Researchers Discover ‘Brain Signature’ for Fibromyalgia

By Pat Anson, Editor

Researchers at the University of Colorado Boulder have discovered a “brain signature” that identifies fibromyalgia with 93 percent accuracy, a potential breakthrough in the diagnosis and treatment of a chronic pain condition that five million Americans suffer from.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, headaches, fatigue, anxiety, depression and insomnia. The cause of fibromyalgia is unknown and there is no universally accepted way to diagnose or treat it.

The CU Boulder researchers used MRI scans to study brain activity in a group of 37 fibromyalgia patients and 35 control patients, who were exposed to a series of painful and non-painful sensations.

The researchers were able to identify three neurological patterns in the brain that correlated with the pain hypersensitivity typically experienced with fibromyalgia.

UNIVERSITY OF COLORADO BOULDER

"The potential for brain measures like the ones we developed here is that they can tell us something about the particular brain abnormalities that drive an individual's suffering. That can help us both recognize fibromyalgia for what it is - a disorder of the central nervous system - and treat it more effectively," said Tor Wager, director of CU Boulder’s Cognitive and Affective Control Laboratory.

If replicated in future studies, the findings could lead to a new method to diagnosis fibromyalgia with MRI brain scans. Patients who suffer from fibromyalgia have long complained that they are not taken seriously and have to visit multiple doctors to get a diagnosis.

"The novelty of this study is that it provides potential neuroimaging-based tools that can be used with new patients to inform about the degree of certain neural pathology underlying their pain symptoms," said Marina López-Solà, a post-doctoral researcher at CU Boulder and lead author of a study published in the journal Pain. "This is a helpful first step that builds off of other important previous work and is a natural step in the evolution of our understanding of fibromyalgia as a brain disorder."

One patient advocate calls the use of MRI brain scans a breakthrough in fibromyalgia research.

"New cutting-edge neurological imaging used by CU Boulder researchers advances fibromyalgia research by light years," said Jan Chambers, founder of the National Fibromyalgia & Chronic Pain Association. "It allows scientists to see in real time what is happening in the brains of people with fibromyalgia. 

"In fibromyalgia, the misfiring and irregular engagement of different parts of the brain to process normal sensory stimuli like light, sound, pressure, temperature and odor, results in pain, flu-like sensations or other symptoms.  Research also shows that irregular activity in the peripheral nervous system may be ramping up the central nervous system (brain and spinal cord).  So the effect is like a loop of maladjustment going back and forth while the brain is trying to find a balance.  This extra brain work can be exhausting." 

The theory that fibromyalgia is a neurological disorder in the brain is not accepted by all. Other experts contend it is an autoimmune disorder or even a “symptom cluster” caused by multiple chronic pain conditions. And some doctors still refuse to accept fibromyalgia as a disease.

One company has already developed a diagnostic test for fibromyalgia – and it’s not a brain scan. EpicGenetics has a blood test that looks for protein molecules produced by white blood cells. Fibromyalgia patients have fewer of these molecules than healthy people and have weaker immune systems, according to the founder of EpicGenetics. But critics have called the blood test “junk science” that is backed up by little research.

A Pained Life: Show and Tell

By Carol Levy, Columnist

I’ve written before about Susanne Main’s Exhibiting Pain research project --- which looked at creative ways to express the chronic pain experience. I was happy to contribute a picture that conveys how quickly pain from trigeminal neuralgia can strike.

The Exhibiting Pain project recently ended, but before closing participants were asked if they had ideas for more research or collections.

My thoughts on the question turned to my own experience trying to get a diagnosis and help for my facial and eye pain.

Because of an insurance issue I had to go to a hospital clinic for over a year. Every visit was the same. I saw a medical resident, sometimes the same person, sometimes not. Regardless, the visit always followed the same script.

“I have terrible pain in my face,” I would say, while pointing a finger towards my face and drawing a circle around the painful area. Because of the horrendous pain triggered by any touch, I made sure not to come in contact with the skin.

The resident would look at me. Then he would shrug his shoulders or shake his head.

“I don't know what you have,” he’d say. “Maybe it's psychological.”

Other residents were dumbfounded and would send me home with a verbal pat on the head. I literally had to cry during a phone call with one resident before I was finally prescribed pain medication.

As many times as I showed up for my appointments, at least once a month, sometimes more, I would always say the same thing: “This is where the pain is.”

My finger never varied from the circle I drew the first time they saw me, and their answer never varied: “I don't know what you have.”

One evening I finally got a diagnosis. The only problem was it came while I was on a date with one of the ophthalmology residents. We were touching. My date lifted his hand and brought it up towards the left side of my face.

I yelled out: “Don't touch me there! You’ll set off the pain.”

He looked at me with a strange expression. “Exactly where is the pain?” he asked.

I mapped out the same area for him that I had at the clinic, for him and all the other doctors I had seen.

He sat up and stared at me.

"I know what you have. You have trigeminal neuralgia.”

It was surreal. His diagnosis was horrendous and scary. And we were on a date for goodness sakes. Why now? Why not tell me that in the clinic?

I never varied in the area I indicated and described, no matter how many times and how many doctors I saw.  For some unknown reason, it was apparently ignored. I would later learn the area I showed them was the exact anatomical map of 2 parts of the trigeminal nerve. In fact, I was a textbook case.  So why did they ignore me?

That I can't answer. But Susanne Main's work has led me to a conclusion: What if doctors asked to see a drawing of where the pain is located and how it feels? Would they be so quick to dismiss it, to not hear what we are trying to tell them?

Maybe the visual is what is necessary to open their eyes. And their ears.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Wheat Protein Could Worsen Chronic Illness

By Pat Anson, Editor

Gluten isn’t the only reason why some people should avoid eating wheat.

German researchers have discovered a second protein in wheat that triggers inflammation and worsen symptoms of multiple sclerosis, lupus, rheumatoid arthritis and other chronic illnesses. The finding could help explain why some people who are not gluten intolerant and do not have celiac disease still benefit from going on a gluten-free diet.

Researchers say a family of proteins called amylase-trypsin inhibitors (ATIs) make up only about 4% of the protein found in wheat. But they can trigger powerful immune system reactions outside the digestive system, in the lymph nodes, kidneys, spleen and brain.

"As well as contributing to the development of bowel-related inflammatory conditions, we believe that ATIs can promote inflammation of other immune-related chronic conditions outside of the bowel,” said lead researcher, Professor Detlef Schuppan of Johannes Gutenberg University.

“The type of gut inflammation seen in non-celiac gluten sensitivity differs from that caused by celiac disease, and we do not believe that this is triggered by gluten proteins. Instead, we demonstrated that ATIs from wheat, that are also contaminating commercial gluten, activate specific types of immune cells in the gut and other tissues, thereby potentially worsening the symptoms of pre-existing inflammatory illnesses.”

Schuppan presented his findings at United European Gastroenterology Week. He said future clinical studies will explore the role that ATIs play on chronic health conditions in more detail.

"We are hoping that this research can lead us towards being able to recommend an ATI-free diet to help treat a variety of potentially serious immunological disorders," said Schuppan.

Celiac disease is a gastrointestinal inflammation caused by the ingestion of wheat, barley, rye, and other foods containing gluten. About 1-2% of the population has celiac disease, but most cases go undiagnosed and untreated.

People with non-celiac gluten sensitivity (NCGS) may also develop gastrointestinal symptoms, as well as headaches, chronic fatigue, fibromyalgia and allergies. Abdominal pain and irregular bowel movements are frequently reported with NCGS, which can make it difficult to distinguish from irritable bowel syndrome (IBS).

The symptoms typically appear after the consumption of gluten-containing food and improve rapidly on a gluten-free diet, even though gluten does not appear to cause the condition. Schuppan says the real culprit may be ATIs.

"Rather than non-celiac gluten sensitivity, which implies that gluten solitarily causes the inflammation, a more precise name for the disease should be considered," he said.

Trump and Clinton Pursue Same Policies in Pain Care

By Pat Anson, Editor

Chronic pain patients hoping for a dramatic change in federal pain care policies as a result of the presidential election are likely to be disappointed.

Both Donald Trump and Hillary Clinton favor more restrictions on opioid prescribing, as well as expanded access to addiction treatment programs, which are essentially the same policies being pursued by the Obama administration.

At a rally in New Hampshire this weekend, Trump outlined for the first time his strategy to combat the nation’s so-called opioid epidemic.

“DEA should reduce the amount of Schedule II opioids -- drugs like oxycodone, methadone and fentanyl -- that can be made and sold in the U.S. We have 5 percent of the world’s population, but use 80 percent of the prescription opioids,” Trump said in prepared remarks.

“I would also restore accountability to our Veterans Administration. Too many of our brave veterans have been prescribed these dangerous and addictive drugs by a VA that should have been paying them better attention.”

Trump said the Food and Drug Administration has been “too slow” in approving opioid pain medication with abuse deterrent formulas. And he said he would “lift the cap” on the number of patients that a doctor can treat with addiction treatment drugs.

donald trump

But the Republican nominee seemed confused about the difference between abuse deterrent formulas and addiction treatment drugs like buprenorphine (Suboxone).

"The FDA has been far too slow to approve abuse-deterring drugs. And when the FDA has approved these medications, the rules have been far too restrictive, severely limiting the number of authorized prescribers as well as the number of patients each doctor can treat," he said.

There are no limits on doctors for prescribing abuse deterrent drugs, but there are for the buprenorphine. In August, the Obama administration nearly tripled the number of patients that a doctor can treat with buprenorphine.

Trump also seemed unaware that the DEA recently said it would reduce the production quota for many opioids by 25 percent or more.

Trump claimed the Obama administration has worsened the nation’s drug problem by commuting the sentences of drug traffickers and by releasing “tens of thousands” of drug dealers early from prison. He also pledged to stop the flow of illegal drugs into the country.

“We will close the shipping loopholes that China and others are exploiting to send dangerous drugs across our borders in the hands of our own postal service. These traffickers use loopholes in the Postal Service to mail fentanyl and other drugs to users and dealers in the U.S.” said Trump.

“When I won the New Hampshire primary, I promised the people of New Hampshire that I would stop drugs from pouring into your communities. I am now doubling-down on that promise, and can guarantee you – we will not only stop the drugs from pouring in, but we will help all of those people so seriously addicted get the assistance they need to unchain themselves.”

Like Trump, Hillary Clinton has also promised to expand access to addiction treatment, but in more detail. Her Initiative to Combat America's Deadly Epidemic of Drug and Alcohol Addiction would allocate $10 billion in block grants to states to help fund substance abuse programs.  

Clinton also wants doctors to undergo training in opioid prescribing before they are licensed to practice and to require that they consult prescription drug databases before writing prescriptions for controlled substances.

One area where Clinton differs with Trump is that she puts less emphasis on law enforcement. Saying she wants to “end the era of mass incarceration,” Clinton has called for low-level drug offenders to get treatment and not just be locked up.

“For those who commit low-level, nonviolent drug offenses, I will reorient our federal criminal justice resources away from more incarceration and toward treatment and rehabilitation. Many states are already charting this course — I will challenge the rest to do the same,” Clinton wrote in an op/ed published in the New Hampshire Union Leader.

hillary clinton

In their public statements, neither Trump or Clinton have given any indication that they believe that  federal policies affecting pain care, such as the CDC’s opioid prescribing guidelines, have gone too far. If anything, they want to go further.

Clinton has endorsed a proposed tax on opioid pain medication sponsored by West Virginia Sen. Joe Manchin (D). If approved, the so-called Lifeboat Act would raise $2 billion annually to fund addiction treatment programs. The tax would be the first federal tax on a prescription drug ever levied on consumers.  

During a roundtable discussion about opioid overdoses in West Virginia, Clinton called the tax “a great idea” and said it was “one of the reasons why I am such an admirer of Sen. Manchin.”

Pain News Network has asked the Trump campaign where the Republican nominee stood on the opioid tax. We have yet to get a response.

Tips for Managing Your Meds

By Barby Ingle, Columnist

When it comes to managing medication, the more you know about your medical condition the better equipped you’ll be to understand which drugs to take, the side effects to watch for, and when to take them. It is also a great idea for your caregiver to know.

There are many times when I am not doing well and my husband will say, “You seem dizzy. Have you taken XXX yet? When was the last time you took it?”

Or he’ll say, “We are going to go out later to get groceries, so take your pill now so you won’t be sleepy when we go and you will be more comfortable.”

Having someone there to help me is great, because sometimes I feel so awful that I cannot remember to take my medication or even what I have taken. I have overdosed on different medications a few times because I forgot I had already taken a dose.

Here are some tips I’ve learned to manage my medications safely:

1)  Use a pill organizer to keep track of your medications. I have a pill box for a two week supply separated into morning and night pills.

2)  Keep medications without childproof caps away from children or lock them up, especially if you have opioid pain medications.

3)  Take your pills at the same time each day, especially when medications are time-released versions. This helps to keep the level of medication consistent in your body.

4)  Know why you are taking each medication, how best to take them (before or after eating), and any side effects that you may experience. Find out what your doctor wants you to do for each medication and verify it with your pharmacist.

5)  Be sure to never break or split time-release pills. Breaking the seal can be very dangerous as your body can receive the dose of the whole pill too quickly and it can become deadly.

6)  Carry a list of your medications and doses at all times in your purse or wallet. You should also update your pharmacy records to include all of the drugs that you take, including any over-the-counter medications. I use Walgreen's and they have a great online site that allows me to update it from home.

7)  Do not drive under the influence of medication that affects your cognitive thinking. It is also a good idea not to drive while taking medications that cause drowsiness or when you are distracted by pain.

8)  If a medication is making you sick or causing side effects that you cannot tolerate, talk to your physician about adjusting the dose or changing the medication. If side effects include trouble breathing, a rash or more severe symptoms, head to a local emergency room for immediate assistance.

9)  Read prescription labels and inserts carefully. They contain important information such as the medication’s name, dosage, prescribing doctor, and expiration dates. This can help you avoid taking a medication for too long or having adverse effects from long-term use.

10)  If you are a drinker, be sure to discuss with your provider or pharmacist if it is safe to drink with any of the prescriptions or over-the-counter medications you are taking.

11)  If you have more than one doctor prescribing medications, be sure to tell all of them what you are taking, so they can be alert to possible interactions and complications. I had to do this for myself and have not had these issues since.

12)  If you decide you no longer want to continue a medication, get your provider’s guidance before you stop taking it. Some medications can be stopped immediately, but many require you to titrate or taper off them.

13)  If you discontinue a medication, be sure to dispose of it properly and immediately. You should also dispose of medication once the expiration date has passed. The FDA has a list of disposal recommendations you can see by clicking here.

Some medications such as inhalants have hazardous material disposal requirements. Follow the specific disposal instructions on the drug label. If no instructions are given, you can crush and mix medications with coffee grounds, cat litter, or food scraps. Then seal them in a bag or a container (such as a margarine tub or jar) and discard them in the regular trash.

Many pharmacies and law enforcement agencies have “Drug Take Back” events that you can participate in. Find out more from your local pharmacist or police station.

Following these tips will keep you, your loved ones and your community safer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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.

A First Time User Says Kratom Works

By Fred Kaeser, Guest Columnist

Like many of you, I have been following closely all of the kratom related articles here at PNN over the past month.

Prior to these articles, I had heard the name kratom several times in various readers' comments, but quite frankly I had no idea what kratom actually is. But all that has changed and it changed very quickly.

Truthfully, I was dumbstruck by the many comments praising the supposed wonderful pain reducing qualities of kratom. And when I read the results of PNN's kratom survey, I was convinced to explore as much information as I could about this leaf.

Admittedly, the kratom survey was very far from scientifically valid, but the results were astonishing to me. Virtually every one of the 6,000 or so respondents claimed this leaf to be a miracle worker. Not just for pain, but for various emotional and mental illnesses, and for opioid and even alcohol withdrawal. The more I read and researched the kratom leaf the more tempted I was to try it.

I have been in severe, daily pain close to ten years now. Those who have read my previous columns here at PNN, including my comments to others' articles, know that I am prescribed opioids for my pain. They also know that I am concerned about the various risks associated with my opioid use, and also know that I am a huge supporter of complementary and alternative pain therapies. 

I respect and am very appreciative of my opioid prescription. Without question, opioids reduce my level of pain and for that I am thankful. But I am also cognizant of the risks, especially the risk for developing a physical dependence to these medications, and consequently I am always trying to minimize just how often I must take my opioids.

FRED KAESER

So, it was easy for me to segue into trying something new to ameliorate my pain. And kratom seemed to fit the bill.

Even with the risk of a kratom ban, I was able to find an online purveyor who was still selling and who I had heard mentioned was a reliable vendor by many commenters on a number of kratom websites. I bought the Maeng Da strain as that seemed to be the best choice for me. I bought the type that is finely crushed and kind of flour-like in consistency. It wasn't too expensive.

Based upon what I had read, as a novice to the leaf, I started with slightly less than a teaspoon in the morning (about 2 grams). I dumped it into some water, swished it around, and chugged it. Some residue was left, so I added some more water, and down it went. Pretty bitter, gritty and crappy tasting. But, truth be told, it was not much worse than the powdered green vegetable supplement I take every day. Kind of like eating bitter, dried grass.

About 30 minutes later I was feeling some energy, an up-lift, and within fifteen minutes more my pain was reducing. I've been taking kratom for a bit more than a one week now and I have since reworked my dose to about 4 grams. This dose does the job for about 6 hours. My pain is still there but is dramatically reduced, and I feel an increase in energy as well. 

I've read about some of the risks associated with kratom, so I've resisted taking a second dose during the day. And after taking it for 3 days in a row I am now taking it every other day. If I was to do a second dose I would keep it to an additional 2 grams, but haven't gone there yet. 

My take is it works as well as an oxycodone 10mg. Kratom works as a wonderful compliment to the alternative pain therapies I utilize and I have not taken it on any day that I do my opioid medication. I am a little concerned about doing kratom every day, as there are stories about developing dependence.

I still have more to learn about kratom. But I definitely see it being as effective as the opioid medication I take. I have even been able to reduce that medication somewhat in just the time I've been using the kratom. I'll see how things progress and I will continue to research and learn more about this leaf.

I can see though that it does the job. I am tempted to give up the opioids and just do kratom, but I'm not there yet. I know what I'm dealing with when it comes to the opioids and I'm still too ignorant about kratom. 

If you have pain, you might want to give kratom a try. It's still early, but I am pretty impressed by what it is able to do.

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He suffers from osteoarthritis, stenosis, spondylosis and other chronic spinal problems.

Fred taught at New York University and is the author of What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

DEA Withdraws Plan to Ban Kratom

By Pat Anson, Editor

Facing opposition from the public and some members of Congress, the U.S. Drug Enforcement Administration has withdrawn plans to classify two of the active ingredients in kratom as Schedule I controlled substances, a move that would have made the sale and possession of the herb a felony.

“DEA has received numerous comments from members of the public challenging the scheduling action and requesting that the agency consider those comments and accompanying information before taking further action,” the DEA said in a notice published in the Federal Register.

“DEA is therefore taking the following actions: DEA is withdrawing the August 31, 2016 notice of intent; and soliciting comments from the public regarding the scheduling of mitragynine and 7-hydroxymitragynine under the Controlled Substances Act.” 

Mitragynine and 7-hydroxymitragynine are alkaloids in kratom that appear to act on opioid receptors in the brain. They are not approved for any medical use in the United States, even though millions of kratom consumers use the the herb to manage pain, anxiety, depression, addiction and other medical conditions.

The unprecedented decision to withdraw the scheduling of a controlled substance does not end the possibility that kratom will be banned. The DEA said it would re-evaluate its decision after the public comment period ends on December 1, 2016. The agency will also ask the Food and Drug Administration to expedite a full scientific and medical evaluation of kratom.

“DEA will consider all public comments received under the above procedures, as well as FDA’s scientific and medical evaluation and scheduling recommendation for these substances.  Once DEA has received and considered all of this information, DEA will decide whether to proceed with permanent scheduling of mitragynine and 7-hydroxymitragynine , or both permanent and temporary scheduling of these substances,” the agency said in its announcement.

If the DEA decides to schedule kratom permanently, the agency said it would publish a new notice in the Federal Register and allow for a second public comment period. Under the original emergency scheduling notice published on August 30, there was no public notice or comment period.

“We moved a mountain and now we’re parting the sea!!! Keep the pressure on; wait for commenting instructions please, we still have A LOT of work ahead of us,” wrote Susan Ash, founder of the American Kratom Association (AKA) in a note to supporters on Facebook.

“I think what this clearly shows is that there is no imminent public health threat or they wouldn’t be adding on a 6 week public comment process and putting it back on the FDA,” Ash told PNN.

She said her organization would resist any effort to classify kratom in a less restrictive category than Schedule I, which is how marijuana, LSD and heroin are classified. At present. there are no federal limits on kratom as a dietary supplement, although it is banned in a handful of states.

"We still believe it should not be scheduled in any way, shape or form. It's been consumed safely here for decades and worldwide for a millennium, so there's really no impetus to make it a controlled substance, period," said Ash.

In its initial attempt to ban kratom -- which comes from the leaves of a tree in Southeast Asia -- the DEA said the herb had “psychoactive effects” and was linked to dozens of overdose deaths.

In reaching that assessment, the agency relied primarily on the research and advice of the FDA and the Centers for Disease Control and Prevention.  Critics, however, say much of that research was deeply flawed and unreliable. For example, a recent CDC report claimed kratom was “an emerging public health threat” and cited two published research reports that “associated kratom exposure with psychosis, seizures, and deaths.”

Those two reports, however, make no mention of deaths caused by kratom. The CDC also relied on a newspaper article to help document one kratom-related death, even though it was actually caused by a self-inflicted gunshot wound.

"Nowhere does DEA rely on the scientific, epidemiological, and public health sources that normally undergird the assertion that a substance poses a high potential for abuse, let alone an imminent public health threat,” lawyers for the AKA said in a letter to DEA acting administrator Chuck Rosenberg.

To overturn the ban, the AKA enlisted the help of over 60 members of Congress, who signed letters urging the DEA to delay scheduling kratom and to solicit more public input. Over 142,000 kratom supporters also signed a White House petition asking the Obama administration to postpone the scheduling.

"I think the DEA was pressured so much by Congress, the public and by the media that they realized that they didn't really have the proof and the science to emergency schedule this," Ash said. "It put the DEA in a really difficult position and now the DEA is just trying to admit the fact that they don't have what they need to call this a public health threat."

In a survey of over 6,000 kratom consumers by Pain News Network and the AKA, nine out of ten said kratom was a “very effective” treatment for pain, depression, anxiety, insomnia, opioid addiction and alcoholism. Many also predicted that banning the herb would only lead to more drug abuse, addiction and death.

"The DEA missed the mark here and it would be a gross miscarriage of due process to simply tell millions of American consumers and the legal businesses that serve them that they are now felons,” said Travis Lowin of the Botanical Education Alliance in a statement before the DEA reversed its decision. 

“The DEA has a strict set of rules it is supposed to follow for an emergency scheduling of a drug and kratom meets none of those tests.  There are reasonable limits on the power of what government can do precisely to avoid situations like this where legal consumer conduct and legitimate free enterprise would otherwise be crushed overnight by indiscriminate use of the power of government."

Chronic Pain Patients to Rally at White House

By Pat Anson, Editor

Only a few months are left in the Obama administration -- and much of the nation’s attention is focused on the bruising battle between Hillary Clinton and Donald Trump over who will be the next president.

But some activists in the pain community are determined to make some noise of their own. They’re planning to hold a Rally Against Pain on the Ellipse south of the White House on Saturday, October 22.

The goal is to draw attention to the millions of chronic pain sufferers who are losing access to opioid pain medication because of a series of actions by the Obama administration to restrict opioid prescribing as a way to fight the national epidemic of drug abuse and addiction.

“We kind of feel like it was this administration that made this mess,” says Lana Kirby, a Florida paralegal, chronic pain sufferer and patient advocate who organized the rally.

“I mean the harm that is happening every single day. For them to let it go and know that it’s going on, to let it go anyway and leave it for the next administration, that’s not the right thing to do.”

Since the Centers for Disease Control and Prevention released it opioid prescribing guidelines in March, Kirby says many patients she counsels in support groups have had their doses reduced or cutoff entirely. Some have been abandoned by physicians who are no longer willing to treat pain patients because they fear harassment or prosecution for prescribing opioids.   

“It’s just one story after another. You can’t really offer these people any hope or help,” says Kirby. “Just about everybody I know in at least 50 percent of the states have either had their medicine discontinued or cut back to minimal levels.

“The way things keep going with all these restrictions, you wonder where it is going to end and what their overall plan is.”

The biggest jolt to the pain community may be yet to come. The Drug Enforcement Administration recently announced plans to reduce the production of hydrocodone, oxycodone and many other opioids by 25 percent or more in 2017. As PNN has reported, some experts in hospice care are worried the cuts could be so severe that terminally ill patients may not be able to get the pain medication they need.

Publicly, the DEA claims the cuts are necessary because of declining demand for opioids. But patient advocates say the real decline is in opioid prescribing -- not in demand -- and the administration is ignoring the impact its policies are having on pain sufferers.

“They only tell you what they want the public to hear because they want the general public to be against opioids of any kind. And they’re doing it very successfully,” says Kirby.

“No other president in American history has done more to destroy the hopes, lives and natural rights of people in pain then President Obama and his administration,” says David Becker, a social worker and patient advocate who will be one of the speakers at the October 22 rally.

“The FDA, CDC, DEA, and DHHS have made it clear that we are not qualified to have an opinion about pain care or our own good. They are as tyrannical as any despot ever was,” adds Becker. “The people involved with the Rally Against Pain are feeling the moral shock that leads to social movements and social movement organizations. We stand with Lincoln in knowing that silence is sin when protest is needed.”

Kirby is expecting about 300 protestors to appear at the rally – a small number compared to the estimated 100 million Americans who suffer from chronic pain. She says many supporters who want to attend are disabled or in too much pain to make the trip.

The rally was organized by volunteers through Facebook and other social media without the participation of well-funded advocacy groups like the U.S. Pain Foundation and the American Chronic Pain Association. Even so, it could turn out to be largest protest ever held by pain patients.

Kirby says she didn’t want to hold the rally next year -- after the new administration takes office -- because too many pain patients are suffering or even suicidal.

“More people will be gone by then. More people will not be functioning. Things are only going to get worse. If we don’t do something and get some attention right away, things are going to be very bad,” she said.

For more information about the rally and how you can participate, click here.

Kratom Vendors File Lawsuit Against Feds

By Pat Anson, Editor

Four kava bar owners in South Florida – one of them a retired police officer – have filed a federal lawsuit against the U.S. Department of Justice over its threated ban on kratom.

Named as co-defendants are Attorney General Loretta Lynch and Chuck Rosenberg, the acting administrator of the Drug Enforcement Administration.

The lawsuit, first reported by New Times Broward Palm Beach , was filed by Michael Dombrowksi, who owns the Tenaga Kava bar in Palm Beach Gardens.  Dombrowski says his business relies on kratom tea sales and he risked losing a million dollars in revenue if the DEA carried out plans to list two of the active ingredients in kratom  as Schedule I controlled substances.

“Plaintiff business relies primarily on kratom tea sales, as do 9 other kava and tea lounges where consumers purchase and rely upon kratom tea for a variety of claims from medicinal value to relaxation,” the lawsuit states. 

“Defendant will lose all of his investment in the creation of his business in 2015 including the bulk of his law enforcement retirement and the loss of his livelihood which he planned for his happy retirement.”

Listed as co-plaintiffs in the lawsuit are James Scianno of the Purple Lotus Kava Bar in Boynton Beach and Keith Engelhardt and Thomas Harrison of Kavasutra in West Palm Beach. 

The lawsuit, filed in U.S. District Court in West Palm Beach, seeks an emergency injunction to prevent the scheduling of kratom, along with punitive damages of $14 million.

The lawsuit was filed on September 30, the same day the DEA could have made the sale and possession of kratom a felony by putting it in the same class of controlled substances as heroin, LSD and marijuana.. The agency delayed the scheduling after a backlash from kratom consumers and some members of Congress, who urged the DEA to seek public comment on its ruling.

The DEA claims kratom, which comes from the leaves of a tree in Southeast Asia, has a high potential for abuse because of its “psychoactive effects” and that imported kratom products are “routinely misdeclared and falsely labelled.”

Kratom is usually sold as dried or crushed leaves, powder, capsules, and tablets. Some kava bars, like the ones in Florida, brew kratom leaves with kava root to make a strong tea. In 2013, a lawsuit was filed against the owners of the Purple Lotus bar for not disclosing that the tea contained kratom. The plaintiff in that suit – a recovering alcoholic -- claimed she became addicted to kratom tea.

Kratom supporters say the herb is no more addictive than caffeine and helps treat symptoms of chronic pain, anxiety, depression and addiction.

The VA’s Opioid Policy Hurts Veterans Like Me

(Editor’s note: In 2015, Congress passed and President Obama signed into law legislation that requires the Veterans Administration to adopt the CDC’s “voluntary” opioid guidelines, which discourage the prescribing of opioids for chronic pain. Over the past year, the VA has implemented the guidelines throughout its healthcare system, which provides medical services to 6 million veterans -- over half of whom suffer from chronic pain. One of them is Ron Pence.)

By Ron Pence, Guest Columnist

I am a Vietnam veteran who turned to the VA health system in 2001, when I started having pain from polymyositis and chronic arthritis, the worst kind of arthritis caused by autoimmune disease. My own body was attacking my joints and muscles. They said CPK enzyme levels in my blood were very high and in danger of shutting down my kidneys.

Back then the VA cared about vets. I was started on pain meds and they moved me up the ladder as the pain increased.

The head of rheumatology started me on morphine because he said it was the only drug he had to offer. He was right. After 3 pain management visits, 3 more doctors agreed I was on the correct needed dose. X rays of the arthritis in my back ruled out chiropractic care.

I was on the same dose of morphine for 9 years. It worked well enough for me to function and to live alone. The VA promised to continue my opiate therapy as long as I did not break their rules.

After 5 years or so they came out with a new contract and forced us to sign it. I was told either sign it or you don’t gets your meds. I was never accused of breaking their rules and never have. I pointed out the new contract was totally in favor of the VA doing as they please and was signed under duress.

RON PENCE

Now out of the clear blue they cut my dose in half over two months and they may cut it completely because I refuse to take terrible and dangerous psychiatric drugs with the worst side effects. Just search the Internet for “Cymbalta side effects” and you’ll see what I mean.

The VA is really pushing these drugs that I would not give to a dog. They are a lobotomy in a pill. I WILL DIE BEFORE TAKING THEM. They take away your ability to think, speak and make decisions; and come with side effects such as permanent blindness, kidney stones and suicide, even in non-depressed people with no mental problems. Even trying to get off this drug under a doctor's care can end in death for some people. Besides that, it’s nothing more than a sugar pill for the pain.

Why start something like that when what I was taking had no side effects for me and was working fine? I am sure the pills they are pushing will end in a lot more deaths and terrible disabilities and suffering.

My companion almost died after taking Enbril. The VA doctors write prescriptions for Enbril, Humira, etc. as if they were candy. Four shots a month cost $2,000. Far more dangerous than opiates, but someone lines their pockets and the drug companies make over $10 billion a year on them. There is more here than meets the eye.

The CDC in Atlanta says their opioid prescribing guidelines are just that, guidelines. Doctors at the VA must not be smart enough to know what a guideline is. They’re pushing very dangerous, expensive and destructive drugs to replace opioids. Pray and try to find a substitute that works. Doctors sit and lie about what the guidelines say. The stress of not knowing if you are going to be cut off completely is as bad as the pain.

Since the big cutback in my pain medication, I am far less functional. Just standing up 30 seconds to snatch my clothes out of the washer puts me in hollering pain and I fall back into my wheelchair. Cutting the meds even makes it hard to get on the toilet. I am 70 and live alone. My family brings me food to keep me from starving most of the time. I have lost over 90 pounds.

This is going to mean the nursing home for a lot of people like me and I cannot stand the thought of living or existing in a nursing home. Karma is going to get a lot of people making these bad decisions.

I don’t take complaints to Washington because I am old and an 8 mile trip to Walmart wipes me out for a couple of days. This is a fight for the younger guys.

We are in one of the most advanced countries in the world medically, yet the doctors and politicians will not use that knowledge to ease pain and suffering. We have to find a solution.

Ron Pence lives in Florida. Ron enlisted in the Air Force in 1963 – at the age of 17 -- and served his country for 6 years.

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.

Critics Say Fed Kratom Research Flawed

By Pat Anson, Editor

The U.S. Drug Enforcement Administration and the Centers for Disease Control and Prevention relied on flawed and unreliable research – some of it based on a newspaper article -- to build a case against the herbal supplement kratom, according to lawyers hired by the American Kratom Association (AKA).

The DEA cited a CDC report claiming that “deaths have been attributed to kratom” when it announced plans for the emergency scheduling of two active ingredients in kratom as Schedule I controlled substances, a move that would make the sale and possession of the herb a felony. 

Kratom, which comes from the leaves of a tree that grows in Southeast Asia, is used by millions of Americans in teas and supplements to treat chronic pain, anxiety, depression, addiction and other medical problems.

“AKA takes very seriously DEA’s concern that approximately 30 reports of fatalities have been linked to consumers who had ingested or possessed a kratom product. However, a close examination of these reports shows that there are no instances in which kratom itself was determined to be responsible for the cause of death,” wrote lawyers David Fox and Lynn Mehler, in a letter to DEA acting administrator Chuck Rosenberg.

“There is good reason to question whether these reports indeed represent a valid or meaningful signal with respect to kratom. Close review of the totality of evidence points clearly in the other direction, namely, that kratom is well tolerated and relatively mild in its effects.”

Fox and Mehler are partners in the Los Angeles-based law firm of Hogan Lovells, which was hired by the AKA, an organization of kratom consumers that receives some of its funding from kratom vendors.

In their 35-page letter to Rosenberg, Fox and Mehler said much of the evidence used by DEA to justify the emergency scheduling was “fundamentally flawed” because it relies on reports that “are inadequate and unreliable.”

In the emergency scheduling notice published in the Federal Register, DEA cited a July 2016 report from the CDC that claimed kratom was “an emerging public health threat.” The CDC said kratom related calls to U.S. poison control centers rose from 26 calls in 2010 to 263 in 2015 – a total of 660 calls over a six year period.

Fox and Mehler said that pales in comparison to the number of calls to poison centers received about other common household items, including caffeine (23,303 calls in 6 years) and essential oils (66,300 calls).

The CDC report also cited two published research reports that “associated kratom exposure with psychosis, seizures, and deaths.”

“The CDC publication appears to have either misidentified its sources or been mistaken in its conclusions, as both sources reported no deaths from kratom,” wrote Fox and Mehler. “Likewise, the CDC report also stated that ‘deaths have been attributed to kratom in the United States,’ but it cited for that proposition a single report in a newspaper article. The newspaper article reported the suicide of a 22-year old male by self-inflicted gunshot wound.”

The assertion that CDC research is faulty is not a new one. Similar complaints were raised about the weak evidence used by CDC to justify its guidelines for opioid prescribing. Critics have also faulted the agency for “incomplete and biased” reports about the risks associated with opioid pain medication, and misleading reports about the number of deaths caused by prescription opioids.

“Nowhere does DEA rely on the scientific, epidemiological, and public health sources that normally undergird the assertion that a substance poses a high potential for abuse, let alone an imminent public health threat,” said Fox and Mehler. “The proposed use of the emergency scheduling provisions in this case is unprecedented, contrary to the law and public interest, violates fundamental principles of regulatory procedure, and implicates serious constitutional questions.”

The DEA has not publicly responded to the AKA letter. The agency could have classified kratom as a Schedule I controlled substance on September 30, but caved into political pressure from some members of Congress to leave the legal status of the herb unchanged for the time being. 

Under the DEA’s emergency scheduling order, no public notice or comment period was allowed. But according to Wisconsin Rep. Mark Pocan’s office, the agency will allow for a “modified comment process” about the scheduling of kratom, although that has not yet been confirmed by the agency.

Kratom activists believe the DEA will announce its decision soon.

“We’ve heard through the grapevine that as early as Tuesday, the DEA is going to be making an announcement about where they go from notice of intent to saying that they’re going to allow for a public comment process,” said Susan Ash, founder of AKA.

“Our concern is that it will be a very brief amount of time to be able to get enough comments from the scientific community, the medical community and the public at large to really have an impact on this decision. So the question is this just an attempt to save face by the DEA when they still have full intent of banning it? Or are they really going to be opening up a true comment process?”

In a survey of over 6,000 kratom consumers by Pain News Network and the American Kratom Association, over 95 percent said banning the herb would have a harmful effect on society. Many predicted it would lead to more addiction and illegal drug abuse.     

Keeping Kids Safe from Medical Marijuana

By Ellen Lenox Smith, Columnist

Frequently, someone will mention to me that they want to medicate with cannabis but won’t even consider trying it due to their children living in the house.

I can certainly understand their concern, but feel there are still ways to administer the medication, get control of your pain and also keep your children safe.

What are the biggest concerns a parent has about using marijuana around children?

1. The danger of cannabis getting into the children’s hands.
2. The smell from smoking marijuana alerting children to what you have in the house.
3. The still lingering issues of society’s judgment of it

How can you comfortably still make use of cannabis with children in the house?

As with all medications kept at home, you always have to be alert for the safety of children. Cannabis is no different. For any medication, parents (and grandparents) should consider locking it up to keep it out of the wrong hands. 

To still be able to enjoy the benefits of marijuana, but without the smell, there are ways to administer it that are just as successful as smoking. Many wrongly assume that is the only way you can use it. 

I only take cannabis as an oil. It is kept in a medicine bottle, measured out nightly and mixed with some applesauce. This is not something that children are attracted to. I always make sure it is a secure spot. I sleep through most nights and generally during the day never need to take any other forms of the cannabis, since it continues to offer me benefits from the nightly teaspoon.

Another effective option is to use it topically. The results are soothing and have shown tremendous relief, even for those suffering with Complex Regional Pain Syndrome (CRPS). We make ours with a peppermint oil extract added to mask the smell. The peppermint also helps  open the pores in the skin to allow for absorption.

Tinctures containing cannabis can be made in either a glycerin or alcohol base. They can be stored in a medicine bottle and used as frequently as needed. One simple teaspoon in the cheek or under the tongue allows for absorption and pain relief. You can also take cannabis as a pill or suppository, and many have learned to make it as a drink or steeped as a tea. 

For more on the different ways to use cannabis, see my column: “How to Use Medical Marijuana Without Smoking.”

Finally, as far as societal judgement goes, as your children grow older, it doesn’t hurt to be honest with them about the benefits you have found from using cannabis to improve the quality of your life.  It is no different than any illness you are coping with where there is a need to medicate. As time progresses, this conversation will get easier as society embraces this safe alternative.

If you are one of those people who is putting the benefits of medical cannabis on hold because of your children, you might want to reconsider your options and allow yourself the relief you need. Remember, unless you take too much, you do not experience the high that people associate with marijuana. A body in pain does not react to marijuana like a body using it socially. You get pain relief and the others get the high.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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.

DEA Opioid Cuts Could Affect Terminally Ill Patients

By Pat Anson, Editor

Steep cuts in the production of opioid pain medication planned by the U.S. Drug Enforcement Administration could worsen drug shortages and affect pain patients receiving end-of-life hospice care.

“Yes, I think that’s absolutely possible. And very, very concerning,” says Judi Lund Person, VP of Regulatory and Compliance for the National Hospice and Palliative Care Organization.

The DEA announced earlier this week that it is reducing production quotas for almost every Schedule II opioid pain medication next year by 25 percent or more. The quota cuts include opioids such as hydrocodone, oxycodone, fentanyl, hydromorphone and morphine – many of which are used to give pain relief to patients in palliative and hospice care.

The DEA said the cuts are needed to prevent the diversion and abuse of opioids, and because opioid prescribing has been in decline for several years.

But Person says some patients in palliative care – who are generally disabled and chronically ill, but still living at home  – are already having trouble getting their opioid prescriptions filled.

“We’ve had patients who’ve had a lot of trouble finding a pharmacy that carries certain opioids,” she said

Person is worried that the DEA’s production cuts will also make it difficult for hospices to obtain opioids for terminally ill patients. Her organization, which represents about 4,000 hospice facilities in the United States, is still examining the possible impact of the opioid cuts.

“What does that do for patients at the end of life who need these drugs? That, I think, is one of our biggest questions,” Person told PNN.

“Living and working in the Washington area, the pressure is on so much around the opioid addiction crisis, and looking for any and all opportunities to see if we can correct that. It doesn’t surprise me in any way that this is happening. Now, what we’ll do about it and how we switch over to other drugs that will be available is a completely different question. I don’t know what we’ll do.”

Person says there are 1.4 million Medicare patients in hospice care and several million more receiving palliative care.

Many chronic pain patients who are not in palliative or hospice care say opioids are already hard to get, because many doctors are reluctant to prescribe them and some pharmacies claim they’re out of stock.

“I am really, really scared about my future and others. So many others are already suffering needlessly. How many more are going to be thrown under the bus?” asks Rich Martin, a Nevada pharmacist who was forced into early retirement by chronic back pain. “I take hydrocodone for my rescue doses, 5 times a day, and I almost always use them unless I am totally sedentary. I think hydrocodone is being reduced by 36 percent. 

“Opioids across the country have already been reduced or stopped parabolically downward. This whole quota thing could collapse to where there is indeed inadequate opioids for treatment of legitimate pain patients.  Then pharmacies may actually be telling the truth when they say they are out of opioids.”

The DEA says its opioid quotas are sufficient to provide “adequate and uninterrupted supply for legitimate medical need,” and could be adjusted if problems develop.

“DEA may revise a company’s quota at any time during the year if change is warranted due to increased sales or exports; new manufacturers entering the market; new product development; or product recalls,” the DEA said in a press release.

“This is a step in the right direction,” Sen. Dick Durbin (D-Illinois) said in an interview with WGN Radio. Durbin was among a group of senators that urged the DEA to lower the quota for opioids.

“Clearly there is more (opioids) than is necessary to alleviate pain. I’m the glad the DEA stepped up. It’s the first time.”

GAO Questions DEA’s Competency

Many Americans may not be aware of the significant role DEA plays in regulating the nation’s drug supplies. Drug manufacturers apply to the DEA every year to produce opioids and other controlled substances, and the agency determines how many – the quota – each drug maker can produce.

But in a recent series of highly critical reports, a congressional watchdog agency questioned the DEA’s competency in regulating pharmaceutical drugs.

In March 2015, the DEA was criticized in a lengthy report by the Government Accountability Office (GAO) for its inability to deal with drug shortages, a problem so serious it was called “a risk to public health.”

The GAO said that between 2001 and 2013, there were 87 “critical” shortages of controlled substances, over half of them pain relievers. There were also shortages of anti-anxiety medications, sedatives, and stimulants. 

“The shortcomings we have identified prevent DEA from having reasonable assurance that it is prepared to help ensure an adequate and uninterrupted supply of these drugs for legitimate medical need, and to avert or address future shortages. This approach to the management of an important process is untenable and poses a risk to public health,” the GAO report states.

A second GAO report in July 2015 faulted the DEA for heavy-handed tactics during pharmacy investigations. Many pharmacists said they were worried about being fined or having their licenses revoked, and blamed the DEA for poor communication and unclear rules. 

“In the absence of clear guidance from DEA some pharmacies may be inappropriately delaying or denying filling prescriptions for patients with legitimate medical needs,” the GAO report said. 

What has the DEA done in the last year to correct these problems? 

Of the 11 recommendations made by the GAO to improve the quota system and prevent drug shortages, the DEA has fully implemented only two of them.

One of the problems the DEA failed to address is the timeliness of its release of production quotas. Under guidelines set in 2006, the DEA is supposed to set quotas for controlled substances on or before May 1 of each year, to give drug manufacturers enough time to adjust their production schedules for the following year.

“DEA officials attributed this lack of compliance to inadequate staffing and noted that the agency’s workload with respect to quotas had increased substantially,” the GAO said in a report this summer.

“We could not confirm whether DEA’s lack of timeliness in establishing quotas had caused or exacerbated shortages because of concerns about the reliability of DEA’s data, among other things. However, by not promptly responding to manufacturers’ quota applications, we concluded that DEA may have hindered manufacturers’ ability to manufacture drugs that contain schedule II controlled substances that may help prevent or resolve a shortage.”

The quotas for 2017 were released on October 5 -- the 10th straight year that DEA has missed the quota deadline.

Kratom Helps Relieve My Neuropathy Pain

By Robert Dinse, Guest Columnist

I suffer from diabetic peripheral neuropathy.  I can best describe the pain as something akin to being doused in gasoline and then having a match tossed on me.  Pretty much everything from the neck down at times is involved in severe burning pain.

Over time I've been placed on a number of combinations of anti-depressants and anti-seizure medications with various degrees of effectiveness. Presently I am on Lyrica and nortriptyline, an anti-depressant.  So far this seems to be the best compromise between sedation and pain.

I actually got slightly better pain control with amitriptyline, another anti-depressant, but nortriptyline helps my mood more and since Lyrica negatively impacts my mood but greatly reduces my pain, this seems to be the best compromise.

With this combination of drugs, my pain is reasonably controlled about six days of the week, but I have periods, usually lasting 3-6 hours, of breakthrough pain in which I'm on fire again.

Kratom provides relief during those times and it does so without getting me high, or noticeably affecting my mental state in any way.  This leaves me almost pain free and totally functional.

robert dinse

There are two other drugs I've found to be helpful for this breakthrough pain. The first is marijuana, which is legal in Washington State but leaves me pretty much non-functional. I cannot drive, nor effectively do my work on enough marijuana to give pain relief.  Marijuana also stimulates my appetite and as a diabetic I need to lose weight, not gain weight.

The other useful drug is tianeptine sodium, but for it to be effective I need about 140 mg, which is higher than the maximum recommended single dose. At that dosage I also build a rapid tolerance.  Not a problem if the pain flare up is short, but if it lasts more than two days, which on rare occasions it does, then tianeptine sodium becomes ineffective. 

Some people get withdrawal symptoms from tianeptine sodium. I am fortunate that I have not ever experienced that, but it's lack of effectiveness if I get a bad flare-up lasting more than two days is its chief drawback.

I do not seem to rapidly build tolerance to kratom, and I've yet to experience any loss of effectiveness.  It doesn't get me high.  I don't get withdrawal symptoms. For my needs it is ideal, yet the DEA wants to take this away.

I wish that doctors and DEA officials could experience neuropathic pain firsthand so they could understand the hell their fouled up policies are putting people through. We have tens of thousands of deaths every year due to alcohol and tobacco, and the 16 alleged kratom deaths in the last five years all involved a mixture of other drugs that were most likely responsible for those deaths.

It is very hard to overdose on kratom because you take too much and you puke it up.  I have experimentally determined the puke up threshold for me is about 12 capsules, and 10 capsules totally relieve my pain with no sense of intoxication or impairment.

I don't know how you could ask a pain reliever to be simultaneously anywhere near as effective or safe as kratom.  Too much aspirin and you bleed to death internally, too much Tylenol and you toast your liver, many other NSAIDS readily available over the counter are bad for your heart.

Problem is, as a natural product, it's not patentable and thus competes with other patentable but much more dangerous and less effective drugs.

Robert Dinse lives in Washington State with his family.

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.

Why You Should See a Psychologist

By Crystal Lindell, Columnist

The weirdest part about getting psychiatric help is that people notice it.

They notice it in the same way they notice when you lose weight, or dye your hair blue. Like the IT guy at work, who says you just seem more confident lately. Or the friend’s husband who says you seem happier these days. Or the old Tinder guy who finds you on Facebook to comment that you seem so different, so much happier — and even your eyes seem brighter somehow.

I didn’t expect that. When I was in the thick of it, in the blackest night, I didn’t think anyone really noticed how bad it was. I don’t think I even noticed how bad it was. But if they’re noticing that things are better, then it’s probably safe to assume that they noticed how bad it was.

The fact is, getting psychiatric help in this country is depressingly difficult. The first time I sought help three years ago, I had just gotten sick and the pain was so horrific that I had been planning on slitting my wrists in the bathtub.

I finally worked up the courage to tell my primary care doctor that I was suicidal. He referred me to a psychologist who he said worked with people in pain.

But the psychologist refused to see me because she only worked with cancer patients in pain. I apparently wasn’t sick enough for her. So she referred me to someone else, and then weeks later I finally got in for an appointment.

To recap: I literally had a plan to kill myself, and it took weeks for me to find any help.

I’m a well-educated white woman with health insurance. If it’s this hard for me, what are other people going through?

Luckily, the doctor I got paired up with was great and helpful and sometimes a little mean, but always very good at helping me figure out how to deal with all the pain I was suddenly enduring.

The sessions weren’t so much about her telling me what to do, but how to do it. For example, we both agreed that I couldn’t work when the pain was 10/10, but instead of letting it get that bad and then ending up hysterically crying in my boss’ office begging to leave, we came up with a different plan. At the beginning of the week, talk to my boss and agree on days I could work from home. This way there was a plan everyone could feel secure with, and my pain wouldn’t reach 10/10 in the first place.

It seems like little things, but when you find yourself sick, it’s like you’re in a new country and having any sort of map can be extremely helpful.

Even if someone can get an appointment with a psychologist though, AND their insurance will cover it, there’s still another hurdle. A lot of psychologists suck. Just like a lot of doctors suck. And a lot of mechanics suck. And a lot of restaurants suck.

I hear all the time from people who say things like, “I don’t even bother seeing a psychologist, because they aren’t any good anyway. They don’t get me. They don’t help. They just want to get me in and out.”

But people don’t just stop going to restaurants because the Mexican place in town gave them food poisoning. And they shouldn’t just give up on therapy because they had some bad experiences.

Of course, even if you get past all that, there’s still the stigma. There is this idea that if you’re getting mental health help that you’re somehow weak. But getting your brain healthy doesn’t make you weak. It makes you strong. Life doesn’t come with an instruction manual, but getting a neutral opinion from an outside party is almost as good.

These days I see a team, a psychiatrist and a psychologist. The psychiatrist works with me on medical options, while the psychologist offers cognitive therapy to help me navigate my life.

And, honestly, my biggest regret is that I didn’t get help for my anxiety sooner. After going through opioid withdrawal over the last year, I’ve realized that I had been struggling with anxiety since at least my teen years.

It was as if all the pain meds I was on masked it just long enough to show me that there was, in fact, a better way to live. That there existed a possibility for a life that didn’t include waking up literally everyday feeling sick to my stomach, with anxiety attacks on the bathroom floor at work, and obsessing over every little thing.

I confess I was extremely resistant to the idea of going on a long-term anxiety medication, but I’m so glad that I worked with my doctor to find one that works on my brain. And aside from easily bruising, the side effects have been very minimal.

People don’t talk enough about the mind-body connection, but it’s there. And when you’re in pain or dealing with something like opioid withdrawal, getting mental health care may not be the first thing people seek. But it turns out, getting your brain healthy is just as important as getting your body healthy.

In the end, the question that psychology asks is simple: Can people actually change? I have to believe the answer is just as simple: Yes.

And if people can change, maybe the world can too.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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