The Challenges of Chronic Pain
Horizons in Hemophilia, December 2011
By Cathy Hulbert, LCSW, Social Worker and Penny Kumpf, RN, VWD Community Outreach Nurse
Chronic pain and the goal of finding new remedies were the focus of a presentation at the National Hemophilia Foundation’s annual meeting last month in Chicago. Those presenting on this topic were HoG social worker Cathy Hulbert, LCSW, HoG nurse Penny Kumpf, RN, and Jessica Hinkle PT, DPT, PCS, a physical therapist with Children’s Healthcare of Atlanta. This was a joint NHF session with physical therapists, social workers and nurses in the audience. Other members of the audience included people with hemophilia.
The title of the presentation was “Thinking Outside of the Box About Pain.” Topics included resources for people with bleeding disorders such as a brochure on speaking to doctors about pain which is available in English and Spanish; as well as research and discussion about complementary and traditional approaches to pain management.
The presentation included a videotaped interview in which an HoG client with severe hemophilia talked about using a “Transcutaneous Electrical Nerve Stimulation” unit for muscle pain. He shared his story about chronic pain and how this unit, known as a “TENS,” has improved his quality of life by easing certain types of pain (though not all of it) and giving him more feelings of control. If you want to know more about this, we urge you to speak with your doctors.
Research was discussed, as was a Congressionally-mandated report commissioned by the Institute of Medicine (IOM), called “Relieving Pain in America, a Blueprint for Transforming Prevention, Care, Education and Research.” Pain is the most common reason for doctors’ visits in the United States and the number one reason people go on disability, according to the IOM. Yet patients often find it hard to talk about this subject with their doctors. This reader-friendly report includes quotes from people suffering from chronic pain and from doctors who feel that the country must do a much better job of treating it. It includes many research references if you would like to know about new research in this area.
We look forward to speaking with you about this important quality-of-life issue and helping you find resources for pain. We will be happy to let you know about new research in this area as we learn about it. Please speak with your doctors about pain concerns and know that HoG nurses and social workers are available to help you find resources.