My View
What is it like to have CRPS (Complex Regional Pain Syndrome), also known as Reflex Sympathetic Dystrophy or “The Suicide Disease?”
“Burning To Get Out”
To understand what it’s like, you have to know how it happened to me. Each of us acquires CRPS in different ways. Some people develop this life-changing illness from something as simple as a sprained ankle, while others get it from something as severe as cancer. No matter how it happens, it’s a life sentence that, for 70% of those affected—from children to the elderly—can lead to thoughts of suicide. Marieke Vervoort, a Paralympian, had both her legs amputated as a ‘treatment’ for CRPS. Another option she considered was assisted death. For Vervoort, this became the final treatment to end the suffering she could no longer endure, which she accessed in Belgium. Regardless of one’s opinion of her final choice, she was facing a reality she could no longer tolerate.
I challenge you to do more than avoid the discussion; instead, help to end the need for it. It fills me with frustration and anger to see the corner that CRPS patients are pushed into. It’s a hell I wouldn’t wish on anyone, but I beg the world to understand, to do more, and to demand nothing less than everything possible to save a life. The decision to withhold treatments is what leads to lives being lost.
When I was 30 years old, I had cervical cancer and overcame it with surgery after a lifetime of dealing with polycystic ovaries and endometriosis. By the time I was 35, I had undergone three abdominal surgeries and a D&C.
At 42, I was diagnosed with invasive ductal carcinoma of the left breast, along with a precancerous papilloma under the nipple and areola, making breast-conserving surgery impossible. For reasons unknown to me, my planned seven-hour surgery extended to 12 ½ hours. They made an incision from hip to hip to take a skin graft, using it to cover my chest after creating a large opening to remove the nipple, areola, and all precancerous tissue. They removed the tissue from mid-chest to collarbone and down my left side to my navel, along with two lymph nodes. Six drains were inserted initially, followed by three more later. The surgeons used a TRAM flap procedure, utilizing the left rectus sheath muscle to form a type of shelf in my upper chest, repositioning it from my mid-torso and tunneling it over my ribcage. I woke up unable to stand fully upright, in excruciating pain, and after a week as an inpatient, I was discharged with daily home nurse visits and 24/7 caregivers for months.
That led to two additional surgeries, each lasting around four hours, involving resection, mesh, stitching, and unstitching in an effort to repair the damage caused by three surgeries within 11 months. At times, the rectus sheath muscle spasms into a hard, rock-like mass, compressing part of my diaphragm, stomach, and lower left lung lobe. I become nauseous, vomit, struggle to breathe, and have to lie down with heat and medication to relieve it.
The paralyzed left rectus sheath muscle, herniated into the abdominal and chest wall on my left side, can no longer function as part of my core muscles. I am unable to feel large areas of my body, while others are hypersensitive. This is the origin of the CRPS that now affects my entire being.
For years, the only treatments involved nerve blocks aimed at deadening some of the pain, along with opioids and narcotics. It reached the point where I was on fentanyl patches, OxyContin, and Valium—just to control the pain enough to avoid hospitalization. I had no life and had lost the will to live. My world was a hazy fog of medications, brain fog, and worse. I alternated between feeling a constant state of fear and wishing for death.
After more than two years of being bed-bound, ketamine infusions helped me get out of bed. However, I do not react well to the treatment and must be fully sedated to tolerate it. Once, when left in a semi-conscious state, I hallucinated that my ex-husband was trying to kill me. The combination of medications often leaves me vomiting and takes days to recover from. It also causes memory loss, and the further I am from an infusion, the more time I lose, often resulting in at least two weeks of memory loss surrounding each infusion.
When I walk, I don’t feel the ground the way others do. The word ‘normal’ has a different meaning for me and my medical providers than it does for those who aren’t sick. My ‘normal’ feels like parts of me are on fire, with my legs vibrating and each step feeling like I’m walking on broken glass in a briar patch, wrapped in barbed wire. The inner part of my left foot feels as though it’s burning with a fire I can’t extinguish. The area around my chest port feels like a severe sunburn with no relief in sight. I can scratch my skin raw trying to soothe an itch that won’t go away. Often, the only way to ease the discomfort in my legs and feet is by burning them with a heating blanket on high, or by floating in a warm pool, which brings some relief until I have to get out. I’ll take the blanket to bed to keep my legs warm, hoping the heat will calm the neuropathic symptoms enough for me to sleep.
I experience sharp, severe pains in various areas, which can occur even while I’m simply sitting in a chair. Nothing alleviates these electrocution-like sensations, and there doesn’t seem to be any apparent reason for them.
It takes a tremendous amount of mental effort to live with the crippling pain I experience. I can become frustrated and may appear ‘angry,’ a state often referred to as ‘paingry,’ which is common among people with Complex Regional Pain Syndrome. At times, it can take a full week of rest to recover from a single event, while multiple events may require several weeks for recovery. A setback in pain control, such as a delay in receiving an infusion can extend recovery by months or result in a total loss of function or ability.
I experience vertigo, brain fog, and mild cognitive impairment. I can lose thoughts, periods of time, and memories of people or events. I often joke that I can experience something for the first time more than once, but it can be disturbing and frustratingly confusing. Between the brain fog, medication side effects, and mild cognitive impairment, I may unwittingly put myself at risk of injury.
When I consider doing something, it’s not just the event itself that I have to think about. I also have to consider going up and down the stairs to leave my home, walking to the car, and sitting up with my feet down instead of elevated. These are all things a ‘normal’ person wouldn’t have to think about, but I must be acutely aware of them to avoid ending up in a bad situation. Every action takes a toll that I can’t recover from without a day of rest. I make trades with myself, allowing for two days of rest in exchange for completing something that takes just two hours.
Mentally, it is exhausting to function in even the most basic ways. Cooking meals and attending to my personal needs can be a challenge. One day, I might feel well enough to attend the local YMCA’s warm pool movement class for arthritis, but the next day, I may struggle to move and find it difficult to reach the bathroom.
The involuntary movements in my right arm and leg, along with muscle spasms in my left chest and abdomen, lead to exhaustion and require an incredible amount of mental effort just to survive and function—let alone find ways to have a life worth living. Additionally, my secondary hypertension causes flushing, sweating, shortness of breath, and difficulty completing tasks, even with medication.
I wish I could still be an EMT, saving lives, but now I struggle to take care of myself. I used to be the one others leaned on, and now I find myself needing to rely on others for the vital care necessary to live.
I’ve spent the last year fighting for access to the medical care I need to stay alive. The fear and worry of losing that access is constant. When I became ill, I lost everything: my career, my house, my marriage—everything.
I have ketamine infusions every three months now. Over the past year, the introduction of LDN (low-dose naltrexone) into my medication regimen has allowed me to manage some symptoms slightly, although it is another medication that I pay for entirely out of pocket. Unfortunately, the effectiveness of LDN has diminished over time.
I experience intense pain flares regularly, and it has become a “normal” part of my life. My normal isn’t what the rest of the world experiences, and I wouldn’t wish this on anyone. No one deserves to live in such torment.
People often throw the word ‘pain’ around without truly understanding its implications. There are medications, infusions, and treatments that can provide a quality of life worth living, not one where you dream of death whenever you manage to fall asleep. Unfortunately, these treatments are currently available only to those who can afford them, even charging cash to Medicare patients. So-called health insurance companies deny claims and delay treatments, leaving people with only one solution.
We pay our premiums and contribute to the system our entire lives, only to find ourselves fighting for every moment of a decent life we can achieve. I dedicated my life to caring for the sick and injured, volunteering for years with the singular goal of saving just one more life. That was my source of pride, the one thing that made my life feel meaningful. It provided a sense of belonging I had never experienced anywhere else, especially not with any ‘blood relations.’ Healthcare was the only place where I truly felt I belonged, and then CRPS stole that from me. Existing with CRPS is one challenge; having a quality life is an entirely different battle.
It’s maddening that people are merely existing because they cannot afford access to life-saving treatments. This is American healthcare at its worst and we are the only ones who can affect change.