One woman is weaning off prescription painkillers for a chronic pain disorder, but until she does, she is expressly forbidden from trying cannabis.
Lynn Hughes has been prescribed fentanyl for 19 years. Now that medical cannabis is legal, she would like to see if it can help her symptoms, but her pain management doctor has expressly forbidden it.
“August 3, 2000, I picked up a box of books, and when I turned to put them on a table to the left of me, my left knee popped and the pain has never left,” Hughes said. “The very next day, my leg from my crotch area down to my toes was just swollen up to the size of an elephant. Where I worked, right across the parking lot was the Stillwater Medical Center, so I went across the street to the ER, thinking, ‘There’s something wrong here. My legs shouldn’t look like an elephant.’ And they did an ultrasound, and they said, ‘We don’t see anything wrong here.’”
Eventually, she was diagnosed with reflex sympathetic dystrophy syndrome, or RSD. It is also referred to as complex regional pain syndrome (CRPS). The syndrome is a form of chronic pain that usually affects an arm or a leg and typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury, according to Mayo Clinic.
“The medications would make me sleep for three or four days at a time or I couldn’t sit for very long. Sitting, standing, prolonged things like that, I just couldn’t do it, so I would miss their activities at school, things like that. Sleeping, not eating, unable to work a lot of times. I was off work for 14 months when it first happened because I just I couldn’t function,” Hughes said.
She has lived with the pain and taken fentanyl to mitigate it, which has allowed her to function for the past two decades. Now the government is forcing her to wean off her medication.
“I started at 25 micrograms, and it’s gone up as high as 150 micrograms. Now I have titrated back down to 25, and April 1st is my goal to be completely off. … I don’t know what damage it’s doing to my liver, my kidneys and all that stuff, and that’s why I went off of it,” she said. “But is getting off of it going to cause me to end up in bed and not be a functional taxpayer? I don’t know.”
She has seen three pain management doctors over the years, only switching when one retires. Hughes has broached the topic of trying medical cannabis as she weans herself off the powerful painkiller.
“These fentanyl patches are a federally controlled substance, and so as long as cannabis is still illegal, then if you even try it, you’re done. I’ve sat in the waiting room and I’ve seen people who didn’t pass their urine test and they’re just dismissed immediately right then and there. Doesn’t matter if it’s the one time. It doesn’t matter. You sign a contract with the pain management doctor, and it says you will not use any other drugs at all, and marijuana, it’s still considered illegal at the federal level,” Hughes said. “It scares the thump out of me because that could be me. What if I didn’t have some support, family support? A lot of those people don’t. Their families have given up on them because they can’t see anything wrong with you. They can’t see anything wrong with my leg, I mean, other than when my foot started to turn black, but right now, if you look at my legs, you really couldn’t tell the difference unless I kind of pointed out some of the differences, but it’s not like it’s shining bright red.”
Even though she has a longstanding relationship with her doctor and has had monthly visits with him for the past six years, she cannot try cannabis. Instead, they are pushing her toward buprenorphine, which is sold under the product name of Subutex, but it makes her violently ill and she has no interest in it. Hughes said she has only tried cannabis once while in college and it did not suit her then, but she wants the opportunity to experiment before she has to be off fentanyl for good.
“They’re just covering their ass with this opioid crisis stuff because they’re afraid of their licenses and all that, and I get that, but on the other hand, where does the patient stand? We’re the ones caught in the middle,” Hughes said. “I understand you have the license to prescribe this stuff, but can we not at least maybe give me a three-month window to try it? And then if it doesn’t work, I can come back to you.”
Another added layer of absurdity to the situation: her son and husband are lifelong cannabis consumers, and she helps run the family’s cannabis business.
“I had my husband and Connor and my daughter and their wonderful support, but I wanted to try it, and then it became legal here in Oklahoma. Connor smoked it all his life. My husband smoked at all his life. I’ve never smoked it. I’m not a smoker, but I would like to try because of the medicinal purposes,” Hughes said. “I grew up in a commercial greenhouse. I know the value of lots of other herbs and other plants. This is just a plant. What’s wrong with just a plant? And I know, big pharma, they’re all worried that we’re going to never ever need opioids and stuff ever again, but I just can’t believe that this can’t be helpful for a lot of people, and I just wanted to try it when it became legal. And then we started a business.”
Until either the laws change or she ceases to be a pain patient, Hughes has to keep her hands dirty but her urine clean.
“I grew up in south-central Kansas, and they had a small commercial greenhouse and that’s where I grew up. That’s where I spent my time, was in the greenhouse and all around the farm,” she said. “Horticulture was my parents’ passion. My dad taught it for 33 years in school, and so I grew up in a horticulture background, so greenhouse was just second nature to me. Growing plants, having a garden, that’s always been a part of my life, so when it became legal here and we just talked about the strengths we could put together, Connor’s knowledge of cannabis and my knowledge of commercial greenhouse and how it all operates and my husband’s building construction and business background, it all just kind of played all together. A product that I can’t even use.”