My Story: What I Told the CDC About Its Guidelines

My Story: What I Told the CDC About Its Guidelines

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.

Sandy Sullivan

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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There are 6 comments for this article
  1. Doc Anonymous at 3:21 pm

    Very good comments! I think your recommendation of certification of education of pain patients is on the right track. I also believe that patients who need and benefit from chronic higher dose opioids should be allowed to register with the state and/or federal government as a legitimate user and not an abuser. New York is already planning such a patient registry for users of medical marijuana. Why not the same kind of registry for chronic pain opioid USERS?

    As far as banding together, it is a good idea but there is no nationwide coordination of such efforts. Some of the agencies that were arguing for legitimate use of opioids and many doctors who prescribed them for patients have been forced out of existence.

    By contrast, there are a myriad of federally funded programs that would ally themselves with PROP. In the 2016 proposed budget there is over $100,000,000 dollars in NEW funding for fighting drug abuse. At the same time total funding for 6 leading chronic pain conditions is only $80,000,000 and it is impossible to find a summary of federal funding. It will probably take a social media organizing effort to overcome those hugely daunting odds. So we all need to keep speaking up and speaking out. (Links: https://www.whitehouse.gov/ondcp/news-releases/2016-budget-opioid-resources and http://www.chronicpainresearch.org/public/CPRA_WhitePaper_2015-FINAL-Digital.pdf)

  2. Gerry Auriene-Knowlton at 3:11 pm

    I am the mother of Sandra Sullivan, who has been diagnosed with chronic pain for about 16 years. I have seen her go from an active young woman to a woman that hardly leaves the house. The pain has become worse over the years and the medicines she takes do not relieve all the pain. The medicines help her cope with the pain and enable her to do some things but not enough. The CDC is talking about stopping medicines after a person has been on for 12 weeks. If this happens, I’m afraid for what it would do to her and others that are in the same situation. She barely gets around now and stopping the meds would hurt her mentally, emotionally and physically as well. She needs help, not going backward. There needs to be more understanding of what a person goes through with debilitating illnesses and physical conditions. There should be more testing and treatments available for these people, more studies to assist them to lead more normal lives. Taking away their medications is taking a step backwards. My daughter has a young daughter that needs her mother there. One who can spend time and energy taking care of her, not the other way around. Thank you, Gerry Auriene-Knowlton

  3. Cheryl suppnick at 3:27 pm

    I can’t even begin to identify with sandy Sullivan i can understand chronic pain. my chronic pain has gone on for over 40 years. it is with me every day every night. recently I’ve been diagnosed with PTSD multiple falures snd iissues because of stress,anxiety,insomnia. Fibrpmyaldiay, back and neck issues, and by ball joints are one by one being replaced.
    Years ago I was given pain medicine not nearly what I needed and certainly no opiates didn’t do any good except made me more unhealthy and more sick so I turned to alternative medicine and supplements. it doesn’t seem like it’s working it doesn’t seem like it’s getting any better. I just keep getting sicker and sicker my hormones are shot my body is shot and it 67 years old I just want to live life.
    I can’t even begin to understand and even comprehend Sandy’s life but I can comprehend she needs all the assistant she can get all the hope she can get. give her all the hope that you can give her because hope is all we have

  4. Sandy Auriene Sullivan at 11:14 am

    Dee, we aren’t but we are scattered under other banners as 100m. Some are FM, diabetics, any number of diseases of the CNS [ALS, MS et al] because 100m of us suffer chronic pain in so many different ways. Some have strong lobby groups for them like MS or ALS but others like FM are still barely understood and then there is the WTH happened to my spine group…
    Also the too few to count was for the CDC’s comments. At time of writing under 500 comments. Seen many hit pieces against those of us who are aghast and against the guidelines. Thanks Dee and Jeannah. As well as National Pain Report which does a great job of keeping everything in one place!

  5. Jeannah Haber at 7:14 am

    I am so sorry for your pain (fibro 17 yrs here). Thank you for speaking out, for writing these brilliant and beautifully honest truths. This deserves to be read by every single human who ever judged those in chronic pain. Thanks Sandy for your voice!

  6. Dee Green at 6:09 am

    Very good 😊 I don’t think that we are to few to count at 100 million. I do think that a lot are to sick or technology challenged (some baby boomers & others don’t have access to internet) My kids taught me or I’d be in that class! We need to go out (if we can) door to door if necessary and let people know that this is happening. The national media surely isn’t going to be bothered, unless we are Louder than those who oppose (PROP anyone?) We are 100 million strong and must Stand Up and Be Counted! 😊