hoffart C, Wallace DP. Amplified Pain Syndromes in Children: Treatment and New Insights into Disease Pathogenesis. Curr Opin Rheum 2014; 26(5):592-603.
- Hechler T, Ruhe A, Schmidt P, et al. Inpatient-based Intensive Interdisciplinary Pain Treatment for Highly Impaired Children with Severe Chronic Pain: Randomized Controlled Trial of Efficacy and Economic Effects. Pain 2014; 155:118–128.