CDC Requesting Stakeholder and Public Comment on Opioids

Editor’s note: The deadline for comments was June 16, 2020. This piece was originally submitted weeks before the final deadline, but due to negligence wasn’t published in time. The Mighty deeply regrets this. As of the date of closure, there were over 5,000 comments. There are 40 million intractable pain patients and roughly 180 million chronic pain patients in the United States.

Two years ago, I was diagnosed with hypermobile Ehlers Danlos Syndrome. I had previously been diagnosed with fibromyalgia, which we now assume was a misdiagnosis (though we aren’t entirely sure). The pain that I have had throughout my life began in some of my earliest memories in life, dating back to 35 years ago, when I was two years old. I remember my knees and ankles hurting. At age 3, I had my first set of dislocations between both shoulders, a grand total of three dislocations each. My shoulders now pop in and out of socket at will and with very little effort.

As I grew, my pain worsened and bettered and worsened again, growing in severity and length and occasionally falling on a downslope to the point that it was barely noticeable. My pain journey has been a roller coaster ride. I never know when the up is going to begin or when the down will alleviate it. It seemingly has no rhyme nor reason. Then again, from what I understand about Ehlers Danlos syndrome now, things happen on a day-to-day basis and quite unexpectedly.

My first experiences with pain medication began in 2003 after the birth of my daughter. Her birth was an Ehlers Danlos Syndrome birth: long, uneventful, terrifying, excruciating, without dilation and ending in a cesarean. My birth with my mother was also an EDS birth: one hour long of solid labor pains before being delivered quite suddenly. These are both considered abnormal.

After my daughter was born, I immediately began to feel the upswing roller coaster and typical, but somehow intensely worse, body-wide pain. It lasted years. I ended up having several surgeries that year as well to address other issues (like gallbladder removal and pre-cancer removal). The pain never went away, but got intensely worse with each issue. My back had been on the decline since my mid-teen years at least. To date, I’ve lost count of how many providers have asked if I was ever in a devastating car accident.

In 2007, I ended up having to take dilaudid (which seems to now be a dirty word) to curb the pain from a slipped disk that later ended up requiring a microdiscectomy. The pain in my back ebbed considerably after the surgery, but the pain across my body didn’t come down until roughly 2011. I managed, somehow, to take myself off of my medication with zero withdrawal symptoms. From what I’ve read and heard from others with intractable and chronic pain, that was nothing short of miraculous.

I didn’t have to take pain medication again for several years after that. Then, in 2015, my pain was at the point where I needed more help managing it. I had done the PT route with minimal success for the all over pain, but plenty of success for the localized pains in my spine and neck. I was on what was considered a low dose for an Ehlers Danlos Syndrome patient until last year when a disk in my back ruptured. We didn’t know, but the pain was worse than both of my experiences with childbirth and my gallbladder episodes combined. I couldn’t walk. I couldn’t sleep laying down because I couldn’t lay down. My then-provider refused to allow an MRI early enough in the ordeal so that, by the time the referred provider demanded it, I couldn’t get it done because the pain wouldn’t allow me to sit still even in an upright position for more than a couple of minutes at a time.

The dosage I was taking doubled and even that didn’t touch the pain I was in daily. Towards the end of the ordeal, I had been blatantly dismissed by no less than four providers, one of them going so far as to tell me that no one in my city would treat me. That same provider told my husband that this was because I was “refusing” an MRI. He would not listen to me telling him that I could not lay down. After a two-week stay in the hospital, I was heavily sedated (but kept awake) to get a myelegram CT scan, which revealed the rupture. It was twice as big around as a soda can. I was near paralysis and heading towards the eventuality of death due to the pain and the hypertension it was causing. Even that was a first. My hypertension, even during birth and gallstones, never went over 145/85. Both of my numbers hit triple digits this time.

Two weeks in the hospital, one myelegram CT scan, my husband losing his job to care for me… and we had an emergency surgery the day after the CT. It was so bad and has left me marred emotionally, damaged physically and with a fear of that kind of pain as well as a fear of every provider… a fear that they will leave me to die while I am visibly bleeding out in front of them.

Today, I’m putting here a link for people to share their stories, like this one, with the CDC. The CDC is asking for public comment from chronic and intractable pain patients regarding their personal experiences or the experiences of their loved ones who utilize prescription opioids. Bear in mind that, at this point, the CDC has openly admitted that their misclassified opioid overdose numbers have drastically hurt the chronic and intractable pain communities. The Human Rights Watch has published no less than four reports on the issue, possibly pointing to human rights violations against chronic and intractable pain patients. The CDC has also stated that their guidelines are suggestions, not laws. Simultaneously, doctors in many states are being threatened with loss of licensure by the DEA and being asked to forfeit their prescribing license due to these “suggestions.” The FDA has stated that, when regulated, stored and taken properly, prescription opioids are safe to use.

The new rhetoric is that long-term opioid use is worse than allowing patients to suffer because it causes possible nausea, hyperalgesia (skin sensitivity) and withdrawal symptoms. Granted, this is patient specific and not applicable to all. When asked if they would rather have these symptoms or the loss of the quality of life, functionality and freedom to exist with little to no pain, most patients have and will choose that they would rather have access to their medication.

By and large, most government agencies are not aware of what’s happening in our communities and not aware that an estimated seven million pain patients have already been thrust off of their medications due to the misclassified overdose numbers and the “suggestions” for one reason: we aren’t talking to them directly. They need to hear from us.

This is our chance. Today, I’m leaving this link here for anyone, CDC stakeholder or public entity/person, to share their stories with the CDC. There are roughly 40 million pain patients in the United States alone, some of whom have refused to research the facts here and actually bought into the allegations that these overdoses are largely due to the chronic pain community. We know now that this is not true and that the real culprits here have been heroin and illicit fentanyl.

We need to speak up and loud. I hope, with all sincerity, that this finds everyone here well and soon. The comment deadline is next month. Editor’s note: The deadline was June 16, 2020. We don’t have a lot of time here. Please consider leaving your comments and soon.

See the document here. You can find more stories about the CDC’s flawed and harmful guidelines and other issues related to opioids below:

See more from the author on Unhinged Zebra.

Chronic Pain

CDC Requesting Stakeholder and Public Comment on Opioids