People with hidden disabilities could soon be entitled to blue badge parking permits under Department for Transport (DfT) plans. The Government said the proposals would make it easier for people with conditions such as dementia, Fibromyalgia, Lupus, and autism to travel to work, socialize, and access shops and services.
It is hoped the move – which would be the biggest change to the blue badge scheme since it was introduced in 1970 – would help create parity in the treatment of physical and mental health.
The DfT said councils have different interpretations of existing rules with only some recognizing hidden disabilities.
The new policy is designed to provide “clear and consistent” guidelines. Around 2.4 million disabled people in England have a blue badge.
This enables them to park free of charge in pay and display bays and for up to three hours on yellow lines, while in London they exempt holders from having to pay the congestion charge.
Around three out of four blue badge holders say they would go out less often if they did not have one, according to the DfT.
Transport minister Jesse Norman said: “Blue badges give people with disabilities the freedom to get jobs, see friends or go to the shops with as much ease as possible.
“We want to try to extend this to people with invisible disabilities, so they can enjoy the freedom to get out and about, where and when they want.”
The changes being put to an eight-week public consultation also include blue badge assessments being carried out by a greater variety of healthcare professionals who can spot if mental health is causing mobility issues.
Sarah Lambert, head of policy at the National Autistic Society, welcomed the proposal and said amending parking permit access could be “a lifeline” for many autistic people, who often do not qualify under current regulations.
Autistic people can suffer anxiety from not being able to park in a predictable place close to their destination, and some can “experience too much information” from the environment around them on public transport, Ms. Lambert said.
“We hope the Government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.”
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 cut off 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 surveyof over a thousand pain patients, nearly half have contemplated suicide.
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.”
“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 are precious. All patients deserve to be treated respectfully,” she wrote. “Hopefully some changes will come in time before the holocaust grows too much larger.”
It’s a trickle at present, but the conversation around chronic pain between doctors and patients is no longer one way only.
Over the past few months, the constant messaging suggesting chronic pain patients are dying in dramatically increasing numbers because of opioid overdoses has been questioned.
Understand, the messaging was indeed clever. Chronic pain patients weren’t directly and specifically named, but the messaging caused listeners and readers to believe it was pain patients whose lives were being shattered, or even ended, due to opioids.
Then a few of us in media began to ask questions, and immediately the anti-opioid medication messaging began to falter. Patients suffering hideously from non-stop pain willingly spoke about the horrific conditions of their lives.
They voluntarily shared longtime doctors who had prescribed opioid medication which made their lives at least livable were under pressure to cut dosages dramatically, with the objective to end prescribing altogether.
There is pressure from supervisory medical bodies and governments. Ontario ended coverage of opioids on January 1, 2017, and now the elderly on fixed incomes, battling constant vicious pain, are required to pay for their not inexpensive medications out of pocket.
I interviewed the Federal Minister of Health at her request. Dr. Jane Philpott was ineffective in making the case against opioids for pain patients. In fact, she repeatedly told me my questions were “fantastic” and “excellent.” The only reason I asked the questions is that they reflected the need for relief from pain that can destroy the quality of life.
Last weekend, Dr. Lynn Webster of Salt Lake City, Utah, past president of the American Academy of Pain Medicine and co-producer of The Painful Truth documentary revealed the anti-opioid medication crusade was undertaken by U.S. insurance companies, which we’re finding opioid prescriptions expensive to cover.
Today I’ll be speaking with Dr. Stephen Nadeau, a scientist and neurologist with over 30 years in a U.S. tertiary care center treating patients with non-malignant pain. Dr. Nadeau heard my interview with the health minister and chronic pain patients and will share his own views on the subject.
Back with me today as well is Dawn Rae Downton, a national journalist and chronic pain patient who has a euthanasia plan in place in the event her opioid medication is arbitrarily stopped. Downton recently wrote a Globe and Mail column about her Fentanyl use.
Marvin Ross, who writes on health matters for Huffington Post Canada, has been challenging politicians and their anti-opioid agenda for some time.
If you’re a chronic pain patient, doctor, or even a politician who cares about the crushing weight of never-ending massive pain, listen today and then speak out.
Living pain-free is a human right. Pain patients should not be reduced to pleading for help and meeting arrogance and indifference as a reply.
Fibromyalgia is linked to a malfunction in the ANS. Patients with fibromyalgia find that their Sympathetic Nervous System functions at an elevated pace and that their Parasympathetic Nervous System works at a much lower rate. Such individuals always face this inevitable “fight or flight” response. When such individuals are in a hyperactive state, they have an escalated heart rate. Women with this problem suffer from dysfunctional ANS.
The HPA axis is a network of stress responses by the brain, pituitary, and adrenal glands. The main function of the hypothalamus is to maintain the body’s balance. It receives and sends messages from the nervous system via hormones through the circulatory system. The hypothalamus regulates and controls blood pressure, digestion, sleep cycles, sex drive, body temperature, coordination, heart rate, and sweating.
The pituitary gland is responsible for the secretion of certain important hormones for the body while the Adrenal Gland produces hormones for the entire body and controls chemical reactions and the “fight or flight” response to stress.
Together, the ANS and the HPA axis are major paths for body responses during stressful conditions. These responses include pain, trauma, infection, low blood sugar, and low blood pressure.
Due to certain malfunctions in the ANS and HPA, the body can struggle to maintain homeostasis. External factors such as persistent daily stress, injury, or other stressors can further knock the body’s equilibrium off-balance. The body systems and stress response regulated by the ANS and HPA respectively can go haywire.
Studies conducted have shown that fibromyalgia patients are prone to either inactivity or overactivity in the HPA, causing abnormal levels of important hormones and hence leading to various symptoms of fibromyalgia.
Every so often he grabs his left shoulder and winces. It hurts when he walks when he sits still when he rises from his couch, and when he missteps in a damp meadow. More than hurts. It seems a kind of agony, though he never mentions it. There are times when he cannot help but show this, the fallout from a car accident four years ago, in which the car he was driving flipped and rolled, leaving Freeman and a friend to be pulled from the car using the Jaws of Life.
Despite surgery to repair nerve damage, he was stuck with a useless left hand. It is stiffly gripped by a compression glove most of the time to ensure that blood doesn’t pool there. It is a clamp, his pain, an icy shot up a relatively useless limb. He doesn’t like to show it, but there are times when he cannot help but lose himself to a world-ending grimace. It’s such a large gesture, so outside the general demeanor of the man, that it feels as if he’s acting.
This means Morgan Freeman can’t pilot jets the way he used to, a hobby he took up at sixty-five. He can no longer sail as well. There was a time when he would sail by himself to the Caribbean and hide out for two, three weeks at a time. “It was complete isolation,” he says. “It was the best way for me to find quiet, how I found time to read.” No more. He can’t trust himself on one arm. He can’t drive, not a stick anyway, not the way he used to — which is to say fast, wide open, dedicated to what the car can do.
And he can’t ride horses as much, though once he rode every day. He never mentions any of it as a loss, though how could it be anything else? He never hints around about the unfairness of it. “There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I play golf. I still work. And I can be pretty happy just walking the land.”
Wait. How can he play golf with a clipped wing like that? How can you swing a club when you can’t lift one of your arms?
“I play one-handed,” he tells me. “I swing with my right arm.” How does that work out for you? “See for yourself,” he says. “I’m playing at 3:00 today.”
Freeman’s revelation that he has fibromyalgia spread like wildfire through the FM community. Finally, here was an A-list celebrity acknowledging he had been diagnosed with FM. A handful of other celebrities have had the courage to speak up about their FM, for which we are extremely grateful, but as yet none have had the super-star power of Morgan Freeman.
Almost immediately FM patients and advocates began calling on Freeman to speak out on behalf of others with fibromyalgia. It’s even been rumored that a large national FM organization has approached him about being their spokesperson. While most in the FM community seem to strongly support that idea, a few have questioned the wisdom of Freeman being an FM spokesman.
From what I have read, those who are hesitant about Freeman representing the FM community appear to have three concerns:
Does he really have fibromyalgia since he only mentioned pain in his left shoulder and arm? He is still very active and therefore would present an inaccurate picture of how debilitating FM can be. Since most people with FM are women, as a man he would not be representative of the majority of patients. Let’s take a closer look at each of these concerns.
Does he really have fibromyalgia? – I have to admit the first time I read the article I, too, wondered whether he had been diagnosed correctly. But when I reread it, I noticed that he said, “Up and down the arm. That’s where it gets so bad. Excruciating.” His statement, “That’s where it gets so bad” sounds like he probably has other pain but it’s the pain in his arm that is the worst. For many years, I could have made a similar statement about my left hip. Although I had body-wide pain almost all the time, it was the pain in my hip that was usually the worst.
We also have to remember that the purpose of this interview was not to discuss Freeman’sfibromyalgia. The author simply noticed Freeman grimacing several times and asked him about it. It’s logical that Freeman would only mention the pain he was experiencing at the time. Or perhaps he did go into more detail but when composing the article, Chiarella chose to include only what he felt was most important.
So is whether or not Freeman really has fibromyalgia a valid concern? Absolutely. When we’re talking about someone being a spokesperson for a disease, it’s legitimate to want to be sure they actually have the disease. We just shouldn’t jump to any conclusions based on one isolated statement.
Morgan Freeman opens up his ‘struggle’ about fibromyalgia
His activity level doesn’t paint an accurate picture of FM.– People with FM fall into a wide range of functioning abilities. Freeman appears to be fairly high-functioning since he continues to work and play golf. The article did note, however, that he has had to give up several activities that he loved. On the other hand, some people with FM are completely disabled, unable to handle even basic self-care tasks. The rest of us fall somewhere in between. While Freeman’s activity level should not preclude him from representing people with FM, I would hope that part of his message would be to describe just how debilitating FMcan be and to explain that different patients have different levels of disability.
As a man, he is not representative of the average FM patient.– Frankly, I think the fact that he is a man with FM is a positive thing. Whether we like it or not, when it comes to health issues, men are still given more credibility than women. Studies have shown that health care professionals are more likely to take a man’s symptoms seriously, but attribute a woman’s symptoms to emotional causes. Although the acceptance of FM has come a long way in recent years, there are still some people, including some medical professionals, who don’t believe it is real. Therefore, having a well-known and highly respected man like Morgan Freeman speak out about FM might help improve our credibility among the doubters.
Given the repeated urgings to step up and be a spokesperson for fibromyalgia, I sometimes wonder if Freeman wishes he had never mentioned it. He probably never dreamed uttering that one word in the middle of a multi-hour interview would ever garner so much attention.
In our enthusiasm to have a prominent celebrity like Morgan Freeman speak out on our behalf, I think we need to keep in mind how doing so could impact his life. Years ago celebrities did everything in their power to keep any health problems secret because revealing an illness could ruin their careers.
Although Hollywood seems to be a little more accepting these days, I suspect there is still some hesitation about casting an actor who has a known health issue. And even if his career is not a major concern, Freeman strikes me as the kind of man who prefers not to dwell on his pain and what he can’t do but rather to push ahead and focus on what he can do.
Yes, it would be wonderful if Morgan Freeman would decide to become an advocate for fibromyalgia. The entire FM community would welcome him with open arms. His support could do wonders for increasing awareness and raising money for research. But ultimately it’s a personal decision – each of us has to decide what is best for our lives at any given point in time. While I hope he’ll choose to use his celebrity to help others with FM, I’ll respect his decision either way.
Lyrica is the brand name for a prescription medicine called pregabalin. Although it is an anticonvulsant or an anti-epileptic drug, pregabalin is commonly prescribed to alleviate nerve or neuropathic pain – a type of pain caused by damage to, or a disease affecting nerves.
Neuropathic pain doesn’t normally respond to common painkillers such as ibuprofen or paracetamol. This is because the mechanisms that cause neuropathic pain are different from the underlying causes of other pain.
Pregabalin is closely related to gabapentin, a medication developed to treat partial seizures. This is a type of epilepsy caused by a surge in nerve cell excitability in one area of the brain.
Because nerve pain and epilepsy are related to abnormal levels of nerve excitability, an American neurologist tested gabapentin on patients in the mid-1990s and found it relieved their neuropathic pain.
Both are recommended as first-line treatments for nerve pain by the International Association for the Study of Pain. Lyrica was approved in 2004 in the United States for the treatment of partial seizures of epilepsy and some neuropathic pain.
Subsequently, pregabalin was developed as an improved version of gabapentin. The amount of pregabalin absorbed into the bloodstream increases in a linear fashion; unlike gabapentin, where the dose goes up, the proportion absorbed into the bloodstream goes down. This makes the effects of pregabalin more predictable than those of gabapentin.
In 2007, pregabalin was approved in the United States to treat fibromyalgia, a chronic disorder characterized by pain and muscle tenderness throughout the body. In Australia, it was registered by the Therapeutic Goods Administration in 2005.
In neuropathic pain, damaged nerve fibres are hyper-excitable, which means sensations such as light pressure or touch, which are normally barely felt, are perceived as painful.
Pregabalin (and gabapentin) are thought to interact with specific proteins in nerve endings in the brain and spinal cord. This reduces the entry of calcium ions into nerve terminals to dampen the release of pain neurotransmitter molecules in the spinal cord and brain.
Nerve pain is more severe than non-neuropathic pain. Patients with persistent nerve pain often describe it as intense burning or shooting sensations in their arms, hands, fingers, legs, feet, or toes. Because it’s often poorly relieved by available medications, the pain is unrelenting and intrudes into all activities of daily living.
Some groups have a higher prevalence of neuropathic pain than others, particularly those who suffer from conditions that cause damage to the nerves, such as those with diabetes or following a bout of shingles.
Neuropathic pain is also common after certain operations, such as a mastectomy, and affects about 35% of people with HIV infection. About 20% of cancer patients with chronic pain will have pain with neuropathic characteristics either because a tumor is pinching one or more nerves or because of damage to nerves that results from the cancer treatment itself.
The recommended pregabalin dose to relieve nerve pain is 150 mg to 600 mg per day. The doctor will initially prescribe a relatively low dose that is typically 75 mg once or twice daily, and 25 mg once or twice daily for the elderly or children. This will gradually be increased over several months.
In people with partial seizures, a doctor may prescribe pregabalin as an add-on treatment to other anti-epileptic medications. But it is not the best add-on treatment for everyone.
The doctor will gradually increase the dose, usually starting at 75 mg twice a day or 50 mg three times a day. The goal is to reach the dose that gives the best control of partial seizures without causing troublesome side effects.
Pregabalin capsules are marketed in strengths ranging from 25 mg to 300 mg. It’s listed on the Pharmaceutical Benefits Scheme in Australia, which means you pay up to A$38.30 for a pack of 56 capsules or A$6.20 if you have a concession card.
How many people use it?
When pregabalin was first listed on the Pharmaceutical Benefits Scheme in 2013 to treat neuropathic pain, the then health minister announced it would help 270,000 Australians. However, between June 2015 and 2016, pregabalin’s item number was claimed around 650,000 times. This may be because the effects of pregabalin are more predictable than those of its predecessor, gabapentin.
Side-effects are the main reason patients stop taking pregabalin for nerve pain. So it is really important that the initial dose is not too high and that the dosage gets increased slowly, especially in older people and those with impaired kidney function.
Pregabalin is excreted from the body in urine through the kidneys. People with impaired kidney function need lower doses of pregabalin as the drug would be excreted more slowly. Pregabalin is not broken down in the liver so it does not interfere with the liver breakdown of other medications.
Prolonged use of pregabalin does not produce tolerance and dependence, nor does it have the same potential for misuse, abuse, or addiction. Pregabalin can also be used safely with other painkillers such as paracetamol and morphine.
Another study is raising questions about the safety of the anti-seizure drug gabapentin, especially when it’s taken with opioid pain medication.
According to research published online in PLOS Medicine, combining gabapentin with opioid painkillers is associated with a significantly higher risk of dying from an opioid overdose than opioid use alone.
“Clinicians should consider carefully whether to continue prescribing this combination of products and when deemed necessary, should closely monitor their patients and adjust opioid dose accordingly,” wrote lead author Tara Gomes, Ph.D., principal investigator for the Ontario Drug Policy Research Network and an assistant professor at the University of Toronto.
Gomes and her colleagues analyzed data from 1,256 people in Ontario, Canada who died from opioid-related causes, and compared them with a control group of 4,619 people who also used opioid medication, but did not die of an opioid-related cause.
Overall, 12.3% of the people who died and 6.8% in the control group were prescribed gabapentin in the prior 120 days. After adjusting for additional risk factors, the researchers estimated that the combination of gabapentin and opioids was associated with a 49% higher risk of dying from an opioid overdose.
Although gabapentin is an anticonvulsant originally developed as a treatment for epilepsy, it is now widely prescribed for neuropathy and other chronic pain conditions, sometimes in combination with opioids.
Until now, no previous study had examined the risks of using gabapentin and opioid medication simultaneously, even though both are known to cause respiratory depression that can lead to an overdose.
“Our study has important implications for public health, particularly given the high degree of co-prescription. Almost 10% of patients treated with an opioid in our study also used gabapentin, while nearly half of patients treated with gabapentin were co-prescribed opioids,” said Gomes.
“Gabapentin is frequently used as an adjunct to opioids for neuropathic pain syndromes, but physicians may not be aware of the potential for respiratory depression with this drug; thus, increased awareness among patients and clinicians about the potential for a life-threatening interaction between these drugs is essential.”
The researchers believe pregabalin, an anticonvulsant that acts similarly to gabapentin, may also raise the risk of overdose when taken with opioids. But they were unable to test their theory because of the limited use of pregabalin during the study period.
Both pregabalin and gabapentin are produced by Pfizer — under the brand names Lyrica and Neurontin — and are two of its top-selling drugs. Pfizer did not respond to a request for comment on the Canadian study.
Gabapentin is approved by the FDA to treat epilepsy and neuropathic pain caused by shingles. It is also prescribed “off-label” for depression, migraine, fibromyalgia, and bipolar disorder. About 64 million prescriptions were written for gabapentin in the U.S. in 2016, a 49% increase since 2011.
Pregabalin is approved by the FDA to treat diabetic nerve pain, fibromyalgia, epilepsy, post-herpetic neuralgia caused by shingles, and spinal cord injury. It is also prescribed off-label to treat a variety of other conditions.
The CDC’s opioid prescribing guidelines recommend both pregabalin and gabapentin as alternatives to opioids, without saying a word about their potential for abuse or side effects. Pfizer has signed agreements with local prosecutors in Chicago and Santa Clara County, California to support the CDC guidelines and withdraw funding from patient advocacy groups and non-profits that question their validity.
“We believe… that gabapentinoids are being prescribed excessively — partly in response to the opioid epidemic,” wrote Christopher Goodman, MD, and Allan Brett, MD. “We suspect that clinicians who are desperate for alternatives to opioids have lowered their threshold for prescribing gabapentinoids to patients with various types of acute, subacute, and chronic noncancer pain.”
1. “[My partner] reminds me daily I am wanted and needed and not just a burden.” — Ally Small
2. “I often feel bad that I can’t do ‘normal couple things’ with him like walking or standing much, going out when our friends do or even holding hands properly, so we often struggle to find ‘things to do other than just hanging around (which is lovely in its own right). One day he suggested we could go to the local nature preserve and he could wheel me around. He didn’t suggest we go for a walk (which would either make me feel bad because I would have to tell him I can’t walk that much or we would both know that ‘walking’ really meant ‘rolling’) but actually used the proper wording. He didn’t know how much that simple syntax meant to me until a few weeks later. It was at that moment I realized that he just ‘got it and understood me more than either of us thought. It was the perfect example of automatic acceptance.” — Katie Taaffe
3. “My husband is a research scientist. We were together 11 years before I got my diagnosis. When we finally had a name for what plagues me (severe rheumatoid arthritis) he read all of the medical literature available and [now] attends all of my medical visits including exams but doesn’t say a word unless I ask him for his opinion. I once joked he was more of an expert about my illness than I was and he dropped what he was doing, wrapped me in a hug, and said, ‘You’re my hero. I’m just your biggest fan.’” — Joy Hanford
4. “My boyfriend came home from the marines when I was admitted for fistulas, and he slept on the floor the whole week so he could be with me in the hospital.” — Grace Shockey
5. “My boyfriend has been my partner for going on seven years and caretaker for four years. He gets my medication for me every night. He brings juice and keeps track of all of my different pills for different nights.” — Katelyn Burd
6. “My partner does little things every day. He helps me keep my dignity by not [making me] have to ask for help when I need it most but am too stubborn to ask.” — Emma-Jayne Tucker
7. “I have ulcerative colitis so spend a lot of time in the bathroom. My husband wanted to give me something I could put all around the house to look at and feel better and know he’s there for me when I’m not feeling well. He bought a dozen little jars with a piece of chalkboard on the front. He wrote our initials on the chalk and put a folded-up copy of the lyrics to our wedding song inside each bottle. There is now a bottle in every bathroom, the kitchen, and all the bedrooms. It makes me smile every time.” — Heather Hecht
8. “My husband comes to every appointment with me to get a better understanding of how my illness really affects me. When he knows I’m nervous, he says something to make me laugh, and when he can tell I’m scared, he reaches out to hold my hand. His little gestures touch my heart every time.” — Rebecca Lalk
10. “He calls me every day on his lunch break. If he knows I am having a rough day (or he just senses it) he will either text or call me at least every hour.” — Shelly Jones
11. “I suffer from chronic migraines, and at times I live in my dark, cold bedroom for days at a time. My husband of 19 years has done numerous little things that have touched my heart during my attacks, however, the one I love the most is when he climbs in bed and holds me. He doesn’t ask me how I am feeling because he already knows, he doesn’t try to fix my pain because unfortunately he cannot… he is simply there, loving me unconditionally.” — Robyn Eastwood
12. “We’d been walking for a while, and he realized by the end of the walk I was starting to lean on him. I try my best not to most of the time, but I just didn’t realize it that night. When he felt me putting my weight on him, he asked if I was OK. I brushed it off, but he could tell I was really hurting. He picked me up. I vigorously protested because I was so embarrassed. I never wanted him to see my weakness. Not only did he accept me, but he didn’t look at me any differently. Not even for a second. He carried on the conversation we were having and carried me all the way home.” — Destin Shyann
13. “He told me, while I was mid-migraine, that he was not leaving. He said, ‘I need to make sure you are going to be OK.’” — Kristin Marie Kaskeski
14. “When I was hospitalized for the first time my husband packed me a picnic tea party complete with a teapot, my best teacups, and even a pretty tablecloth. We also wrote letters to each other every day and exchanged them at night during visiting hours. He’s also done really hard things for me too. Like when I would call him on the first night of my hospitalizations begging for him to take me home, weeping, and he would say he loves me but no, it breaks his heart, but I have to do this. Through all of this, he’s my hero.” — Claire Nieuwoudt
15. “I recently had one very good day where I had managed to shower, dry my hair, get dressed, and put on makeup. I joked, ‘I’m pretending to be a normal person today.’ He wrapped his arms around me, kissed me on the forehead, and said, ‘Just be a normal you.’ It told me he accepted me for who I am, illness and all.” — Jen Keating
16. “He lets me ask for help. He knows it makes me feel bad if he swoops in every time I struggle to open something or pick something up. He’s there when I need him, but he lets me make that call and that means so much.” — Emily Matejic Souders
17. “He gave up school and a fantastic job to be my 24/7 caregiver — riding out each seizure with me, carrying me to the bathroom, bathing me, taking me to each appointment, etc. He’s given up everything to fight for me.” — Melody Hitzeroth
18. “[My partner] washes my hair and ties my shoes when I don’t have the energy. I have multiple sclerosis (MS) and am seven months pregnant. Small things add up.” — Jordann Chitty
19. “He will just hold me. Any time I am symptomatic he will just hold me and it’s enough to help improve my mood and make everything seem tolerable and manageable. I don’t know if I would be doing as well as I am without him.” — Hallie Ervin
20. “[My partner will] ignore it, but not me. I’ll be doubled over, and she’ll ask if I’m good, and if I say, ‘Yes just dealing,’ she’ll leave it at that. She won’t hover or get in my way. She just keeps on about her business, still talking and interacting as much as she sees I can stand.” — Loretta Woods
21. “He believed me and helped fight for answers.” — Jennifer Peterson
U.S. Attorney General Jeff Sessions recently shared his idea for solving the opioid crisis: aspirin, sleep, and less marijuana.
Speaking at an event in Tampa on Tuesday to celebrate Ronald Regan’s birthday, Sessions said his goal for 2018 is to see a greater decline in the number of opioids prescribed (he said last year there was a 7 percent decline).
“That may be an exaggerated number, they had it as high as 80 percent. We think a lot of this is starting with marijuana and other drugs too,” Sessions said. “But we’ll see what the facts show, but we need to reduce the prescription abuse and hopefully reduce the addiction that’s out there.
On Wednesday, Sessions doubled down on his previous remarks during a speech to Tampa law enforcement.
“I am operating on the assumption that this country prescribes too many opioids. People need to take some aspirin sometimes and tough it out a little bit,” Sessions said, then cited White House Chief of Staff John Kelly as someone who refused to take painkillers after surgery on his hand. “You can get through these things.”
Sessions’ remarks were met with criticism from the chronic pain community, who explained that pain relief isn’t always as simple as “taking aspirin and going to bed.”
LITTLE JEFF SESSIONS HAD OBVIOUSLY NEVER BEEN IN CHRONIC PAIN. LET HIM LIVE A WEEK WITH WHAT I ENDURE DAY IN AND DAY OUT. HE’LL BE SINGING A DIFFERENT TUNE. HE SHOULD LEGALIZE MARIJUANA FOR PEOPLE IN CHRONIC PAIN SO THEY CAN WEAN OFF OF OPIODS.
I MAY NOT PLAY A DOCTOR ON TV, BUT I AM A REAL ONE, AND I THINK JEFF SESSIONS IS THE WORST MAN IN AMERICA TO BE GIVING MEDICAL ADVICE OR CREATING HEALTH CARE
Sessions’ comments are at odds with data on opioid use and addiction. The opioid crisis claimed approximately 63,000 lives in 2016, according to data from the National Center for Health Statistics. However, syntheticopioids like fentanyl caused about a third of these deaths — which have increased 88 percent per year since 2013. Heroin caused about a fourth, and prescription opioids caused 23 percent, down from 26 percent in 2009.
Studies show the majority of people prescribed opioids do not become addicted (only between 1 and 12 percent develop an addiction). And a 2017 study found that 51.9 percent of people entering treatment for opioid use disorder started with prescription opioids, which is down from 84.7 percent in 2005. Among those, research has found that 75 percent of all opioid misuse starts with medication not prescribed to them.
Addiction to opioids often begins in the doctor’s office. These drugs are typically the only option to manage pain after an operation or in patients with serious injuries. They’re also frequently prescribed to patients with chronic pain, and it’s these patients who are most at risk for opioid addiction.
Ted Price is an associate professor of neuroscience at the University of Texas at Dallas. His work focuses on the molecular mechanisms that cause pain to persist even after the injury that triggered it has healed.
What he and his colleagues have discovered is that a buildup of a particular substance between neurons plays a major role in our experience of ongoing pain. That new understanding could help lead to a new treatment for chronic pain that leaves addictive drugs out of the equation altogether.
On KERA’s Think, he talks about the future of chronic pain research — and what it might mean for the U.S. opioid crisis, which claimed more than 50,000 American lives in 2016.
It can go beyond acute feelings of pain. Chronic pain can result in a host of problems including cognitive disorders, clinical depression, and hair loss. The NIH reports about 11 percent of American adults to suffer from this condition.
“For many, it’s very disturbing. Even when they’re not doing anything, they’ll feel this stabbing or burning pain coming from the limb,” Price says. “Normally, pain is a danger signal to the brain that something’s wrong, but when they look, nothing looks wrong.”
When we feel pain, nerve cells called “nociceptors” are activated and send that signal to the brain. When working normally, this process is helpful: It tells you that you’re hurt and you need to protect yourself. After a severe injury or surgery, nociceptors fire frequently and are meant to stop once you’ve healed.
But in the roughly 30 percent of patients who develop chronic pain, nerve cells rewire themselves before healing, which can cause them to fire at random, months after the injury is gone.
Price’s research focuses on this “rewiring” process, called “neuroplasticity.” It’s the idea that the nervous system can “rewire” itself throughout our lives to help us adapt to our surroundings.
“We were originally looking at how brains learn. We had this idea that pain is a learning phenomenon, too. Synaptic plasticity, or the cellular process of learning, is common to things that are beneficial and things that aren’t.”
There are some really complex genetic factors at play,” Price says, “but it really is a plasticity disease.”
Chronic pain, like opioid abuse, is often stigmatized. Price argues it’s not as important to try and quantify pain as it is to treat it more effectively. Chronic pain often affects every aspect of people’s lives. In that sense, the chronic pain epidemic and the opioid crises are one and the same.
“There’s no question that opioids are effective for acute pain,” Price says, “but the issue that we have right now is that the drugs that we have to treat chronic pain don’t work very well and the drugs that are efficacious are incredibly dangerous.”
While opioids are still often necessary after surgeries, Price says there’s evidence that they may actually increase the likelihood of chronic pain after surgery.
“We need to have better, non-addictive therapeutics that are not only going to treat acute pain but also prevent the development of chronic pain,” he says. “When you take a drug more frequently over time, it requires a larger dose to achieve the same efficacy. This will actually happen in almost everyone taking opioids.”
Tolerance is most problematic when people begin taking opioids again after a period without, Price says. Many chronic pain patients experience pain after a long period following surgery. They may take what used to be their normal dose of opioids. In many cases, this dose is enough to induce an overdose, as they may have lost their tolerance, he says.
There is no cure yet. But Price says that science is very mature.
The leap from preliminary research to clinical trials is difficult to navigate for many scientists, especially those in an academic setting. So Price, and many researchers like him, are starting their own companies to try and bring their research into realization on their own.
“If … there is one thing I try to convey to [my colleagues] … there really isn’t anybody else who is going to be quite as passionate about [turning] your ideas into medications as you are. […] It’s a steep learning curve … but it’s very exciting and extraordinarily rewarding.”
I would argue [we’re] completely failing in trying to treat this,” Price says. “There are some interesting treatments [for migraines] which may be approved by the FDA this year, but we need to see successes like this across the board.”
Price stresses the need to conduct clinical trials as early as safely possible so researchers don’t waste time on disproved hypotheses and patients can get treatments sooner. Price points to McGill University, in Montreal, as a good example. He attributes the success of the Canadian university to its emphasis on collaboration between basic science researchers and clinical trial labs.
Treating chronic pain takes a multimodal approach, Price says. Treatments should go beyond painkillers and other medications; for example, exercise, whenever possible, can help dramatically. Managing pain, much like managing an epidemic, requires creativity and collaboration.
