By Ed Coghlan.
When the National Pain Report ran a story on the Pain Advocacy Coalition it elicited immediate and positive response from our readership.
The Pain Advocacy Coalition is an online chronic pain community that is using digital tools to lobby Congress and their state Governors on what it perceives to be the unfairness of the CDC Guideline on Opioid Prescribing on pain patients.
One member of the Coalition is an example of the part of the chronic pain community that thinks they’ve been unfairly targeted.
Nicole Burrows, a 54-year old woman who lives in Florida, spoke with the National Pain Report this week.
She suffers from four herniated discs, arthritis in hips and fibromyalgia and spends “half my day on a heating pad”.
She used to use opioids to manage her pain, but her rheumatologist stopped prescribing in 2011. She tried injections which not only caused a bad physical reaction but didn’t manage her pain.
She can’t help her husband with their home service business anymore and admitted that she sometimes gets very emotional and frustrated and suffers from depression.
She’s been using Kratom for the last year which helps and she’s irritated—very irritated—that federal officials are now targeting Kratom the way they have opioids.
Nicole has taken to Twitter to fight on behalf of Kratom and found the Pain Advocacy Coalition which she joined late last year.
“Finding other people like me gives me hope,” she said.
There’s power in numbers, she believes, and “each of us can do something”.
Ken Adams is a partner in the Pain Advocacy Coalition.
“There can be no more talking about us without us,” he said. “We want to be part of the conversation and where appropriate make sure we are part of it. Bottom line is we want a seat at the table.”
For Nicole, who has a daughter and three granddaughters that are the lights of her life, her fight can continue because she’s found people she can fight with.
“That’s a good and hopeful thing,” she said.
If you join on Twitter, make sure to use the hashtag #shareourpain to help find Nicole and others who are battling on this important issue.