Martha, 19, described six-month long pain in her lower back and hips that prevents her from running on the track team in college. She had been a runner since middle school, but with the stress of finals this spring and the last big track meet, she tripped and fell and has never regained her pain-free life.
The pain travels into her abdomen and down her left leg at times as well as occasionally up into her thoracic and cervical spine. She sleeps three to four hours a night before awakening to discomfort. She complains of cold hands and feet and constipation. All blood tests and x-rays are normal. Her physician diagnosed fibromyalgia and sent her for physical therapy to develop a management program.
Fibromyalgia research indicates the chronic pain and associated symptoms result from central sensitization and changes in brain structure and function that has a familial tendency. A precipitating event, like Martha's fall, instigates the beginning pain pattern, with the brain maintaining and exacerbating the pattern long after the initial event is past.
The goal for individuals with fibromyalgia/chronic pain symptoms is to function well in daily life while minimizing interfering symptoms. Pain patterns and associated symptoms are major limiting factors in this regard. Sleep and fatigue are the most common associated symptoms in chronic pain. Addressing pain, sleep and fatigue becomes primary in assessment, treatment and management strategies. Sleep becomes an essential component for pain and fatigue improvement.
Assessment
The first step is to collect baseline information about pain and fatigue levels throughout the day and the number of hours sleeping and number of times awakening at night. The self-care report sets up a week-long data sheet that is easy to fill out and clearly shows pain, fatigue and sleep patterns. It includes pain rating four times daily, work, rest and play activity records, sleep hours and awakenings. When the baseline summary is completed, goals can be set for improvement in pain, fatigue and sleep.
It is common for an individual with fibromyalgia syndrome (FMS) to report waking six to 10 times a night and getting up in the morning feeling tired and stiff. That is not the way anyone should start the day. Research findings indicate significant disruption in normal sleep patterns with chronic pain/FMS. Alpha-delta sleep disturbance is common. Arousal sleep levels invade deep sleep levels throughout the night. This interferes with the hormone production necessary for rested, pain-free daytime function. When sleep improves, pain and fatigue decrease.
Self-Management
Chronic pain, by definition, lasts more than three months and affects daily function more than any pathological findings indicate. Chronic conditions such as diabetes and high blood pressure are managed over a lifetime rather than cured. FMS is another chronic condition that is managed rather than cured.
When an effective management system is followed, symptoms and quality of life improve, and the level of daily function increases. There will still be exacerbations and times of crisis. If these are anticipated and planned for, the length of time is shortened and the severity of symptoms is decreased.
As part of the first level of self-care, stabilizing loop behaviors and sleep protocol is the focus of the first week. The first week is spent with education and data collection. My book Fibromyalgia: A Handbook for Self Care and Treatment, provides personal stories as well as step-by-step individualized management program based on assessment results. A pain pattern diagram and data sheet provides insight into daily and weekly pain patterns. Completing the Associated Symptom Questionnaire helps bring awareness that FMS and chronic pain is most often accompanied by other symptoms such as constipation, bladder urgency, anxiety, blurred vision or memory problems. With an appropriate management plan, these symptoms improve along with improvement in pain, fatigue and sleep.
The second week is focused on sleep, autonomic nervous system balancing and positive self-statements. Regular sleep and awake times with eight to nine hours of sleep, a small snack at bedtime, bedroom environmental controls for noise, temperature, light and odor, and physiological quieting for ANS balancing are among the items focused on during this week. The goal is to improve the length of uninterrupted sleep and improve ANS balance, which leads to decreased daytime pain and fatigue.
Over the next weeks additional behaviors are added. They include exercise, modalities, pacing/prioritizing, rest/work cycles and positive self talk. It takes four to six weeks for new behaviors to become more automatic, so the concept of small steps with long-term change is emphasized. The Self-Care Report data sheet helps the individual keep track of progress each week.
The third week is focused on mild to moderate aerobic exercise and appropriate modalities. In FMS the response to exercise is decreased rather than increased circulation to the active area. Therefore it is important to begin exercise with low repetitions and active rather than resistive exercise. Physiological quieting techniques, practiced both before and after exercise, improve circulation to the exercising muscles.
Gradually, increased endurance and resistance can be added. One of the best initial exercise environments is water. Pool exercise in warm water and using the water as resistance provides circulation stimulation and a supportive to resistive exercise medium. Modalities can include heat and cold. Hot packs are often too heavy and cause increased pain so a thermophore, a professional grade heating pad, provides moist heat without the increased weight. Cold spray and light weight ice packs can also be very effective for pain management.
Conserving Energy
The fourth week focus is on energy conservation techniques, and pacing and prioritizing daily work activities. Additional self-care items this week include shower and bedtime stretches and positive self statement reinforcement. Pacing and prioritizing daily work activities for energy conservation includes making a list of all the jobs for the day, then picking three priority jobs from the list and giving the rest away to someone else or putting them off for another day.
The next step is to break each job into three parts and insert rest periods between each part of each job. Mixing up the jobs also helps to maintain low pain and fatigue levels. The goal now is to keep pain levels low while increasing work activity throughout the day.
Martha was seen twice a week for four weeks and then once a week for two additional visits. Her pain levels decreased from 8 to 1-2 (on a scale of 0-10), and her sleep improved to eight hours a night uninterrupted. She was back running but at a more controlled pace, and she followed a study, class attendance, running, and socialization management program she and the therapist worked out to maintain her recovery. Her modalities of choice were hot tub and iced towel roll.
"I have come to realize that listening to my body instead of just bossing it around all day helps me feel good and still accomplish most of my daily activities," Martha commented.
What a difference a management system makes in the outcome for this chronic condition compared to hands-on treatment only. Now for this patient, therapy treatments have a lasting effect.
Resources
1. Hulme, J. (2010). Fibromyalgia: A Handbook for Self Care and Treatment, 4th ed. Missoula, MT: Phoenix Publishing.
2. Hulme, J. (1998). Pelvic Pain and Low Back Pain. Missoula, MT: Phoenix Publishing.
Janet A. Hulme is a physical therapist with more than 35 years of experience. She is an international speaker on chronic pain and women's health.