Editor’s Note: Sandy Sullivan is a chronic pain patient who lives in Doctor’s Inlet, Florida. She is a frequent commentator on chronic pain issues. What follows is the comment she filed with the CDC about its Opioid Guidelines.

16 years ago while at a light I was rear ended by a drunk driver going 45-50mph. Due to a previous injury when the bolts on the left side of my seat came up and twisted the left side of my body? The person I was died. She no longer has a life. That version of me has been dead for 16yrs. She was an active single working mother of 2 boys. Today she is a disabled homebound woman struggling to live on disability. The only thing the ‘new me’ has that helps me be ‘more normal’ is multimodal pain management therapy that includes chronic pain medications. A decision I didn’t take lightly. My family and I, including my mother and extended family support today.

You see even though the woman I was died that day – the woman I am today is doing her best to live some sort of semblance of a life and when my meds are working and my pain is lower by a point or 2? I can cook dinner or get laundry done. I can shower. I can go to the store. I only leave the house on average twice a month; to see my doctor.

Before these guidelines my doctor had done 2 significant reductions in my medications without reducing my pain in a meaningful long lasting way. It’s never gone. It won’t ever be gone. There is no cure. And you want to take my life away for good? You don’t need to take my meds away just be patient I’ll die much younger. My spine is like that of an 80yr old woman at 44.

My spine is collapsing upon itself. I have spinal cord damage, 6 herniated discs in my neck, crushed lumbosacral nerve which causes on/off paralysis that can last for days to months in my left leg and foot. Scoliosis, bone spurring, Fibromyalgia, Osteoarthritis of the spine. Pain is all encompassing. Top of head to my toes. Of course my CNS is constantly sending signals to my brain screaming pain, pain – the only thing that eases those signals is traditional medications – including a low dose benzodiazepine because I have PTSD too. It helps slow those signals. It helps me stop shaking long enough to cope with every day stress. Like opening the mail.

I’ve tried all the other SSRIs which I must ask where is the inquiry into? These meds make me violently ill but are given without a second thought. Psychiatrists go to med school the longest and any old doc can prescribe unlimited amounts of medications in that class. Is the CDC calling for changes there? They’re ‘habit forming’ they have advertised side effects of DEATH! Where are those guidelines? Or is the reality not about addiction or deaths but the street value of my ancient opiate medications? No street value, no guidelines, and no attempt to take away what allows ‘new me’ to live, kind of?!

What about suicides related to untreated patients with chronic pain? Have we counted those heads yet? Bet those numbers are high. I’m talking about KNOWN suicides directly related to having no access to therapy or having their therapy stopped suddenly. Are we still investigating patch leaks? Fentanyl is stronger than a full day’s worth of my 12hr tablets but as recently as 2012 a friend died in her sleep from it. I had asked her to contact her doctor but in 2012 they wanted patients on fentanyl to keep the amount of tablets ‘on hand’ lower. Her death isn’t really why you are doing these guidelines. Special interest groups maybe but the scientific method has not been applied.

If we are serious about not failing other human beings; do not fail me by taking my meds away or having them reduced to the point that they are not effective. If we are serious about saving lives let’s make that OD epipen and training available. 1000$ is a lot to pay in cash when you get 750$ a month.

We need better education in the pain community. Maybe another hurdle would be signing a waiver and doing 3 classes on education a year for patients and families?! Maybe we are looking at the problem wrong? It seems to me we are. I’ve never been addicted to my medications. In fact, when pain is less? I do not clock watch for my next dose. When my anxiety is lower – I do not take it. It’s PRN now and just went 1 month without filling at all simply because I had enough left over to see me through a week.

There is no meaningful point to these new guidelines except to say the CDC did something about the problem of prescription deaths. Tell me are all meds included or just opiates? Do we take the diabetics needles away because some people use needles illicitly? No because the damage to the HUMAN is greater than a few who would use those needles illicitly yet we could argue that is more of a problem with communicable diseases that affect communities. In my case without ‘new me’s’ medications? I am as good as terminal but just not under the CDC’s guidelines. Guess my death or the death of others like me doesn’t matter? Whether we physically die or our life as we know it is taken from us; doesn’t matter? [We are sick fyi we die] I assure you more are of us exist than leaving comments. Are we simply too few to count? Therefore, too few to care about?”

To Submit Your Comment to the CDC: https://www.federalregister.gov/articles/2015/12/14/2015-31375/proposed-2016-guideline-for-prescribing-opioids-for-chronic-pain#open-comment

Follow Sandy on Twitter: https://twitter.com/axollot

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