How Doctors Can Make Complex Pain Conditions Worse

By Madora Pennington, PNN Columnist

“You are teaching your child to be in pain, just like you. This is caused by anxiety, and she is learning it from you,” the emergency room doctor told Sondra Benson (not her real name) about her 15-year-old daughter.

Benson and her daughter both have Ehlers-Danlos Syndrome (EDS), a condition that causes ligaments, cartilage and other connective tissue to be fragile. Pain and fatigue are major complications of EDS, and many who have it suffer from migraines. Benson’s daughter was in the ER because she was having a hemiplegic migraine, a severe type of migraine which causes paralysis on one side of the body.

That night in the ER, the doctor’s orders were barbaric. He disregarded advice from the girl’s pediatric neurologist and refused to give her medication. Instead, he had her sit in a chair — not even in a hospital bed — and told her to “wait it out.”

Because Ehlers-Danlos is such a complex condition affecting many bodily systems, patients are often labeled as “difficult.” And when doctors mistreat them or even act punishingly towards them, it can make their health worse. For patients like the Bensons, these distressing, unproductive and hostile interactions tend to happen over and over again.

The cumulative effect on EDS patients of such negative experiences has been termed “clinician-associated traumatization” in a recently published study in the journal Qualitative Research in Health. In interviews with 26 EDS patients, 89% said that clinicians had disrespected them and treated them unprofessionally. Another 92% said clinicians had invalidated them.

Patients treated this way become reluctant to seek medical care. They have classic PTSD symptoms, such as triggers, flashbacks, irritability and hypervigilance. They’re also left with psychological wounds. They doubt themselves, become fearful of doctors, and lose trust in the healthcare system. They’re also less likely to follow orders and stick to treatment plans.

‘They Don’t Believe Me’

After being denied appropriate medical treatment in the ER, Benson’s daughter now resists going to the doctor. “What’s the point?” she says. “They don’t believe me and aren’t going to help me.”

Undoing the damage from events like these is not easy or simple. Despite having therapy for her medical trauma and being on antidepressants, the teenager still struggles with her self-esteem.

The study by researchers at Indiana University’s School of Medicine is groundbreaking for showing that trauma can come from difficult medical appointments and counterproductive treatment. Traditionally, medical trauma has been described in limited ways, such as the anguish that comes from a sudden brush with death, like an accident or cancer diagnosis.

Trauma for a medically complex patient begins early and accumulates over time. The patient struggles with mysterious health problems and is unable to get a conclusive diagnosis. This may go on for years, as the patient sees specialist after specialist with no clear answers. Doctors may treat such patients with suspicion. That makes the patient doubt themselves and weakens their desire to seek answers and treatment.

Even when they get a correct diagnosis, patients may not fare better. The repeated disrespectful, humiliating and hurtful encounters with doctors whittles away at their confidence and sense of security.

“We have found that negative encounters lead to a breakdown in the patient–provider relationship, even when experiences are primarily of inadvertent slights or… insults and invalidations,” wrote lead author Colin Halverson, PhD, an investigator at Indiana University’s Center for Bioethics. 

“Repeatedly being dismissed as ‘exaggerating’ and ‘inventing symptoms’ causes patients to lose faith in the healthcare system and in their ability to assess and advocate for their own best interests. This results in anxiety about returning to specific clinicians and avoidance of healthcare settings altogether. Ultimately, this means that patients suffering from clinician-associated traumatization experience worse – but preventable – health outcomes.” 

The EDS patients interviewed for this study thought that the clinicians who had mistreated them were clueless about the harm they caused. Many believe that insufficient education in medical school about treatments for their disease brought out this behavior. Their lack of knowledge made them behave badly and arrogantly.  

Benson has come to the same conclusions from her own experiences and those of her daughter.  

“I think the medical profession could use some empathy classes and training on chronic, long term, with no cure illnesses,” she told me. “We overvalue doctors and give them god like complexes, so when they don't know the answer, they feel threatened and act foolishly.” 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

Medical Cannabis Helps Pain Patients Stop or Reduce Use of Opioids

By Pat Anson, PNN Editor

A large new survey of medical marijuana users found that many who have chronic pain were able to reduce or even stop their use of opioid pain medication. The survey also found that pain patients reported less pain and better physical and social functioning once they started using medical cannabis.

Researchers at Emerald Coast Research and Florida State University College of Medicine surveyed 2,183 people recruited from marijuana dispensaries in Florida. Participants had a range of health problems, including chronic pain, anxiety, depression, insomnia and post-traumatic stress disorder (PTSD).  Most were using medical cannabis daily.

Answers to the 66-question online survey revealed that nine out of ten participants found medical cannabis to be very or extremely helpful in treating their medical conditions.

Most (61%) reported using opioid pain medication prior to medical cannabis. Of those, 79 percent reported either stopping (42%) or reducing (37%) their use of prescription opioids. A small number were also able to stop using psychiatric medications for anxiety, depression and PTSD.

“The majority of Florida medical cannabis users surveyed described medical cannabis as helpful and important to their overall quality of life. Notably, a large percentage of patients reported improvements in the areas of physical functioning, social functioning, and bodily pain after beginning medical cannabis,” wrote lead author Carolyn Pritchett, PhD, founder of Emerald Coast Research.

“We also found a substantial number of patients reduced the amount of OBPM (opioid-based pain medications) used after gaining access to legalized medical cannabis, with some patients specifically describing improved functioning in daily life as a result.”

The survey findings, published in the journal Substance Use and Misuse, lend credence to previous studies suggesting that legalization of cannabis leads to fewer prescriptions for opioids and other medications.

A recent study by researchers at Cornell University found that legalization of recreational marijuana in 11 states significantly reduced prescribing for Medicaid patients for a broad range of medications used to treat pain depression, anxiety, seizures and other health conditions.

A 2021 study of chronic pain patients being treated at medical cannabis clinics also found that most were able to stop or reduce their use of opioids. Almost half (48%) reported a significant decrease in pain, and most said they had better quality of life (87%) and better physical function (80%) while using medical cannabis.

A 2021 Harris Poll found that twice as many Americans are using cannabis or CBD to manage their pain than opioid medication.

VA Studying Laughing Gas as Treatment for Veterans With PTSD

By Pat Anson, PNN Editor

The U.S. Department of Veterans Affairs is sponsoring a small study to see if nitrous oxide – commonly known as laughing gas – could be used as a treatment for veterans suffering from post-traumatic stress disorder (PTSD), pain and depression.

The placebo-controlled Phase 2 study will be held at the VA Palo Alto Health Care System in California this fall. Investigators plan to recruit 104 veterans with PTSD to participate. Half would inhale a gaseous mix of nitrous oxide and oxygen, while the other half would be given a placebo.

Although PTSD is the primary focus of the study, researchers also hope to learn if nitrous oxide could be used to treat pain and other symptoms.

“Specifically, the investigators will first assess whether nitrous oxide treatment improves PTSD symptoms within 1 week. In parallel, the investigators will explore whether the treatment improves co-existing depression and pain,” researchers said. “In addition, the investigators will explore nitrous oxide's effects on a PTSD-associated impairment that is often overlooked - disruption in cognitive control, a core neurobiological process critical for regulating thoughts and for successful daily functioning.”

Military veterans suffering from PTSD often experience pain, anxiety, anger and depression. About one in five veterans who served in the Iraq or Afghanistan wars developed PTSD within a year of coming home.

In a small pilot study funded by the VA, three veterans with PTSD inhaled a single one-hour dose of nitrous oxide through a face mask. Within hours, two of the patients reported a marked improvement in their symptoms. The improvement lasted one week for one patient, while the second patient's symptoms gradually returned over the week. The third patient reported an improvement two hours after his treatment, but his symptoms returned the next day.

"While small in scale, this study shows the early promise of using nitrous oxide to quickly relieve symptoms of PTSD," said anesthesiologist Peter Nagele, MD, chair of the Department of Anesthesia & Critical Care at University of Chicago Medicine and co-author of a study recently published in the Journal of Clinical Psychiatry.

Nitrous oxide is a colorless and odorless gas that is commonly used by dentists to manage pain and anxiety in patients. It was once widely used in American hospitals to relieve labor pain, but fell out of favor as more Caesarean sections were performed and women opted for epidural injections and spinal blocks.

Some hospitals are now reintroducing nitrous oxide as a safer and less invasive option. The gas makes patients less aware of their pain, but does not completely eliminate it.  Recent studies have shown that about 70% of women who receive nitrous oxide during labor wind up using another analgesic due to inadequate pain relief.

"Like many other treatments, nitrous oxide appears to be effective for some patients but not for others," explained Nagele. "Often drugs work only on a subset of patients, while others do not respond. It's our role to determine who may benefit from this treatment, and who won't."

If findings from the VA’s pilot study are replicated in further research, it may be feasible to use nitrous oxide for rapid relief from PTSD, while longer-term treatments like psychotherapy and pharmaceutical drugs are also implemented.

You Can Get PTSD From Poor Healthcare

By Barby Ingle, PNN Columnist

I thought I would be a cheerleader and coach my whole life... and I will, just not physically.

I had to adapt the mental aspects of cheerleading to living with Reflex Sympathetic Dystrophy (RSD), so I found a way to keep cheering despite my physical disabilities. I also had to deal with post-traumatic stress disorder (PTSD) caused by poor treatment from medical providers.

Most people think of PTSD as something people develop during service in the military or in other stressful jobs. But PTSD can come from other traumatic situations, including chronic illness.

According to McMaster University, up to 60% of patients discharged from an ICU will suffer from PTSD. Symptoms can appear months after being hospitalized and may include anxiety, trouble concentrating, recurring flashbacks and nightmares.

My long-term providers have been great, but if I didn’t learn to get my emotions under control (mostly sadness from what I had lost due to RSD), I would not have gotten the care that I needed. I had to have a plan, stay organized, and on-topic when I went to the doctor.

Those are some of the lessons I’ve learned that help me cope with PTSD. I also get psychological help when I need it, rather than avoid the emotional stress, anger, fear and anxiety. I am not perfect at this. but I do recognize that I have PTSD and knowing it is half the battle.

It is important when setting your expectations as a patient to know if your provider is willing to add new treatments and procedures to their practice, so they can grow with your needs. Many providers will only suggest a single treatment because they make a living on that one option.

If they don’t like an alternative treatment, you may hear them say things like, “There is not enough evidence for that” or “You’ll have to do this before we can do that.”

Don’t get mad if your provider doesn’t offer a specific treatment that you want. Find one who does. Creating a supportive medical care team takes time, respect and trust in all of your providers. It is up to the patient to make their team, be involved with their care, and find the right providers.

The healthcare system in the United States is primarily set up for acute care, so navigating your way through it can be a challenge when living with a chronic or rare condition. Americans are taught as children to trust and believe in the white coats. You break a bone, get a strep throat or need stitches, you go to the doctor, get treated and leave.

I had to learn that's not always true when it comes to chronic conditions. Some ER providers don’t know how to help a chronically ill person in an acute care situation. They’re taught to take care of mental health concerns first, then physical ones.

When I changed how I talked with providers and stayed on track for the reasons I was there, I got better treatment. It took me almost three years to figure that out, but it is always possible to learn the tools and grow.

Here are four tips about going to the ER if you have PTSD from poor medical treatment.

1. Set good expectations for yourself and have a flexible plan in place. If they don’t provide the treatment you need, go to another hospital without a fight or confrontation.

2. Become aware of what they're saying and doing around you. Make a video or audio recording if that is allowed in your state. You can use it for documentation and to review later.

3. Improve your sense of self by knowing as much as you can about your chronic condition. Providers will notice if you are knowledgeable.

4. Keep it simple when dealing with the provider. Just like at a business meeting, if you put too many action items on the agenda, people will tune out or be overwhelmed.

Another tool is to learn about PTSD, how to avoid it, and about being gaslighted for having a chronic illness. Gaslighting is when someone tries to manipulate you and make you doubt yourself in order to do something that they want. I have been successful at skipping the gaslighting over the years. I think others can too, if they have the right tools.

As a patient, you can take control. I approach my healthcare with the attitude that providers are tools for me and that I am responsible for my own care. Being in control can help prevent PTSD and a host of other problems.

Don’t get mad. Go to another provider until you find the care you need. Especially when you feel wronged or not heard.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

Can We Forget About Chronic Pain?

By Ann Marie Gaudon, PNN Columnist

I recently came across a clinical report which describe two patients with a lengthy history of chronic pain severe enough to warrant opiate therapy. Both patients experienced sudden memory loss and forgot about their pain – literally.

Central sensitization is a process known to occur in the spinal cord and brain where if short-term acute pain is allowed to persist, then changes occur within the central nervous system which can lead to chronic or intractable pain.

That’s what happened to me. I have a diagnosis of a visceral pain syndrome, as opposed to a progressive pain condition. I experienced one vicious organ assault and after more than 30 years of it being healed, I remain in pain.

Other patients who have experienced painful trauma may relive painful episodes that evoke recurring memories -- they experience their pain over and over again. That is a classic symptom of post-traumatic stress disorder (PTSD). Think of a war veteran or survivor of sexual violence.

Either way, neurophysiologic changes which relate to learning, memory and pain can result in a maladaptive learning process which leaves one in chronic pain. These intricacies happen outside of conscious awareness. We are not aware of or in control of this dysfunctional process while it is occurring within our brain and spinal cord circuits.

Here is an overview of the two patients discussed in the report:

Patient #1

The first patient is a 47-year old female with complicated health problems. She had undergone multiple surgeries and treatment modalities for gastric ulcers, endometriosis, thyroid cancer, hypothyroidism, seizure disorder, malnutrition and chronic abdominal pain over 10 years.

Her pain was managed with high doses of opiate medications in various forms, including intravenous, transdermal and oral. During a complex 12-month hospital stay, she had at least five seizures and suffered memory loss so severe she could not remember her entire stay in the hospital.

She did eventually become fully alert and oriented to the present, but she no longer complained of her pain symptoms and no longer demonstrated a need for consistent pain medication.

Six months after discharge, the patient was living at home in stable condition and only occasionally using tramadol. She reported her symptoms as minimal and 1-2 on the pain scale. She still has no memory of many aspects of her long hospitalization.

Patient #2

A 57-year old male was described as a “highly functioning architect” with a 10-year history of low back and right extremity pain. He had undergone many unsuccessful treatments for pain, including surgery, and was being admitted to hospital to have an intrathecal pump surgically implanted for pain control. He was taking no less than nine medications for pain including high doses of opiate therapy.

Initially after the pump was placed, he reported having a partial reduction of pain in his leg. However, in the next six months he was requesting higher doses of intrathecal as well as oral opiates.

One month after this, the patient was in a minor motor vehicle accident where he did not lose consciousness, but inexplicably had partial memory loss. His physicians felt the accident was not the cause, as the memory loss symptoms occurred long afterward. The cause of the amnesia was unknown and tests including a brain MRI showed as normal.

The patient could not remember the names of his doctors, where he lived, what type of work he did, or why he had a pain pump implanted. He was weaned off opiates without any complaint of increased pain and subsequently had the pump removed at his request.

Eight months later, this patient was found minimally responsive in his home. It is not known what occurred, but there was a suspicion that he had fallen and incurred a head injury. The patient experienced profound memory loss, with no memory of who he was, his family members or his back pain.

His pain medications were discontinued with no complaint of pain, but he required placement in a long-term care home due to severe amnesia. Over the next two years, this patient regained partial memory, along with some back and leg pain. He has not requested or required opiate therapy.

Emotions, Pain and Memory

We know pain perception can be caused by nociceptive stimuli, yet we also know that emotional and psychological factors can increase our perception of pain. A complex play of nerve fibers which transmit messages to the brain and spinal cord suggest there is a relationship between emotions, pain and memory. The best evidence that memory plays a role in pain is that of phantom limb pain.

The two cases presented here suggest that memory may influence the perception of pain, and that amnesia can be accompanied by a loss of or significant reduction of pain in the absence of any physical factors.

Treatments that reduce “pain memories” in the brain and spinal cord, along with a focus on preventing pain to reduce or eliminate these memories, may someday have a more widespread role in the management of chronic pain. To have a treatment or ability to effectively erase a maladaptive pain memory leaves me with just three words:

Count me in.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management. 

Ann Marie has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about her counseling services, visit her website.

This column 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.

Honoring Our Veterans on Memorial Day

By Dr. Lynn Webster, PNN Columnist

On Memorial Day, we honor those who lost their lives while serving in the United States military. It is a time when we should also acknowledge the sacrifices all veterans have made, and continue to make, for our country.

Physical and mental trauma are some of the most devastating consequences veterans suffer as a result of their sacrifices. Opioid drug use in military populations is nearly triple that of civilian populations.

A 2014 JAMA study reported that more than 44 percent of active-duty U.S. infantry soldiers suffered from chronic pain. Other reports state that combat injuries cause most of the chronic pain.  

That doesn't surprise me. I've received many emails from veterans who describe their struggles to find treatment for the pain they acquired during their military service.

Here are three typical stories from veterans:

A Persian Gulf veteran, John, is being forced to slowly taper from a combination of opioids that he claims worked for him. His dose of medication is being tapered because his physician feels pressured to comply with recommendations of the CDC Opioid Prescribing Guideline.  

John is afraid that the new limit will be inadequate to treat his pain.  

"I am VERY upset with my government, as their draconian 'solutions' to the perceived 'drug problem' will only exacerbate pain issues with legitimate chronic pain patients. I don't think their efforts will have ANY effect on the illegal drug problems that plague the U.S.," John wrote me.  

He may be more fortunate than others. At the time John contacted me, he had a pain specialist who was still able and willing to support his need for treatment. 

Others have not been as lucky. Mark is a 100% disabled veteran with post-traumatic stress disorder (PTSD), severe lower back pain and severe knee problems. After surgery, Mark was only able to get a two week supply of pain medicine. For two and a half months, he suffered without any medication until he was able to go outside the VA system to obtain oxycodone.  

Then there is Jason. He is a young American hero who used opioids to self-medicate his PTSD and chronic pain. His story may help people understand why there are approximately 20 suicides each day by America's veterans.  

Although firearms are a common method of suicide with veterans, the use of prescription medication has also been implicated. Having access to opioids gives veterans a less violent way to end their lives. 

Unfortunately, the number of veteran suicides may even be underreported. As many as 45 percent of drug overdoses -- including those of military members -- might be related to suicide, according to a former past president of the American Psychiatric Association. 

Veterans' suicides make up 18% of all suicides in the U.S. The suicide rate among members of the military is nearly 3 times that of civilians.  In 2012, for the first time in a generation, the number of active duty soldiers who killed themselves exceeded the number of soldiers who were killed in battles.

Approximately 20% of recent war veterans suffer from PTSD, in addition to chronic pain. PTSD was the most common mental health condition for almost 1 million soldiers who served between 2001 and 2014. Nearly one in four of those who served during those years developed PTSD within a year of coming back home. 

Much of the general public and many mental health professionals have doubted that PTSD was a true disorder until recently. Even now, soldiers with symptoms of PTSD face rejection by their military peers and are often feared by society as potentially dangerous. Movies ranging from "American Sniper" to "Thank You for Your Service" frequently depict characters with PTSD struggling to fit into society.  

In real life, those with PTSD symptoms are often labeled as “weak” and removed from combat zones, and sometimes they are involuntarily discharged from military service. 

These disturbing trends are difficult to read anytime, but they seem especially troubling as we commemorate Memorial Day. This is the time for us to acknowledge that those who have served our country deserve the best medical care available.  

Five years ago, retired Gens. Wayne Jonas, MD, and Eric Schoomaker, MD, wrote a commentary in JAMA titled “Pain and Opioids in the Military: We Must Do Better.” Recognizing that veterans often misuse opioids to self-medicate mental health disorders, they proposed teaching members of the military a greater degree of self-management skills such as problem-solving and goal setting.   

Of course, self-management would be preferable to using opioids if it were sufficient to afford veterans a quality of life they deserve. However, teaching self-management skills is often insufficient. That is clear in the cases of John, Mark and Jason. 

On Memorial Day, I hope we can take a moment to think about the men and women who have fought -- and sometimes died -- for a country they believed in.  

I also hope we honor the living by showing them that they deserve treatment for their chronic pain, PTSD, addiction and any other health care issues they may have. We owe it to them. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and is author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

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.

Finding Validation at the Migraine Symposium

By Mia Maysack, PNN Columnist

It was an honor to attend the annual Migraine Symposium and Awards Dinner held by the Association of Migraine Disorders (AMD) this past weekend at Brown University in Providence, Rhode Island.  

At the symposium there were more than 25 experts covering topics from breakthroughs in migraine research, emerging technology, holistic treatments, medicinal cannabis and one of the most painful conditions known to mankind: cluster headaches.        

As someone who lives with multiple brain diseases and disabling chronic intractable pain, sharing space with migraine community members and healthcare professionals that sincerely care made the occasion extraordinarily meaningful to me.

I was introduced to many exceptional human beings, each of whom I could easily write a column about, but for now I'd like to shine the spotlight on the President of AMD, Dr. Frederick Godley.  Not only is he an extraordinarily intelligent and kind soul, his positive attitude illuminated the entire room

#ShadesforMigraine

Let me share one of the very first moments of validation I'd ever experienced as a person living with migraine and cluster headaches caused by post-bacterial meningitis. Having inquired with many healthcare professionals as to whether or not I am living with a traumatic brain injury (and been disregarded by each and every one), my eyes fill up with tears while rejoicing when I write that although I am not a patient of Dr. Godley or being treated by him, he acknowledged that possibility.  

At the end of the day, it doesn't do those of us coping with severe ailments much good to fixate on any specific diagnosis. What's most important is we find a way to manage whatever hand we are dealt. But the validation helps. There have been moments when I've begun to question my own sanity. There's no possible way my head could be hurting *this* bad or for *this* long. Most others are in persistent disbelief as well, even though I crack jokes that if I were to ever wake up pain free, then I must be dead!

I am grateful that I am not and tremendously excited about the future possibilities in migraine treatment. Considering that for about 30 years one of our only options was a small class of medications, now is the best time to get involved in the migraine community because we're moving forward with such momentum. There have been funds granted for much needed further research.

PTSD and Psychedelics

Some other thoughts about the symposium:

The very significant validation that post-traumatic stress disorder (PTSD) is a common underlying element of pain or even a potential cause of it. Think about it. If your own body feels as though it is fighting and turning against you on a daily basis, how are we to live without stress or experience any sense of security? 

It's not as common as it should be to go into a doctor's office and be addressed as an entire person. In my experience it has been: “Let's do what we can to mask the symptoms and settle on normalizing what’s left.” That is not treatment. Unacceptable.

The same small class of medications that are one of the only options for people living with ongoing head pain have a similar chemical makeup to Psilocybin, a psychedelic compound found in mushrooms. Psilocybin and LSD are beginning to have more credibility as potential options in treating Trigeminal Autonomic Cephalalgia (TAC) or cluster headaches. There's hope they could be helpful in treating other conditions as well, despite the fact they've got an overall reputation as being hazardous drugs. 

Ever come across a rule that just seems absolutely ridiculous? That's kind of how I feel about the current classification of these substances. We all know it only takes one person to essentially ruin things for everyone else. As a result, most people think this kind of stuff only causes harm and chaos.  No one is suggesting that anybody should go to their local drug dealer and score a bag of whatever -- we’re discussing potential. It all boils down to the science and our focus here is solely medicinally related.

Much like we've been exploring the use of CBD without THC, we are moving forward with learning more about these other substances -- potentially without the psychedelic or hallucinogen properties. Perhaps they're needed to induce relief. And if that is the case, in what micro-dosage could this possibly be prescribed in a safe, effective way?     

Although I am not using them, I've known others who’ve had successful results. In the proper way and for the right reasons, I have also chosen to advocate for them, as there seems to be far less complications with more natural options than those from the pharmaceutical realm. Each approach has its rightful place and there's no one-size-fits-all for everyone. 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

Study Finds Vagus Nerve Stimulation Delays Pain Signals

By Pat Anson, PNN Editor

Neuromodulation devices that stimulate a key nerve in the neck – the vagus nerve --- have shown potential in treating a variety of chronic pain conditions, including migraines and autoimmune diseases. A new study helps us understand how the devices work.

Researchers studying post-traumatic stress disorder (PTSD) found that vagus nerve stimulation appears to dampen and delay how the brain responds to pain signals.

"It's thought that people with certain differences in how their bodies -- their autonomic and sympathetic nervous systems -- process pain may be more susceptible to PTSD," said Imanuel Lerman, MD, a pain management specialist and associate professor at the University of California San Diego School of Medicine. “And so we wanted to know if we might be able to re-write this 'misfiring' as a means to manage pain, especially for people with PTSD."

UC SAN DIEGO HEALTH

Lerman and his colleagues at Veterans Affairs San Diego Healthcare System used functional magnetic resonance imaging (fMRI) to get a look at the brains of 30 healthy volunteers after a painful heat stimulus was applied to their legs.

Half were treated with vagus nerve stimulation (VNS) for two minutes -- via electrodes placed on the neck – before the heat stimulus. The other half received a mock stimulation.

Researchers found that VNS delayed the response to heat stimulus in several areas of the brain known to be important for sensory and emotional pain processing. These pain-related brain regions were activated ten seconds later than participants who received sham stimulation. Volunteers who received VNS also sweated less in response to the heat.

“Not everyone is the same -- some people may need more vagus nerve stimulation than others to achieve the same outcomes and the necessary frequencies might change over time -- so we'll need to personalize this approach," said Lerman, who reported his findings in the journal PLOS ONE.  "But we are hopeful and looking forward to the next steps in moving this approach toward the clinic."

The next step for researchers is to conduct a clinical study of VNS on military veterans in the San Diego area. They want to determine if at-home vagus nerve stimulation can reduce emotional pain and neural inflammation associated with PTSD. People with PTSD often have intrusive memories, negative thoughts, anxiety and chronic pain. It is usually treated with psychotherapy, anti-depressants and anti-anxiety medications.

The Food and Drug Administration has approved VNS for the treatment of pain caused by cluster headache and migraine. A handheld device – called gammaCore –  is currently available by prescription for $600 to treat those conditions. 

The Feinstein Institute for Medical Research recently reported that VNS significantly reduced pain and fatigue associated with lupus, an autoimmune disease that damages joints, skin and internal organs. In a small pilot study, lupus patients who were treated with VNS for five minutes daily had a significant decrease in pain and fatigue after just five days.

An implanted vagus nerve stimulator is also being tested for the treatment of rheumatoid arthritis.

Lady Gaga: ‘Chronic Pain Is No Joke’

By Pat Anson, PNN Editor

One of the few celebrities brave enough to speak openly about their battle with chronic pain is talking about it again – in a fashion magazine.

"Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel," Lada Gaga told Vogue in a cover story.

Last year, Lady Gaga revealed that she suffers from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, depression and insomnia.

A pain flare up forced her to cancel several concert appearances, which led some skeptics to complain that it was a publicity stunt to promote “Gaga: Five Foot Two,” a Netflix documentary that shows the singer being treated for chronic pain.

Lady Gaga says her fibromyalgia is very real – along with the post-traumatic stress disorder (PTSD) she has from being sexually assaulted as a teenager.

"I get so irritated with people who don't believe fibromyalgia is real," she told Vogue. "For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder - all of which sends the nervous system into overdrive, and then you have nerve pain as a result.

“You know that feeling when you’re on a roller coaster and you’re just about to go down the really steep slope? That fear and the drop in your stomach? My diaphragm seizes up. Then I have a hard time breathing, and my whole body goes into a spasm. And I begin to cry. That’s what it feels like for trauma victims every day, and it’s… miserable. I always say that trauma has a brain. And it works its way into everything that you do.”

The 32-year old singer said it took years for her to open up about the sexual assault.

“No one else knew. It was almost like I tried to erase it from my brain. And when it finally came out, it was like a big, ugly monster. And you have to face the monster to heal,” she said. “I felt like I was lying to the world because I was feeling so much pain but nobody knew. So that’s why I came out and said that I have PTSD, because I don’t want to hide — any more than I already have to.”

In addition to fibromyalgia and PTSD, Lady Gaga also lives with synovitis, a chronic inflammation in her hip caused by overuse and injury.  Like many pain sufferers, the singer has tried a variety of different treatments to ease her discomfort – from massage to hot saunas to Epsom salt baths. In 2016, she posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket.

Lady Gaga’s battle with chronic pain is only a small part of her interview with Vogue. She’s helping to promote A Star is Born – her new film with Brad Cooper that premiers next month.

The Link Between Trauma and Chronic Pain

Ann Marie Gaudon, Columnist

It has long been accepted in my field that chronic pain is a frequent outcome of trauma. There is extensive evidence to suggest that people suffering from post-traumatic stress disorder (PTSD) report chronic pain with striking frequency regardless of the nature of the traumatic experience. You don’t need to have been diagnosed with PTSD to be negatively and chronically affected by trauma.

One strong and commonly referred to theoretical model explaining the connection between trauma and chronic pain is known as the Mutual Maintenance Model. A person may respond to reminders of trauma through stress response, which may include avoidant coping (trying to avoid your distress by zoning out with video games or drinking to numb yourself), fatigue and lethargy associated with depression, pain perception elevated by anxiety, and intrusive memories of the trauma itself.

These considerable mental demands limit one’s capacity to control or decrease their physical pain and have the opposite effect of exacerbating and maintaining pain. To put it simply, experiencing pain prompts memories of the trauma, and memories of the trauma prompt experiences of pain.

The end result is that a person is trapped in a vicious cycle whereby the symptoms of trauma and chronic pain interact to produce self-perpetuating psychological distress and physical pain.

A second model, called the Shared Vulnerability Model, suggests that the interaction of trauma, psychological vulnerability (anxiety, loss of control over thoughts and feelings), and a lowered physiological threshold for alarm reactions all influence negative emotional responses, resulting in the development of PTSD and the co-occurrence of chronic pain.

This chronic arousal of the nervous system may be responsible for the symptoms of both PTSD and chronic pain. There is research which suggests that chronic pain and PTSD are not necessarily distinct from each other, but rather connected and overlapping. The fact that sympathetic activity (the gas pedal to your distress) is increased, and parasympathetic activity (the brake pedal to your distress) is decreased, both in general and in response to trauma-related stimuli, is one of the most robust findings within the PTSD literature.

Disastrous events can strike any of us, at any time in life, and no one is immune. Some events are relational such as a school shooting or a rape, while others are natural disasters like earthquakes or floods. After any distressing or life-threatening event, psychological trauma may set in. One may go on to develop extreme anxiety, depression, anger, or PTSD and may have ongoing problems with sleep, physical pain and even relationships.

Healthy ways of coping include getting support, avoiding alcohol and drugs, seeing loved ones, exercising, enhancing sleep habits, and other methods of self-care. Certainly not everyone with chronic pain has experienced trauma and vice versa. However, there is extensive research to show that PTSD and chronic pain are intimately connected.

Seek an experienced trauma therapist if you feel you are not coping well. Trauma therapy is highly specialized, takes place in healing stages at your pace, and works to re-wire what’s become maladaptive in your brain by laying down new and healthier neural pathways. Click here to see a YouTube video that explains that process.

The work will be hard and challenging, but the good news is that many people heal from trauma and go on to live rich and rewarding lives. Some offer inspiration to others who have also endured life-altering negative experiences.

People become sick and pained, and people also heal. Suffering can skyrocket, and suffering can also take a nosedive. You do the work as if your life depended on it, because experience tells us it often does.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, 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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

BioWave Device Helps Vietnam Vet with Chronic Pain

By Pat Anson, Editor

A few months ago, Vietnam veteran Gregg Gaston was depressed and suicidal. Gaston shared his story with PNN readers in a guest column, telling how he suffered from years of chronic pain caused by a failed back surgery, peripheral neuropathy and post-traumatic stress syndrome (PTSD).

Despite his pain, Gaston’s doctor told him he was being cut back to a single dose of tramadol, a mild opioid analgesic. That was the last straw for Gaston, who at the age of 62 was fed up with debilitating pain and doctors who no longer wanted to treat it with opioids. In protest, Gaston fired his doctor and refused to fill his last prescription for tramadol.

GREGG GASTON

“I've given up and am waiting now to die. I've lived a great life and have no expectations of my quality of life improving,” Gaston wrote.  “Common sense is fast disappearing. I'm done fighting.”

Fast forward three months and there’s been a remarkable change in Gaston’s mood and quality of life. The folks at BioWave, a Connecticut medical device company, saw Gaston’s column and sent him one of their neurostimulation units, which use high frequency electrical impulses to block pain signals.

“I was skeptical at first. I really was,” Gaston says. “Being at the breaking point and feeling desperate, I was only too eager to try it. And for me, it really works. I’m not 100 percent pain free, but I can get out of bed in the morning. It’s great, it really is.”

Before he started using BioWave, Gaston says his pain level was usually a 7 or 8 on the pain scale. Today, even on a bad day, it’s only a 3.

“If you have chronic pain you know what a difference that is,” he says. “I used to often sleep no more than 2 hours at a time, now I often sleep through the entire night.”

Think of BioWave as a more advanced version of a TENS unit. Electrodes wired to a battery and control unit send two high frequency signals through the skin into deep tissue, where they stimulate blood flow and block pain signals.

Each treatment takes 30 minutes, and the pain relief can last anywhere from a few hours to a few days, depending on the patient and their condition.  

“I started using it several times a day. But as I got feeling better in my back, I dropped it down to once a day. Now it’s once every two or three days,” says Gaston, who takes no pain medication outside of an aspirin. “They saved my life. My quality of life is still not great, but it’s better than what it was.”

BIOWAVE IMAGE

BioWave has been around for a few years but is not widely known. It was first used by professional sports teams to treat athletes with sprains, tendonitis, muscle pain and other injuries. When it proved effective in treating chronic pain, dozens of pain clinics and VA hospitals started using BioWave devices.

BIOWAVE IMAGE

“Most of the treatments deal with chronic pain and I would say the majority deal with lumbar and cervical pain. That’s probably the bread and butter for our device, but certainly any extremity pain in the shoulder, elbow, elbow, wrist or ankle. We can really treat almost any location on the body,” says Brad Siff, BioWave’s founder and president.

The company says over 75% of patients respond to BioWave treatment, with a significant improvement in their pain scores, mobility and stiffness. The device can even help patients with complex conditions such as arachnoiditis, a chronic and incurable spinal disease.  

“There’s a handful of anecdotal data that we have where arachnoiditis patients have responded. Similarly, patients with failed back surgery have been treated with BioWave and it helped them," Siff told PNN.

"I’m not saying it reduces their pain 100 percent, but some may get a 30, 40, 50 percent reduction in their pain and it lasts for a long period of time following the treatment."

BioWave is currently available only by prescription, but later this summer the company hopes to get FDA approval for a wearable over-the-counter home unit that can be purchased directly by patients. The final pricing hasn’t been determined, but Siff expects it to be between $300 to $400.

For more information, you can visit BioWave at their website by clicking here or by emailing them at info@biowave.com.

VA Studies Find Little Evidence for Medical Cannabis

By Pat Anson, Editor

There is not enough evidence to support the effectiveness and safety of cannabis and cannabinoid products in treating chronic pain or post-traumatic stress disorder (PTSD), according to a pair of new studies published in the Annals of Internal Medicine.

Researchers at the U.S. Department of Veterans Affairs reviewed 27 clinical studies on the benefits and harms of cannabis in treating chronic pain, and found most of the studies were small, many had methodological flaws, and the long-term effects of cannabis were unclear because there was little follow-up in most of the studies.

None of the studies directly compared cannabis with opioid pain medication and there was no good-quality data on how cannabis affects opioid use, according to researchers.

“Although cannabis is increasingly available for medical and recreational use, little methodologically rigorous evidence examines its effects in patients with chronic pain. Limited evidence suggests that it may alleviate neuropathic pain, but evidence in other pain populations is insufficient,” wrote lead author Shannon Nugent, PhD, VA Portland Health Care System.

“Even though we did not find strong, consistent evidence of benefit, clinicians will still need to engage in evidence-based discussions with patients managing chronic pain who are using or requesting to use cannabis.”

Medical marijuana is legal in 28 states and the District of Columbia, and many patients are using it for pain relief. Up to 80 percent of people who seek medical cannabis do so for pain management and nearly 40 percent of those on long-term opioid therapy for pain also use cannabis. Veterans Affairs policy currently doesn’t allow for cannabis use in the huge VA healthcare system, even in states where it is legal.

According to a 2014 Inspector General’s study, more than half of the veterans being treated at the VA have chronic pain, as well as other conditions that contribute to it, such as PTSD.

‘Very Scant Evidence’ on Cannabis for PTSD

More than a third of the patients who use cannabis in states where it is legal list PTSD as their primary reason. But, as with chronic pain, VA researchers found “very scant evidence” to support the use of cannabis to treat PTSD.

“Despite the limited research on benefits and harms, many states allow medicinal use of cannabis for PTSD. The popular press has reported many stories about individuals who had improvement in their PTSD symptoms with cannabis use, and cross-sectional studies have been done in which patients with more severe PTSD reported cannabis use as a coping strategy,” wrote lead author Maya O’Neil, PhD, VA Portland Health Care System.

“However, it is impossible to determine from these reports whether cannabis use is a marker for more severe symptoms or is effective at reducing symptoms, or whether the perceived beneficial effects are the result of the cannabis, placebo effects, or the natural course of symptoms.” 

Clinical evidence may be lacking, but supporters of medical marijuana say they’ve seen plenty of anecdotal evidence that cannabis works for both pain and PTSD.

“They claim no benefits are shown but with the number of people we have met with PTSD that have been able to function and improve with the use of cannabis, I would say the ‘proof is in the pudding.’ Seeing their lives improve tremendously says a lot about success,” said Ellen Lenox Smith, a PNN columnist who is co-director of cannabis advocacy for the U.S. Pain Foundation and a caregiver under Rhode Island’s medical marijuana program. 

“We have not met a person yet that has not been enjoying the improved quality of their life using cannabis for PTSD. We fought a long hard battle to have it included as a qualifying condition and it was worth the battle. Patients are finding peace and calm they were not experiencing before using cannabis. Sleep has improved and without a good night rest, anyone's next day is a terrible struggle.”

Like it or not, the “horse is out of the barn” when it comes to cannabis use, according to an editorial also published in the Annals of Internal Medicine.

“Even if future studies reveal a clear lack of substantial benefit of cannabis for pain or PTSD, legislation is unlikely to remove these conditions from the lists of indications for medical cannabis,” wrote Sachin Patel, MD, Vanderbilt Psychiatric Hospital.

“It will be up to front-line practicing physicians to learn about the harms and benefits of cannabis, educate their patients on these topics, and make evidence-based recommendations about using cannabis and related products for various health conditions. In parallel, the research community must pursue high-quality studies and disseminate the results to clinicians and the public.”