A Day in the Life of a CRPS/RSD Sufferer
“In Her Skin”
She hasn’t slept for days. The pain in her leg is like ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks.
“When do these little guys ever take a lunch?” she wonders.
They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, causing her to gasp for air.
Her entire leg has become pain. It is no longer a leg. It is no longer her leg. It belongs to a monster. To a disease she does not yet understand.
The limb is only pain and fire and crushing, sawing icicle bone. When she closes her eyes, she cannot picture what the leg looks like. She can only see purple and ice blue with burning fire red. Like a force-field that radiates around the limb, the colors have replaced flesh.
She waits for the sun to rise for her doctor appointment. All night, she recalled her list of symptoms over and over again. She can’t leave anything out this time.
“He has to help me. I have to make him realize what is happening to me. I cannot live like this. I will make him understand.”
Five hours later, back in her bed, she is barely conscious now. Sleep still will not come, but her mind is groggy from the pain that drains everything.
Her heart races, body shakes, face tingles and room spins. Ever-present nausea sits like a rock in her belly, and fatigue pulls her limbs down with gravity. But all that she registers is pain.
She feels herself floating away, but the pain in her leg keeps pulling her back. It holds her captive.
She can’t keep her eyes open. Slow tears stream down her face. Flashes of today’s appointment and the last few appointments cut through the fog.
Orthopedic: “I’m sorry to tell you, Complex Regional Pain Syndrome is the most painful condition I’ve ever seen. You are too young to be in this much pain.”
Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try harder…No pain, no gain!”
Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”
General Practitioner: “Pain medication is too hard to prescribe these days. Try this prescription strength Ibuprofen instead.”
It’s the middle of the night, and she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, three times the size of the other, and his beautiful, 20-year-old love barely able to form words.
Even in her state, the doctors and nurses look at her with suspicion.
“She has CRPS,” says the fiancé with an obviousness in his voice. He assumes they will understand.
No, CRPS is a condition that the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face.
“She can see someone else for pain medication,” the doctor says, never looking at the girl’s face.
From across the Emergency Room, a nurse rushes over and pulls the doctor aside. After their private discussion, that angel nurse is lead on the team and the shrieking girl is administered medications.
“Don’t stick her with any needles and keep away from this girl’s leg!” directs the angel nurse. She tapes a sign to the bed saying “No sticks. Don’t touch legs.”
After the girl calmed down, the doctor sends her home with a prescription for pain medication and anti-inflammatories. An antibiotic cream was given to address her sores.
She finally had some hope. The medication wasn’t helping the pain completely, but she did get a few hours of sleep, finally. She felt more like herself than she had in God knows how long.
Knowing there was a medical professional out there who knew about her condition and cared enough to try to help her was like a window had been opened, and she could breathe again.
Maybe in time she would find a doctor like that nurse. Maybe if someone could help her, maybe she could actually do this.
Then, her mother stormed into her room.
“Your Dad and I have decided we want you out by tomorrow.”
“What’s going on, mom?”
“We know you have been going around trying to get drugs from doctors. After your trip to the ER last night, we know you got a big bottle of pills and we want you out. We won’t have an addict living in our home.”
This short story was originally published in 2014 after I was inspired by an amazing young woman I connected with in an online support group. Tragically, this young woman passed away recently due to CRPS, and lack of appropriate medical care. I’m sharing this again to honor her fight, and all of those battling intractable pain. For some of us, humane pain management is life and death.