Medication Could Reverse Peripheral Neuropathy

By Pat Anson, Editor

Blocking a sensory nerve signal with medication could prevent or even reverse symptoms of peripheral neuropathy, according to new research published in the Journal of Clinical Investigation

About 20 million Americans suffer from peripheral neuropathy, which often causes a painful stinging or burning sensation in the hands or feet.  

"Peripheral neuropathy is a major and largely untreated cause of human suffering," said lead author Nigel Calcutt, PhD, a professor of pathology at the University of California San Diego School of Medicine. "It has huge associated health care costs."

In studies on diabetic laboratory rats, Calcutt and his colleagues identified a molecular signaling pathway that, when blocked with the drug pirenzepine, promotes sensory neuron growth and prevents or reverses the nerve damage caused by peripheral neuropathy.

The discovery suggests that pirenzepine and other anti-muscarinic drugs – a class of nerve medication that is already used to treat Parkinson’s disease, motion sickness, irritable bowel syndrome and other conditions – could be used as a new treatment for peripheral neuropathy.

"This is encouraging because the safety profile of anti-muscarinic drugs is well-characterized, with more than 20 years of clinical application for a variety of indications in Europe," said senior study author Paul Fernyhough, PhD, a professor in the departments of pharmacology and therapeutics and physiology at the University of Manitoba in Canada. "The novel therapeutic application of anti-muscarinic antagonists suggested by our studies could potentially translate relatively rapidly to clinical use."

The first symptoms of peripheral neuropathy are usually a tingling or numbing sensation in the toes, feet, and hands caused by small fiber nerve damage. The symptoms progress, spread and become more painful, dramatically affecting quality of life.

Researchers say treating the disease in its early stages is key.

“Since small fiber degeneration develops early in the human disease and can be reliably quantified using a variety of minimal or noninvasive techniques that can be applied iteratively, future clinical trials of anti-muscarinic drugs might feasibly focus on reversal of these early indices of neuropathy,” they said.

“Further, as anti-muscarinic drugs were effective in augmenting collateral (nerve) sprouting in our in vitro assay, this new therapeutic approach may be most effective during the early stages of a dying-back neuropathy prior to overt and/or complete fiber loss.”

Nearly 26 million people in the United States have diabetes and about half have some form of neuropathy, according to the American Diabetes Association.  Small fiber neuropathy can also be caused by lupus, HIV, Lyme disease, celiac disease or chemotherapy.

Do Addicts Need Safe Haven to Shoot Up?

By Barby Ingle, Columnist

Lately I have been having more trouble sleeping than usual. At 3 am one night while lying in bed, my mind wandered to the more than 50 personal friends I have lost to suicide, medical complications, delays in treatment, and other health issues since 2012.

By 4 am I was watching the news. I had turned on the TV because my husband moved into a position that activated his “snore button” and I wasn’t going to be able to fall back asleep with that noise.

Then a news promo came across the screen. Next up, the announcer said, we will be discussing a proposal in San Francisco to provide addicts with a supervised facility to shoot heroin and other illegal drugs. Clean needles would be provided at no cost.

They think this will reduce the chances of an overdose death. Similar proposals have been made in other cities, like New York, Seattle and Baltimore.

I couldn’t believe what I was hearing.

I hit rewind and played it again. It really was happening! With the flood of thoughts that came to me, I knew I would never get to sleep and started thinking about the implications if this type of clinic was allowed.

How many ways would it affect our society? What message is it sending? Do I want my tax dollars to go to this type of clinic? Shooting heroin is illegal and there are people who support this?

The CDC put opioid guidelines in place last year for medications that are legal, prescribed and monitored. The guidelines caused many physicians to cut off or lower opioid doses -- even though it was not what some doctors felt was best for their patients. This has led to more suicidal thoughts, attempts, and actual deaths in the pain community.

I know one lady who was unable to get her opioid prescription filled for months. When they finally filled it, she used all the medication at one time to try and kill herself. Why? She didn’t want to face not being able to get the medication again and to go through the withdrawal pain of being without it.

She didn’t die. She was found and placed in a coma in intensive care. When the woman awoke days later, she was angry that her life had been saved.  

We are cutting off pain patients from medication that is legal because abusers may overdose and die. Yet there are plans to give drug abusers who are choosing to behave illegally a safe-haven, while denying legitimate patients access to the care their providers deem necessary.

We already have naloxone and similar medications available for people who overdose. Due to the great lobbying efforts of the “stop the abuse” team, naloxone is now available without prescription in 33 states. So basically it’s wrong to prescribe opioids, but if you choose to abuse them, we want to provide a place for you to use them safely. I am flabbergasted.

Can the legit pain patient show up and get opioids at these clinics as well?

I know if I was a heroin addict where I would be living. I would have my butt planted in a safe-haven drug facility so I could never have to go through withdrawal, be monitored so I don’t overdose, not have to pay for the care, and live the life I want.

That sounds much better than the life of the chronic pain patient, who comes in monthly at their own expense to get a prescription refilled. They are often drug tested, and if anything suspicious is found in their system, they are often taken off opioids and abandoned by their doctors.

Let’s circle back with this argument. Currently, legit pain patients are getting cut off from legally prescribed medications that help them be more productive and live better lives. This leads to withdrawal, which can cause death, and an increase in suicidal thoughts and actions. Some start looking for illegal means to help alleviate their pain.

Are we going to at least provide them with Suboxone, naloxone or methadone to help them come off the opioids more humanely?

We are helping drug abusers find new ways to keep abusing, while chronic pain patients are being ignored and discounted.

Let us not forsake one group for another. We need to find ways that address both pain and addiction concurrently, that don’t affect either side negatively or take away the rights of one group to give more rights to another. Let’s lower suicide statistics for those in chronic pain and overdose statistics for those who are abusing. It can be done. Silly proposals to provide safe-haven drug facilities for illegal drug use are wrong.

I am so looking forward to hearing everyone’s opinion in the comment section. Maybe there is something I am missing as to why anyone would think this is a good idea?

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

CDC Guidelines Study: The Devil Is in the Details

By Stephen Ziegler, PhD, Guest Columnist

JAMA Internal Medicine has published a research letter that purports to be an examination of the relationship between funding from opioid manufacturers and opposition to the prescribing guidelines issued by the Centers for Disease Control and Prevention (CDC) in March of 2016.

The authors examined the written comments made to the CDC during the open comment period, asserted that those who had received funding were more likely to oppose the CDC guidelines, and concluded that their “findings demonstrate that greater transparency is required about the financial relationship between opioid manufacturers and patient and professional groups.”

The following commentary, while critical of information contained in the article written by Caleb Alexander, Andrew Kolodny and others, nevertheless concludes with some positive suggestions for the future.

Illicit Opioids: The Harms Associated With Conflation of Data

The research letter, like many articles authored by those who are rightly concerned about addiction and overdose, begins by asserting that an association exists between increases in opioid prescribing and “large increases in addiction and overdose deaths in the United States.”

However, there are several problems with such a statement. First, association is not causation. For example, while a positive association exists between the size of a fire and the number of fire engines on the scene, fire engines for the most part do not cause fires -- they are only associated with it. Further, it is misleading and harmful to lump all opioids, prescription and illicit, together.

While conflating the two may help create better headlines and fuel the hysteria, such conflation is misleading because studies continue to indicate that two opioids, illicit fentanyl and heroin, are major drivers in the alarming increase in addiction and overdose, not prescription opioids.

Moreover, lumping all opioids together can be harmful because it ignores the size and complexity of the problems associated with the use and abuse of illicit and licit drugs. Because drug abuse remains a moving target, it is important to draw distinctions between a variety of factors and sources so that solutions can be tailored and refined. One size does not fit all.

Unclear Methodology Used to Classify Comments

Another problem with the JAMA article was the lack of measurement clarity regarding content analysis and how the authors categorized (coded) the comments that were submitted to the CDC during the open comment period.

According to the authors, the comments were classified as belonging in one of four mutually exclusive categories: “supportive, generally supportive with recommendations, generally not supported with recommendations, and not supportive.”

While it is unclear whether the coding occurred before or after the comments were reviewed, one section of the paper the authors pointed out that about 6% of the comments “were coded as supportive by 1 reviewer and not supportive by the other; a third reviewer adjudicated these cases.”

The first question that comes to mind is: who was the reviewer? Since it is likely that the authors were not randomly selected, it remains unclear what criteria was used to adjudicate disputes related to coding, especially when we know that two reviewers were at opposite ends of the spectrum and the coding scheme was central to the study.

Along these same lines, what constitutes opposition to the CDC guidelines? Was opposition binary (yes/no), was it mixed (and if so, where was the line), or did opposition exist along a range (strong or weak)?

When dealing with qualitative data (words as opposed to numbers), there are tendencies in terms of direction, but the devil is in the details. This is notable because there were likely many different reasons commentators and organizations were not supportive of the CDC prescribing guidelines, such as, but not limited to:

  1. The secretive nature of the entire process
  2. The short time frame the CDC allotted for public comments (initially less than 24 hours)
  3. Allegations that the process violated the Federal Advisory Committee Act
  4. Strong recommendations based on weak evidence
  5. Committee membership that lacked balance and broad stakeholder involvement
  6. An anti-prescription opioid agenda or bias by some committee members
  7. The fixation on dosing limits ignored the problems associated with converting dosage from one opioid to another, the differences in patients, and the potential for unintentional overdose at any dosage level
  8. The lack of balance and selective nature of the literature cited in the guidelines
  9. The failure to recognize that non-pharmacologic therapy and alternatives to opioids may not be effective or covered by insurance
  10. An ironic lack of transparency and full disclosure concerning potential conflicts of interest among those involved in the guidelines at various levels from start to finish

Conclusion

While the reduction of harms associated with the use of prescription drugs and illicit opioids such as heroin remains essential to improving the public health, it serves no laudable purpose to continually lump all opioids together.

Drug abuse is a highly complex bio-psycho-social phenomenon that requires recognition that not all people, nor problems, are the same. We must also not lose sight of the fact that millions of Americans are suffering from chronic pain, alternatives to opioids may not be as effective or covered by insurance, and the overwhelming majority who take prescription opioids use them responsibly.

In regards to the conflicts of interest issue, while the authors eventually admitted that the “CDC did not prompt or require organizations to disclose their financial associations as part of their comments,” I agree that disclosing real or potential conflicts of interest in the future is good for all involved. However, such disclosure should not be limited to just the pharmaceutical industry. It should also include government agencies and those in the substance abuse community.

I have and continue to provide consultation to government and the pharmaceutical industry about the need for balanced solutions that help ensure appropriate access, while at the same time prevent abuse. I care about the under-treatment of pain, as I am sure that those in the substance abuse community care about those suffering from addiction.

Consequently, what both the pain community and the substance abuse community need to focus on is finding common ground and forging balanced solutions, since finger pointing, bullying or taking a zero-sum game approach only impedes progress.

Stephen J. Ziegler, PhD, is a Professor Emeritus of Public Policy at Indiana University-Purdue University in Fort Wayne, Indiana.

Dr. Ziegler conducts research, provides continuing medical education, and consults on the topics of opioid risk management and the impact of drug regulation and enforcement on the treatment of pain. He has been published in several peer reviewed journals and serves as a reviewer for several journals such as the Journal of Opioid Management, Pain Medicine, Cancer, and the Journal of Medical Ethics. Prior to obtaining his law degree, Dr. Ziegler worked as a police detective and as a Task Force Officer for the U.S. Drug Enforcement Administration.

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.

Bias and Conflict of Interest in Opioid Guidelines Study

By Pat Anson, Editor

A new study published in JAMA Internal Medicine is claiming that some patient advocacy groups and medical organizations that opposed the Centers for Disease Control and Prevention’s opioid prescribing guidelines had a conflict of interest.

Ironically, the two main authors of the study appear to have a conflict of interest themselves, as well as a bias against opioid pain medication.

In their review of 158 organizations that made public comments on the CDC guidelines – which discourage doctors from prescribing opioids from chronic pain – researchers found that about one third (38%) of those that accepted funding from opioid manufacturers opposed the guidelines. This alleged conflict of interest should have been disclosed, they say.

“A major concern is that opposition to regulatory, payment, or clinical policies to reduce opioid use may originate from groups that stand to lose financially if sales of opioids decline,” wrote senior author G. Caleb Alexander, MD, an associate professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health.

“Our findings demonstrate that greater transparency is required about the financial relationships between opioid manufacturers and patient and professional groups.”

One of the co-authors who designed the study is Andrew Kolodny, MD, the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid group that helped draft the CDC guidelines and was itself accused of numerous conflicts of interest. Kolodny is the former chief medical officer of Phoenix House, which runs a chain of addiction treatment centers and was PROP’s chief source of financial support until recently.

Alexander, who is a widely published researcher who has collaborated several times with Kolodny on other opioid-related studies, failed to disclose in the JAMA study that he has accepted funding from Otsuka Pharmaceuticals. The Japanese drug company makes Abilify, an anti-psychotic medication prescribed off-label to treat chronic pain. The amount paid to Alexander in 2015 was relatively small, a $668 fee for consulting, but according to the criteria used in his own study, it represents a conflict of interest.

Any amount of money accepted from an opioid manufacturer was considered a conflict of interest in Alexander and Kolodny’s study, whether it was a grant, gift, advertising or some other material support. No evidence was required to prove the money swayed an organization one way or another. In fact, nearly two-thirds (62%) of the organizations that accepted funding from opioid makers supported the CDC guidelines, disproving their own theory.   

“I’ll be the first to say that our method of assessing financial relationships is somewhat imprecise,” Alexander told Pain News Network. “This study was not designed for causal inference. This study doesn’t permit us to say what the effect of these funding relationships has been. But one has to wonder, when this amount of money is being spent, what the effects are.”

PROP and the “Opioid Lobby”

The claim that many medical organizations and patient advocacy groups have come under the influence of the “opioid lobby” has long been used by Kolodny.

“CDC’s plan was effectively blocked by intense pressure from the opioid lobby, which sees more cautious opioid use as a financial threat,” wrote Kolodny in a newsletter sent to PROP supporters in December 2015, after the CDC guidelines were temporarily delayed after a public outcry and threats of a lawsuit.

Kolodny’s smear campaign was widely covered uncritically by the news media, even though there was no evidence cited to support it.

“This is a big win for the opioid lobby,” Koldony told the Associated Press.

“The story here is how the opioid lobby is using the Cancer Action Network to discredit a public health effort to limit opioid prescribing,” Kolodny told The Hill.

“Here’s background on shady organization now attacking CDC’s draft opioid guideline,” Kolodny posted on Twitter.

Kolodny did not respond to a request for comment for this story.

Like his co-author, Alexander also is convinced there is a quid-pro quo between opioid manufacturers and groups that they fund.   

“The biggest myth out there is that there’s a conflict between reducing our dependence on opioids and improving care for patients in pain,” Alexander told the AP last year. “It’s an artificial conflict, but there are lots of vested interests behind it.”

Does the opioid lobby even exist? Are patient advocacy groups so easily swayed by their funding sources? Kolodny and Alexander’s study presented little evidence of either, yet they still managed to get it published in an influential journal published by the American Medical Association.

“No one in the pharmaceutical industry has ever asked me or anyone that is on our voting board to publicly state a specific stance on any issue regarding treatment options. Not one pharmaceutical representative has ever asked anyone from iPain to comment on the CDC guidelines,” said Barby Ingle, a PNN columnist who is President of the International Pain Foundation (iPain), a patient advocacy group.

Ingle, who did submit her own personal comments on the CDC guidelines, says it is very difficult to get funding from drug makers.

“We have gotten to the point of not even applying for funding unless we are contacted,” said Ingle. “Even when notified of funds available, iPain did not receive the funding requested and it turned out to be a waste of time on our part.”

What is a Conflict of Interest?

“These people perhaps don’t quite understand what is the definition of a conflict of interest,” said Richard Samp, chief counsel of the Washington Legal Foundation, which threatened to sue the CDC for violating federal law when it drafted the opioid guidelines.

“As I understand conflict of interest under federal law, that generally means that somebody has been appointed to serve in one position, but they have some other financial or ideological interest that conflicts with the interests that they’re supposed to have,” Samp told PNN.

“That was the focus of our criticism of the process that CDC went through in adopting its draft guidelines, which were written with the assistance of an advisory group that included people who had very severe conflicts of interest. For example, one particular member of the group, Jane Ballantyne, was a paid consultant for a plaintiffs’ law firm that had a vested interest in suing opioid manufacturers.”

Dr. Ballantyne is the President of PROP, the organization founded by Kolodny. At least four other board members of PROP, including Kolodny himself, served on various CDC panels that advised the agency during the drafting of the guidelines, a matter that the agency refused to disclose for several months.   

“What they are talking about (in the JAMA study) is not a conflict of interest. They’re just talking about the fact that some people who file comments with federal agencies have a particular point of view,” said Samp. “Every citizen regardless of his or her point of view and regardless of his or her background has a right to comment on what our government is doing.”

Another way to look at whether there is a conflict of interest is offered by Stephen Ziegler, PhD, in a commentary for Pain News Network (see "CDC Guidelines Study: The Devil Is in the Details").

“Association is not causation. For example, while a positive association exists between the size of a fire and the number of fire engines on the scene, fire engines for the most part do not cause fires -- they are only associated with it,” Ziegler wrote.

Ziegler says it’s time for the pain community and the addiction treatment community to end the finger pointing and bullying over opioids, and start finding common ground.

“It is misleading and harmful to lump all opioids, prescription and illicit, together. While conflating the two may help create better headlines and fuel the hysteria, such conflation is misleading because studies continue to indicate that two opioids, illicit fentanyl and heroin, are major drivers in the alarming increase in addiction and overdose, not prescription opioids,” Ziegler wrote.

The American Academy of Pain Medicine (AAPM), an association of pain management physicians, also released a statement about the JAMA study, saying it agreed that “disclosure is one means of managing conflicts of interest.” 

While the AAPM cautiously supported the CDC guidelines, it also warned that their widespread implementation could lead to problems.

“It is incumbent upon us all to monitor the deployment of the guideline to ensure that it does not inadvertently encourage under-treatment, marginalization, and stigmatization of the many patients with chronic pain that are using opioids appropriately,” the AAPM said.

Since the guidelines were released in March 2016, many pain patients have complained to PNN that their opioid doses have been reduced or eliminated, and that it’s become difficult to find a doctor willing to treat chronic pain. Others have said they are contemplating suicide because their pain is going untreated.

How to Cope With Fibromyalgia Fog

By Lana Barhum, Columnist

My day job in the legal field can be pretty demanding, involving numerous phone calls, emails, deadlines, and other verbal and written communications. Some days, fibromyalgia fog makes my job a whole lot harder. 

Whether it is memory issues, trying to find the right words, misplacing things, or transcribing phone numbers correctly, fibro fog can affect the quality of my work.

It also affects my personal life, sometimes leaving me forgetful, confused, flustered carrying on conversations, and even lost trying get to destinations often traveled.

Fibro fog is the term used to describe the cognitive difficulties associated with fibromyalgia. According to a 2015 review in Rheumatology International, some fibromyalgia patients reported that fibro fog is even more difficult to manage than their pain and fatigue.

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At least half fibromyalgia patients “experience distressing subjective cognitive impairment,” according to a 2015 report in Arthritis Care and Research.  

Fibro fog can cause short term memory loss, distraction, forgetfulness, difficulty in carrying on conversations, inability to process new information and occasional disorientation.  In most cases, fibro fog is a mild symptom, but for some people it can be quite scary, especially for those used to functioning at very high levels.

Fibro fog can leave me temporally disorientated and unable connect my thoughts. My thoughts come in, but they are not being processed correctly, or in a way I can properly put into words. And that can be stressful and frightening.

Causes of Fibro Fog

The reasons for fibro fog are not well understood.  But doctors speculate fibro fog is a result of fibromyalgia patients' inability to get restorative sleep.

"Therefore they're chronically fatigued," says Corey Walker, MD, a rheumatologist at the Intermountain Health Care System in Logan, Utah. "Their minds aren't rested." 

Non-restorative sleep is the number one sleep issue among fibromyalgia patients. Even after getting a full night's sleep, you may still wake up feeling exhausted, or as if you have not slept at all. Up to 90% of fibromyalgia patients experience non-restorative sleep, according to a 2016 report in the Journal of Pain and Relief by researchers at Luigi Sacco University Hospital in Milan, Italy. These sleep problems can contribute to pain, daytime fatigue, and fibro fog.

"A large percentage of FM patients report sleep disturbance, including difficulties in falling or staying asleep, early morning awakenings and non-restorative sleep," says Maurizio Rizzi, MD, and colleagues. The researchers conclude managing sleep disorders could actually reduce fibromyalgia symptoms, including fibro fog.

Other theories blame pain levels for fibromyalgia fog. When people experience fibromyalgia pain, the belief is that some parts of their brains do not receive enough oxygen, causing confusion and disorientation. Pain also stimulates areas of the brain involved in cognitive tasks. Quite simply, it is just hard to concentrate when you are in pain.

Overexertion, extreme fatigue, stress and side effects of fibromyalgia medications are also blamed for fibro fog.  My fibro fog is worst when I am exhausted, and as a single parent, I have been known to push myself to the point of cloudiness. Overstimulation, such as background noise and fluorescent lights, is also a fibro fog trigger, along with not getting a good night's sleep.  All of these things can make it harder to focus on the things I need to do.

Coping With Fibro Fog

While there are no specific treatments for fibro fog, you can alleviate fibro fog by following your doctor's treatment plan. Your doctor may also prescribe medications to manage specific symptoms.  For example, he or she may prescribe a sleep aid to help improve sleep, and if sleep quality is better, you’ll feel more alert and focused. 

Here are some other strategies for coping with fibro fog.

Get Quality Sleep. Because lack of sleep is a big reason for fibro fog, improving sleep habits may provide relief. For example, try going to bed at the same time every night and get up in the morning at the same time every day. 

Stay Active. Even though you struggle with pain, you should still keep moving. Low impact activities, such as walking, are easy to do. Try to stay active throughout the day by sitting less, taking stairs more often, and parking further away.

Maintain a healthy diet. Cognitive functions do improve when you eat real food. This includes fruits and vegetables, whole grains, lean meat, and low-fat dairy.

Avoid caffeine. Most people think caffeine helps with alertness and awareness. But, caffeine makes symptoms worse for fibromyalgia patients, and contributes to sleep issues. Moreover, it is a stimulant that gives you energy and forces you to crash once it wears off.

Stop stressing. Stress triggers and worsens fibro fog.  Do your best to avoid stressful situations. Try relaxation breathing when you are feeling overwhelmed.

Keep a calendar. A calendar is a lifesaver when you can't think straight.  Keep track of appointments and events on a paper calendar or computer program.  Set timers and alarms as appointment reminders.

Have routines. Having routines for simple tasks helps, too.  For example, you may want to keep your purse, coat, and keys in the same place, so you are less likely to be searching when you need them and fibro fog is making it difficult to think straight.

Don’t Take Life So Seriously

Like most other fibromyalgia symptoms, there is no magic, one-size-fits-all solution to combat fibro fog. It usually requires a combination of strategies and habits to reduce cognitive issues. You will need to try and practice coping strategies until you find what works for you.

Remember to be kind to yourself when you struggle with mental unclarity.  Slow down if you are feeling frustrated and regain focus.  Lastly and most importantly, stop pushing yourself to adjust and just take care of yourself.

I have learned to not take life so seriously and to have a tongue-in-cheek attitude about my cognitive struggles. There are plenty of foggy -- yet funny – moments, like when I put my keys in the fridge and the milk in the cabinet.  I can either get depressed or laugh at these silly mishaps.  Taking yourself lightly will give you an emotional boost and put a smile on your face, and there are plenty of good health benefits when you are happier.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

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

Pain Community Reacts to ‘Big Brother’ Medicare Policy

By Pat Anson, Editor

Here we go again.

That’s seems to be the reaction from many in the pain community to plans by the federal government to have pharmacists report suspicious activity by doctors who prescribe opioids to Medicare and Medicaid patients. (See “Medicare Takes Big Brother Approach to Opioid Abuse”)

The Centers for Medicare & Medicaid Services (CMS) says its new strategy to fight opioid abuse is aimed at “incentivizing prescribing behavior” by having pharmacists identify and report doctors who may be overprescribing opioids and patients who may be abusing them. 

“It is a terrible idea to pit pharmacist against physicians. It is an unbelievably perverse way to solve a serious healthcare problem that requires trust and collaboration among all the stakeholders,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine. “Many, many people with pain and addiction are going to be harmed by this decision.”

“This will only serve to further increase stigma and increase distrust between patients, their prescribers, and pharmacists,” says Anne Fuqua, a former nurse, chronic pain sufferer and patient advocate.

“Just the words ‘incentivized prescribing’ makes me shudder.  It may well help root out a limited number of substance abusers and decrease pharmacy claims for Medicare Part D and Medicaid, but this is neither an effective manner to intervene when substance abuse does exist nor an ethical way to decrease prescription drug benefit claims.”

CMS contracts with dozens of private insurance companies to provide health coverage to about 54 million Americans through Medicare and nearly 70 million in state-run Medicaid programs. Under the new policy, information about doctors and patients who’ve been red flagged by pharmacists would be shared through a database with all insurers. The companies would be empowered to “investigate provider and beneficiary behaviors that may be indicative of fraud or abuse.” Violators could be dropped from insurance networks or lose their coverage.    

“A policy like this, that encourages pharmacists to report the prescriber or patient to the insurer for investigation, is dubious enough.  It's even more serious that the allegations would be entered in a database whether or not they are proven,” said Fuqua. “This would be like your doctor saying they think it's possible a patient is misusing medication and then emailing this to all the doctors in your state.  Every element of this reeks of big brother and directly contradicts treating addiction as a health issue.”

“It appears that CMS is dictating that pharmacists perform activities that are both outside of their training and the legal authority granted to them under the state's practice act,” said Steve Ariens, a retired pharmacist and patient advocate. “Pharmacists don't have access to the patient's entire medical records. They are being told by CMS to both diagnose and prescribe what is right for a patient.”

“Many of the pharmacists I know are already overworked with other regulations to the point of PDMP’s not being updated in a timely manner. I know of patients who have been affected by this personally,” said Barby Ingle, president of the International Pain Foundation and a PNN columnist.   

“What a pharmacist believes about a medication’s appropriateness should not come into play when they are not trained on the medical aspects of chronic conditions. Pharmacists know about medication, but not in-depth information on diseases we are living with and therefore should not be making the call on what they deem suspicious on behalf of a prescriber.”

Medicare Policy Based on CDC Guidelines

CMS is basing many of its policy decisions on opioid prescribing guidelines released last year by the Centers for Disease Control and Prevention. The guidelines, which discourage doctors from prescribing opioids for chronic pain, are voluntary and meant only for primary care physicians. But they are being widely adopted by insurers and doctors throughout the country as a “standard of care,” even though the scientific evidence supporting many of the guidelines is weak.

CMS seems unconcerned by that lack of evidence.

“Where sufficient evidence was not available, the CDC guidelines are based on expert opinion, as noted by the CDC,” the agency said in a 30-page briefing paper on its Opioid Misuse Strategy.

“The guidelines were formed by consensus of mostly people with agendas, biased against opioids, and totally insensitive to the needs of people in pain. The dose limits suggested by the CDC guidelines are arbitrary, not evidence based,” said Dr. Webster. “

“Let's be clear about the CDC guidelines.  A major reason the guidelines were developed was to reduce cost of drugs for payers.  If Medicare and Medicaid patients have an increasing incidence of opioid use disorder it is because these people do not have any alternative treatments for their pain other than an opioid. 

“If CMS is going to endorse the guidelines that have little to no science basis, then they should mandate all of the alternative therapies to opioids have unlimited coverage and that payers be mandated to provide adequate coverage for the underlying reasons that lead to opioid use and mental health disorders.  This would more likely reduce the incidence of an opioid use disorder.”

CMS is not requiring insurers to cover alternative pain therapies, such as massage and acupuncture, but says it is a prioritizing efforts to develop more evidence to support their use.

Public Not Informed

CMS convened a “cross-agency working group” to develop its opioid misuse strategy, and says it is “working closely” with other federal agencies such as the CDC, Food and Drug Administration, National Institutes of Health, and the White House Office of National Drug Control Policy. Members of the working group were not identified.

“CMS sought representatives from every component of the agency to ensure a broad range of expertise and perspectives. This diverse group assessed the benefits, limitations, and improvement opportunities within CMS’s current policies and programs. The group then defined desired outcomes from the perspective of CMS’s unique role as a leading payer of health care and identified key actions to achieve those outcomes,” the agency said in a statement on its website.

But CMS never held a public hearing or sought public comment prior to the strategy’s release last week. Several medical organizations and patient advocacy groups contacted by Pain News Network were unaware the policies were even being developed. 

“I was not even aware that these new CMS policies were being created and as a patient on Medicare, I think that we should have been notified at minimum,” said Barby Ingle. “Our opinion as patients in the program should have been a part of the voice of something that will affect proper and timely access to care.”

“Society would never tolerate any other patient group being treated in this manner,” said Anne Fuqua. “It's no accident that this provision has been given so little attention.”

On its website, CMS says it now welcomes “input from clinicians, patients, consumers, caregivers, manufacturers, researchers and others.” But it never makes clear how interested parties can comment or participate, such as a notice or public comment period published in the Federal Register.

The secretive actions of the agency – so far – are similar to those used by the CDC in developing its opioid prescribing guidelines. For several months, the CDC refused to identify members of a “core expert group” that helped draft the guidelines, which were released in September 2015 to a small and mostly selected online audience.

Initially, the public was given only 48 hours to comment on the CDC guidelines -- a decision that was reversed after a public outcry and threats of a lawsuit. Over 4,300 public comments were later received online, most of them in opposition to the guidelines, which were released virtually unchanged in March 2016.

CMS has not responded to repeated requests for an interview about its opioid misuse policies. It is not clear when the policies will be initiated, who was involved in drafting them, or where the idea came from.

CMS caved into political pressure last year when it agreed to drop pain related questions from patient satisfaction surveys. Politicians, hospitals, the American Medical Association, and other health organizations all claimed the questions encouraged the overprescribing of opioids. CMS officials said there was no evidence that was true, but agreed to eliminate the questions in 2017 patient surveys. The agency is still working on a future set of questions to replace them.

‘Substantial Evidence’ Marijuana Relieves Chronic Pain

By Pat Anson, Editor

A major new study released today on the health effects of medical marijuana has found “substantial evidence” that cannabis is an effective treatment for chronic pain in adults.

The lengthy study by a committee of the National Academies of Sciences, Engineering, and Medicine looked at over 10,000 scientific reports on marijuana and its active chemical compounds. The committee studied a range of possible impacts marijuana can have on pain, cancer, mental health, injuries and other health conditions.

Marijuana is now the most popular illicit drug in the United States, although it is legal under state law in 28 states and the District of Columbia.

A recent survey found over 22 million Americans have used marijuana in the past month, with nine out of ten users saying their primary use was recreational. Only about 10 percent reported they used cannabis solely for medical purposes. 

“For years the landscape of marijuana use has been rapidly shifting as more and more states are legalizing cannabis for the treatment of medical conditions and recreational use,” said Marie McCormick, the committee chair and a professor of pediatrics at Harvard Medical School.

“This growing acceptance, accessibility, and use of cannabis and its derivatives have raised important public health concerns.  Moreover, the lack of any aggregated knowledge of cannabis-related health effects has led to uncertainty about what, if any, are the harms or benefits from its use.  We conducted an in-depth and broad review of the most recent research to establish firmly what the science says and to highlight areas that still need further examination.”

The committee could find only five good-to-fair quality studies on whether cannabis was an effective treatment for chronic pain.  In all five studies, the cannabis was either smoked or vaporized, and did not include other delivery methods such as food, creams or oils infused with cannabinoids.  

“Thus, while the use of cannabis for the treatment of pain is supported by well-controlled clinical trials... very little is known about the efficacy, dose, routes of administration, or side effects of commonly used and commercially available cannabis products in the United States. Given the ubiquitous availability of cannabis products in much of the nation, more research is needed on the various forms, routes of administration, and combination of cannabinoids,” the committee found.

"It is wonderful to see that what I experience is now being recognized and respected in the medical community," said Ellen Lenox Smith, a PNN columnist who uses marijuana to relieve pain from Ehlers Danlos syndrome.

"I have been allowed nightly rest due to a simple teaspoon of oil at night. Somehow, the next day I rarely need to turn to more, for it continues to calm the body into the next day for me."

Others have also found that cannabis reduces their need for pain relievers. In states where medical marijuana is legal, the committee found growing evidence that users were replacing opioids with cannabis.

“Recent analyses of prescription data from Medicare Part D enrollees in states with medical access to cannabis suggest a significant reduction in the prescription of conventional pain medications,” the committee found. “Combined with the survey data suggesting that pain is one of the primary reasons for the use of medical cannabis, these recent reports suggest that a number of pain patients are replacing the use of opioids with cannabis, despite the fact that cannabis has not been approved by the U.S. Food and Drug Administration (FDA) for chronic pain.”

For adults muscle spasms caused by multiple sclerosis, the committee said there was substantial evidence that short-term use of oral cannabinoids – marijuana-based products that are orally ingested – improved their symptoms.  In adults with chemotherapy-induced nausea and vomiting, there was also conclusive evidence that oral cannabinoids were effective in treating those symptoms.

There was a lack of data on the effects of cannabis on the immune system, and insufficient evidence to support or refute a link between cannabis and adverse effects on the immune status of individuals with HIV.  Limited evidence does suggest that regular exposure to cannabis smoke may have anti-inflammatory effect.

Regarding the link between marijuana and cancer, the committee found evidence that suggests smoking cannabis does not increase the risk for cancers often associated with tobacco use. However, the committee did find that smoking cannabis on a regular basis was associated with more frequent chronic bronchitis, coughing and other respiratory issues.

To download a free copy of the study, click here.

Medicare Takes 'Big Brother' Approach to Opioid Abuse

By Pat Anson, Editor

A new strategy being developed by Medicare to combat the abuse of opioid pain medication will encourage pharmacists to report physicians who may be prescribing opioids inappropriately. Patients that a pharmacist believes are abusing opioids could also be referred for investigation.

The strategy, which has yet to be finalized, was outlined by the Centers for Medicare & Medicaid Services (CMS) last week in a 30-page report on the agency’s “Opioid Misuse Strategy.”  It has not been widely publicized by CMS or reported in the news media.

“Many Medicare and Medicaid beneficiaries and their families have experienced opioid use disorder, commonly referred to as addiction,” the agency says in the report’s executive summary.

“Given the growing body of evidence on the risks of misuse… CMS is outlining our agency’s strategy and the array of actions underway to address the national opioid misuse epidemic.”

One strategy CMS will explore is “incentivizing prescribing behavior” by encouraging physicians and pharmacists to consult with prescription drug monitoring programs (PDMPs) to review each patient’s prescription drug history. The use of PDMPs is fairly widespread already, but CMS would take it a step further by encouraging pharmacists to report suspicious activity by prescribers and patients.

“Pharmacies would be able to identify prescribers with potentially illicit prescribing practices or beneficiaries (patients) who may be overusing opioids. This information can be referred to health plans to investigate provider and beneficiary behaviors that may be indicative of fraud or abuse.”

Investigations of abuse or inappropriate prescribing would be shared with insurers enrolled in the giant Medicare/Medicaid system, even if the allegations are never proven. CMS contracts with dozens of private insurance companies to provide health insurance to about 54 million Americans through Medicare and nearly 70 million in Medicaid.

“Part D plans can use CMS’s information sharing platform to identify leads for their own internal investigations and can report actions they have taken. For example, if one plan sponsor suspects a provider of inappropriate prescribing behavior, it can alert other plans to that possibility so that those plans can conduct their own evaluations and take coordinated action if warranted.

“The results of these projects are provided to plan sponsors so that additional actions can be taken, including initiating new investigations, conducting audits, or terminating physicians and pharmacies from their network.”

“It looks like ‘Big Brother’ is going to watch everyone,” says Rick Martin, a retired Las Vegas pharmacist who suffers from chronic back pain.

“Pharmacists are going to be even more paranoid than they already are," Martin wrote in an email. “Retail pharmacists don't have time for this. They aren't the police. Nevada has a PDMP. It already shows a significant decrease in prescribing patterns over the last several years, so it is working.  With the CMS, just who decides what are appropriate quantities and proper prescribing habits?”

CMS Using CDC’s Prescribing Guidelines

In developing its strategy, CMS is relying heavily on prescribing guidelines released in 2016 by the Centers for Disease Control and Prevention, which discourage doctors from prescribing opioids for chronic pain. CMS says it will use the “evidence-based guidelines” to determine what constitutes inappropriate prescribing. The guidelines include a recommendation that opioids be limited to no more than 90 mg of morphine equivalent milligrams a day, a dose that many patients in severe chronic pain consider inadequate. 

The CDC maintains the guidelines are “voluntary” and intended only for primary care physicians. However, under the CMS strategy, the guidelines would apply to all prescribers, except those treating cancer or patients in palliative care.

“I just hate to see something that CDC itself said was voluntary, was a recommendation, and really isn’t all that specific if you really read it, get turned into something that creates bright red lines. And if you step across the line, you’re going to get yourself in trouble. I don’t think that’s right,” said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management, the nation's largest pain management organization.

CMS says the additional scrutiny of doctors and patients is needed because “the Medicare population has among the highest and fastest-growing rates of diagnosed opioid use disorder,” which the agency estimates at 6 out of every 1,000 beneficiaries. Addiction rates are higher among Medicaid beneficiaries, at 8.7 patients for every 1,000, a figure 10 times higher than patients covered by private insurance plans.

“Because there is no systematic policy of screening for opioid use disorder and patients are unlikely to volunteer that they are misusing their medication or are using opioids like heroin because of discrimination and stigma, these rates are likely underestimates,” CMS says.

Rick Martin believes the Medicare policies will make physicians even less likely to prescribe opioids and pharmacists less likely to fill legitimate prescriptions.

“Pharmacists, like the docs, are just plain scared. If they don't know you, many are reluctant to fill,” said Martin, who is enrolled in Medicare's Part D prescription drug plan.

“One pharmacy I went to refused to fill my bona fide legitimate prescription because it exceeded an arbitrary amount. The manager didn't want any extra scrutiny from DEA, the home office, the PDMP, the board of pharmacy, or the (drug) wholesaler. Even though I was in the system for over 2 years and had previously had even higher amounts filled.

“One of the pain docs I am working with told me he has gotten numerous letters from Humana and one other (insurer) because he is in the upper 1% of dispensing opioids. Well, duh!  He is an exclusive pain management doctor. They didn't compare him with other pain doctors, just ALL doctors. Stupid. What will the CMS do on top of what goes on already?”

Bob Twillman worries the CMS strategy will create distrust between physicians and pharmacists.

“We’ve been trying to make efforts over the last few years to get pharmacists and physicians to work more closely together. I’m concerned this could increase suspicion between the two and be counter to that effort,” said Twillman. “Getting prescribers and pharmacists to work together is an important thing in enhancing patient safety and if we do something like this and short circuit that effort we’re doing more harm than we are good.”

CMS did not say when it planned to implement its Opioid Misuse Strategy or if public hearings would ever be held on them. The agency only said in coming weeks it would release “statements reflecting the agency’s Medicare and Medicaid goals.”

Also unclear is why CMS and the Department of Health and Human Services would take a major step affecting the healthcare of tens of millions of patients and their doctors in the final days of the Obama administration.

“The fact that this is coming out a couple of weeks before the new administration comes in does make it a little bit odd. It makes me wonder how many legs it has or whether it will carry over into the next administration,” said Twillman.

Experts Say Weather’s Not to Blame for Your Pain

By Pat Anson, Editor

The age old debate over weather’s impact on pain is heating up again with new research indicating that cold, rainy weather has no impact on symptoms associated with back pain or osteoarthritis.

Researchers at The George Institute for Global Health in Australia say damp weather makes people more aware of their pain, but the symptoms disappear as soon as the sun comes out – suggesting there’s a psychological cause.

“Human beings are very susceptible so it’s easy to see why we might only take note of pain on the days when it’s cold and rainy outside, but discount the days when they have symptoms but the weather is mild and sunny,” said Professor Chris Maher, director of the George Institute’s Musculoskeletal Division.  

“The belief that pain and inclement weather are linked dates back to Roman times. But our research suggests this belief may be based on the fact that people recall events that confirm their pre-existing views.”

Maher and his colleagues conducted two studies involving nearly 1,000 Australians with back pain and 345 people with osteoarthritis.

Using weather data from the Australian Bureau of Meteorology, researchers compared the weather at the time patients first noticed pain with weather conditions one week and one month before the onset of pain as a control measure. 

Results showed no association between back pain and temperature, humidity, air pressure, wind direction or precipitation. Warmer temperatures did slightly increase the chances of lower back pain, but the amount of the increase was not clinically important. 

A previous study on back pain and weather at The George Institute had similar findings, but received widespread criticism from the public.

“People were adamant that adverse weather conditions worsened their symptoms so we decided to go ahead with a new study based on data from new patients with both lower back pain and osteoarthritis. The results though were almost exactly the same – there is absolutely no link between pain and the weather in these conditions,” said Maher.

The back pain study was published in the journal Pain Medicine. The study on osteoarthritis was published in Osteoarthritis and Cartilage.

“People who suffer from either of these conditions should not focus on the weather as it does not have an important influence on your symptoms and it is outside your control,” said Associate Professor Manuela Ferreira.

The Greek philosopher Hippocrates in 400 B.C was one of the first to note that changes in the weather can affect pain levels. Although a large body of folklore has reinforced the belief that there is a link between weather and pain, the science behind it is mixed.

PNN readers say there’s little doubt in their minds that there’s a connection.

“I totally agree that rainy weather does affect pain. I have osteoarthritis and fibromyalgia, and pain is most severe when there is a change happening in the weather especially rain,” wrote Dee.

“It's been well established that the source of weather-related pain is a direct result from the variance in barometric pressure,” said Judith Bohr. “Changes in the intensity of that pressure is felt more acutely in the parts of the body where there are injuries, degenerative changes, surgeries, wherever there is an increased sensitivity because of inflammation.”

Others say they can predict the weather based on their pain levels.

“So many sunny days and I've said it’s going to rain. People thought I was crazy for a while, but now they know,” said Ashley. “My kids are always asking if it’s going to rain.”

A study currently underway in England suggests there is a connection between weather and pain. Over 9,000 people are participating in The University of Manchester’s Cloudy with a Chance of Pain project, using a special app on their smartphones to record their daily pain levels. The app also captures hourly weather conditions.

Preliminary results show that as the number of sunny days increase, the amount of time participants spend in severe pain decreases. When the weather turns rainy and cloudy, however, the amount of time people spent in severe pain increases.

New Efforts to Ban Kratom in Florida and New York

By Pat Anson, Editor

Federal efforts to ban kratom may be on the back burner – for now --- but that isn’t stopping lawmakers in Florida and New York from introducing bills that would make the sale of kratom illegal in those states.

Millions of Americans use the herbal supplement to alleviate symptoms of anxiety, depression, addiction and chronic pain.

Florida State Rep. Kristin Jacobs (D) has reintroduced legislation that would add mitragynine and 7-hydroxymitragynine – the two active ingredients in kratom – to the state’s list of controlled substances.  Selling, manufacturing or importing kratom in Florida would be a criminal misdemeanor if the bill becomes law.

Similar legislation has been reintroduced in New York by Assemblywoman Aileen Gunther (D), which would make the sale and distribution of kratom punishable with a fine of $2,000. After a third offense, retailers caught selling kratom would also lose their licenses to sell lottery tickets, alcohol and tobacco – a far bigger financial penalty.

A request for an interview with Gunther went unanswered.

“This would be the nail in the kratom coffin for New York wouldn't it?” said Fred Kaeser, the former Director of Health for New York City’s public schools.

Kaeser started using kratom a few months ago and found that it relieved his chronic back pain and reduced his need of opioid pain medication.

“So I find something that helps me to minimize my opioid consumption for my severe chronic pain, and this bill will now force me to reconsider resuming that opioid consumption. Truly amazing isn't it? Let's ban the very substance that helps you to limit your opioid intake,” said Kaeser in an email.

“Why ban something that has very limited empirical research behind it? Yet what research that does exist on kratom suggests promise as a real alternative to opioids. Why not advocate for more research to determine the true risk-benefit of this plant rather than a bill that shuts down that potential promise altogether?”

Kratom or its active ingredients are already illegal in six states (Alabama, Arkansas, Indiana, Tennessee, Vermont and Wisconsin), and came close to being banned nationwide last year.

The Drug Enforcement Administration announced plans in August for the emergency scheduling of kratom as a Schedule I Controlled Substance, the same classification given to heroin, LSD and marijuana. The DEA called kratom “an imminent hazard to public safety” and cited anecdotal reports that the herb was linked to several deaths.  

The emergency scheduling was withdrawn after an unprecedented lobbying campaign by kratom users, retailers and some members of Congress.  Over 23,000 comments were made on a federal website – the vast majority of them supporting the continued classification of kratom as a dietary supplement. The DEA said it would reevaluate its decision and ask the Food and Drug Administration to conduct a full scientific and medical review of kratom.  

Three previous attempts to ban the herb in Florida have failed, but Rep. Jacobs is not giving up. She calls kratom a “scourge on society” and said the American Kratom Association was spreading lies about the herb’s medical value.

“They have a story,” Jacobs told the Florida Politics blog. “Just like Hitler believed if you tell a lie over and over again, it becomes the truth.

“The Kratom Association stands to lose a lot of money if they aren’t able to continue profiting off the misery of addicts.”

In 2015, the Florida Department of Law Enforcement released a report stating that “no pervasive health issues” have been attributed to kratom and the herb “does not constitute a significant risk to the safety or welfare of Florida residents.”

A survey of over 6,400 kratom users by Pain News Network and the American Kratom Assocation found that 98 percent did not consider kratom a harmful or dangerous substance. Three out of four also said they did not get "high" from using kratom.

FDA Approves New Long Acting Painkiller

By Pat Anson, Editor

The U.S. Food and Drug Administration has approved a new extended release opioid pain medication with abuse deterrent properties.

Egalet Corporation announced Monday that the FDA has approved Arymo ER – a long-acting version of morphine -- for the management of pain severe enough to require daily, around-the-clock opioid treatment. It comes in the form of a pill that is very difficult to crush or liquefy, methods used by abusers to speed the release of an opioid into the bloodstream.

"With the majority of ER opioids in easy to abuse forms, it is important that healthcare professionals have additional treatment options like Arymo ER that are resistant to different methods of manipulation using a variety of tools," Bob Radie, president and CEO of Egalet said in a news release.

“Arymo ER has physical and chemical properties expected to make abuse by injection difficult which is important given it is the most common non-oral route of morphine abuse and the most dangerous.”

An FDA advisory panel recommended in a 18-1 vote last August that Arymo be approved. It is is the 7th opioid with abuse deterrent properties approved by the FDA. The other medications are OxyContin, Targiniq, Embeda, Hysingla, Morphabond, and Xtampza.

Arymo has been approved in three dosage strengths: 15 mg, 30 mg and 60 mg. Egalet plans to make the drug available in the first quarter of 2017.

Arymo is the first commercial product developed with Egalet’s Guardian technology, which incorporates the medication into a polymer matrix tablet to make it difficult to misuse or abuse.

“Guardian Technology results in tablets that are extremely hard, very difficult to chew, resistant to particle size reduction, and inhibit/block attempts at chemical extraction of the active pharmaceutical ingredient,” the company says in a statement on its website.

“In addition, the technology results in a viscous hydrogel on contact with liquid, making syringe-ability very difficult. These features are important to address the risk of accidental misuse (e.g., chewing) in patients with chronic pain, as well as intentional abuse using more rigorous methods of manipulation. “

The approval of abuse-deterrent medications is still somewhat controversial. Some medical professionals and anti-opioid activists say the technology does not completely prevent abuse and the drugs are still being misused by addicts.

Wear, Tear & Care: The Edge Desk

By Jennifer Kilgore, Columnist

Let’s talk about how much I hate sitting.

I have two neck fusions, a permanently messed-up thoracic spine, and bulging discs in the lumbar spine. All of these combined make it very difficult for me to sit for long periods of time. This was a large part of why I had to leave the traditional working world and work from home.

I am always looking for improvements to my physical work setup. I already have a kneeling chair that I’d used in my old office, and even that -- my best option -- is something I can only do for a limited period of time before my back flares.

It seemed that coupling a kneeling chair with a normal desk was sometimes an odd combination because the height difference could mean bending my wrists to type (bad) or adjusting my neck (also bad). For some reason, I couldn’t figure out the right height to put the kneeling chair to correlate with my computer monitor.

So the question became, is there a desk that’s made specifically to work with kneeling chairs?

Why yes! There is!

I backed the Edge Desk on Kickstarter in March 2016. Every square inch of my house is occupied by something and I have no extra space. I bought this desk without caring about that.

As of now the desk is sitting in the middle of my office, where it’s blocking the printer and two bookcases (it’s not a big office).

This thing came fully assembled in a huge box in the middle of December. Now I’ve had enough time to use it and gather my thoughts.

courtesy: edge desk

courtesy: edge desk

Thoughts on the Edge Desk

●       It’s ergonomic

There’s something about kneeling that makes you sit up straight. It’s not an uncomfortable sort of straight, though -- a lot of the pressure is taken by your shins and thighs. Most importantly, it doesn’t bother your shins or knees, or at least it shouldn’t. This ensures proper alignment of the spine. I actually also felt like it kept me alert and more awake at my desk in a way that normal chairs do not.

●       It’s compact and light

I am not a strong person. Let’s get this out of the way right now. I am basically an anthropomorphic noodle. However, I can manipulate this desk myself if I try. It’s still something I’d ask my husband to carry for me, were that option to arise -- it’s 25 lbs., though it folds down to an impressive 6 inches and can fit underneath a twin bed for storage. So, once I decide to move it from its current position in the middle of my office, it won’t take up too much room. 

●       Angle of the easel

The really cool thing about this desk is the connected tabletop. It can be flat, or it can tilt at an angle, like an artist’s easel. It can also tilt at a very sharp degree, like an architect’s table.

Most of my work is done on a computer, which this desk can still accommodate, but as some of my spine damage affects my hands, I’ve been trying to think of interesting new activities to work on my manual dexterity. I’ve tried knitting, and now I’m experimenting with calligraphy. This new desk is great for that purpose.

I’m perfectly okay with letting this desk float around my house until we can find a proper place for it. It’s very portable, so at least it won’t be difficult to move around!

courtesy: edge desk

courtesy: edge desk

All in all, I quite like the Edge Desk. It’s very good for people who require an ergonomic setup that is gentle on the spine, yet it’s sturdy enough to travel to an office if needed. And it’s a talking piece, because who else has anything like it?

You can purchase the Edge Desk for $350 through the company’s website.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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.