Charcot-Marie-Tooth in Focus: Dealing with Pain

by Keri Calandro : 10/18/2011 6:21:44 AM : Category: adults


Not all people with Charcot-Marie-Tooth experience pain. Those who do are among the 116 million people a year who have some kind of pain. When it is short term, pain alerts us that something is physiologically wrong with our bodies. But continued pain doesn’t seem to serve this purpose. Over time, continued pain can be demoralizing. It exacts an emotional toll of hopelessness and depression affecting personal and professional relationships. Continued pain costs over $500 billion a year in related costs such as wages, workers’ compensation and therapies.

“There is something that happens when pain takes over your life,” says Penney Cowan, Founder and Executive Director of the American Chronic Pain Association. “Chronic pain takes you as a person.  It becomes who you are--your identity, everything you think, love, do is hidden by pain,” she explains. “A person is so much more than the focus on abilities.”

For six years during the 1970’s Cowan suffered with continued pain while she searched for a cure.  Reluctantly, she attended a pain management program at the Cleveland Clinic in Ohio.  “I went in there a patient certain to fail and I left a person.”  The experience was so profound she knew she had to continue the work for other people as well as to maintain her own well-being.  In 1980, Cowan started a pain management support group in her church basement.  Thirty one years later, several hundred ACPA support groups meet across the US, in Canada, Great Britain and many other countries. 

Clearly, the support groups help. “Talk to someone with continued pain and they can tell you that no one wants to hear about it,” Cowan told us. “People will roll their eyes as if saying ‘Oh, you’re one of those people’ [who complain all the time]. Or they make jokes saying things like ‘I live with pain’ and cite their spouses or a friend. Then, they either tune you out or say ‘suck it up and live with it.’”

In addition to access to support groups, the ACPA offers education in pain management. “Out of desperation, people find us. They see us as a last resort after they have tried everything else. We tell them they have to change from a passive patient to an active participant.” Part of that transition comes from the ACPA and support groups. “By making a connection we can help people realize that they are not alone. A person in pain can’t tell me I don’t understand. I do. I am still in pain. I have learned to manage it and to live an active life.”   In spite of the pain it brings, Cowan often travels long distances in connection with her work at ACPA.  “It is important for me to travel to these people because they are important. We are all in this together.”

The transition of moving from patient to person begins with redefining oneself as a person first, then as a person with pain. Cowan reinforces not letting yourself be defined by pain.  “It is empowering to view oneself as a person first. It allows for the groundwork to move forward.  The people who come to us have learned to help themselves. I ask them, how can I help you to help yourself?  And then we take it one step at a time.”

Education about pain and pain management needs to begin early and is as important as other health education. Starting with our children, we must encourage them to pay attention to their bodies. Whether they are athletes or not, if there is an injury or pain, they should wait until it goes away before resuming the activity.  Our current mindset of telling our kids to get up and shake it off can have dangerous consequences down the road.  Remember that pain is a signal something is wrong. The ACPA has begun to work with school nurses and the National Athletic Trainers Association of Coaches to push for laws requiring medical personnel to be on-site at every school sporting event. 

Ask almost anyone living with Charcot-Marie-Tooth, and they know that pain can be a prevalent symptom. CMT affects sensory nerves as well as motor, and these damaged nerves can signal to the brain that there is pain when there really isn't. Dr. Steven Sherer wrote a comprehensive article on pain and peripheral neuropathy. Managing pain, he says, is a balance between addressing the symptoms effectively and minimizing side effects from any pain medication.  He states that the partnership between doctor and patient is the foundation of effective pain management.

Knowing how to manage pain can make all the difference in how we live our lives.  For information about pain in relation to specific conditions visit the ACPA website:

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