She hasn’t slept for days. The pain in her leg reminds her of 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, making her gasp for air. Now, her entire leg IS 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 white. 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 symptoms again and again. She can’t leave anything out this time. He has to understand- I have to make him realize what is happening to me. I cannot live like this. I won’t. I can’t do it. He has to help me. 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 pain. Her heart races, body shakes, face tingles and room spins; all that she registers is pain. She feels herself floating away. All but for the leg. It holds her captive. She can’t keep her eyes open. Slow tears stream down her face. Flashes of the past 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 so young…”
Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try…Stop crying!”
Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”
General Practitioner: “Pain medication is just really hard to prescribe these days. How about some more extra strength prescription Advil?”
Two nights later, she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, 3x the size of the other, and his beautiful, 20-year-old love rolling around in her bed, moaning, 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, assuming they will then finally understand. No, CRPS is a condition 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 her doctor for pain medication,” he 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 gets pain medication immediately. “Don’t stick her with any needles and keep away from this girl’s leg, everyone!” directs the angel nurse. She tapes a sign to the bed saying “NO STICKS. DON’T TOUCH LEGS.” After the girl had relaxed some, the doctor sends her home with a prescription for pain medication and anti-inflammatories.
She finally had some hope. The medication wasn’t helping the pain very much, but she did get a few hours of sleep, finally. She felt more like herself than she had all week. 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 just 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 try to do this.
Then, her mom stormed into her room. “Your father and I have decided we want you out by tomorrow.” Wait…what? What’s going on, mom? “We know you have been going around trying to get drugs from doctors. After your little trip to the emergency room 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 is inspired by a true story, but “The Girl” is un-named because her story is shared by too many who face this disease Complex Regional Pain Syndrome (RSD) and other types of severe chronic pain conditions. Chronic Pain does not make you an addict. Taking prescribed medications that allow you to function and survive is not the same as addiction. If you love someone with CRPS/RSD or a severe chronic pain disorder, please do some research on their behalf and understand that the media does not portray pain medication appropriately, from the perspective of chronic, terminal illness sufferers or from doctors who manage chronic pain disorders.
For more information, read Pain Pills: Chronic Pain Sufferers Speak