FREDERICKSBURG, Va. (CIRCA) - Jayne Flanders describes the way she feels every day as having flu-like symptoms of body aches and fatigue, but times two. And that is while taking opioids.
“My pain on a daily basis with medication is a seven. So some people go to the ER for a seven, and I’m living that every day doing daily activities,” Flanders said.
She is one of the 25.3 million adults in the United States suffering from chronic pain, and about 40 million experiencing severe pain, according to the latest data from the National Health Institute.
Flanders said the opioid epidemic has put a stigma on those in the chronic pain community who are prescribed the pain killers, making her road to relief anything but easy. Now, she’s using her experience to help advocate for others who want relief too.
When Flanders was 10 years old, she discovered she had a birth defect in her feet that resulted in several surgeries.
"I’ve been in pain since I was 10 years old, so it’s kind of always been my reality,” she said.
Now over a decade later, Flanders suffers from several chronic illnesses, including Chiari Malformation, Endometriosis, Lupus, Dysautonomia and Ehlers-Danlos Syndrome, a disorder that affects her joints.
“You dislocate really easy, so I dislocate carrying the groceries in from the car or getting out of the car I can dislocate an ankle, or a hip or whatever wants to pop out that day," Flanders said.
Flanders uses several therapies to relieve her pain, such as medical massages and Epson salt baths to name a few, but it is the opioid Percocet that she said helped her feel like she got a piece of her life back.
"I’m able to cook myself dinner or go get my own groceries and things like that which before would have that would have been the only activity I did all day because I would have had to come home and get in bed and sleep because the pain would be too much,” Flanders said. “So, it’s nice to be a normal human.”
But it was not easy for Flanders to get the prescription pain pill.
"I went through a few primary care doctors who kind of dropped me as their patient because they couldn’t do anything for me basically. They cited the CDC guidelines that they couldn’t, which are guidelines, I do want to throw that in there. They are guidelines, they are not rules. They are not regulations,” Flanders said.
"I had one doctor tell me I believe you’re in pain, but you’re not worth risking my license,” she continued. “So that’s the last primary care doctor I saw before I went to pain management. And pain management didn’t want to take me at first.”
Flanders was eventually able to find a doctor that would prescribe to her, but the prescription came with strict rules.
"He does urinalysis to test for other drugs. He does pill count. I see him every 28 days, so he does pill counts when I see him and he also does random pill counts,” she said. “It should be the same for anyone who gets a prescription whether it’s acute pain or chronic pain. I think people should be held accountable because when we are not that’s how mistakes happen.”
But not everyone who experiences chronic pain wants to be prescribed opioids. Lindsay Natiw has been in the military for 12 years and suffers from Fibromyalgia.
"My doctor hasn't even brought up the idea of using an opioid for my pain," Natiw said. "We're literally going to exhaust our system and we haven't even brought up opioids yet. And I don't know if I necessarily want to take them. I mean my pain is terrible, but I've been dealing with it this long."
Natiw said she understands why some chronic pain patients who use opioids would do so if it is the only form of relief they can find and if they work with their doctor to manage risks, but she can also understand how a problem could arise.
“We need to focus a little more on how to help people with chronic pain and to manage that better so we don't have as much of a opioid crisis on our hands," Natiw said.
And she aims to never have to use opioids.
"Hopefully one day we'll get a cure for it or even like a better way to deal with it, ther than opioids," Lindsay said.
But as for Flanders, she wants to help those with chronic pain like herself who want to responsibly take opioids. So last year, she co-founded the Chronic Illness Advocacy and Awareness Group.
"That’s why the opioid epidemic is big because people were losing their loved ones to addiction and they stood up and said something about it,” she continued. “Well now we are losing people to untreated pain and now we’re standing up to say something about it.”