Common Medical Conditions Linked to Fibromyalgia

By Lana Barhum, Columnist

People with fibromyalgia are more likely than others in the general population to have other chronic conditions. But doctors have yet to figure out why fibromyalgia often coexists with other diseases – what’s known as “comorbidity.”

Fibromyalgia sufferers often have migraines, autoimmune diseases, irritable bowel syndrome, depression, anxiety and sleep disturbances. Having multiple overlapping conditions isn’t easy, and increases physical pain and suffering. 

It is important for all of us with fibromyalgia to learn about these conditions and their symptoms.  Being knowledgeable about them will help us and our medical providers better control our symptoms, pain and overall health. 

Here are several common medical conditions faced by people who also have fibromyalgia:

Migraines:  Research indicates migraine sufferers are more likely to have fibromyalgia. One study from 2011, published in The Journal of Headache and Pain, suggests migraine headaches may even trigger fibromyalgia. Researchers believe preventing migraine headaches could potentially stop or slow down the development of fibromyalgia in some people, or minimize symptoms in fibromyalgia sufferers.

"These results suggest different levels of central sensitization in patients with migraine, fibromyalgia or both conditions and a role for migraine as a triggering factor for FMS. Prevention of headache chronification in migraine patients would thus appear crucial also for preventing the development of fibromyalgia in predisposed individuals or its worsening in co-morbid patients,” Italian researchers reported.

Autoimmune Diseases:  In about 25% of cases, fibromyalgia co-exists with an autoimmune condition, according to the Centers for Disease Control and Prevention.  Two serious autoimmune diseases that may accompany fibromyalgia are rheumatoid arthritis (RA) and lupus. 

Other studies show at least 20% of RA patients also have fibromyalgia, but researchers have yet to understand the connection. The pain of RA can trigger fibromyalgia flares, worsen pain and symptoms, and vice versa. 

In 2016, researchers in the UK tried to determine whether RA patients who also had fibromyalgia had lower levels of joint inflammation.  The results of their study, published in BMC Musculoskeletal Disorders, determined RA patients with fibromyalgia had "widespread soft tissue tenderness but fewer clinically inflamed joints, have higher disease activity scores but may have lower levels of synovial [joint] inflammation."

The researchers suggested that different approaches to treatment may benefit these patients.

"These patients are less likely to respond to escalation of inflammation-suppressing therapy and may be more suitable for other forms of treatment including alternative means of pain control and psychological support,” they wrote.

It is also not uncommon for lupus and fibromyalgia to co-occur.  However, fibromyalgia is no more common in lupus than other autoimmune diseases, according to researchers out of the National Data Bank for Rheumatic Diseases

Depression and Anxiety: People with fibromyalgia frequently experience depression and anxiety.

According to a 2011 report published in the journal Pain Research and Treatment, 90% of fibromyalgia patients have depressive symptoms at least once, and 86% of those people may suffer from a major depressive disorder. Depression and fibromyalgia occur at the same time in at least 40% cases -- a connection that researchers are still trying to understand.

The prevalence of anxiety symptoms in fibromyalgia patients ranges from 13% to about 71%,  according to Portuguese researchers. 

Irritable Bowel Syndrome: A majority of fibromyalgia patients – up to 70% - also suffer from irritable bowel syndrome (IBS), a digestive disorder characterized by abdominal pain, cramping, bloating, diarrhea and constipation.

Sleep Disturbances:  Most people with fibromyalgia report problems sleeping.  No matter how long they sleep, theyrarely feel rested. Restless leg syndrome, non-restorative sleep, and sleep apnea are all sleep issues associated with fibromyalgia.

People with fibromyalgia are more likely to have restless leg syndrome (RLS) than others in the general population, according to a study from the American Academy of Sleep Medicine (AASM). RLS is a disorder that causes uncomfortable feelings in the legs and/or the urge to keep moving the legs. The AASM study, published in the Journal of Clinical Sleep Medicine, finds 33% of people with fibromyalgia also have RLS.  

Up to 90% of fibromyalgia patients experience non-restorative sleep, a feeling of not getting refreshing sleep, despite appearing to have slept.

A 2013 study published in Clinical and Experimental Rheumatology reports that 61% of men with fibromyalgia suffer from sleep apnea, as well as 32% of women. Sleep apnea is a serious sleep disorder where breathing is interrupted during sleep.  

Living with Fibromyalgia and Co-Existing Conditions                 

In addition to suffering from fibromyalgia, I also suffer from three co-existing conditions -- rheumatoid arthritis, depression, and anxiety.  Having both RA and fibromyalgia, I have struggled with more severe symptoms, including muscle and joint pain and cognitive issues.  I know dealing with this debilitating pain results in both depression and anxiety, and both have been frequent visitors to my life.   

I am aware of the effect multiple conditions have on my well-being, and work hard at improving my overall health. I know I can still have a good quality of life, despite the many obstacles that fibromyalgia and its multiple co-occurring conditions present. 

There are other conditions linked to fibromyalgia that I have not mentioned, but they are still significant. Understanding how fibromyalgia and these conditions coexist may someday help researchers develop better treatments for fibromyalgia. 

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.

CDC Opioid Guidelines Are Not Rules or Laws

By Mark Helfand, DDS, Guest Columnist

I am a 62 year old dentist who had to retire 20 years ago due to Chronic Regional Pain Syndrome (CRPS). It started in my right forearm and has spread to all four extremities. Recently it has spread into my shoulders, fingers, knees and thighs.

I have seen numerous pain doctors over the years (that's another story) and have finally found a compassionate, intelligent doctor. He has the knowledge and conviction to be a physician and to treat me properly.

I feel sorry for all the other patients suffering as I do, who are being treated by people with medical degrees that are too stupid or too scared to treat their patients as they swore to do when they graduated from medical school.

Have they forgotten the Hippocratic Oath to do no harm?

The CDC opioid prescribing guidelines are just that -- guidelines -- NOT rules or laws. As a matter of fact, here is a quote directly from the guidelines:

MARK HELFAND

MARK HELFAND

“The recommendations in the guideline are voluntary, rather than prescriptive standards. They are based on emerging evidence, including observational studies or randomized clinical trials with notable limitations. Clinicians should consider the circumstances and unique needs of each patient when providing care."

The so-called "doctors" (and I use the term loosely) that say they cannot prescribe narcotics anymore or cannot prescribe the same dosage, either cannot read, don't care or aren't knowledgeable enough to know what they are doing.

I have had all the past and current mainstream treatments, except hyperbaric oxygen therapy and intravenous ketamine. I have tried and been prescribed most NSAIDs and narcotics.

I am currently taking fentanyl lozenges every three hours as needed and an experimental cream with ketamine that my pharmacist read about in one of his journals.

He sent the paper to me, I brought it to my doctor, we discussed the pros and cons, and my doctor prescribed it for me.

It is helping, but I am not even close to being pain free. However, I am not "stoned" on drugs. If I was, I couldn't write this letter.

I have some semblance of a life and when the pain gets unbearable, I have the ketamine cream and can take the medication I need without having to beg some non-caring doctor in an emergency room. I have been through that and refuse to go through it again.

I genuinely feel sorry for all the chronic pain patients that haven't been as "lucky" as I am. I am cursed with this horrible, excruciatingly painful condition 24/7, but am blessed by a few angels (my pharmacist, my doctor, my niece, and 3 or 4 lay people) that help me live whatever life I have.

I hope this inspires others in my condition to search for their angels.

Dr. Mark Helfand lives in New York.

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.

Pain Research Moving at Snail’s Pace

By Pat Anson, Editor

It often seems like research into new treatments for chronic pain are moving at a snail’s pace.

That's literally the case at the University of Utah,  were scientists are studying conus regius, a small marine cone snail found in the Caribbean Sea. The snail's venom is so potent that it paralyzes and kills its prey.

Researchers have isolated a compound in the snail's venom – called Rg1A4 – that has anesthetic effects that last far longer than opioid pain medication.

When injected into laboratory rats, the compound is cleared from the animal’s body in 4 hours, but its analgesic effect still works 72 hours later.

The duration of that pain relieving effect suggests that Rg1A4 has a restorative effect on some components of the nervous system.

UNIVERSITY OF UTAH PHOTO

UNIVERSITY OF UTAH PHOTO

"What is particularly exciting about these results is the aspect of prevention," said J. Michael McIntosh, MD, a professor of psychiatry at the University of Utah Health Sciences. "Once chronic pain has developed, it is difficult to treat. This compound offers a potential new pathway to prevent pain from developing in the first place and offer a new therapy to patients who have run out of options."

Most pain medications available today work through a limited number of neural pathways and are not sufficient to completely alleviate chronic pain. Opioids also have risky side effects, such as addiction and respiratory depression.

"RgIA4 works by an entirely new pathway, which opens the door for new opportunities to treat pain," said McIntosh. "We feel that drugs that work by this pathway may reduce burden of opioid use."

Researchers around the world are studying the potential medical benefits of cone snail venom. In addition to its analgesic effects, German scientists have found that peptides in the venom decompose quickly and are unlikely to cause dependency.

A pharmaceutical drug derived from cone snails has already been developed and is marketed under the brand name Prialt. The drug is injected in spinal cord fluid to treat severe pain caused by failed back surgery, injury, AIDS, and cancer.

We Need a Declaration of War Against Chronic Pain

By Carol Levy, Columnist

When my neuro-ophthalmologist wrote to a surgeon asking him to evaluate me for trigeminal neuralgia surgery he said, “She is being victimized by her pain.”

After I had undergone a number of neurosurgical procedures and treatments, one of the neurosurgeons wrote back, “We have used every weapon in our armamentarium.”

Many in the pain community use the terms “pain survivor” and “pain warrior.”

Looking at pain in the context of war is easy.  In times of war, the enemy is defined as “something harmful or deadly.”  Pain is certainly harmful.  And some patients die from their pain, some naturally and some, sadly, by their own hand.

The government declares a “war” on opioid abuse. But instead of fighting the abusers, illegal sales, pill mills, criminal cabals, unscrupulous doctors and patients who act criminally, they carpet bomb and ignore the innocent casualties.

The result emboldens the enemy (pain), and winds up costing innocent patients, doctors, insurance companies and ultimately the rest of the country.

It is a proven threat in other ways as well. People living with chronic pain who are employed use more sick days then those without pain. Those whose pain is untreated or undertreated may become disabled and leave the work force altogether. The cost of lost productivity alone is estimated at up to $335 billion a year.

Add in the cost of healthcare and the total economic cost of chronic pain is estimated at $635 billion annually, more than the yearly costs for cancer, heart disease and diabetes.

The government has declared war on those diseases. But for some reason chronic pain and its costs are ignored or denied.

War is a competition between opposing forces. Instead of pain patients and the government working together to appease the scourge of chronic pain, we have chosen sides. One side just wants the pain to go away. The other side cares more about fighting the “opioid epidemic.” The only weapon we have is our voice.

The U.S. Senate repeatedly refused to pass the National Pain Care Policy Act, despite the House passing it in 4 separate sessions, starting in 2005.

Republican congressional leaders now want to replace the Affordable Care Act (Obamacare), which would include the repeal of Section 4305, which calls for more research, education and training in pain care. Another battle being lost by the pain community.

Our goals may be different. As a patient, we want the pain to end. As a country we want the soaring cost of care to end. If we can just find a way to end the pain, we will reduce, and maybe even end, the cost to the country.

It will take more than a detente between the government and pain patients. It requires an alliance – with active involvement on both sides.

War is hell. So too is chronic pain. It is time the battle was joined. By country and by patient.

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.

Tougher Opioid Guidelines for U.S. Military and Veterans

By Pat Anson, Editor

It’s going to be even harder for U.S. military service members and veterans – especially younger ones -- to obtain opioid pain medication.

The Department of Veterans Affairs and the Department of Defense have released a new clinical practice guideline for VA and military doctors that strongly recommends against prescribing opioids for long-term chronic pain – pain that lasts longer than 90 days.

The new guideline is even more stringent than the one released last year by the Centers for Disease Control and Prevention (CDC).

It specifically recommends against long-term opioid therapy for patients under the age of 30.  And it urges VA and military doctors to taper or discontinue opioids for patients currently receiving high doses.

The 192-page guideline (which you can download by clicking here) is careful to note that the recommendations are voluntary and “not intended as a standard of care” that physicians are required to follow.

But critics worry they will be implemented and rigidly followed by military and VA doctors, just as the CDC guidelines were by many civilian doctors.

“I am concerned that many of these veterans with moderate to severe pain who may be well-maintained on long-term opioid therapy as part of a multidisciplinary approach or whom have already tried non-pharmacological and non-opioid therapies and found them insufficient will be tapered off their medication for no good reason except that their physicians will be fearful to run afoul of these new guidelines,” says Cindy Steinberg, National Director of Policy and Advocacy for the U.S. Pain Foundation, a patient advocacy group.

Although much of the research and clinical evidence used to support the new guideline was considered “low or very low” quality, a panel of experts found “mounting evidence” that the risk of harm from opioids -- such as addiction and overdose – “far outweighed the potential benefits.”

“There is a lack of high-quality evidence that LOT (long term opioid therapy) improves pain, function, and/or quality of life. The literature review conducted for this CPG (clinical practice guideline) identified no studies evaluating the effectiveness of LOT for outcomes lasting longer than 16 weeks. Given the lack of evidence showing sustained functional benefit of LOT and moderate evidence outlining harms, non-opioid treatments are preferred for chronic pain.”

The panel of experts was comprised of a diverse group of doctors, nurses and pharmacists within the Departments of Defense and Veterans Affairs, including specialists in pain management and addiction treatment. 

“We recommend against initiation of long-term opioid therapy for chronic pain,” reads the first of 18 recommendations of the expert panel, which said that only “a rare subset of individuals” should be prescribed opioids long term.

Instead of opioids, the panel recommends exercises such as yoga and psychological therapies such as cognitive behavioral therapy to treat chronic pain, along with non-opioid drugs such as gabapentin (Neurontin).

“In light of the low harms associated with exercise and psychological therapies when compared with LOT these treatments are preferred over LOT, and should be offered to all patients with chronic pain including those currently receiving LOT.”

Another strong recommendation of the panel is that opioids not be prescribed long-term to anyone under the age of 30, because of the damage opioids can cause to developing brains. 

“Some may interpret the recommendation to limit opioid use by age as arbitrary and potentially discriminatory when taken out of context; however, there is good neurophysiologic rationale explaining the relationship between age and OUD (opioid use disorder) and overdose.”

Of the seven studies used to support this claim, four were rated as “fair quality” and three were considered “poor quality.”

“That strikes me as an extremely weak evidence base for such a sweeping recommendation,” said Steinberg. “There is no mention of severity of pain condition which is extremely relevant in this population, many of whom sustained devastating and gruesome battlefield injuries such as blown off limbs.”

The panel recommends alternatives to opioids for mild-to-moderate acute pain. If opioids are prescribed temporarily for acute short-term pain, immediate release opioids are preferred.

Risk of Suicide Discounted

Pain is a serious problem for both active duty service members and veterans. A study found that nearly half the service members returning from Afghanistan have chronic pain and 15 percent reported using opioids – rates much higher than the civilian population.

The incidence of pain is even higher among veterans being treated at VA facilities. Over half suffer from chronic pain, as well as other conditions that contribute to it, such as depression and post-traumatic stress disorder. Even more alarming is a recent VA study that found an average of 22 veterans committing suicide each day.

The new guideline recommends that patients be monitored for suicide risk before and during opioid therapy, but curiously there is no mention that undertreated or untreated pain is also a risk for suicide. For patients being tapered or taken off opioids, doctors are advised not to take a threat of suicide too seriously.

“Some patients on LOT who suffer from chronic pain and co-occurring OUD, depression, and/or personality disorders may threaten suicide when providers recommend discontinuation of opioids. However, continuing LOT to ‘prevent suicide’ in someone with chronic pain is not recommended as an appropriate response if suicide risk is high or increases. In such cases, it is essential to involve behavioral health to assess, monitor, and treat a patient who becomes destabilized as a result of a medically appropriate decision to taper or cease LOT.”

Many patients could find themselves being tapered or taken off opioids if the guideline is taken literally by their doctors. The expert panel strongly recommends against opioid doses greater than a 90 mg morphine equivalent (MME) daily dose and urges caution for doses as low as 20 MME. 

“This again fails to recognize that patients differ widely in severity of pain, individual response to medication, body size and weight and tolerance for pain,” says Steinberg.

“I worry that, as we have seen with the CDC guidelines, clinicians will begin tapering patients who may be well-maintained on stable does of medication for fear of running afoul of sanctioned limitations rather than being guided by what is best for their patients. These limitations are in direct conflict with FDA approved labeling which is based on safety and efficacy trials and does not include dose thresholds.”

The VA and Department of Defense opioid guideline will affect millions of service members, veterans and their families. Nearly 1.5 million Americans currently serve in the armed forces and over 800,000 in the National Guard and Reserves.  The Veterans Administration provides health services to another 6 million veterans and their families.

The guideline is the second major initiative by the federal government so far this year aimed at reducing opioid prescribing. As Pain News Network has reported, the Centers for Medicare and Medicaid Services (CMS) has announced plans to fully implement the CDC’s opioid prescribing guidelines.

CMS is taking those voluntary guidelines a step further by mandating them as official Medicare policy and taking punitive action against doctors and patients who don’t follow them. CMS provides health insurance to about 54 million Americans through Medicare and nearly 70 million through Medicaid.

3 Tips to Help Control Inflammation

By Ellen Lenox Smith, Columnist

No matter what chronic illness or condition you may have, we all have issues with inflammation that can add to our pain levels. Inflammation not only causes fluid retention, but can bring on headaches, body aches, brain fog and even subluxations, especially for those of us living with Ehlers-Danlos syndrome.

Did it ever occur to you that something you are ingesting might actually be creating havoc in your body? There is a strong possibility that certain foods and medications may not be right for your system. 

Food Sensitivity

For years, I seemed to be having bad reactions to certain foods, so I began investigating what the problem was.

First, I started with a skin test. I was shocked when I was told everything came back normal, but I knew that just couldn’t be right. So I went to a dietician and had a food sensitivity blood test called the Mediator Release Test (MRT). It worked like magic. The test identified the foods that were not being metabolized correctly by my body, thus causing inflammation and a significant amount of discomfort and pain.

For me the biggest culprits were garlic, ginger and broccoli, but that doesn’t mean they’ll cause the same problems for you. Some people have trouble with nightshade vegetables, such as potatoes, peppers, tomatoes and eggplant.

After getting my test results, I have to admit it wasn’t fun having to “say no” to foods that I loved. But within a short time, weight from bloating was reduced, I could think clearly again, and felt an overall body change in the right direction.

Depending on your level of sensitivity, after avoiding the identified foods for a few weeks or even months, you might be able to successfully reintroduce the foods back into your diet. You should talk to a dietician first, though.

Drug Sensitivity

Another irritant to the body can be an unknown sensitivity to medication. Many of us have no choice but to depend on medications for our medical issues. However, as with foods, you could also be dealing with medication sensitivity.

It was a surgeon from Wisconsin who first educated me about a DNA drug sensitivity test that can identify, through a simple swab in the mouth, what isn’t safe for your body

At the time I was going to a hospital in Wisconsin for surgeries. They couldn’t find anything to help me with pain control, because I seemed to be reacting to everything they tried. I’d reacted badly to medications all of my life, and with a major surgery to face, my surgeon suggested we find out what I was compatible with.

The drug sensitivity test showed I was not able to metabolize aspirin or Tylenol, let alone any of the opiates. But there were two medications I could utilize for pain, and using them helped make the surgery successful.

The beauty of using this test is that you can use it for life. Each time a new medication comes into question, it can be determined in advance whether you are compatible with it. If not, it’ll show what can be substituted instead.

What a dream it would be if all babies had this test at birth to prevent the reactions many of us have had to live through! Imagine taking a new medication knowing it is good for you, will not cause inflammation, or increase the discomfort that raises your pain level.

Candida Infestation

The third thing that you might want to consider, if you suspect something is triggering your inflammation, is candida. We all have yeast in our system, but did you know it gets fed and increases if the body is taking in too much sugar and/or carbohydrates?

If you have tried to lose weight and feel like you almost starved yourself, but still get on a scale and see the pounds going up, then you might have a candida infestation. If you have foul gas, sugar cravings, brain fog, and a general increase of discomfort, candida may also be the culprit.

Your primary care doctor can order a blood test to confirm the presence of candida and there is medication that can eliminate the infestation from your body. For me, as soon as I took the first Nystatin pill at night, I woke up the next morning already seeing a weight loss and an improvement in my overall well-being, including a clearer head!

I hope these three suggestions are helpful. If you have another idea or suggestion, please let us know what that is! We need to pay it forward and help each other improve the quality of our lives.

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.

China Agrees to Crackdown on Fentanyl

By Pat Anson, Editor

China is finally taking steps to stop the production of illicit fentanyl, a synthetic opioid blamed for thousands of drug overdoses in the U.S. and Canada.

China’s National Narcotics Control Commission announced this week that it is “scheduling controls” against four fentanyl-class substances – carfentanil, furanyl fentanyl, valeryl fentanyl, and acryl fentanyl, starting on March 1, 2017.  The announcement came after several months of talks between the Chinese government and the U.S. Drug Enforcement Administration.

"Fentanyl-related compounds represent a significant and deadly component of the current opioid crisis.  These actions will undoubtedly save American lives and I would like to thank my Chinese counterparts for their actions on this important issue," said Acting DEA Administrator Chuck Rosenberg in a news release.

"It shows China's attitude as a responsible big country," Yu Haibin, the director of the Office of the National Narcotics Control Committee, told the Associated Press. "It will be a strong deterrent."

DEA officials say China’s move is a potential “game-changer” in the opioid epidemic, because it will close a loophole that allowed Chinese laboratories to manufacture fentanyl and its chemical cousins legally.

DEA PHOTO

DEA PHOTO

The substances were then shipped to Mexico before being smuggled into the U.S. and Canada, where they were often mixed with heroin or used in the manufacture of counterfeit oxycodone and other painkillers. Traffickers also purchased pill presses from China, according to the DEA.

COUNTERFEIT OXYCODONE

COUNTERFEIT OXYCODONE

“The counterfeit pills often closely resemble the authentic medications they were designed to mimic, and the presence of fentanyls is only detected upon laboratory analysis,” the DEA warned in a report last summer.

Fentanyl is up to 100 times more potent than morphine. It is legally prescribed in lozenges and patches to treat severe pain. Carfentanil is so potent it is used by veterinarians as an anesthetic on elephants.

Illicit fentanyl is mixed with heroin to increase its potency, but dealers and buyers may not know exactly what they are selling or ingesting. Massachusetts, Rhode Island, Ohio and other states have reported an “alarming surge” in fentanyl related deaths. In some states, the number of deaths from illicit fentanyl now exceeds those from prescription opioids.

Two public health researchers have speculated that a “malicious actor” could be behind some of those deaths.

“These highly potent pills could have been created by a malicious actor to intentionally poison consumers or attract the attention of law enforcement to redistributors,” wrote Traci Green, PhD, Boston University School of Medicine, and Michael Gilbert, MPH, Epidemico Inc., in a research letter published in JAMA Internal Medicine.

Waiting for My Pain Medication to Be Stripped Away

By Sheryl Donnell, Guest Columnist

Up until recently, I thought I was coming through this opioid crisis unscathed. My pain management doctor has been with a top clinic for many years and is highly respected and generally above reproach.

We did not have that dreaded conversation virtually everyone else with chronic pain I know has had -- until September 13th, 2016.

That night, I fell and broke 5 bones in my foot, which was already affected with Chronic Regional Pain Syndrome (CRPS). The pain was so incredibly severe.

I laid on the floor from 2 am to 10 am before I could stay alert enough, and not pass out from shock and pain, to get to a phone to call my husband upstairs for help (he is deaf in one ear). It took 4 paramedics to get me off the floor and into an ambulance.

Once at the hospital, even though I was writhing in agony and still passing out literally from pain, the doctor never examined me or my foot. She didn't care I had been on an ice cold floor for 6 hours. All she heard was "chronic pain patient" and she was done with me.

SHERYL DONNELL

SHERYL DONNELL

I begged her to call the pain experts my doctor worked with so she could get some guidelines for treating me, but she didn't see a reason. I asked if she was familiar with CRPS, and she proudly said no and it didn't matter. She sent me for x-rays. No sooner did I get back in my room from another horrifyingly painful experience did she announce nothing was broken and to go home.

I sat there stunned. I had heard the bones break. I knew there were fractures. I begged the nurses to do something. I had not even been given a single Tylenol. This doctor firmly believed I was a drug seeker and wanted to bounce me.

The nurse started reading my discharge papers, which said, "Come back if you have any of these symptoms." I started crying harder. I said I have every one of those right now! She was practically in tears herself.

Then my husband asked, “What will he do when we get home? We can't even get her into the house!” The nurse told him to call the paramedics again to help get me back inside my home, which we did.

My husband called in 24-hour care workers to help me so I could manage a bit. It was agony going to the bathroom, even with a bedside commode my mother brought.

The following morning, the paramedics came back and helped me into the car. We went downtown for a pain injection to try to stop a progression of my CRPS. While there I insisted on new x-rays, which my pain doctor of 9 years grudgingly agreed to -- mostly to shut me up. He said come back in a week for another shot.

I asked for an increase in my pain medication. My biggest shock that day was his response. He said there was no reason for an increase! What? We went home to 24-hour care and instructions to start weight bearing exercises asap!

A full week later with not a single call, we returned to my pain management doctor for my second injection. He casually mentioned the results of my x-rays, which showed that I had 5 broken bones in my foot. No call for an entire week. I was left to think I was nuts and was trying to bear weight on a severely fractured foot!

I was not offered, nor were my requests for additional pain medication granted. I was told to come in every week for four more weeks (in great agony and great difficulty) for pain injections which did very little. However, I did not have a spread of my CRPS.

I did lose about 8 weeks of my life again. My pain levels were so extreme I did nothing but sit in my recliner and do a lot of crying. And realize how lucky I was to have family support, the ability to pay for 24-hour caregivers, and to be believed I was in the kind of pain I said I was in. My adult daughter moved home for a month to help me and my husband with caregiving duties.

What do other people do?

Even after my 6 weeks of pain injections, when I requested a short term increase in pain medication to help me rehab my still very painful foot once I was cleared by my orthopedist, I was again turned down by my pain management doctor.

It is now 5 months after I broke my foot and I cannot complete my rehabilitation because my pain is still so intense. I know if this had happened 5 years ago, I would not be suffering like this.

Even though my pain has worsened and I need to rehabilitate my injury, the CDC has arbitrarily changed the rules and I must suffer. My doctor's hands are tied.

I lose more and more days spent doing things I enjoy or need to do because the CDC’s “experts” sat in a room and made decisions based on flawed data and street drugs; not real patients who follow the rules of their pain contracts and don't seek out multiple doctors or illegal methods to get medication. I follow all the rules, just like 99.5% of my peers.

We are suffering and living in fear that we will be next to have our medication stripped away from us, through no fault of our own. And then the real terror begins.

Sheryl Donnell lives in Illinois. She suffers from CRPS and fibromyalgia.

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.

Magnetic Implant Could Someday Deliver Medication

By Pat Anson, Editor

Over the years scientists have developed a variety of drug delivery systems designed to help patients take medications more safely – from pumps to implants to pills made with abuse-deterrent formulas.

Researchers at the University of British Columbia have now developed one of the strangest ones yet -- a magnetic drug implant -- that could offer an alternative for pain patients who don’t like pills or injections and fear the idea of having a pain pump installed.

“This could one day be used for administering painkillers, hormones, chemotherapy drugs and other treatments for a wide range of health conditions. In the next few years we hope to be able to test it for long-term use and for viability in living models,” said Mu Chiao, PhD, a professor of mechanical engineering at UBC.

COURTESY UBC

COURTESY UBC

The magnetic device – a silicone sponge with magnetic carbonyl iron particles wrapped in a polymer layer – is just six millimetres (about a quarter of an inch) in diameter. The drug is injected into the device and then surgically implanted in the area being treated.

Researchers tested the device on animal tissue in the lab using the prostate cancer drug docetaxel. They found that it was able to deliver the drug on demand even after repeated use. The drug also produced an effect on cancer cells comparable to that of freshly administered docetaxel, proving that drugs stored in the device remain effective.

Passing a magnet over the patient’s skin activates the device by deforming the sponge and triggering the release of the drug into surrounding tissue.

The University of British Columbia released this short video to show how it works:

“Drug implants can be safe and effective for treating many conditions, and magnetically controlled implants are particularly interesting because you can adjust the dose after implantation by using different magnet strengths. Many other implants lack that feature,” said Ali Shademani, a PhD student in the biomedical engineering program at UBC, who was lead author of a study published in the journal Advanced Functional Materials.

Implants such as Probuphine – which was approved last year by the Food and Drug Administration to treat opioid addiction -- cannot be adjusted to deliver different medication levels once they are implanted.

The UBC researchers say actively controlling drug delivery is important not only for treating pain, but for conditions like diabetes, where the required dose and timing of insulin varies from patient to patient.

“This device lets you release the actual dose that the patient needs when they need it, and it’s sufficiently easy to use that patients could administer their own medication one day without having to go to a hospital,” said co-author John Jackson, a research scientist in UBC’s faculty of pharmaceutical sciences.

An Epidemic of Fake Opioid News

By Roger Chriss, Guest Columnist

The New England Journal of Medicine recently published a study called “Opioid-Prescribing Patterns of Emergency Physicians and Risk of Long-Term Use.” It looked retrospectively at Medicare patients and found that some emergency room physicians prescribed up to three times more opioids than others did.

The article did not even mention words such as “abuse” or “addiction” in any context. Moreover, the data was for the period between 2008 and 2011, long before the 2016 CDC opioid guidelines or the various efforts by the FDA, DEA and state governments to restrict opioid prescribing.

The result of this study has been a surprising explosion of fake news about the opioid crisis. It is almost ironic that the spread of this news looks more like an epidemic than the actual opioid crisis does.

The New York Times published the article "Long-Term Opioid Use Could Depend on the Doctor Who First Prescribed It” on February 15, marking the first step in the outbreak of this new opioid meme.

The article noted that the study looked at elderly people in the opening paragraph, but did not mention the decline in opioid prescribing between the study period and the present.

Moreover, the article stated that "as the opioid epidemic continues to devastate communities around the country, the study was the latest attempt to identify a starting point on the path to excessive use.” This was stated despite the fact that all the study showed is that people who take opioids are more likely to become dependent or addicted to them. Clearly this result is both axiomatic and not a priori interesting.

A day later there were more articles, such as “Physicians’ opioid prescribing patterns linked to patients’ risk for long-term drug use” from the Harvard School of Public Health and “How Long You Stay On Opioids May Depend On The Doctor You See In the E.R.” from the Kaiser Family Foundation.  

Both articles add more drama to the study’s results, though each does mention that the study was done on Medicare patients. Oddly, the Harvard article waited until almost the very end to tell us that, as if this is an incidental point with respect to the study and its results.

On February 16, the fake news took a turn toward the dramatic and dire. The Chicago Tribune came up with an article called "Your ER doctor could determine your likelihood of long-term opioid use."  We are told that "physicians are often reluctant to change treatment regimens when patients are happy with what they have,” as an explanation for why doctors were resisting not prescribing opioids.

Vox took the fake news to a whole new level with an article called "Certain doctors are more likely to create opioid addicts. Understanding why is key to solving the crisis."  The Vox reporter provides a quote from the lead author of the study:

“'For patients, Barnett said the message is clear: “Patients should ask their physicians, ‘What are the side effects of me taking this opioid and do you think my pain could be treated effectively [another way], because I know how dangerous these medicines can be."

Opioids have now become dangerous medications.

Now imagine that the first headline from The New York Times had said “Medicare Patients Receive Different Amounts of Pain Medication depending on ER Physician.” That would be a fair a description of what was reported in the original NEJM article.

And consider this alternate interpretation of The Chicago Tribune quote about happy patients: These patients are elderly, at low-risk of addiction, and being treated successfully with a well-known medication. This is not something to worry about, especially since the opioid crisis is being driven by illicit substances used primarily by younger people and outside of medical settings.

Forgotten in all of this reporting is the data from the CDC and other government agencies, which clearly shows that opioid prescribing is down considerably compared to just a few years ago, while at the same time the number of overdoses and deaths involving opioids used illicitly has risen.

The data also shows that most people who abuse opioids are young, not elderly. In other words, physician prescribing is not a major driver in the opioid crisis and Medicare patients are not representative of substance abusers at all.

In a matter of days, an article in a respected medical journal describing a retrospective study of the Medicare population has morphed into some doctors being more likely than others to create opioid addicts and unlucky patients are getting hooked.

This is an epidemic spread of fake news, of a dangerous meme, and of a new challenge for chronic and intractable pain patients. Accurate information is the best defense, but that takes work.

Roger Chriss suffers from Ehlers Danlos syndrome. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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.

The 411 on Calmare Scrambler Therapy

By Michael Cooney, DC, Guest Columnist

As a chiropractor who treats various pain conditions caused by injury or disease, my biggest frustration is when our therapies do not achieve a successful patient outcome.

Often, “treatment-resistant” patients are forced to seek out more invasive procedures – surgeries, spinal cord stimulators, or powerful narcotics such as ketamine − where success has been uneven, but side effects can be significant.

I wasn’t comfortable recommending these “next level” neuropathic pain treatments for my patients. So my partner Dr. Robert Kelly and I spent two years looking for a non-invasive therapy that didn’t cause pain or come with added side effects.

Through a contact in Italy, we discovered Calmare scrambler therapy, which treats several types of drug and treatment-resistant pain, a big plus for our practice. After undergoing clinical training to use the machine and eventually testing it on patients, we saw results after just a few treatment sessions, in the majority of cases.

I’ll be honest, our aim in adding Calmare to our treatment offerings was designed to help our patients who were not responding to traditional pain therapies. No one was more surprised than I to experience the global interest in this alternative treatment option.

We have been performing Calmare Therapy since 2011, treating patients from coast-to-coast and as far away as Australia, the UK, South Africa and Brazil.

Today, we treat children, adults and seniors battling CRPS/RSD, fibromyalgia, neuropathy after chemotherapy treatment, and pain that develops after surgery or from diabetes. We have also treated many people with neuropathic pain after a shingles diagnosis.

How Scrambler Therapy “Talks” With the Brain

The brain’s reaction to pain can be compared to learning to play the piano or memorizing a poem. The more the body processes pain, the stronger the connections between pain nerves and the brain become.

When someone is injured, the brain sets up a process to heal the injury. For example, cells carry away dead tissue or it increases blood flow to the injured area. Eventually, the brain realizes the injury has healed, and cuts off the pain message.

But for some people, the brain never sends the all-important message: “There’s no more injury here. You can stop sending that pain signal.”

That’s where Calmare scrambler therapy comes in.

Using small electrodes (think EKG pads) judiciously placed in the region of the injury, the device sends a mild electric signal to the brain through the electrodes.

This message overrides the brain’s confused pain signal and corrects it to a “there’s no pain here” message.

We recommend a series of 10 daily scrambler treatments. But in many cases, the pain is lessened for the patient as soon as the first treatment.

The machine we use, the MC-5A Calmare device, has been tested in clinical trials at some of the most prestigious research institutions, including the Massey Cancer Institute at Virginia Commonwealth University, the Mayo Clinic, and the American Society of Clinical Oncology. Their studies reported significant reductions in pain associated with cancer treatment and other chronic pain conditions.

The Value of Alternative Medicine in Treating Neuropathy

The majority of patients we treat with scrambler therapy come to us frustrated and exhausted by the endless search for pain relief. They have often resorted to unproven surgeries, experimental procedures, or have used powerful pain medications that leave them mentally and physically debilitated by the drug’s side effects.

I encourage people with treatment-resistant neuropathy and their families to research and consider less invasive, alternative solutions to combat the effects of chronic pain. In some cases, the cost can be comparable to prescription medications and in-patient co-pays. The outcome can be life-changing.

Regardless of the pain therapy you choose, keep in mind there are treatments that do not involve narcotics, surgery or invasive procedures, which can result in more pain and discomfort.

Keep looking -- network with people who have your medical condition, conduct your own research, and reach out to doctors who understand the value of alternative therapy. Ask the provider to put you in touch with another patient who had the treatment. We enthusiastically offer this service through our Patient-2-Patient program.

There may very well be a solution out there to minimize your pain. But often, it’s up to you to discover it.

Michael J. Cooney has been a doctor of chiropractic for more than 30 years at Rutherford Allied Medical Group and Calmare Therapy NJ in Rutherford, New Jersey. He is one of six certified providers of Calmare in the U.S. Dr. Cooney can be emailed at calmarenj@gmail.com.

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.

How Have the CDC Opioid Guidelines Affected You?

By Pat Anson, Editor

Next month will mark the one year anniversary of opioid guidelines released by the Centers for Disease Control and Prevention – guidelines that discourage primary care physicians from prescribing opioids for chronic non-cancer pain.

At the time of their release, the CDC estimated that as many as 11.5 million Americans were using opioid medication daily for pain relief. Many of those patients now say their doses have been abruptly lowered or they are unable to obtain opioids at all.

That could be a good thing, depending on your point of view about the nation’s so-called “opioid epidemic.” Former CDC director Thomas Frieden, MD, has called the guidelines an “excellent starting point” to stop an epidemic fueled by “decades of prescribing too many opioids for too many conditions where they provide minimal benefit.”

Many pain patients disagree, saying they’ve used opioids safely and effectively for years. They say the guidelines have had a chilling effect on many of their doctors and are being implemented in ways that go far beyond what the CDC intended.  

“Last year, when the CDC ‘recommendations’ came out, the entire building of the only doctor's office I can go to decided they were rules, and cut me from 210 mg/day morphine to 90 mg. Now they say they can only give me 60 mg/day,” wrote Eli, one of hundreds of patients we’ve heard from in the past year.

“I'm in so much pain I can't properly care for myself, nor get to town for supplies when I need them. I've become increasingly more disabled and dependent on others.”

“My pain management doctor told me that the CDC required that all morphine be taken away from all Americans,” wrote a California woman who suffers from severe back pain. “He even stated that surgeons were sending home their post-surgery patients with Motrin, nothing else.

“What are you people in the CDC doing? Don't you realize how paranoid doctors can get? You may think using the term ‘guideline’ will help them understand what you are trying to do, but you have created a bunch of neurotic paranoids. Stop it. Do something before you kill all of us.”

“I am a 76 year old intelligent woman who is not an addict or an abuser, yet I am denied relief from unremitting pain even after 20 years of trying every drug and treatment modality available,” wrote Roberta Glick. “I am at a total loss as to what to do, how to fight, etc.  My physician is a strong supporter.  He is not the problem. He also is a victim of misguided CDC attempts to curb drug addiction.”

Are the CDC guidelines voluntary or mandatory? Have they improved the quality of pain care? Are patients being treated with safer and better alternatives? Most importantly, are soaring rates of opioid abuse and addiction finally being brought under control?

Those are some of the questions Pain News Network and the International Pain Foundation (iPain) are asking in an online survey of patients, doctors and other healthcare providers.

“I strongly believe that as these guidelines are implemented by doctors and hospitals around the country there are important lessons to learn from those who are affected by them,” says Barby Ingle, president of iPain and a PNN columnist.

“I hope that pain patients and providers participate in this survey so that we can begin to show how deep the impact actually is to the chronic pain community one year later.” 

The online survey consists of less than a dozen multiple choice questions, which should take only a few minutes to complete. Please take time out of your busy day and complete the survey by clicking here.

The survey findings will be released on March 15th, the first anniversary of the CDC guidelines. By taking the survey, you can also sign up to have the results emailed to you.