September is Pain Awareness Month, sponsored by the American Chronic Pain Association. Millions of Americans live with pain from injuries, autoimmune and inflammatory disorders, cancer, and other disabilities. Pain can be acute, with a beginning and end, or it can be chronic and may last through a person’s lifetime. Acute pain, including pain associated with cancer, can usually be addressed through treatment of the underlying injury or illness. Chronic pain, on the other hand, may be more difficult to treat, requiring help from several sources: primary care providers, clinical specialists, pain management specialists, and mental health professionals. People with chronic pain may also turn to complementary integrated health specialists who may focus on supportive therapies like meditation, mindfulness, and other options.
For some, pain is a hallmark of conditions such as arthritis, fibromyalgia, lupus, and multiple sclerosis. Pain can also be a secondary condition for some physical and psychiatric disabilities. People with spinal cord injury (SCI) can experience pain from over-working their shoulders as they propel a manual wheelchair or transfer in and out of their chairs. People with cerebral palsy can experience pain in muscles and joints due to spasticity. Individuals with post-polio syndrome may experience pain from joint degeneration. Headache pain is a common condition after a traumatic brain injury. People with depression can experience body pain as part of their condition. These are just a few examples of how disability and pain may interact.
Pain has a significant impact on quality of life and can limit a person’s ability to function, so managing pain is critical. Medications, including opioids, play an important role, but too often medication is used as the sole approach to pain management when other protocols could be more effective and/or result in fewer side effects.
Research from the NIDILRR community has focused on pain both as a disability and as a secondary condition to an existing disability like SCI or arthritis. Some project focus on therapies to address or alleviate pain through physical therapy, lifestyle changes, and medication. Other projects investigate the impact that pain can have on participation at work and in the community. One project is even looking at how men and women with SCI experience pain differently.
Here are some materials from the NIDILRR community which may be helpful in understanding how pain affects participation of people with disabilities:
The Rehabilitation Research and Training Center on Healthy Aging with Long-Term Physical Disabilities (Aging RRTC) has three plain-language research summaries on living with and managing pain:
- How to keep your mood up if you have MS and chronic pain (Amtmann et al, 2015)
- The benefits of staying engaged in life despite chronic pain (Jensen et al, 2015)
- The role of happiness in people living with chronic pain (Müller, 2015)
The Health Access for Independent Living (HAIL) project has a series of fact sheets people can use to manage their healthcare so they can fully participate in the community, including a fact sheet on Chronic Pain as a secondary condition with physical disabilities.
The Northwest Regional SCI System Center holds regular SCI Forums where people with SCI and experts talk about living with SCI. Several episodes focused on pain and pain management:
- Perspectives on Pain http://sci.washington.edu/info/forums/reports/pain.asp
- Protecting your shoulders and staying active http://sci.washington.edu/info/forums/reports/shoulder_health.asp
- Relaxation and hypnosis for SCI pain http://sci.washington.edu/info/forums/reports/relaxation_hypnosis.asp
- Using hypnosis for SCI Pain management http://sci.washington.edu/info/forums/reports/hypnosis_for_sci_pain.asp
- Multidisciplinary Management of Pain in Spinal Cord Injury: An Approach to Improve Pain, Function and Psychological Coping http://sci.washington.edu/info/forums/reports/pain_2010.asp
Our Research In Focus series highlighted research from the Spaulding Harvard SCI Model System Center which found that people with SCI who were more active were less likely to experience pain.
Take a look at the research from the RRTC on Enhancing Activity for Individuals with Arthritis (ENACT) which focuses on promoting healthy activity and participation.
These are just a few examples of what the NIDILRR community is doing in the area of chronic pain, pain management, and participation. Browse through current and completed research and development projects focusing on pain, pain management, and pain as a secondary condition.
Are you interested in research literature in this area? Check out part 2 of this article where we explore articles, books, and reports available from the NARIC collection!