Wear, Tear & Care: The Quell Pain Relief Device

By Jennifer Kain Kilgore, Columnist

When presented with the Quell pain relief device, people make one of two assumptions about me: 1.) I injured my knee, or 2.) I am a paroled felon wearing a very forgiving Velcro GPS.

As I said in my recent guest column, I have made it my mission to test as many pain relief products and therapies as possible. Some of them might be familiar to you; others will be of the “new and bizarre” variety. Whatever they are, I will be your Friendly Neighborhood Guinea Pig and review them for your convenience. I only draw the line at “Made for TV” products that are out to swindle the desperate consumer.

Pain patients are certainly desperate. We have a constant refrain humming through our bodies that plays a different tune for each person. Doctors are the musicians taught to hear those tunes -- but how can they possibly learn all the music? How can they hear your specific song and have the knowledge necessary to fix it?

The problem is that sometimes they cannot. They are deaf to your pain, just like that one whale who sings higher than every other whale -- none of them can hear her.

Thus far, doctors have been unable to hear the song that thrills along my nerve endings. This leaves me with no choice but to fend for myself. I could take the route at which they have hinted: find some street drugs and wait for the undertow to take me (not that this is the problem the media makes it out to be). Or I could travel a different road and at the same time realize that this life of mine includes pain. If I can’t get rid of it, I can at least muffle it.

image courtesy of neurometrix

image courtesy of neurometrix

As I said recently in my blog -- Wear, Tear, & Care -- I have been trying the Quell pain relief device, which is made in the great state of Massachusetts (i.e., my backyard). I have been using it every day for more than a month. Here are my findings:

  • It absolutely works. I have been wearing it for 35 days. I assume there was some psychosomatic effect at first because I was so excited to try the device after months of hype. Once the initial thrill wore off, I was left with the knowledge that, yes, I have reduced my number of Motrin from 16 a day to four, give or take. I am still on Cymbalta and Lyrica for pain control and situational depression, though I can now contemplate reducing the Lyrica entirely. Before, that was not even a possibility.
  • Wearing any kind of medical device during the summer is difficult. I can make the Stride of Pride and show if off with a skirt or shorts; otherwise I have to find pants under which the device can comfortably fit. This means that a good portion of my wardrobe (leggings, skinny jeans, etc.) is not compatible with the Quell. This is a minor concern.
  • The Quell is $249.00. Replacement electrodes cost $30 and last for two weeks. I have worn mine for longer than that because A.) I can, and B.) I’m cheap. The electrodes break down quickly, but as a whole they are more durable than traditional electrodes and do not irritate my skin. With the EMPI device, the electrodes left blisters on my back.
  • The iPhone app is quite lovely. It has a countdown clock so you can see how long the therapy has lasted or how far away it is. I have become adept at the internal calculation of 60 minutes on, 60 minutes off.
  • Unlike other TENS devices I have tried, the stimulation is not distracting, so wearing it at the office is fine.

This is all well and good. But how does the Quell work?

According to their research paper presented to the FDA, the Quell works not unlike other devices that latch onto a dense cluster of nerves in the upper calf. Generally it is best for lower-body pain (sciatica and the like), diabetic neuropathy, and fibromyalgia. I myself have fibromyalgia-ish symptoms, since my pain radiates all over my body. However, I apparently do not actually have the inflammation that is fibro’s hallmark. Doctors will only commit to “chronic pain syndrome.” Since the device works for me, I can say confidently that it treats more than those three conditions.

The Quell is twice as strong as conventional TENS units, does not irritate the skin like traditional electrodes, is less conspicuous, has a mobile app, and can be worn at night. (They say it can be worn at night; I personally found the stimulation too distracting.) It activates endogenous opioids in the body (natural opioids, to say it in English), a different system than the one on which prescription opiates work.

It is, simply put, a wearable intensive nerve stimulator that follows the Pain Gate Theory: The impulses generated by the Quell block pain signals from reaching the brain. As it was cleared to be sold over-the-counter, it is currently not covered by insurance.

I know you pain patients out there loathe the numbers system (What is your pain on a scale of 1 to 10?). I also despise it; this is the only one that has come close to working for me. That’s why I have created a new system. Instead of assigning an arbitrary number to my pain, I am going to tell you what I can do now that I couldn’t do before.

1. I can cut down my daily over-the-counter medication.

2. I can walk for longer periods of time (36 days ago I could walk about 10 minutes before starting to limp; now I can make it almost 30 minutes).

3. I can sit for longer periods of time during the work day (prior to the Quell I’d last 10 minutes before having to get up and move around; now I can make it to 30 before movement becomes necessary).

4. I can focus better on immediate tasks.

5. I have more energy during the daytime, which makes me more social. I have been hanging out with friends more. However, I still practice the chronic pain version of sundowning in the evenings (i.e., I crash).

6. I have been able to resume my almost-daily yoga practice. I even did a 55-minute video the other day (which was   Aroga Yoga’s yoga class for those with chronic illness).

7. I have been able to resume my aqua aerobics practice two to three times per week.

8. I wear my emergency back brace less frequently.

9. I have fewer flares.

FINAL DIAGNOSIS: The Quell device has worked brilliantly for me. While it doesn’t get rid of all the pain I feel, it dampens enough of it so that I can more fully live my life. I hope that it can bring others as much relief.

Jennifer Kain Kilgore is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents. 

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

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

Pain Maps: Raising Awareness About CRPS

By Jessica Mendes, Guest Columnist

There is no shortage of books, articles, research projects and other initiatives dedicated to raising awareness or finding treatments for chronic pain. And rightly so. According to the American Academy of Pain Medicine, a recent market research report indicated more than 1.5 billion people worldwide suffer from it.

What we are sorely lacking in is education about pain, and how “patient as agent” is critical to avoiding a lifetime of disability. By this I mean public discourse to promote initiative and understanding on the part of the person afflicted with pain; including their participation and engagement in their own healing process.

This is an assertion I am fully qualified to make. A year ago I stubbed my toe; now, I am fighting for my ability to walk. I have Complex Regional Pain Syndrome (CRPS), and if this condition was better understood, especially among health practitioners, I wouldn’t be where I am today.

Luckily, I am not lacking initiative. It didn’t take me long to realize that mainstream medicine had nothing to offer me, so I committed myself to research. The sheer complexity of CRPS and its highly individual nature makes it very difficult to define, let alone treat. But the frequency with which I am asked about it continues to remind me how poor awareness is of this troubling condition. I feel a responsibility to share my take on CRPS in the hopes of shining more light in it.

CRPS – also known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain. Its origins are in the brain’s maps or “pain maps.” The extent and nature of this dysfunction varies from person to person. In essence, CRPS causes a distortion or enlargement of these maps.

Brain maps responsible for pain also regulate other bodily functions such as temperature, pressure, vibration, sensation of movement and sympathetic control. Given that the nature of plasticity is competitive, if a map is taken over or “pirated” by pain, its other duties also suffer. This is a simplified interpretation of what I have learned.

As you can imagine, there is no exact science to how this manifests, so this is where individual symptomatology comes in. The way I see it, “hard" neuroscience defines a set group of symptoms and assigns them to a box called CRPS; but this disorder actually falls within the realm of “soft” neuroscience. It’s not western-medicine friendly.

Self-education and a multi-pronged approach are central to healing from CRPS. And that means understanding how your nervous system has gone off the rails, because it’s not going to be the same for everyone.

In my case, I have dysfunction in the sensory neurons that process temperature, pressure and vibration, but how I experience that changes from day to day. My lower leg often cannot tolerate the light breeze of a fan, the touch of cotton fabric or the pressure of a pillow beneath it, so nights are long as I struggle to find sleep. The vibration of a car’s motor, on a bad day, can immobilize me for a week. When I shower, I have to ensure the temperature of the water is precisely what my foot will allow. Slightly warm will inflame it, whereas cool will set off a firestorm of pain. Sometimes cool water feels warm and vice versa.

The nerve cells that process my sensation of movement aren’t working properly either. I cannot do yoga, and walking has to be rationed to gradually increase tolerance. Today, I may take the garbage out; tomorrow I might walk one block. I used to be able to do gentle swimming; now I do ankle rolls in bath water. The trick is to calm and balance your nervous system so that you can gradually “desensitize” and tolerate what is normally healthy, like movement and exercise. Reducing stress is paramount.

Many of the websites, articles or advocacy groups I have come across on CRPS parade images of fire or brain circuitry peppered with ominous red blotches. I get it. On an average day my foot feels ablaze or like it wants to explode. I might feel as if the skin is ripped off the sole or that I am walking on broken glass.

These sensations are real and part of the pathology for all who suffer from CRPS. The problem is that thinking about, focusing on, or agonizing over these sensations strengthens the connections in the brain that are feeding them, further enlarging the pain maps. And these images don’t help.

Another focus for a lot of these groups is the espousal of the mantra “there is no cure” in an effort to raise awareness and galvanize health practitioners to take action. But how do we define cure? Conventionally, this often refers to pharmacology in some form or another, if not surgical interventions. In this sense there truly is no cure. But if you spend any amount of time researching how CRPS develops, you realize how utterly impossible it is to find a one-size-fits-all solution.

And the term “cure,” as it is most commonly used, applies to a fix-it model that doesn’t really demand much from the patient. Not only does that framework lock us in as victims, it is pernicious for CRPS.

For these reasons I avoid the term “cure” and instead use “healing”, “treatment”, “regression” or “reversal”. All of these things are within reach for those with CRPS/RSD, the means of which can be found on a website I created called Pain Maps. But they demand our active participation in the healing process, and a deep-seated belief that a life without pain is possible.

Jessica Mendes is the founder of Pain Maps, an online resource center dedicated to neuroplastic approaches to healing pain and neurological dysfunction. It offers material, sources and ideas that enable non-invasive, drug-free options to reducing nerve pain while exploring new dimensions in the narrative of neuroscience.

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.

‘Amazing’ New Stem Cell Treatment for Neuropathy

By Pat Anson, Editor

Researchers at Duke University say an experimental stem cell therapy being tested on animals shows great potential to provide long-lasting pain relief for people suffering from diabetic neuropathy or other types of nerve damage.

In a study published in the Journal of Clinical Investigation, researchers said mice injected with a type of stem cell known as bone marrow stromal cells (BMSCs) were much less sensitive to nerve pain.

"This analgesic effect was amazing," said Ru-Rong Ji, PhD, a professor of anesthesiology and neurobiology in the Duke School of Medicine. "Normally, if you give an analgesic, you see pain relief for a few hours, at most a few days. But with bone marrow stem cells, after a single injection we saw pain relief over four to five weeks."

BMSCs are known to produce an array of healing factors and can be coaxed into forming other types of cells in the body. They are already being used to treat people with serious burns, inflammatory bowel disease, heart damage and stroke.  

"Based on these new results, we have the know-how and we can further engineer and improve the cells to maximize their beneficial effects," said Ji.

Researchers injected the mice with stem cells through a lumbar puncture, infusing them into the fluid that bathes the spinal cord.

The picture on the right shows how the injected stem cells (in red) migrated to the site of the nerve injury and were still present four weeks after treatment.

A molecule emitted from the injured nerve cells -- which has previously been linked to neuropathic pain – is believed to act as a “homing signal” and attract the stem cells.

Researchers measured levels of anti-inflammatory molecules in the mice and found that one in particular, TGF-β1, was present in higher amounts in the spinal fluid of the stem cell-treated animals.

TGF-β1 is a protein that is secreted by immune cells and is common throughout the body. Research has shown that people with chronic pain have too little TGF-β1.

courtesy duke university

courtesy duke university

Injecting TGF-β1 directly into spinal cord fluid provides pain relief, but only for a few hours, according to Ji. By contrast, bone marrow stromal cells stay on site for as much as three months after the infusion.

Ji’s research team is working to identify stem cells that produce more TGF-β1, as well as other types of pain relieving molecules. In addition to diabetic neuropathy, researchers believe stem cell therapy could also be used to treat pain from chemotherapy, surgical amputation, lower back pain and spinal cord injuries.

Nearly 26 million people in the United States have diabetes and about half have some form of neuropathy, according to the American Diabetes Association.  Diabetic peripheral neuropathy causes nerves to send out abnormal signals. Patients feel pain or loss of feeling in their toes, feet, legs, hands and arms. It may also include a persistent burning, tingling or prickling sensation. The condition can lead to injuries, chronic foot ulcers and even amputations.

Another recent animal study by researchers in the U.S. and South Korea found that diabetic rats given intramuscular injections of bone marrow stromal cells experienced both angiogenesis (blood vessel growth) and a restoration of the myelin sheath -- a protective covering over nerve cells damaged by neuropathy.

"Currently, the only treatment options available for DN (diabetic neuropathy) are palliative in nature, or are directed at slowing the progression of the disease by tightly controlling blood sugar levels," said Dr. John Sladek, Jr., Professor of Neurology, Pediatrics, and Neuroscience, Department of Neurology at the University of Colorado School of Medicine.

"This study offers new insight into the benefits of cell therapy as a possible treatment option for a disease that significantly diminishes quality of life for diabetic patients.”

The study is being published in the journal Cell Transplantation.

Cymbalta and Lyrica in Legal Battles

By Pat Anson, Editor

The makers of Cymbalta and Lyrica – two blockbuster drugs widely used to treat fibromyalgia and other chronic pain conditions – face legal battles this summer that could potentially cost the companies billions of dollars.

In London, a court case begins next week on Pfizer’s efforts to keep doctors in the U.K. from prescribing pregabalin – a cheaper generic version of Lyrica.

And in Los Angeles, a federal judge this week ordered Eli Lilly to face claims in lawsuits alleging that the company misled consumers about the side effects of withdrawal from Cymbalta.

Over 5,000 patients have filed suit against Lilly claiming that Cymbalta caused “brain zaps” – electric shocking sensations – as well as nausea, vomiting and insomnia when they stopped taking the drug.  The first two cases will be heard in August.

“The withdrawal symptoms from Cymbalta were hell,” wrote Crystal Lindell, a Pain News Network columnist in a recent article.

“Less than a week after my last pill, I was getting so dizzy that I seriously thought I had a new disease. Then, there was this thing called the brain zaps that I didn’t understand until they happened to me. In short, it literally felt like my brain was being, well, zapped by electricity. There was also nausea and vertigo and just an overall feeling of falling off a skyscraper.” 

Several readers shared their own experiences with Cymbalta.

“My neurologist put me on Cymbalta, I took 2 pills, I thought my head was going to explode,” wrote Judy Dunn.

“I suffered from 6 weeks of vertigo, nausea, dizziness, and MASSIVE headaches,” said Andy, who was prescribed Cymbalta to treat depression. “I will never take Cymbalta again. EVER.”

“While on the drug I did get a better mood and it helped a lot, but it raised my blood pressure and I was shaky and jittery. I also went through the brain ZAPS!!” wrote Candra Clark.

“We believe in our defenses to these claims and we will continue to defend Lilly vigorously,” Scott MacGregor, a Lilly spokesman told Bloomberg Business.

Cymbalta generated annual sales of $5 billion for Lilly until its patent expired in 2013 and cheaper generic versions of Doluxetine became available.

Lyrica Legal Battle

Like Cymbalta, Lyrica wasn’t originally developed to treat pain. It was used as a treatment for anxiety and epilepsy until drug maker Pfizer realized it could also be effective for fibromyalgia and neuropathic pain.

Pfizer’s patent on Lyrica for epilepsy and anxiety expired last year, but its secondary patent for pain is good until July of 2017 – and that is the essence of its legal fight in the U.K.

Rival drug makers started making pregabalin – the generic version of Lyrica – when its original patent expired. But it didn’t take long for doctors to also start prescribing pregabalin for pain.

According to Pharmalot, about 80% of all U.K. patients on pregabalin are using it to treat pain and Pfizer has launched an aggressive campaign to stop that. Last year the company wrote an unusual letter to physician groups in the U.K. warning them that prescribing pregabalin for pain was a violation of its patent.

“Pfizer believes the supply of generic pregabalin for use in the treatment of pain whilst the pain patent remains in force in the U.K. would infringe Pfizer’s patent rights,” the company said in the letter.

The Royal College of Physicians, which represents 29,000 U.K. doctors, responded with a statement of its own.

“Pregabalin is a useful drug for many patients and, given the current financial pressures the NHS (Britain’s National Health Service) is under, it is disappointing that a pharmaceutical company has made a move that will, potentially, prevent some patients from getting access to it,” a spokesman said.

The NHS has since issued guidance to doctors telling them to use the brand name Lyrica when prescribing pregabalin for pain “so far as reasonably possible.” Pfizer is seeking a stronger statement from the British High Court.

Ironically, Pfizer paid $2.3 billion dollars in 2009 to settle criminal and civil charges in the U.S. for the “off-label” marketing of Lyrica and other medications – the very sort of off-label use it is trying to stop in the U.K.

Lyrica remains one of Pfizer’s top selling drugs, generating $5.1 billion in revenue in 2014.  

New Drugs Could Relieve Neuropathy Pain

By Pat Anson, Editor

After more than a decade of study, researchers at Boston Children’s Hospital are close to developing a new class of non-narcotic drugs that relieve chronic nerve pain by targeting a protein that enhances pain and inflammation.

Their findings, reported in the journal Neuron, could lead to new treatments for diabetic peripheral neuropathy, post-herpetic neuralgia, and inflammatory diseases like rheumatoid arthritis. Current treatments provide meaningful pain relief in only about 15 percent of patients.

"Most pain medications that have been tested in the past decade have failed in Phase II human trials despite performing well in animal models," notes Clifford Woolf, MD, PhD, director of Boston Children's F.M. Kirby Neurobiology Center and a co-senior investigator on the study. "Here, we used human genetic findings to guide our search from the beginning."

Previous research by Woolf and his colleagues found that people with variants of the gene for GTP cyclohydrolase (GCH1) -- about 2 percent of the population -- are at markedly lower risk for chronic pain. GCH1 is needed to synthesize the protein tetrahydrobiopterin (BH4), and people with GCH1 variants produced less BH4 after a nerve injury. This suggested that BH4 regulates pain sensitivity.

To test their theory, researchers took a "reverse engineering" approach in genetic experiments on mice.  First they showed that mice with severed sensory nerves produce excess BH4, created by the injured nerve cells and by macrophages-- immune cells that infiltrate damaged nerves and inflamed tissue.

Mice that were genetically engineered to make excess BH4 had heightened pain sensitivity even when they were uninjured. Conversely, mice that were genetically unable to produce BH4 had lower pain hypersensitivity after a peripheral nerve injury.

"We then asked, if we could reduce production of BH4 using a drug, could we bring about reduction of pain?" said Alban Latremoliere, PhD, also of Boston Children's Kirby Center, who led the current study.

The answer was yes. The researchers blocked BH4 production using a specifically designed drug that targets sepiapterin reductase (SPR), a key enzyme that makes BH4. The drug reduced the pain hypersensitivity induced by nerve injury and without any detectable side effects.

Because BH4 plays an important role in the brain and blood vessels, the goal of any treatment would be to dial down excessive BH4 production, but not eliminate it entirely. Latremoliere showed that blocking SPR still allowed minimal BH4 production through a separate pathway and reduced pain without causing neural or cardiovascular side effects.

"Our findings suggest that SPR inhibition is a viable approach to reducing clinical pain hypersensitivity," says Woolf. "They also show that human genetics can lead us to novel disease pathways that we can probe mechanistically in animal models, leading us to the most suitable targets for human drug development."

Vegan Diet Reduces Neuropathy Pain

By Pat Anson, Editor

A vegetarian diet coupled with a daily vitamin B12 supplement significantly reduced pain and improved the quality of life of people with diabetic neuropathy, according to the findings of a small study published in Nutrition & Diabetes. Participants also lost an average of 14 pounds.

Nearly 26 million people in the United States have diabetes and about half have some form of neuropathy, according to the American Diabetes Association.  Diabetic peripheral neuropathy causes nerves to send out abnormal signals. Patients feel burning, tingling or prickling sensations in their toes, feet, legs, hands and arms.

Many drugs used to treat neuropathic pain, such as Neurontin and Lyrica, often don’t work or have unpleasant side effects.

Researchers at California State University, East Bay, and the George Washington University School of Medicine put 17 adults on a low-fat vegan diet that focused on vegetables, fruits, grains and legumes. Typical meals included oatmeal with raisins, pasta with marinara sauce, vegetable stir-fry with rice, and lentil stew.

Participants also took a daily vitamin B12 supplement, as did a control group that did not alter its diet.

After 20 weeks, patients on the vegan diet not only had less neuropathic pain, they had lower blood pressure and cholesterol levels and had lost weight.

"A dietary intervention reduces the pain associated with diabetic neuropathy, apparently by improving insulin resistance" said Neal Barnard, MD, president of the Physicians Committee for Responsible Medicine at CSU East Bay.

Researchers also noted there was significant improvement in pain and other symptoms in the control group.  The magnitude of the improvement suggests that the B12 supplement, intended to serve as a placebo, may have had real effects in both groups.

One in three children born in the U.S. in 2000 will develop diabetes at some point in his or her life. The average lifetime cost to treat type 2 diabetes is $85,200, half of which is spent on diabetes complications.

"The dietary intervention is easy to prescribe and easy to follow," says Cameron Wells, a registered dietician and acting director of nutrition education for the Physicians Committee. "Steel-cut oats, leafy greens, and lentils are widely available at most food markets and fit well into most budgets."

My Life with Trigeminal Neuralgia

By Pat Akerberg

Most of us don’t focus on the idea of pain until we find ourselves in it for one reason or another.  We just know that we’re glad when it’s gone. 

But what if it doesn’t go away? 

Challenging conditions occur for some of us that catapult us into a life of chronic, intractable pain.  You know you are one of the unlucky ones when meetings with doctors end with statements like:

“There is nothing we can do.”

“You’ll just have to live with it.”

“It’s all in your head.”

That last statement is the one that literally began my life-altering journey with pain. An outgoing, upbeat owner of a thriving consulting practice, I was on a business trip enjoying dinner with a favorite client six years ago.  My meal started with a typical salad.  By the second bite, I was writhing through volleys of shocking pain shooting through the roots of my teeth on my left side.



I later learned that this neurological disorder of the 5th cranial nerve was trigeminal neuralgia -- also known as the “suicide disease” or “worst pain known to mankind.”  I had to cut my trip short and fly home to see my dentist, pronto.  Little did I know then that this event would mark the end my of work life, one of the growing list of ongoing losses for me to grieve.

I was both unfortunate and fortunate during my short search to find a proper diagnosis, one that often takes many months or years to receive.  Unfortunate in that trigeminal neuralgia (TN) is so rare, the cause is unknown, treatments do not offer a permanent cure, and sometimes create more pain issues.  Fortunate in that I escaped the needless root canals or extractions that most are subjected to prior to an accurate diagnosis.

Research became my middle name as I sought to learn everything that I could to get my problem “fixed.” I was driven to get back to my career and serve my clients.  Research collectively pointed to an invasive brain surgery done by a neurosurgeon.  It seemed to have the best odds for a cure, with the least chance of further damage to the nerve. 

Unfortunately, permanent nerve damage is exactly what occurred.  Imagine my concern when I awoke from surgery with my face immovable; frozen like a block of concrete, numb with pulling sensations, and the stabbing pain in my teeth now constant. 

The neurosurgeon who held out a sure cure quickly distanced himself -- perceiving me as “too anxious” about the devastating impairments and pain frequency.  With dispatch and without explanation, my case was closed.    

Left on my own to seek out answers and help, I pursued consultations with several other leading TN experts.  With honesty and compassion, each one delivered the same bad news: medicine and science have not caught up with how to effectively treat a damaged trigeminal nerve.  Advising against further procedures, my lifetime membership into the intractable pain club was validated. 

“Invisible” Pain

Being a co-habitant with an intrusive bully like intractable pain has been all consuming.  Any illusions I had of control have been shattered. 

There’s also an invisible aspect to my pain that can create issues with believability.

Most people are unaware of orphan diseases like trigeminal neuralgia, and have little understanding and compassion towards those who have them. 

Family members, who are turned into caregivers overnight, scramble to figure out how to relate to a frightening pain condition.  Many close friends eventually drift away when you don’t get better, are unable to keep up, or cancel plans too often. And busy medical professionals can skeptically question what they cannot see or touch.  

That’s partly because we are so often judged by how we look versus what we say. If we don’t look sick or in pain, then the erroneous assumption follows that we can’t be that bad.  But we can be! 

When I report that I am unable to chew solid food (eat out), talk, smile, laugh (socialize), move my face or have anything touch it (brush teeth, take walks, exercise) without triggering unbearable facial pain; most people can’t square such an unthinkable loss of natural life functions with how I appear to them.

I agree. It is hard to fathom, yet with neuropathic pain disorders like TN, simple things that normally don’t cause pain now do. Combine those quality of life diminishments and misconceptions with disabling pain and the ingredients for a lonely, isolated existence can’t be denied. 

Often I feel as if I am living in an inescapable bubble, missing out while the rest of the world goes by without me. It takes tremendous fortitude daily for me to counter those negative effects in my life with meaningful ones.  Some days are more successful than others. 

Like most who suffer with chronic pain, the search for any kind of relief becomes a way to keep hope alive.  In the meantime, I do find it helpful to post, blog, and reach out to connect with people like myself whenever I can.  It reminds me that I am not alone in this often debilitating journey.

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum.

Pat is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.