Ashland woman battles severe pain of RSD
By Jared Glovsky
For The Sounder
October 4, 2007
It should be recognized that, as human beings, we all have a love-hate relationship with physical pain. On the one hand, nobody likes to feel it, but on the other, it’s a remarkable function in Nature’s flawless design. Pain protects us. Without pain, we’d sit on a hot stove, or wind up electrocuting ourselves, or cutting ourselves. Pain is our body’s response to a violation.
But for Renee Uitto, Ashland, pain has become, literally, a way of life, which she’d give anything to be rid of.
Uitto suffers from what’s known as reflex sympathetic dystrophy (RSD). It is a chronic, progressive neurological condition that affects skin, muscles, joints and bones. In layman’s terms, it essentially renders the brain unable to shut off pain. It also increases the body’s sensitivity to pain, so that something that should not be causing any pain becomes excruciating.
On account of her RSD, Uitto lives with continuous pain, in her feet, her legs, her hands. And it’s spreading.
“I first got sick in 2000,” she says, “back then it started in my feet. It was this severe, burning pain, so bad I could not touch my feet to the floor.”
Such pain would be terrible in any circumstances, but Uitto says it’s especially terrifying when you don’t know what’s causing it, and there’s no apparent reason for it to be happening.
RSD usually is the body’s reaction to some kind of trauma. A broken leg, for instance, or a heart attack; but it can also be triggered by something more minor, like a sprained ankle. In 2000, when Uitto first began exhibiting symptoms, there was not nearly as much information as there is today. Seven years has made a difference.
Uitto did receive a head trauma around that time, but since the RSD first developed in her feet, and the condition was believed to be directly connected to the part of the body where the trauma occurred, many doctors were baffled.
“It was Doctor Cunningham here in town who first said the words RSD to me,” Uitto says, “he referred me to a neurology specialist in Marshfield, and he’s been with my every step of the way since then.”
Uitto was born in Milwaukee, moved to the Chequamegon Bay area in 1968, where she graduated from Washburn High School. She’s been married to husband Howard for 32 years (October 18), has three kids, 7 grandchildren, and some ‘great in-laws’, all of whom she says, particularly her husband Howard, have been incredibly supportive.
“Howard’s been wonderful,” she says, “stuck by me from the beginning.”
The development of RSD came as a shock, because Uitto was quite active prior to the affliction. She was always going, going, going, even took part in the first couple years of Book Across the Bay. Now, she must get around in a motorized wheelchair. Something like Book Across the Bay is no longer an issue, and even the simplest things like going to watch her grandchildren play soccer, or their holiday musicale at school, often turns into an excruciating experience.
Granddaughter Kerri tells of an incident this summer:
“Renee’s always been a fighter,” Kerri recalls. “From day one, she’s insisted on walking, even when the doctors told her not to. She refused crutches until it was absolutely necessary, and when she eventually needed the chair, she was not happy about it.”
At a soccer match in July, Kerri says they could tell right away that something was wrong with Renee.
“She looked very uncomfortable,” says Kerri, “her legs were shaking visibly. As it turned out, the thing that was causing so much pain were gnats, tiny little insects, landing on her legs.”
With RSD, the body doesn’t distinguish between levels of severity. Pain is pain; and it’s always bad.
Moreover, Uitto must have the way cleared for her when she attends crowded functions, like her grandchildren’s school concerts, lest someone inadvertently brush up against her. And she can no longer hold her grandchildren without tremendous pain.
“That was especially hard,” she says, “I waited all my life for grandkids, you know, and right around the time the RSD developed, my first was born.”
Uitto says she has undergone a variety of ‘guinea pig’ treatments for the condition, from morphine pumped into her spine to electroshock intended to numb the nerve endings, to plastic casts for her legs, all of which have resulted in a dashing of spirit.
“I go in with hope every time,” she says, “and I always come out disappointed. That’s hard to take.”
The only effective treatment for RSD right now is mere medication to help mitigate the pain, and alleviate depression, another common side affect of the disease.
“There’s no direct treatment or cure,” she says, “so the goal must be making patients as comfortable as possible.”
It’s Uitto’s hope to raise awareness about this disease, not only among those who might be suffering from it, but the medical community as well.
“It’s kind of an invisible disease,” she says, “doctors are only now learning more about it, and it does not get the same attention as other things.”
She says proof of this can be found in the frustrating tendency of well-meaning people to remark that she ‘looks fine’, thus implying that the disease is really no big deal. There are no apparent outward symptoms, and so, Uitto says, people can’t understand her body’s betrayal, what she’s going through.
By raising awareness, Uitto and her family are looking to make a little of their own hope. Uitto is a member of an on-line RSD support group, and she and Kerri are working to put together a RSD walk next spring, similar to the Relay for Life or the Memory Walk, a chance for folks to come together, reflect, and share their own stories.
Uitto urges anyone that is experiencing inexplicable pain to contact their physician as soon as possible.
“Like most diseases,” she says, “there is a greater chance for effective treatment and even possible remission if it’s caught early. Mine was not caught early, and I’m suffering now, because of it.” •
Folks interested in learning more about RSD, getting involved with next spring’s walk, or sending their well wishes, may e-mail: firstname.lastname@example.org
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