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SEATTLE– "It's the difference between laying in bed crying and getting up and going kayaking," says Micki Forrester.
She was at a small rally on Tuesday outside the University of Washington Medical Center. This is one of four state-wide rallies – and many more across the country – to educate patients with chronic debilitating pain with guidelines from Centers for Disease Control and Prevention. United States. reduce or eliminate opioid medications that people like her say need to work.
"The CDC has never seen my medical records, they've never looked at me.They do not have the right to change my prescription," says Forrester, who added that his lifestyle was vigorous and active before her illness in 2007. "I have to have a drug test every month to prove that I do not take heroin, ecstasy and all those other medications that I do not have." I have never heard of it.
At present, Forrester spends his days in and out of a wheelchair. She suffers from a disorder of the nervous system called pain syndrome of the complex region. She suffers from chronic pain because her brain reads the nerve pain signals that she thinks she is hurt. Her dog, Pip, is by her side at all times to let her know when she is about to have an episode of uncontrollable seizures.
Forrester and her husband would like to do more RVs across the country, but she can no longer get a three-month prescription for her pain. Now, she must make sure that she is in the state of Washington every month to renew her prescription. If she goes to another doctor in another state, she is afraid to end up on a watch list of patients who are "commercial doctors" for pain medications.
"We are not criminals, we are just suffering," she says.
Forrester explains that she understands that the CDC's new guidelines stem from the national health crisis that arose from excessive prescribing of painkillers. CDC figures show that more than 350,000 Americans have died from prescription and illegal opioids between 2009 and 2016. But, according to Forrester, the new 2016 guidelines are too strict and place bureaucrats between her and her doctor.
Q13 News contacted hospitals, physician groups and pain clinics throughout the region and no doctor was available to comment on Tuesday.
A group called the Alliance for the Treatment of Insoluble Pain says opioid prescriptions are at their lowest level in 10 years, but opioid deaths are at their highest level in 10 years. That's why people at this gathering say that they are not the problem and should not be punished simply for suffering.
"I have undergone 11 back surgeries," says Maria Higginbotham, holding a plastic bag containing nuts and screws that surgeons have removed along her spine over the years.
"There's still three times more stuff in there," says Gig Harbor's wife, who was a bank branch manager. She suffers from a hereditary degenerative disease where the bones of her spine crumble and doctors build a metal cage around her spine.
Higginbotham says that his pain is almost constant. And although her doctor has reduced her medications to 40% of her workforce, she fears that the new state regulations that will come next year will further reduce her pain medications.
"A lot of people want to be here," says Higginbotham, who was diagnosed more than a decade ago, "but some of them suffer so much that they can not even get out of bed." I forced myself – I dragged myself to be here. "
As part of Pain Awareness Month, this gathering and other countries are intended to get people to contact their federal and state legislators and the CDC to reduce the severe restrictions placed on people with chronic pain.
"It's a dreadful life," Higginbotham says, "there's more joy."
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