As a patient with chronic regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD), I am lucky to have a pain management physician I have been partnered with since 2004 – whom I trust, who trusts me and who understands my complex medical issues. As I have visited many physicians and other specialists on my medical journey before, and after partnering with him, this hasn’t always been the case. Recently I spoke to an audience of healthcare professionals at a healthcare conference and left them with this takeaway of some helpful treatment tips I have comprised in all my years as a CRPS/RSD, chronic illness and pain patient.
1. Patients with CRPS/RSD are on individual journeys and every patient is different. Even though most patients have similar symptoms and the common theme is very severe pain that is greater and lasts longer than the scope of the inciting event/injury, these symptoms can vary in duration, intensity and overall disability. Also, many CRPS patients have co-morbid (simultaneous) medical conditions which may bring additional challenges unique to treating each patient.
2. Be a healthcare partner. Because CRPS/RSD is so poorly understood with so many differences in opinions amongst practitioners, often times patients know more about CRPS/RSD than their practitioners. But, they especially know more about their individual conditions and how CRPS affects them. Listen closely. Educate. Find out your patient’s goals. Help come up with strategies together that work specifically for each patient, thus being a partner in solution-oriented healthcare.
3. Treat the whole person instead of the disease. This means gaining insight into hormonal, endocrine, psychosocial, and biochemical processes to ensure the patient’s systems are in balance – this will allow the greatest opportunity for treating CRPS/RSD.
4. Watch for supplemental symptoms and medical issues CRPS/RSD can cause. With the punishing, continuous and extreme physical stress and severity of pain and symptoms resulting from CRPS/RSD, patients may develop cardiac conditions. These conditions may include: situational anxiety, depression, insomnia, PTSD, high blood pressure, diabetes, internal organ issues, irritable bowel syndrome, and the like. It is important not to ignore these additional symptoms and medical conditions that may arise.
5. The goal of treating CRPS/RSD is to calm down the patient’s nervous systems, and not bring more stimulation to an already misfiring nervous system in overdrive. CRPS is similar to a computer motherboard being dropped in water and malfunctioning. Calming down the fight or flight response occurring in the patient’s body is necessary. This is accomplished through various methods, treatments, medications and coping strategies. However, beware of overstimulating the body further and treating patients as guinea pigs. Every patient is different – what might work for one patient might not work for another. There is a reason CRPS stands for complex regional pain syndrome.