by Samantha M. Adcock

When most people think about the Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSD) they usually think about it in terms of how it effects the person who has developed this rare neurological disorder.

Most will think about the pain, both physical and emotional the the CRPSer experiences on a daily basis. They think about how their quality of life has changed. Many are no longer able to function a the same level as before, unable to do some tasks that are seemingly simple to others, and are now beyond their capabilities without assistance. Some folks who were slender marathon athletes are now obese and confined to a wheelchair or bedridden due to a combination of the progression of the disease and the cornucopia of prescription medications they must take in order to have any meaningful quality of life.

A major percentage will think about the frustration involved in obtaining any type of medical care who is knowledgeable about CRPS/RSD that they can trust to treat them effectively, or simply without hurting them. One topic on the minds of CRPSers is their inability to obtain an effective treatment because the medications that DO actually provide some relief have to be prescribed at doses too high for conditions other than terminal cancer in some states.

What the lawmakers fail to realize is that there is a good reason that CRPS/RSD is called the Suicide Disease.   ¹A web-based epidemiological survey with CRPS-I patients estimated that 20% had attempted suicide, and 46.4% reported experiencing suicidal ideation. A recent study to determine which included patients with both CRPS-I & CRPS-II, Risk Factors for Suicidal Ideation among Patients with Complex Regional Pain Syndrome found that 74.4% were at high risk and 25.6% were at low risk for suicidal ideation. Risk factors significantly associated with suicidal ideation included depression, severity of pain, and low scores on the Global Assessment of Functioning Scale (GAF). No significant correlations were found between suicidal ideation and anxiety or quality of sleep.

What many fail to realize is that CRPS/RSD has a Ripple Effect. CRPS doesn’t only affect the person with the condition, it touches everyone in their lives. Everyone who cares about them is affected. Their family members, friends, co-workers, their medical providers. Everyone around them watches them struggle with this debilitating disease with varying levels of acceptance.

Some in complete disbelief that any condition could possibly be causing as much pain as the person is claiming, so they are obviously faking, exaggerating or simply drug seeking. These peoples lack of education and lack of compassion make the situation worse for the CPRS/RSD patient, while they tell themselves they are “helping” them come to terms with their “addiction” problem, because that could be the only reason in their mind a person would be on as much medication as a CRPS patient needs. A few have actually gone so far as to stage an “intervention” instead of educating themselves on the condition and providing the positive support their loved one truly needs.

Most try their best to be supportive while feeling completely helpless and devastated themselves by the depths of their loved ones suffering. They pick up the slack for the things that the person with CRPS is no longer able to do. Anything from cooking the meals, washing the clothes, to helping them bathe, dress and cut their food because their hands no longer function well enough to cut their meat. They do all this with a smile while crying inside and trying not to let their CRPSer know how much they are hurting as well. The pain may not be physical, but that doesn’t make it any less real.

Medical providers are often undereducated about CRPS and many haven’t even heard of the condition when one shows up in their office or lab. So, they are then faced with this patient who is “educating” them, and explaining that they can’t be touched. Since they weren’t taught about the condition, they are often shocked when a patient comes in with such a complex medical history  the air flow from an A/C or heat vent  or the brush of their lab jacket against an affected limb causes the patient to burst into tears or scream in pain.

To help the Family, Friends & Caregivers of people with CRPS we have an online support group that is exclusively for them.  If you or someone you know could benefit from this group, please feel free to join us.

HOPE & Support 4 Family, Friends & Caregivers of CRPS/RSDers

¹Agarwal S, Broatch J, Raja S. Web-based epidemiological survey of complex regional pain syndrome-1. Anesthesiology. 2005;103:A902.

²Lee D-H, Noh EC, Kim YC, et al. Risk Factors for Suicidal Ideation among Patients with Complex Regional Pain Syndrome. Psychiatry Investigation. 2014;11(1):32-38. doi:10.4306/pi.2014.11.1.32.