Written by Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA and Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA for the RSDSA blog.
If you are reading this, it means you, a friend, or a loved one has been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis.
There are many good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best outcome. Second, the wrong treatment can actually lead to a worsening of this condition. Third, from a practical standpoint, your insurance coverage may be limited and thus getting the right treatment first which is covered is very important.
There is both good and bad news. We will start with the bad news. Many of you will not have adequate insurance coverage to provide the absolute best care for CRPS. Problematic as well is that even with good insurance coverage, treatment available in your local community may not be ideal or even available. With that said, the good news is that if you will take time to educate yourself about your CRPS condition, you have a much greater chance of getting what you need to get better and to manage this condition.
While some treating physicians may focus on medications and interventional procedures (i.e., injections, device implantation, etc.), and these can certainly be an important part of treatment, the best treatment is approached from a biopsychosocial perspective by an interdisciplinary team of treaters. This means treating you as a whole person and paying attention to both the physical and psychological aspects of chronic pain. This approach involves coordinated medical care with a treatment team, other than yourself and significant others, including a physician pain specialist, a physical and/or occupational therapist and a psychologist.
In this type of biopsychosocial approach, it is critical that the person with CRPS, become educated about the condition and be the “captain of the ship” when it comes to managing medical care. Being passive and leaving it all up to the doctors and therapists just won’t work. The person with CRPS needs to understand his or her condition and how to treat it. That means becoming informed and educated. Whatever therapy is provided, it will not be enough if the CRPS patient doesn’t “practice” what they are taught 24/7 both at home and away from the doctor and the therapy center.
The ideal setting for treatment is where the physician is a rehabilitation-oriented pain specialist and not just a doctor focused on prescribing pills and doing procedures (i.e., nerve blocks, implanted devices, etc.). This means ideally, that the physician works closely with a physical and/or occupational therapist and a psychologist with expertise in treating CRPS. It is always best if they work out of the same facility as a team (this is called interdisciplinary) but even if they are in separate offices, it is important that they communicate and work together as a team (this is called multidisciplinary).
Getting back to the issue of education, while some physicians and therapists feel threatened by an educated patient who is knowledgeable and asks questions – and you need to be careful not to make the treater feel uncomfortable – it is perfectly okay to be educated about your problem and ask questions. High-quality treaters enjoy questions and are not threatened by knowledgeable patients. Questions you can ask include “Have you read up about CRPS?” and “Have you made yourself familiar with the usual medications and treatments prescribed for this condition?”
Here are some other things to consider when you are evaluating obtaining the best treatment for CRPS.
- Identify other individuals with this condition in your community to find how they have done with their treatment and who they have treated with. Does their physician, physical therapist and psychologist listen to them and provide effective treatment? Are they being provided education about the condition and a good home program to expand and work on what they are learning when they’re in therapy?
- Tell your primary care family physician that you are familiar with the diagnosis and want to make sure you are being referred to a pain physician who is rehabilitation oriented and not someone who focuses on prescribing medications and injections and other invasive treatments.
- Interview the doctor and therapist to see if they are truly familiar with and experienced in treating CRPS. Is the medical care provided truly coordinated between the various disciplines?
- Ask the physical therapist how commonly they treat people with CRPS and if they are familiar with some of the more recent graded motor imagery approaches such as mirror box therapy.
- If there is no physical therapist in your community that consistently treats people with CRPS, ask to treat with the therapist that sees the most people with chronic pain. Many of the same pain management skills can be applied to managing CRPS.
- As you speak with the physical therapist, see how willing they are to provide full answers to your questions. Quality CRPS treatment requires a lot of education and your therapist should be eager to provide you with the answers to your questions.
- Many psychologists deal with symptoms like depression and anxiety, but ideally, the psychologist needs to be trained in pain management. It is very important that they use cognitive behavioral therapy (CBT) as part of their therapy as CBT has been found to be highly effective for managing pain. Cognitive behavioral therapy is a form of psychological treatment that focuses on examining and changing the relationships between maladaptive or faulty thoughts, feelings, and behaviors.
The RSDSA website is a great source of information. Other sources of information are The American Chronic Pain Association and The ACPA Resource Guide to Chronic Pain Medications & Treatment.
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