Did you know that there is such a thing as an International Association for the Study of Pain (IASP)? They recently worked on revising the definition of pain that has been in place and guided the training of doctors and the treatment of those with pain for the last 40 years.
While the change is subtle, it opens for more multidisciplinary treatment of those living with chronic pain which had been largely ignored in the previous definition. The new definition adds the words “or resembling that associated with” and eliminates the phrase “or described in terms of such damage.” So the new definition reads as:
I learned of this change after being contacted for an interview with Jackie Rocheleau, a healthcare contributor to Forbes.com who was writing an article about the definition change. This change was precipitated by the research of the past few decades that show that pain is much more complicated than just tissue damage. The research shows that those living with chronic pain have an over-amplification of the nervous system and have actually dropped the threshold for which the brain interprets a sensation as pain causing pain to happen even though there is no tissue damage.
Hope for New Treatments for Chronic Pain
In her article “After 40 Years, Updated Pain Definition Aims To Include Those Once Left Out”, I had the opportunity to share what I hoped this change in definition would mean for chronic pain patients like me. I explained that while my pain is everywhere all the time, it isn’t of the level where the pain stops me from functioning too much. (I know that I am very fortunate.) My pain, I usually explain, is the pain you’d feel if you worked out all over really hard one day after doing nothing for three months. It’s deep muscle ache for the most part (with some joint pain). However, the symptoms of chronic pain that tend to stop me from being able to function well (like not being able to commit to a job or a friend get-together) are brain fog and utter fatigue that seems then to lead to deep sadness. This isn’t generally the chronic pain symptoms that are acknowledged by pain scales, pain evaluations, or treatment.
I was heartened to read that the change in definition is to invigorate multifaceted treatment of patients with chronic pain by the addition of how it affects every aspect of the pain patient’s life physical, mental, emotional, spiritual, and social. In addition, writes Rocheleau, “Working with insurance carriers is another way to address those needs. Insurance typically covers drug interventions for pain, but in recent years some have started covering other pain treatments, too. If insurance carriers adopt the language in the new definition, a multifaceted approach might be more accessible to people with pain.” As I explained to her when we interviewed over Zoom, many of the alternative protocols that have proven to help with chronic pain such as meditation, yoga, Tai Chi, massage, myofascial release, Low Dose Naltrexone, and others are not covered by insurance.
My Vision for Ideal Chronic Pain Health Care
I feel the key to having the ideal set up for treating chronic pain (besides having open-minded, kind doctors who have chronic pain education) is that all the doctors in your life have communication. Having a team of doctors (much like I used to be a part of a team of students/teachers) can bring the missing piece of collaboration to address the whole of the person. In my 6th-grade team, the four teachers (math/sci, soc st/learning connections, reading/writing workshop, and special education teachers) would come together and discuss each student to figure out the best way to help them; we were all on the same page and gave the same plan from each of our students. I had that when I went through the 10-week pain management program, and it was WONDERFUL! I believe it’s a HUGE part of why I’m doing so much better as quickly as I have than when I first went on long-term leave from teaching.
Pain is a whole systems issue; it does not just reside in the body but in the mind as well. Thus, it impacts the psychosocial life of not only the chronic pain survivor but their loved ones. As we come together to understand and treat chronic pain more effectively, we cannot lose sight of the holistic approaches needed to support not only the one coping with pain but those systemically connected to them.Chronic Pain: how to Approach a loved one without pushing them away
Five-months after my diagnosis with Fibromyalgia (15 years after my Interstitial Cystitis diagnosis), I lucked into finding and getting into a ten-week pain management course through our local rehabilitation hospital, Mary Freebed of Grand Rapids, MI. I know what good care for chronic pain can be like. While the program has room for improvement, it went a long way into meeting my ideal dream care. I learned a lot from the pain medical doctor, pain psychologist, physical therapist, and occupational therapist I worked with 2-3 days a week at 3-4 hours each visit. One wonderful thing was that they worked as a team with each patient, meaning they met once a week to discuss each of their shared patients, deciding on the next program to use or issues to focus on. After the ten-week program, I felt like not only did I have the tools to go forth in developing my pain management plan but also the knowledge and support. I’m able to get a reboot at any time. In fact, they told me that it is very normal to hit a slump and need to come back for in-person guidance.
My Recommendations for the Perfect Chronic Pain Management Center
(If Anyone is Asking)
- A self-contained facility that holds all the services like that of Mary Free Bed or The Frida Center
- Patients would be given an overall evaluation to determine how chronic pain is affecting them, giving focus to the whole person. Part of this evaluation would be an in-person interview of at least an hour.
- Patients would be assigned to the team that best fits the needs based on the evaluation.
- The patient would undergo an involved, pain management “boot-camp” of sorts, consisting of 20-30 hours of treatment, training, therapy, and education about pain management.
- The team would meet regularly to adjust the program as needed, but the pain patient would have major input into the process. (Control is important for those with chronic pain because they can feel like they have none).
- A variety of offerings would be available as no set treatment plan has been found to work for every chronic pain patient.
- These offerings would be covered by insurance (because the doctors deem they are needed for treatment) much like any other wellness checkup or treatment is currently covered.
- These offerings would adjust based on best practices and research into their efficacy.
- These pain facilities would be located all over much like you find urgent care facilities.
What We have is not Working
Our current treatment for chronic pain is not working. Since my 10-week training (an hour drive from my home), I have been doing this largely on my own. While my general practitioner is caring and supportive (he prescribed me Low Dose Naltrexone based on me providing the research that backs its use with those living with Fibromyalgia), he cannot really guide me as to how to adjust its dose. He, and my other doctors, give me something to treat this or send me to that specialist to treat that. It’s a whack-a-mole mentality that just doesn’t fit the chronic pain patient’s actual experience.
Places to Use as Models for this Ideal Configuration
- Pain Rehabilitation Center at Mayo Clinic
- The Freida Center for Fibromyalgia
- Mary Free Bed Pain Rehabilitation
- MBSR Mindfulness Training (free online course via palousemindfulness.com)
- Tamarac Wellness Center