3 People With CRPS Share What It's Like To Live With The Most Painful Condition Known

CRPS is the most painful condition known to mankind, and you might never have heard of it. In the 1970s, two researchers from McGill University in Montreal developed the McGill Pain Questionnaire, a self-reporting tool that uses descriptive words to determine the intensity and type of pain a person is experiencing. The accompanying McGill Pain Index runs on a scale from 1-50. Unanesthetized first-time childbirth ranks high. So does the amputation of a finger or toe.

But there is one condition that ranks even higher, and it’s a little-known condition called Complex Regional Pain Syndrome or CRPS. CRPS scores a 42/50 on the McGill Pain Index. Unlike some of the other high-ranking experiences like childbirth or amputation, the pain from CRPS doesn’t always go away, and the pain can be literally constant.

CRPS is so rare that even some medical professionals have never heard of it.

The hallmark symptom of CRPS is intense pain that persists much longer than expected and is out of proportion with the initial injury or procedure.

The National Institute of Neurological Disorders and Strokes explains that, “Most CRPS illnesses are caused by improper function of the peripheral C-fiber nerve fibers that carry pain messages to the brain.” This can follow a fracture, surgery, sprain, or even casting. Once in a while, CRPS can manifest without any obvious cause.

Basically, someone with CRPS feels excruciating pain literally all the time because their nerve signals go a little haywire. They start to interpret every stimulus as pain. This pain can feel like burning, throbbing or sharp stabbing pain. It can cause skin to change colors, joints to stiffen and swell, and can even rob people of their mobility. It almost always affects an extremity, and it doesn’t go away just because the initial injury heals.

CRPS is a chronic pain BEAST.

Despite the seriousness of this syndrome, even some medical professionals have never heard of it. Because of this, CRPS can go undiagnosed for many months—which is tragic for a condition that responds best to treatment within the first 3-6 months.

Three sufferers of CRPS agreed to share their experiences with Scary Mommy. These are their stories.

When Eric, a 50-something realtor from Nashville, TN, was diagnosed with CRPS in early 2016, he had never even heard of the condition.

Eric developed CRPS after knee surgery, but it wasn’t the knee that was affected; a nerve block to help with post-surgical pain triggered the chronic pain condition in his foot. In the weeks following Eric’s surgery, his knee improved and improved, but his foot “hurt like a mother fucker,” he says.

Within weeks of surgery, Eric’s ankle and foot began to alternate between feelings of being electrocuted and being set on fire. Max doses of multiple narcotics didn’t touch the pain. Twice, he lost consciousness due to the intensity of the agony, and was transported to the hospital.

After several months of constant, unbearable anguish, Eric finally came across a physician who knew what was happening. He told Eric that he believed his suffering was due to CRPS.

Initially, Eric was told to prepare to lose the use of his foot and accept that he would likely become a wheelchair user due to his astronomical pain level, managing the best he could with morphine for the rest of his life. He was given some pamphlets about the high suicide rate in the chronic pain community, and his team suggested counseling and mentoring from another CRPS sufferer.

Eric could not accept that there was no hope.

He knew that his mental health — and his life — would be in serious danger if he couldn’t improve his pain levels, so he began seeking every single treatment available to him, whether it seemed promising or not. So he began receiving ketamine infusions, attended physical therapy, acupuncture, desensitization therapy for the skin pain, mirror box therapy, and psychological counseling. Then, he removed a lot of foods from his diet, including all gluten and pork. He pushed through excruciating pain to increase mobility in his foot, even waking up in the middle of the night to take long walks when the pain was intense. “Moving helps more than resting,” he explains.

When Eric’s sister told him she had heard about a doctor in Italy who was trying an experimental treatment using osteoporosis drugs for CRPS, he brought the data to his doctors and within a few months, he was able to receive the drug at home, off label.

Eventually, something worked. He still isn’t sure what it was. One day, the pain began to subside, and today, Eric considers himself in remission. He sometimes feels a bit of tingling or stinging, but for the most part, he lives without the pain of CRPS. “I don’t know what did the trick, honestly. About six months after my last treatment with the osteoporosis drug, the pain just disappeared. Was that the fix? Was it acupuncture? Therapy? Time? We will never know,” he shrugs.

In 2011, Minnesota native Christina was hiking a trail with her family when she decided to run through a grassy meadow with her sister-in-law.

Her foot landed in a big hole, and she felt a distinct pop. “I tore all of the ligaments in my ankle, had bone bruises and bone marrow edema,” Christina explains. “It was a horrible sprain, and it just would not heal.”

Initially, her doctors prescribed rest and explained she would be back on her feet in a few weeks. Unfortunately for Christina, it wasn’t quite that simple. Despite attending physical therapy four times a week and following the rest protocol outlined by her orthopedic surgeon, Christina’s injury continued to become more painful, reaching a point where it became unbearable.

She began having searing pain in her skin, similar to the feeling of burning herself with a hot iron.

Even her bedsheets caused unspeakable pain if they brushed the affected area. Christina’s foot swelled and turned colors, sometimes appearing almost black. She lost muscle and bone mass in the foot because she couldn’t bear weight. Her foot hurt every moment of her life. “Like knives were cutting my skin open,” she sighs.

She received a diagnosis of CRPS about three months after her injury. Through a long, arduous process of near-constant rehab and physical therapy, she was able to regain her mobility and heal. She attended rehab for 3 to 5 hours every day, relearning how to bear weight and walk on her foot. Her doctors used aqua therapy, touch therapy, mirror box therapy, and any other available therapy that they thought could possibly help. Almost all of the cost was out of pocket— Christina acknowledges that without the financial means to do that, she might never have walked again.

One CRPS treatment that Christina refused was pain medication.

“Before my injury, my husband and I were trying to start our family. We wanted to continue, but typically, they will put you on painkillers to help you withstand the therapies. I asked to do the treatments without being medicated. Everyone was like, ‘It’s going to be really hard, but we can work with you if you’re willing,’” she explains. Christina chose nerve blocks instead of narcotics, and they took enough of the edge off the pain for her to make progress.

It took nine months of daily therapy for her pain to become manageable enough to continue strengthening on her own. Ten years in, Christina is able to manage her condition with a combination of exercise and dietary changes. She doesn’t have to follow a strict diet, but she is mindful of things that heighten her pan levels. And she stays active. “Movement is life-giving for this condition,” she explains. “As long as I’m moving, I manage around a 2 out of 10,” she explains—a vast improvement from the greater than 10 pain she was feeling when she was diagnosed.

Brenda’s CRPS story doesn’t tie up in such a neat bow.

Brenda, an early-thirties mom and former professional photographer, has a much different CRPS story to tell. A seatbelt injury in 2014 left Brenda with serious rib damage that affected her entire left side. It took multiple surgeries to attempt to correct the issue. During her third operation in 2017, something went catastrophically wrong.

Brenda doesn’t have any concrete answers, but it is her belief that the surgeon accidentally, but knowingly damaged her spine. He has never admitted any wrong-doing, and he won’t have to. He dropped Brenda as a patient after her state’s statute of limitations on suing for malpractice ran out—in the same appointment that he diagnosed her CRPS. Unfortunately, this was more than nine months after the surgical injury, which means Brenda missed her chance to treat her condition in the early months when therapies are the most likely to be successful.

Brenda has nerve injuries that cause almost total numbness in her arm combined with phantom pain—on top of the CRPS in her collarbone, shoulder, elbow and fingers. Her pinky and ring finger retract into a claw shape on her worst days, rendering her hand completely unusable. Had she been able to receive early, intensive treatment for CRPS, she might only live with a fraction of the pain she currently endures.

CRPS has stolen more than the mobility in Brenda’s arm.

At just 33 years old, she had to undergo a complete hysterectomy. “I’m losing too much blood, and they can’t get my cycles stop with any meds. The CRPS and meds I have to take for it means I am at risk for having a baby addicted to drugs when born. Stopping the meds I’m on now would likely cause severe damage to us both. I hate that this is what has to happen, but I know life will be less stressful and safer this way. It’s definitely another thing CRPS has robbed us of,” Brenda sighs.

To manage the agony of CRPS, Brenda has a spinal cord stimulator implant. She is on disability due to CRPS, and her pain is now permanent. Until science makes more advances, Brenda has done all she can do. There is nothing else for her to try—even mirror box therapy is not available to her because nobody at her insurance-approved rehab clinic is trained in the process. Ketamine infusions are out of her financial reach. Even her physical therapy is not fully covered; Brenda and her husband pay hundreds of dollars out of pocket to ensure that she can continue the therapy she needs.

Privilege plays a part in treating this chronic pain condition—and that’s a grave injustice.

“I understand how much privilege I had treating this condition as a white male with financial resources,” Eric admits. “I was able to park my ass in a pain clinic and refuse to leave until they saw me without an appointment. Would a person of color have gotten away with that? Probably not. I had money to throw at treatments my insurance laughed at. My sister even offered to pay $25,000 if I had needed to go to Italy for treatment. White privilege and financial privilege are probably the only reasons I’m in remission today, and that’s bullshit.”

Complex Regional Pain Syndrome is still not completely understood, and because it’s so rare, it might remain a mystery for a long time.

It’s a brutal, unfair condition where early intervention is key, but diagnosis is difficult. For some patients, complete remission or a massive reduction in pain levels is possible, but other people will live with the pain for their entire lives. It is important that we all know that this condition exists so we can treat individuals with CRPS with the levels of compassion and understanding that they deserve.

Learn more about CRPS at https://rsds.org.