I Am an Addict

By Stephanie Whitaker, Guest Columnist

I am an addict. I admit it and I'm not ashamed of it.

I am addicted to life. I am addicted to minimal pain. I am addicted to doing laundry, washing dishes, cleaning the house, cooking, and taking out the trash. I am addicted to grocery shopping and running errands. I am addicted to participating in my kids' activities, going camping, road trips, and visiting quirky little out of the way attractions few people know about.

I am addicted to eating out, going to the movies, and visiting various fairs throughout the year. I am addicted to hanging out with friends, staying up late, and talking about anything and everything.

STEPHANIE WHITAKER

I am addicted to animals, having them, loving them, knowing they will always be there for me and cuddling with me when I'm not feeling well. I am addicted to being dedicated and loyal to my friends, family, and a lover if I should ever have another.

I am addicted to working, being an inspiration to kids through various social groups, and participating in and attending fundraisers. I am addicted to life and everything that it has to offer. If being an addict to all of these things is wrong, I don't want to be right.

Unfortunately, that's not how my life is. I am consumed every minute of every day by pain, nausea, and fatigue. I have to allot my energy each day to do the bare minimum, so that I don't end up in bed for days at a time when I overdo it.

I have to take multiple medications and supplements many times a day to keep my body going. I have physical limitations, dietary restrictions, and minimal contact with the world outside of a doctor's office. Why? Because I am not being treated for the many chronic pain conditions that I have.

Why? Because I am not being treated for the many chronic pain conditions that I have. I am being treated as a drug addict, even though I've never done drugs, have no history of abuse, and have clean toxicology screens every time I walk into an appointment.

This is what is happening in our society because the politicians, CDC, FDA, DEA, big pharma, and insurance companies have decided that we are not worth treating. Our health is nothing but a mere commodity in our country, instead of a basic human right. We have had our dignity, pride, confidence, support networks, even family and friends stripped away because they are under the impression that if we need opioids then we are addicts.

If that were the case, then shouldn't diabetics be stripped of insulin, amputees be denied prosthetic devices, epileptics not receive their anti-seizure meds, cancer patients not get chemo, and kidney failures not get dialysis? What about babies not getting their formula or breast milk to grow and develop properly?

If people with these conditions are not being denied proper treatment to have a high quality of life, then why are we being singled out because we have chronic pain conditions that we didn't ask for or want? If we are addicts, then so is everyone else that needs some form of medication or therapy to survive, grow, be productive, and have a healthy quality of life.

Quit singling out pain patients. The majority of overdose deaths are not pain patients, but drug users that obtain their supply on the streets, not from the medical community. We deserve better.

Yes, I'm an addict. I miss and grieve the all of the things I am addicted to, and will not stop fighting to get them back!

Stephanie Whitaker lives with interstitial cystitis, pelvic floor dysfunction, fibromyalgia, overactive bladder, IBS-C, chronic fatigue, myofascial pain syndrome, pudendal nerve damage, and PTSD -- and all of the anxiety and depression that comes along with them. She is a mother of two who lives in Maryland. 

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Brain Scans Link Fibromyalgia and Pelvic Pain

By Pat Anson, Editor

Fibromylagia and urological pelvic pain would seem to have little in common. The former causes widespread body pain, while the latter is marked by chronic inflammatory pain in the bladder or prostate.

But researchers at the University of Michigan have stumbled upon something that both conditions share – besides being difficult to treat.

While examining MRI brain scans of over 1,000 participants enrolled in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain Research Network  -- also known as the MAPP study – they found that people with fibromyalgia or chronic urological pelvic pain both have increased “gray matter” in their brains. Gray matter is tissue in the brain that helps transfer signals between nerves.

"Interestingly, when we put these individuals into the brain imaging scanner, we found that those who had widespread pain had increased gray matter and brain connectivity within sensory and motor cortical areas, when compared to pain-free controls," says Richard Harris, PhD, an associate professor of anesthesiology and rheumatology at Michigan Medicine.

Harris and colleagues want to know if widespread pain, thought to be a marker of centralization in the nervous system, actually originates in the brain. So it was a bit of a surprise to find additional gray matter in the brains of people with urological pelvic pain, a condition that can be caused by interstitial cystitis or chronic prostatitis.

"What was surprising was these individuals with widespread pain, although they had the diagnosis of urological chronic pelvic pain, were actually identical to another chronic pain disorder: fibromyalgia," said Harris.

In addition to the MRI scans, study participants were also asked to draw on a body map where they were experiencing pain. Many of those with pelvic pain indicated they had widespread body pain.

"This study represents the fact that pelvic pain patients, a subset of them, have characteristics of fibromyalgia," Harris says. "Not only do they have widespread pain, but also they have brain markers indistinguishable from fibromyalgia patients."

Harris hopes the study will lead to new ways of treating chronic pain -- as there might be similarities across pain conditions if both show widespread pain.

"We think that this type of study will help treat these patients because if they have a central nerve biological component to their disorder, they're much more likely to benefit from targets that affect the central nervous system rather than from treatments that are aimed at the pelvic region," Harris said.

Chronic Pain Patient Abandoned by Doctor Dies

By Pat Anson, Editor

This will be the first Christmas that Tammi Hale spends without her husband Doug in over 30 years.

The 53-year old Vermont man, who suffered chronic pain from interstitial cystitis, committed suicide in October after his doctor abruptly cut him off from opioid pain medication.

“His primary care provider kept trying to wean him off his opioid therapy, which worked at higher doses,” says Tammi. “My husband ran out (of medication) early a few times, so the doctor cut him off completely one day. Six weeks later he took his life as no medical establishment would treat his chronic pain.”

We’re telling Doug Hale’s story, as we have those of other pain patients who’ve committed suicide, because their deaths have been ignored or lost in the public debate over the nation’s so-called opioid epidemic.  Patients who were safely taking high doses of opioids for years are suddenly being cutoff or tapered to lower doses. Some are being abandoned by their doctors.

“I believe it will get worse with time. The docs are simply more interested in not risking their licenses than in treating chronic pain,” Tammi wrote to Pain News Network in a series of emails about her husband’s death.

Depression and suicidal thoughts are common for many people living with chronic pain and illness. According to a recent survey of over a thousand pain patients, nearly half have contemplated suicide.

DOUG HALE

But the problem appears to have grown worse as physicians comply with the “voluntary” prescribing guidelines released in March by the Centers for Disease Control and Prevention, which have been adopted as law in several states. Many doctors now fear prosecution and loss of their medical licenses if they overprescribe opioids. Some have chosen not to prescribe them at all.

While federal and state authorities track the number of drug overdose deaths, no one seems to be following the number of patients who are dying by suicide or from cascading medical problems caused by untreated chronic pain. Some in the pain community call this “passive genocide.” Tammi Hale compares it to the Holocaust.

“The Nazis eliminated the sick and the weak first, right? Makes you wonder,” she says. “I realize my comments are harsh, but I believe the public needs to be aware of the dangers any one of us could be facing with this silent epidemic.”  

Doctor Insisted on Weaning

Doug Hale began facing a life with intractable chronic pain in 1999, after a surgery left him with interstitial cystitis, a painful inflammation of the bladder. According to his wife, Doug tried physical therapy, antidepressants, epidurals, nerve blocks, TENS, cognitive behavioral therapy, and several different medications before finally turning to opioids for pain relief. High doses of methadone and oxycodone for breakthrough pain were found to be effective.

But a few years ago, Doug’s primary care provider (PCP) started urging him to wean to a lower dose.

“The PCP insisted on weaning. Although Doug clearly had documented malabsorption issues, the PCP persisted on weaning. The pressure to wean was unbelievable,” says Tammi.

“It came to a head in May of 2016. The PCP gave Doug one month to wean completely from 120mg/day of methadone and 20 mg/day of oxy. We knew this was impossible.”

Tammi says Doug checked himself into a 7 day detox program, where he was weaned to 40 mg of methadone a day. The doctor agreed to prescribe that amount, but it was not enough to relieve Doug’s pain. He started taking extra doses. 

“He ran out a week early in late August. The PCP abandoned Doug, stating ‘I'm not going to risk my license for you. The methadone clinic can deal with you.’” 

But the methadone clinic refused to treat Doug because they saw him as a chronic pain patient, not as an addict. “Had he turned to street drugs they could have treated him, but because he didn't break the rules they couldn't help,” Tammi explained.

Doug tried to detox at home, which Tammi calls a “brutal” experience. On October 10th, after being turned down by other healthcare providers, Doug went to his former doctor one last time to beg for help and was refused. The doctor said again that he didn’t want to risk his license.

“Doug left the office still thrashing in pain and despondent,” Tammi recalls. “The next day, my dear, sweet thoughtful husband of 32 years; a father, son, brother, uncle, and friend, well loved by many, dragged a chair to a remote spot in our back yard. A spot we could not see from the house, the road, or by the neighbors. 

“He shot himself in the head to escape his pain. He made sure we could still live in our home and not be plagued by gruesome memories. I just wish the medical establishment had an ounce of the compassion that he did.” 

“Can’t take the chronic pain anymore. No one except my wife has helped me. The doctors are mostly puppets trying to lower expenses.”

— Doug Hale

“Can’t take the chronic pain anymore. No one except my wife has helped me,” Doug wrote in a suicide note. “The doctors are mostly puppets trying to lower expenses, and (do not accept) any responsibility. Besides people will die and doctors have seen it all. So why help me.”

Tammi says she has been comforted by an outpouring of love and support from her family, friends and community. Doug’s suicide surprised many.

“Doug did make vague references about suicide during the summer due to the desperation and pain. He was just such a tough guy, he survived so much that my reaction, and others after the fact, was no. Not Doug. He's like the bionic man. Too much of a warrior to give up,” said Tammi.

“At his memorial so many people commented on what an inspiration he was to them. To graciously bear the path of pain and his never-give-up attitude made them reevaluate their own daily issues. I guess you could say his legacy was love and to never quit.”

Tammi consulted with a medical malpractice attorney after Doug's death, who told her the chances of winning a lawsuit against the doctor were slim. The cost of legal action would have also been prohibitive, after so many years of dealing with Doug’s medical expenses.

Tammi and Doug may never get their day in court, but she is determined to share his story in the hope that patients, doctors and regulators learn from it.

“My promise to him was to share with others. He was thrown away like a piece of trash, but his life and the life of all humans is precious.  All patients deserve to be treated respectfully,” she wrote. “Hopefully some changes will come in time before the holocaust grows too much larger.”