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Interesting article on Dystonia and Opioids

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The other opioid crisis: pain patients who can’t access the medicine we need


Changing guidelines for prescriptions have left people like me without care.

(Sue Ogrocki/AP)
By Anne Fuqua March 9
Anne Fuqua is a former nurse living in Birmingham, Ala.

When you hear the words “opioid crisis,” you probably think about tragic deaths from addiction. But there is another opioid crisis, one I know well: the inability of pain patients to access the medication they need to function.

I was diagnosed with primary generalized dystonia in my late teens. It’s a neurological disorder that causes involuntary movements and painful muscle spasms. I was unable to tolerate most of the medications used to treat Parkinson’s disease, which are commonly used against dystonia. The ones I could tolerate didn’t help. But for reasons doctors don’t fully understand, opioids have a dramatic effect on my symptoms. My body is not nearly as rigid and jerky. The spasms that pulled my body to the side, making it difficult to sit up straight, are gone. My fingers are no longer clenched.

But my situation has gotten more complicated. At first it was small things. In 2014, my doctor started requiring more frequent appointments to keep writing my prescriptions. I didn’t mind. Next, my doctor decided to no longer participate in my insurance. It cost me $150 out of pocket for each visit, but it was worth it to be able to continue the life I had worked so hard to build.

In 2015, the state of Alabama began sending mandatory prescription monitoring reports to physicians who prescribed patients high doses of opioids, along with a form letter encouraging doctors to carefully consider whether their patients should be receiving this dose. My doctor, who had treated me for nine years, was apologetic. I could see the sadness in his expression as he explained that he would need to reduce my dose. That first reduction was small, and I tolerated it easily. The second reduction, however, brought the return of pain and several of my dystonia symptoms, problems I had not dealt with in years. My doctor was distressed, and he decided to put me back on my original dosage.

My relief was short-lived. A few months later, my doctor chose to leave pain management. He told me he could no longer stand the paperwork and stress involved with being a pain specialist and trying to decide between protecting his ability to provide for his family and protecting his patients.


What followed was the hardest time of my entire life. I had to taper my medication while searching for a new doctor. I became completely debilitated and could barely manage on my own. Pain and spasms feed on each other, creating a vicious cycle. Moving from one chair to another was once again a very difficult task. I could no longer drive the van I had worked to purchase.

I had my records sent to many doctors across Alabama. Some of my contacts in the medical community reached out to doctors on my behalf. No one was even willing to evaluate me. When the Centers for Disease Control and Prevention introduced guidelines for opioid prescribing in 2016, doctors began treating pain patients differently. It didn’t matter if a patient had been stable and benefitting from medication for many years. Doctors pulled back.

I was able to find a doctor out of state who was willing to treat me, but many patients have not been so lucky. In 2014, I started keeping a list of pain patients who had committed suicide, unable to cope with the pain. Sometimes the list grows weekly, sometimes daily. I knew some of these people personally; some names were submitted to me by their loved ones. Others were mentioned in the comment sections of articles or posted on Facebook. Sometimes it’s not even a full name. My list has more than 100 entries. Children have lost mothers, fathers and grandparents. I have lost friends. Just a few years ago, discussion of suicide was rare in the community of pain patients. Now I see it on online bulletin boards, in article comments and in online groups dedicated to the subject. That’s my opioid crisis.

As a former nurse, I never dreamed that our government would encroach to this degree on the relationship patients have with their medical providers. Twenty years ago, when I was attending nursing school, the Joint Commission, a healthcare accreditation board, introduced the “fifth vital sign,” which required health-care providers to ask patients whether they had pain and how severe it was as part of the routine assessment of vital signs. Now we’ve done an about-face because of opioid abuse to implement policies that will cause physicians to abandon patients or taper medications regardless of whether this will harm their quality of life.

I would love to return to working as a nurse, though I can’t imagine doing it now. I used to work for a hospice service. I don’t want to tell a patient writhing in pain at 4 a.m. that he will have to find a way to cope because prescribing policy changes now affect patients with cancer and those who’ve just had surgery.

My opioid crisis is wondering whether each time I fill my medications will be the last time. I wonder how much longer I’ll be able to do the things I enjoy. I’m 38 years old. There’s so much that I want to do with my life. I want to go back to work part time, but I’m afraid to, because my future is so uncertain. I feel like I’m on death row.

There are multiple opioid crises in America. The crisis of people in the throes of addiction deserves the time, attention and talents of health-care providers and legislators. But the crisis of people in pain deserves the same.

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I have an issue with any opioid shutting my colon down.   Toss in a history of NSAID's and stomach ulcers and those are out.  Peripheral Neuropathy is bad, so trying to keep it under control with Gapentin. This stuff is just bizarre. 

When I had part of my lung removed due to cancer, post-op was told I needed to take pain medication to help keep it under control.  I explained why I didn't want any pain medication, and my nurse was great and asked what could they go "get me a walker!" I pace to control the pain. That it about it. So post op, chest pump/drain hanging off the walker and up and won the hallway I went at night. Complete with my yellow "fall risk" wristband. 

It is odd but when I do my intense exercise (pounding a heavy bag) is the only time I don't feel intense pain. It is like my pulse is racing (145-160 bpm), sweat pouring off my head, that I disconnect from constant pain.

Thankfully my PCP and MDS understand the level of pain. Another doc dismissed it, MDS corrected him with "read his chart, thoracic surgery didn't phase him at all".  The hardest period was postop brain surgery as I was to take it easy. Ha!


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Every opioid I've had to try eventually gave me a rash.  I also never found them to be remotely recreational.  Between those I'm highly unlikely to ever have any addiction problems.  


But I'm also a bit of a wuss when it comes to pain.  Since I can't take NSAIDS for a week post surgery due to requiring blood thinners for that time frame I really just need to avoid the need for surgery.


For those that need them, and don't abuse them, the restrictions on opioids are a real shame.

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