Editor’s note: If you or a loved are living the CRPS, depression, and/or anxiety the following post could be potentially triggering. You can contact the Crisis Text Line by texting “HOME” to 741741 or call the National Suicide Prevention Hotline at 1-800-273-8255.
It’s been called the most painful condition known to man – worse than childbirth or even the amputation of a finger without anesthetic. Complex Regional Pain Syndrome causes chronic suffering so intense that some patients lose hope, which explains why CRPS is often referred to as “The Suicide Disease.”
Living with Pain
Simply put, CRPS (sometimes called RSD or Reflex Sympathetic Dystrophy) is a severe illness that affects the nervous system. Affecting about 200,000 people in the U.S., the rare neuro-inflammatory disorder typically occurs following an injury, surgery, stroke, or heart attack. It usually affects one limb (an arm, leg, hand, or foot) and is characterized by unrelenting pain that feels simultaneously deep, aching, cold, and burning. CRPS can also cause swelling, weakness, and allodynia, which is pain caused by various stimuli that wouldn’t normally cause discomfort, from the touch of a bed sheet to the rustling of a plastic bag. CRPS often co-occurs with depression and anxiety as well.
“I’m in constant pain,” says Stuart, one of the Health Stories Project community members who responded when asked about living with CRPS. “I’m unable to drive, I use a walking frame or wheelchair, and I have functional blindness in my right eye.”
Once an active husband and father, Stuart says CRPS has radically changed his existence. “I have no social life. I have lack of mobility and lack of freedom. Even carrying a cup of coffee from the kitchen to the living room is difficult.”
“My day is full of pain and discomfort and reminding myself that I have to push through it,” says Charlene, who works full-time and takes care of her five-year-old child.
“By the end of the day, my foot is swollen and on fire and I am ready to collapse from exhaustion,” she says. “I am constantly reminded of the things I can’t do and how careful I need to be. I am constantly having to pace myself or spend time sitting in order to make it through the rest of my day.”
For Michael, who was diagnosed a decade ago and suffers from a form of CRPS that affects his entire body, just getting out of bed is an extraordinary challenge. “You would rather be asleep, if possible, than awake and feeling the searing pain throbbing or burning its way through your body.”
Dealing with the Stress of a Chronic Condition
While the medical community’s understanding of CRPS continues to advance, many aspects of the condition are still a mystery. There is no conclusive test to check for it, and while there are treatments that address various aspects of the disorder, there is no known cure. A lucky few patients might achieve remission, but for the majority of sufferers, the pain can last for months, years, or even a lifetime.
It’s no wonder that so many patients with CRPS struggle with profound depression and anxiety. Multiple studies have shown a relationship between CRPS and the risk of suicide. In one recent study of 39 patients, 75 percent were considered at high risk for suicidal ideation. Because of this, experts recommend routine psychiatric evaluation and intervention in the treatment of CRPS.
“Years ago, I was admitted into the hospital for clinical depression,” says Beth. “I now work with a psychologist and psychiatrist, and have taken many therapy classes to help me deal with my issues.”
“God bless all those that suffer from this debilitating disease,” says Michael. “I must admit that at my absolute worst, the thought of suicide did cross my mind. More than once.”
Even CRPS sufferers who don’t have suicidal thoughts can fall into a deep funk. “It’s easy to feel depressed or helpless or even lonely because of the limitations the disease places on you,” says Charlene.
For those diagnosed with CRPS, managing physical pain tends to be the priority. But the mental anguish caused by the disorder can be just as severe. It’s important for patients to discuss psychological symptoms when developing a pain management plan with their medical team. In addition to medications and talk therapy, both of which can help with depression and anxiety, patients are encouraged to find other ways of coping.
“I haven’t felt suicidal, but I’ve felt down about having CRPS,” says Stuart. “One way I have of overcoming this feeling is by getting out on my mobility scooter for a ride around my area. Just making eye contact with strangers and a smile or a nod of the head or a passing hello, and hearing the birds and wildlife on my trail and feeling the sun on my skin, can improve my mood.”
“I try to focus on things that rejuvenate my spirit,” says Charlene. “My child, a nice hot bath, a good book. These are all things that help me relax and get my mind off everything.”
Of course, the usual coping strategies might fall short on really bad days. Professional help is readily available for those experiencing suicidal ideation. Keeping things in perspective can also help.
“If you are truly suffering from this disease, you may have thought about taking your own life,” says Michael. “That would only hurt those who love you and admire you for what you are experiencing. That heartbreak might be worse than this stupid sickness.”
When it comes to advice for his fellow sufferers of CRPS, Michael keeps it simple. “You are not alone. Fight this fight and do not let it get the best of you.”