The pain had gotten so bad Megan Brown wanted to end it all.
“You’re laying in bed and you’re touching the sheets and the sheets feel like they’re made of barbed wire,” she explained, her voice wavering.
The 16-year-old suffers from Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she said even a feather brushing against her foot feels like lava dripping onto her skin.
According to the RSD Canada website, RSD is a debilitating disorder where the sympathetic nervous system becomes overactive and may cause numerous symptoms including burning pain, swelling, temperature change, skin colour change, diminished motor function and severe sweating. Symptoms may vary with each individual.
Brown sat on the couch in her Burlington living room, a room in which she has spent most of her time lately, she said.
Her right foot was swollen and purple and was propped up on a pillow on the floor. Her crutches, her main mode of transportation these days, were set at her side.
“There was a moment for almost two or three weeks where I was ready to give up,” Brown said. “I was telling them, just cut it off, shoot me, do whatever, just make it stop.
“I sort of withdrew and went into a depression. It was bad,” she continued. “What made it worse is that I knew I was hurting my mom because I was spending a lot time crying and telling her just kill me. I wasn’t joking, I wanted to die.”
But then she got a call from the Burlington Humane Society and her outlook changed drastically. The shelter said they had just found four week-old kittens at the side of the road and would Brown mind fostering them?
“I thought maybe this is what I need,” she said. “So I said, ‘Yes.’ We went down, we picked them up and they’ve been here ever since and, next to my parents and my sister, they’re my safety line.
“They are what I live for at the moment.”
As she bottle fed Baby Doll, the smallest of the kittens, Brown acknowledged the fact the kittens would soon grow up and would have to go back to the shelter. “But they’re my kittens. They’re my babies,” she said with a smile.
Before she was stricken with RSD, Brown hoped to pursue a career working with animals, possibly as a veterinarian or a conservation officer.
“I was looking at becoming a conservation officer and that would require weeks of being out in the wilderness, being able to run, being able to do all sorts of things,” she said.
“I’ve had to give up on a dream but I’ve got a new one and that’s what counts,” she added holding up one of the squeaking felines.
Brown started feeling the symptoms of RSD three years ago. Her first indication anything was wrong was the difference in temperature between her right and left foot.
“One was warm and the other would be freezing cold,” she said. “We just put it off as a circulation problem.”
Then she started getting pains in her legs and her foot, which doctors wrote off as growing pains or sprains.
However, in April the symptoms worsened. Brown had somehow injured her back and was resting at home when she asked her sister Amy to get her a pair of socks because her feet were cold.
“She looked and said, ‘Your foot is completely blue,’” recalled Brown. “And it looked like I’d been out in the snow for an hour.”
She said her mom, Barb Brown, rushed her to the hospital where doctors performed a battery of tests but could not determine the cause of the discolouration. She was then referred to several specialists.
“All the doctors were saying basically the same thing, ‘There’s nothing wrong,’” she said. “I know there’s something wrong, it hurts and it’s blue and it’s swollen and you’re telling me there’s nothing wrong. I had one doctor say, ‘Maybe it’s all in your mind.’”
Eventually the Browns were referred to a specialist who was able to diagnose her with RSD. Despite the diagnosis, the doctor said there was nothing they could do except pain management, Brown said.
Brown described RSD as an “invisible disease” because not many people know about it, including those in the medical profession, making it difficult to diagnose.
Recently, the family met with Sandy Smeenk, the founder and executive director of Improving the Life of Children (ILC) Foundation, which advocates for young people suffering from chronic pain illnesses and promotes peer support.
“Because best practices in medicine do not exist for complex chronic pain, they continuously fall through the cracks of care,” said Smeenk. “They are moved through the healthcare system specialist by specialist with no answers and largely they suffer in silence at home.”
Smeenk said the ILC Foundation is helping Brown better navigate the healthcare system and is working to put the teen in touch with other young people going through similar circumstances.
“That will allow them to connect and not feel isolated and alone,” she said.
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Brown’s mom, Barb was grateful to have been put in touch with the ILC Foundation because she said the last few months have been “hell.”
“Moms are supposed to be able to make stuff better,” she explained. “To know I can’t do anything, it hurts, and to see her in pain…”
Brown’s father, Barry, said he hoped his daughter telling her story would raise the profile of complex chronic pain illnesses within the community.
He said, “The more people who are aware of it, maybe it will push people to perhaps look for it because they’re more aware that there is this thing out there.”