“If they don’t see an injury, or x-ray an injury, or anything like that, they said send you to the psych ward to do a psych evaluation. I don’t know that there was any cause, I just got to the point where I didn’t like being touched on my legs … It was like charcoals were on my legs, then it got to the point that I couldn’t turn my head or lift my arms up. None of my tests showed anything.
In fact, it [symptoms] started in 1985 and I wasn’t diagnosed until 2001. All those years I fought doctors. They put me on vitamin C, on D, they said it was because of my varicose veins; they had no idea and they kept prescribing drugs. After all these drugs, I ended up with drug-induced hepatitis. Soon after, there wasn’t any doctor that would touch me.
My own husband at the time didn’t believe me, he thought I was making it all up. At my church, people asked me if it was a hug day or not. I HATED that question. They all saw me and felt bad for the sick person I was, not for me, Angela1. No one asked me normal questions. It was never how are your grandkids or do you want to get lunch today; it was always how are you doing today, enough to get a hug?
I was finally able to see a rheumatologist here who referred me to the STEPP program and I can tell you, this is has been the best decision of my life. I have made some of my best friends here, and I have learned to live with my condition. I may not be able to completely do the things I used to be able to do, but I at least know my limits and am able to pace myself and not break down when I am frustrated, and believe me it is frustrating, with not being able to do what I once was able to do.”
These are the words of Angela,* a woman who drives almost 120 miles to come to a weekly two-hour interdisciplinary care (IC) session for her chronic pain. She tells me how she wakes up in the morning with burning pain and can manage to walk only a few hundred feet in the day before burning out. She is ostracized from the rest of her community and her healthcare providers. At one point, she became so embarrassed with her pain and unpredictable symptoms that she became home-ridden. Angela had no choice but to quit her job, take up unemployment insurance, disability insurance, and see doctors to help find a cure. After seeing several different doctors, she finally came to the Washington University School of Medicine Pain Clinic where she was referred to The St. Louis Institute of Rehabilitation’s STEPP Program. Here, she has finally been able to feel welcomed and, more importantly, relate to others undergoing IC for their chronic pain.
Chronic pain is complex: it can be as general as lower back pain or as specific as trigeminal neuropathy. Angela’s diagnosis is a wild concoction of fibromyalgia, restless leg syndrome, bulging discs, neuropathy, nerve damage in both legs, occipital nerve migraine, degenerative disc disease, stenosis in the lumbar and cervical areas, depression, chronic back pain, and scoliosis. Chronic pain like Angela’s is very difficult to diagnose because of the variety of physiological reactions. While the disease is not well-understood, the effects of chronic pain are no less than any other chronic illness. Angela was unable to find appropriate treatment for years and, to add to her burden, she couldn’t continue her job as a military engineer. Drugs hardly relieve any of Angela’s throbbing pain, and she is still limited in her mobility and in her ability to work. This is not an uncommon predicament faced by other chronic pain patients in the US.
Since each chronic pain patient requires individualized care and traditional biomedical treatments are not usually effective, chronic pain costs the US economy over $290 billion per year in direct and indirect medical costs (Schatman 18). Common medical interventions such as nerve blocks, spinal surgeries, implantable devices, and pain medication cost patients from $10,000 to a $60,000 per year (19). Lumbar surgery is one of the most common approaches to chronic lower back pain, but has a incredibly high costs and a 15-18 percent complication rate with a 10 percent probability of reoperation every year succeeding surgery (28). The implication of these poor figures is even more significant when considering that the return to work rate (RTW) associated with lumbar surgeries is suggested to be as low as 10 percent (30). These outcomes can be compared with interdisciplinary care approaches like that in the STEPP program. Programs like STEPP, also known as multidisciplinary pain rehabilitation programs (MPRPs) successfully utilize physical therapy, some invasive interventions when needed, and psychological therapy. MPRPs present a RTW of about 48-65 percent and and propose an average cost of $15,339 per patient (30, 19).
Specifically, MPRPs help patients cope with their conditions and return to work. However, a lack of recognition by insurance companies for reimbursement towards IC for chronic pain has given little incentive for facilities to provide IC care. From 2001 to 2006 alone there was a drop from 171 to 118 licensed IC centers in the US (242). When considering return to work rates for IC care relative to other treatments modalities, the economic benefits greatly favor implementing financial incentives to maintain IC centers.
As Angela has said herself, “I can tell you absolutely that I look forward to making this 120 mile drive up here every week. If it hadn’t been for the STEPP program, there would be no way I could be up and around like I am now … Now I am not saying I can do everything I could–I mean there are still those days with so much pain I just want to be alone and scream, but at least I can pace myself and get back to get out of the house, and be out here in public without being embarrassed of how people seem me.” Although this is just one case of how IC has benefitted a patient, there are a great number of patients who feel similarly.
Due to the relative unfamiliarity of both insurance and the medical community with chronic pain, it is difficult to justify the reimbursement of treatment for chronic pain using IC care. The future of chronic pain care depends on researchers’ ability to publish these results to convince both medical and political community to create a better financial ground so that these IC centers can help patients like Angela. As more patients like Angela undergo IC care, more data is being discovered to suggest IC is a highly effective treatment modality. However, it must be recognized that IC is not a silver bullet; it’s most significant impact is to help patients deal with their pain and perhaps even return to the workforce.
*Angela is a pseudonym chosen to protect the privacy and identity of the individual.