My Story: 30 Years of Pain

By Rochelle Odell

Sad to say, but I am entering my 30th year battling the monster called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). After three decades, I just call it by both names: RSD/CRPS

It was bad enough when the disease was triggered when I was 46. I had made a career change from aerospace to nursing, and moved out of California to take a new job not too far above minimum wage as a Critical Care Tech. After being a volunteer EMT, it was my dream to become an RN or trauma nurse.  So, I trekked to Georgia to start reaching for my dream.

My left heel was most unhappy with all the walking. I had a lifetime award for medical due to a work comp knee injury, which caused an abnormal gait and the heel pain.

After six months, plus physical therapy, I had a knee arthroscopy. The surgeon was also supposed to remove a painful heel spur, but didn’t. Instead, he accidentally severed a nerve in my left heel, immediately triggering what was then called RSD.

In less than five years, the monster spread to all four of my extremities. I had every therapy, blocks, multiple implants and other procedures, but all ultimately failed.

Back to California I trekked with unexplained, unimaginable pain. I had no job, no insurance except for work comp, and was alone -- questioning my sanity about the career change.

ROCHELLE ODELL

I was eventually placed on a medication only regimen, and for over 16 years was on high dose opioids, along with high dose Diazepam, high dose Lidocaine, and three other meds. Funny thing was, I did very well with them.

Was my pain gone? With RDS/CRPS? No, but it was controlled to the point where I could function. I drove, took good care of my small home, and remained active despite the severity of my disease.

Fast forward to 2016. Those of us suffering from unrelenting intractable pain remember all too well what began that year. Thank you, CDC. All my meds stopped suddenly, but I had no idea why until 2017. A new life of hell began. I didn’t leave the house and was mostly bedbound, only getting up to let my very worried little dog outside, or for a trip to the bathroom or kitchen. Showers? What was that? Just going to the bathroom completely drained me. Thank heaven for adult wash cloths.

I discovered online shopping, thankfully, so we survived. I had no family where I now lived and felt frightened and frustrated. It was like my world had ended. I no longer trusted any doctor or nurse, because most were condescending and uncaring, which really saddened me. I gave up an excellent career in aerospace to go into a profession to care for others, nursing. What happened to those people?

In 2018, I returned to pain management and was placed initially on low dose Norco.  By then my pain was out of control and I knew this would be a new era when it came to pain management. I also knew I was very lucky to have found a provider who would prescribe any opioid. My dose was slowly titrated up, although it was still only a third of what it used to be. I also became a palliative care patient.

I have learned to make my medications work for me, using less on tolerable days and more on bad days, ever cautious about running out early.  I learned, or rather adapted, to finding new ways to do my yard and housework. The last five years I decorated for Christmas like I never used to and began inviting friends over for holiday meals. I became active in my homeowner’s association and was elected vice president. It’s a large senior community with over 1,000 homes.

Have I paid the price for my new endeavors? You bet, big time, for several days at a time. But I did not give in to the pain.

I had a wonderful holiday thanks to sweet friends, and had two pain friends over on New Year’s Day for black eyed peas. One brought her husband. The other recently lost her husband, so she brought her son.

What’s the point of my 30-year story? To share that life does not have to end due to unrelenting pain. Yes, we have to fight far too many battles and no one should be suffering like we do. I decided not to let my nightmare consume me and refused to let it destroy what life I have left.

I am now 76. At this moment my left foot and leg are throbbing, and my whole spine feels electrified. Pain management ordered a full spine MRI to rule out arachnoiditis and the myriad of other problems already diagnosed. My left hand and arm feel like they’re on fire, but I know that when I finish this column, it’ll be time for my meds and some relief.

I want all my pain friends to stand up to your pain even when you feel you are at your wits end. Resurrect the fighter in you. Call a friend or have one over for tea or hot chocolate with this cold winter. You can do it! Tell your pain where to go, please, for you!

Rochelle Odell lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Why I Am Stepping Back from Patient Advocacy

By Barby Ingle, PNN Columnist

Each year at Thanksgiving, our family has a tradition of choosing a community project to support. Every year we do something different: caroling, feeding the homeless, or spending time at the local nursing home. But 2006 was different. The year before, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a chronic nerve disease that my late stepsister also developed.

We had much trouble getting help and care, so at our Thanksgiving dinner in 2006, we decided to start a 501c3 nonprofit to support the RSD community. Although we had joined other support groups and worked with other nonprofits, it was not what we expected. We wanted to be something different. We wanted to be inclusive of patients, caregivers, providers, legislators and providers treating RSD specifically.

But after the first year, we saw that the same challenges we were working to overcome with prevention, diagnostics, treatment and long-term care were happening to many patients dealing with other chronic pain conditions.

BARBY INGLE

Since helping to start the Power of Pain Foundation – also known as the International Pain Foundation (iPain) -- I learned a lot. I went to classes to learn more about RSD, as well as over 150 other chronic and rare disease conditions.

I would say I became an RSD expert, and over the years taught many healthcare professionals, patients, caregivers and industry leaders about treatments, long-term outcomes, and how to navigate the system from the patient point of view.

I have learned that not every patient wants help, not every patient needs help, and not every patient wants the help that you can give. Having a degree in social psychology was helpful. I understood why there are haters, naysayers and pessimists in the pain community. They are in all of society, why would they not be in our community? 

I remember when I was coaching Deb, our marketing director, she would tell me: “Everyone needs a break sometimes. Take your vacations, take your days off, and leave the job behind.”

Well, when you have a chronic illness, you can’t just leave it behind. I have tried. However, you can take time for yourself. It is not your job to help everyone, even if you want to. It is even more necessary to take care of yourself first.

Therefore, I am following Deb’s advice and stepping back. Mostly it’s because I grew tired of the negativity and hate that comes from being in the leadership position that I was in. Whenever we did an iPain project or chose a “Hero of Hope” recipient, I was thanked and would tell people that I only had one vote. But some did not understand that I literally had just one vote.

Today, I have no vote. As of January 1, 2023, I am no longer President of the iPain Foundation. I still love iPain, and I am still going to volunteer for projects and events. But I am going to take the next two years to do other projects and things for me as a patient, wife, sister and human.

The amount of hate I received over the years for doing something that I have passion for became just too much. I was often told, “You only get to do this because of your position” and “If I was in charge, I’d do it differently.”

To those who said that, watch what I do next. You can do many things, whether you have a position of leadership or not. You can take classes (there are many great ones online) and learn how to do the things you think are important. I have done that and will continue to do it. I will show the pain community that you can do big things without a leadership position. Yes, you can be a leader in action, without the title.  

I wish the 2023-24 leadership of iPain all the best, and hope they succeed everywhere with all they take on, create and produce for the pain community. I am glad to have the stress of the job off my shoulders. Am I done? Yes, I am out!

We will see if I join another board of directors in the future, but for now I will do what I have always done as a pain patient: go into the world to make a difference. I am excited to get back to writing columns for Pain News Network and iPain Living Magazine. I am working on a few more books to publish, some additional presenting, and working on legislation in the coming years.

I have a few of my bucket list items to check off, and I will go on more life adventures with my husband, Ken. Most of all, I will be excited to say more and do more of what I want to do, and not out of obligation for a position I was voted into.  

To the pain community: Be good to each other. Remember you get the help you can be given, not always the help you need. The anger, frustration and negative feelings you face are yours. They are normal feelings for a person in pain, but please also remember the person you reach out to for help may not be able to provide the help you want.

Keep going forward. The help you need is available, how you get there is optional. Taking out those negative feelings on others, especially the ones closest to you, is the ultimate way to drive others away. It is your choice. I choose to get out of the negativity and to work on making a difference. To be a little bit more concise, “You be the best you, I will be the best me, too.”

It can be a win-win situation for us both, which is always good. 

You can find me on my personal social media, you will see more articles from me at PNN and other outlets, and you can always check out my personal website to find out what I am up to next. There will be much more to come, and I promise to continue to make a difference and help in ways that I can. I hope I motivate you to do the same for yourself.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

Justin Brown: A CRPS Story of Hope

By Miles Ryan Fisher

When Justin Brown took his first steps at the age of 40, his parents were overcome with joy. Only, it wasn’t the same joy that they’d experienced when he’d taken his first baby steps.  No, this joy came with great pain — the kind of pain that comes with watching one’s child lose nearly half his life to a debilitating condition called Complex Regional Pain Syndrome, also known as “the suicide disease.”

In 2006, just as Justin prepared to enter the working world as a Penn State graduate, he started losing weight. He began regurgitating his meals, vomiting most of whatever he ate. Over time, he grew gaunt. His face sunk and his cheekbones protruded. His skin wrapped around his body until he looked emaciated.

Doctors didn’t have answers. When Justin reached the point that he couldn’t hold down any food, they inserted a J-tube — a feeding tube — in him so that food could bypass his stomach. But it wasn’t his stomach that was the problem. It was the parasite they hadn’t tested for — the one dwelling in his intestine right where the tube was inserted. When they removed the J-tube, they accidentally left a part of it in him.

When Justin awoke from surgery, he awoke to something even more unbearable. Something hellish. The operation triggered a pain that spread through his entire body and left him incapacitated, even after the parasite and tube remnant were removed. At the age of 26, Justin no longer had the strength to walk, not even to the bathroom.

Since 2007, he lay in a hospital bed in the middle of his parents’ living room in Fort Washington, Pennsylvania, his arms at his sides, his head always facing the same direction. In order to subdue the pain that incapacitates him, Justin takes a daily mixture of heavy pain medication, including narcotics.

It took many years until Justin and his family found a doctor who offered an accurate diagnosis: Complex Regional Pain Syndrome or CRPS. Only, the doctor didn’t call it that. Back then, the condition was known as Reflex Sympathetic Dystrophy or RSD.  

CRPS/RSD happens when an injury — as minor as a broken finger or as major as surgery — triggers a pain so severe that it is, according to the McGill Pain Index, worse than than amputation. The pain typically remains in the region of the injury, usually involving a limb. But in Justin’s case, it spread through his entire body.

“A lot of people feel like their skin or their nerves are burning, but for me it feels like my bones are being crushed,” Justin says. “If I took my worst pain before CRPS, that would be like a 1 out of 10 compared to my pain now. You really can’t describe it.”

The pain that he’s bravely battled for 17 years has been excruciating and constant. With no end. And no cure.

“It’s there 24/7, and you don’t know when it’s going to go away or if it’s going to go away,” Justin says. “But I had two choices. One was to completely quit. And the other was to keep going and hope that it’ll get better.”

Finding Hope

But now, Justin is finally getting part of his life back through a form of non-allopathic (without drugs or surgery) treatment offered at the Spero Clinic in Fayetteville, Arkansas.

The clinic, which has over 40 employees and treats hundreds of patients every year, was founded in 2012 by Dr. Katinka van der Merwe. Born in South Africa, van der Merwe immigrated to the United States in 1994 and earned her Doctor of Chiropractic degree with the intent of using it to treat individuals who suffer from CRPS and other chronic pain conditions. .

Her clinic’s approach involves treating the vagus nerve, which is the longest and most complex of the body’s 12 cranial nerves. Individuals who suffer from chronic neurologic disorders often have an underactive vagus nerve, which causes inflammation that is either localized or, as in Justin’s case, envelops the entire body. It’s this inflammation that can cause excruciating pain.

“My philosophy and belief is that the body is incredibly intelligent and can heal from the inside out,” van der Merwe says. “People don’t come here to get a diagnosis and medication — they come here to have their bodies rehabilitated.”

The clinic approaches pain treatment in a holistic and noninvasive way, using a variety of therapies and tools involving electrical, physical and auditory/visual/sensory stimulation. It’s the clinic’s range of therapies that helps correct the nervous system and – hopefully -- puts the patient’s pain in remission.

“It’s a completely different approach to everything that I’ve tried so far,” Justin says. This has included the most radical of forms, such as being placed in a ketamine-induced coma in Mexico and brought out of it with the hope that his nerves would essentially reset. Some CRPS patients have found relief with ketamine infusions, but it didn’t work for Justin.

It was last March that Justin began treatment at the Spero Clinic. As soon as the first week ended, Justin experienced progress. It began with his ability to move his hands. Then the next week, he stood up. On the third week, he walked for the first time in 15 years.

Every week after that has brought similar victories — small to a healthy person, but momentous for Justin. Regaining his ability to drink a Gatorade. Regaining his ability to curl two-pound weights. Regaining his ability to wear clothing that fits him, rather than clothing so loose as to not press against his body and cause him a great deal of pain.

“Before I got here, the most I could take were fifteen steps,” Justin says. “And they weren’t good steps. I’d just drag my feet on the ground. Now I walk from my hotel room down a couple hallways, through the center of the hotel, and outside.”

Every incremental gain helps Justin continue to grind. Unlike most patients, who require two or three months of treatment, Justin will need at least half a year because of how severe his CRPS is.

Fundraising Help

The cost of every week of treatment — about $3,000 — is typically not covered by insurance, which does not make it any easier on Justin or his family. If anyone knows this, it’s Philip Robert, one of the Spero Clinic’s CRPS patients in 2016.

Robert spent ten weeks at the clinic and found his recovery so miraculous that he was inspired to form the Burning Limb Foundation, a non-profit whose mission is to raise funds to provide financial assistance to people with CRPS, primarily for treatment at the Spero Clinic. What makes the foundation different from most other non-profits is that 100% of the donations it receives are applied to treatment costs. And unlike other fundraising platforms like GoFundMe, donors are then able to write it off as a charitable gift on their tax returns.

“The idea is to get (CRPS patients) started — get them seed money — so that they can then do a fundraising campaign in the nonprofit world,” Robert says. “We provide a platform in which families can utilize their resources—their network of friends and family—who may be willing to give a little bit more.”

It’s through the Burning Limb Foundation that Justin has received much-needed financial support from family, friends and even people who have never met him but want to play a role in his recovery.

It’s that recovery that Justin realizes is so important, not only to live a life free of pain, but also to inspire others like him who suffer from CRPS. While not cured of the disease, he hopes his remission can bring hope to others.

“If it can work for me, it can work for anybody,” Justin says. “It’s not guaranteed to work for everybody, but it can work for anybody.” 

Miles Ryan Fisher is the Assistant Director of the Building Trades National Medical Screening Program and also serves on the advisory board for Columbia Lighthouse for the Blind. His articles have appeared in the Washington Post, Philadelphia Inquirer, Washingtonian Magazine, Motherly, and Go World Travel.

CRPS Is a Bad Name for a Painful Disease

By Dr. Forest Tennant, PNN Columnist

A few years ago, the “pain powers” of the day decided to change the name of a mysterious painful disease called Reflex Sympathetic Dystrophy (RSD) to Complex Regional Pain Syndrome (CRPS). 

Not long after the name change, I received a telephone call from a reporter who mistakenly believed that “CRPS” meant that chronic pain statistics were now going to be kept by geographical regions.  He wanted to know which regions had the least and worst pain problems.  He sounded rather despondent when I informed him the regions weren’t geographic areas, but referred to parts of the body. 

After a sigh and pause, he asked how many regions there were and where they were located on the body.  I finally had to admit that although I was familiar with legs, arms, buttocks and ears, I hadn’t been able to come to grips with exactly what the body’s regions were or where they were located, as they weren’t mentioned in Gray’s Anatomy.  The reporter apologized for bothering me and said he thought he would focus on prostate issues instead.

Not long after I disappointed the reporter, I attempted to obtain a prior authorization to pay for CRPS medications from a patient’s insurance company.  I had mistakenly assumed that the label CRPS had reached the bowels of the insurance industry, but a grouchy lady on the phone informed me that her insurance company didn’t recognize regional pain and only paid for legitimate painful diseases.  Furthermore, she questioned my ability and sanity, accusing me of creating a fraudulent diagnosis.  At this point, I rightfully decided the CRPS label may have problems!

These episodes underline the point that lots of people with CRPS are being poorly treated due to a name that doesn’t even sound like a legitimate disease or disorder. Their very real illness goes unrecognized and payment for treatment is often denied by their insurance.  At best, the CRPS label trivializes a condition that can be so severe as to force a person into bed, endure great suffering, and die before their time. 

The history of the name CRPS is most telling.  A British surgeon named Alexander Denmark wrote the first known description of a disease like CRPS in about 1812.  He described a soldier injured by a bullet this way:

“I always found him with the forearm bent and in supine position and supported by the firm grasp of the other hand. The pain was of a burning nature, and so violent as to cause a continual perspiration from his face.” 

Another physician who was working with wounded Civil War soldiers, Dr. Silas Weir Mitchell, published his findings in a 1864 monograph entitled “Gunshot Wounds and Other Injuries.” Mitchell described the basic injury as burning pain located in close proximity to the battle wound.  He also described the well-known characteristics of the disorder, including glossy red or mottled skin without hair, atrophic tissue, and severe pain caused by touch or movement. 

In his 1872 book, “Injuries of Nerves and Their Consequences,” Mitchell coined the term “causalgia” which he derived from the ancient Greek words kauaoc (heat) and oayoc (pain) to emphasize the nature of the disorder.

The term causalgia remained in place until about 1946, when Dr. James Evans, a physician at the Lahey Clinic in Burlington, Massachusetts, described 57 patients with injuries similar to those labeled causalgia by Dr. Mitchell.  Evans described his patients as having intense pain and clinical signs that he explained as being due to “sympathetic stimulation.” The patients experienced rubor (redness), pallor, and a mixture of both sweating and atrophy.

This syndrome would appear after fractures, sprains, vascular complications, amputations, arthritis, lacerations, or even minor injuries.  Evans found that sympathetic nerve blocks usually relieved the pain, so he rejected the term causalgia and gave it the name Reflex Sympathetic Dystrophy (RSD).

The name RSD pretty well replaced causalgia until 1994, when the International Association for the Study of Pain (IASP) changed it to Complex Regional Pain Syndrome (CRPS).  This change was led by the renowned pain specialist John Bonica, MD, who wanted to shift the focus away from the terms dystrophy, reflex and sympathetic back to pain. 

This argument for the change had validity, in that the condition doesn’t really have a reflex component and sympathetic blockades do not consistently relieve pain.  Also, dystrophy is medically defined as tissue degeneration, such as that caused by diseases of nutrition or metabolism. The IASP wanted the primary focus to be on pain.

Unintended Consequences

While the name changes from causalgia to RSD to CRPS were intended to bring better pain relief to needy patients, there have been several unintended consequences.  In fact, a reasonable argument can be made that the name change has been counterproductive. 

What should CRPS now be called?  It’s doubtful that a new consensus could be quickly developed, as the syndrome is complex and involves multiple issues. 

Frankly, I personally believe we should junk the term CRPS. It trivializes a most serious disorder, and I have found use of the name CRPS actually deprives some patients of the treatment they need.  I have often simply used the term “vascular neuropathy” to effectively educate pharmacies, families, insurance companies and patients about the condition.  At least this term sounds legitimate and serious!

Fortunately, regardless of its name, the syndrome appears to be diminishing both in incidence and severity.  Workplace injuries and vehicular accidents get immediate attention these days, while early medical and physical interventions usually prevent great severity. 

Also, there is now an understanding of centralized pain and its electrical discharges, which are greatly responsible for the so-called “sympathetic” symptoms of the disorder.  Treatments for centralized pain are clearly benefitting persons with this unfortunate disorder, regardless of whatever name you wish to call it.  I would call for a name change but I don’t know who to call!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Pioneering Neurologist and CRPS Expert Remembered

By Pat Anson, PNN Editor

A pioneering neurologist who helped develop new treatments for Complex Regional Pain Syndrome (CRPS) has died. Robert Schwartzman, MD, passed away last week at the age of 81.

Dr. Schwartzman was an emeritus professor and former chair of the Department of Neurology at Drexel University College of Medicine in Philadelphia. He also taught and practiced medicine at Thomas Jefferson University, University of Texas Health Science Center, San Antonio and the University of Miami. He mentored hundreds of residents and colleagues, and authored several reference books on neurology.

The primary focus of Schwartzman practice and research was chronic pain, particularly CRPS (also known as Reflex Sympathetic Dystrophy or RSD), a chronic and severe pain syndrome affecting the nervous system.

At Jefferson University, Schwartzman founded the first CRPS clinic in the U.S. and pioneered the use of ketamine as a treatment for CRPS and other pain conditions.

“I met Dr Schwartzman in 2007 at a pain conference and joined the wait list to see him as my provider for RSD. I was finally able to so do in 2009. I shared what I learned with as many people as I could and continue to this day,” says PNN columnist Barby Ingle, founder and president of the International Pain Foundation. “His impact will live on through patients like me.”

DR. ROBERT SCHWARTZMAN

Ingle wrote about her first experience as a patient of Schwartzman in a PNN column. She went into the hospital in a wheelchair, but was able to walk out a week later after a series of ketamine infusions. She continues to get infusions regularly.

“He was a brilliant doctor and world expert on Reflex Sympathetic Dystrophy who's training and 40+ years of research help teach other providers who have also gone on to help millions of patients,” Ingle said in an email. “He will forever live in my heart as he is the provider who got me from my wheelchair and bed bound to walking and living life to my fullest. I will continue sharing his pioneering works and receiving his protocol for my infusion therapy. He is a treasure to our whole community.”   

“I didn't know him personally but I knew and respected his pioneering work,” says Lynn Webster, MD, past president of the American Academy of Pain Medicine. “He challenged our thoughts and understanding about how to treat the devastating disease of CRPS.  

“Dr. Schartzman took us into unexplored areas of how to treat a crippling disease. His work inspired me and countless others who have tried to implement his treatment approach for our own patients. He has given us a legacy of research that will be the foundation on which new discoveries about the mechanism and cure for CRPS will occur. The passing of Dr. Schwartzman is a huge loss for science and humanity.”

Schwartzman retired from clinical practice in 2013 and moved to Marco Island, Florida. Funeral arrangements are private. His family requests that any donations in his memory be made to any Florida wildlife or conservation charity.

Meeting the Doctor Who Helped Me Most

By Barby Ingle, PNN Columnist

In honor of September being Pain Awareness Month, I wanted to give homage to the doctor who helped me most over the past 20 years. He was in my life for about 6 years of this journey, before he retired, but he has given me tools for a lifetime.

When I arrived at Dr. Robert Schwartzman’s office for the first time, I was excited. I had met him a few years prior at a medical conference, where he agreed to treat me. Dr. Schwartzman is one of the world’s leading experts on Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Due to high demand from other patients, there was a waiting list to see him.

I was in my wheelchair and had made the trip to Pennsylvania from Virginia, where I was staying with my sister and her husband. At the time, I was hurting all over and many of my symptoms were flaring due to the travel.  I had many types of pain going on: burning, stabbing, electric, shooting, deep, surface and bone pain. I was dizzy and felt nauseated.

My name was called and my sister and I went to the exam room. The nurse was very nice and asked all the right questions. She had me put on a gown. Then we waited.

When Dr. Schwartzman walked into the exam room to see me, he was followed by about 9 student doctors. His first words were, “Now she has Reflex Sympathetic Dystrophy. Anyone should be able to see it at first glance.” He then began pointing out all of the symptoms I had from the RSD. He knew things before I even said anything.

The doctors saw the blanching in my skin. From my face to my feet, I had discoloration. I never paid that much attention to how bad it had gotten over the years; maybe because it happened over time. I took pictures of it, but did not know that it meant RSD had spread to those areas.

The most severe burning pain was on the right side of my body. I had all the other types of pain on the left side, but the atrophy and lack of coordination were not as bad.

DR. ROBERT SCHWARTZMAN

When Dr. Schwartzman began to do neurological testing on both sides, I felt the pain. The right side was worse, but the left side was definitely affected. He discussed me being diagnosed incorrectly by my other doctors with Thoracic Outlet Syndrome and having my rib removed twice. He also guessed correctly that I had been diagnosed with temporomandibular joint dysfunction (TMJD) because of the facial pain and that I was having issues with my thyroid.

He remarked about my sweating, the swelling in some areas, and asked about my low-grade fevers, Horner syndrome and more. He discussed and noted the atrophy in my hands, arms, legs, feet, face, back and the dystonia in my hands and feet. By discussed, I mean he discussed it with the other doctors. Dr. Schwartzman hardly spoke to me.

Next, he had me do neurological tests. An easy one that you can do right now involves your hand. Take the tip of your index finger and tap it to the tip of your thumb as many times and as fast as you can. I thought that I did it very well, especially with my left hand. But Dr. Schwartzman explained the way I did it was awkward and slow, which was another symptom.

I did not understand, so he showed me. He could tap his fingers so fast that it looked like I was going in slow motion. Since then, when I ask others to do the same thing, I am amazed that I cannot go as fast, no matter how hard I try.

He watched me smile, had me stick my tongue out, and then asked if I had trouble swallowing and if my voice goes in and out sometimes. I said, "Yes, how did you know?" He said that the RSD was affecting my throat and intestines.

I had been diagnosed with gastrointestinal ischemia and gastroparesis a few years earlier. The hospitalist that performed the tests said there is a section of my intestines that was getting little to no blood. I did not understand how that was related to the RSD until I saw Dr. Schwartzman and learned that RSD causes vascular constriction, which can make it difficult to get an IV line inserted or even do blood tests.

I never realized that vascular constriction could also affect organs. I thought I was just eating too quickly or being lazy when I choked on food. I did not know why my voice changed or why I would lose it sometimes. The RSD even affected the way my nails and hair grow.

Dr. Schwartzman was spot on with everything. He added that whiplash or brachia plexus injuries are a leading cause of upper extremity RSD. Because of my additional traumas and surgeries, the RSD had spread.

Ketamine Infusions

Sometime near the end of the exam, Dr. Schwartzman said to the student doctors, “The only thing that will help this patient 100% is the coma treatment.”

I was shocked. I thought I was going to be getting outpatient ketamine infusions. I began to tear up. I kept telling myself not to cry. It is never good to cry at a doctor’s office. I wanted to be taken seriously and be strong. As soon as they left the room, tears flowed down my face. The nurse said she would be right back with all of the instructions and scripts that he was giving me.

I did not have any idea of the issues that were involved with RSD or that I had many of the symptoms. Instead of starting right away, I had to wait another 9 months to get a bed in the hospital, where I underwent 7 days of inpatient ICU ketamine infusions.

I went into the hospital in a wheelchair, but walked out on my own a week later, ready to live the next chapter in my life. That was Dec. 14, 2009. I still undergo ketamine infusion therapy about 4 times a year for booster treatments, but I am no longer on daily medications for pain.

I thank Dr. Schwartzman and all the research doctors out there coming up with treatments and scientific data for people like me with chronic rare diseases and severe life changing pain. We should always remember there is reason for hope. We just have to be active in seeking and using all of the resources available.

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.  

Tennant Foundation Launches Intractable Pain Research and Education Project

By Pat Anson, PNN Editor

One of the pioneers of pain management in the United States is hoping to draw more attention to intractable pain and how it differs from chronic pain. While chronic pain lasts for 90 days or more, intractable pain can persist for years, decades or even a lifetime. Many doctors fail to distinguish between the two, which leads to gaps in diagnosis and treatment.

“The pain field has been woefully negligent about this. They talk about symptomatic treatment of what to do to relieve chronic pain, but in order to deal with intractable pain syndrome you’ve got to treat the underlying cause,” says Dr. Forest Tennant, whose foundation has just released a new report called “The Intractable Pain Syndrome: A Call for Recognition and Prevention.”

“We’ve worked on it for quite some time with the goal of having every patient, doctor, nurse and family understand it. And to try and bring things out in language that is understandable by everybody.”

“This was a labor of love for all of us, born from a sincere desire to bring recognition, treatment and prevention to this devastating syndrome,” says co-author Ingrid Hollis, whose son was treated by Tennant for Arachnoiditis and Ehlers-Danlos Syndrome. “We have learned so much through the years, and I believe there is much that can be done to prevent intractable pain syndrome from developing and progressing when it occurs.”

“One of the reasons we’re doing this is to call for early recognition and vigorous treatment,” Tennant told PNN. “Someone who has this for two, five or twenty years, you can’t expect much reversal. But those people who have these conditions for six months or a year, they have a great ability to reverse a great deal of this. The earlier the treatment, the better the outcome.”

Left untreated, Tennant says intractable pain syndrome (IPS) can lead to chronic inflammation in the central nervous system that is difficult to reverse.  The inflammation not only causes constant pain, it leads to loss of brain tissue and creates dysfunction in the neurologic, cardiovascular, hormone and immune systems.  

“We’ve known for centuries that a painful injury will create what amounts to electricity. And too much electricity causes inflammation and inflammation causes tissue destruction,” says Tennant. “Intractable pain syndrome does change their basic physiology by virtue of altering physically the neurotransmitter systems that are in the brain and spinal cord. That is really the difference. And this is very objective. It’s measurable. It’s visible. It’s clear when its present.”

Tennant says these “pockets” of inflammation can be seen on MRI’s and brain scans. Someone suffering from simple chronic pain won’t have them, but people with intractable pain will.

There are five basic conditions that can cause IPS:

1. Arachnoiditis, a chronic inflammation of spinal nerves

2. Genetic connective tissue/collagen disorders such as Ehlers-Danlos Syndrome (EDS)

3. Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS)

4. Brain injuries caused by strokes or head trauma

5. Serious end-stage osteoarthritis of the spine, hips, knees or feet.

Other possible causes of IPS are porphyria, sickle cell disease, Lyme disease, interstitial cystitis, and some rare genetic disorders.   

IPS Can Be Reversed

Long recognized as incurable, Tennant says intractable pain can be reversed if diagnosed and treated early. He has pioneered some new treatments for IPS, including hormone supplements, physical therapy and better nutrition.

“Our project hopes to educate people about what they can do to reverse a lot of this,” Tennant told PNN. “Step number one is you’ve got to have vigorous treatment of the underlying cause of pain. The arachnoiditis has to be treated. The arthritis has to be treated. The RSD has to be treated. In other words, vigorous treatment of the underlying condition.

“Step number two, there are specific things they can do to slow down the inflammation inside the central nervous system. We know the body makes hormones inside the brain and spinal cord that can reduce the inflammation inside the central nervous system and regrow some of the tissue that’s been lost. People say you can’t do that, but oh yes, you can. There are studies that show this and we see this clinically.”

“I strongly believe that Dr. Tennant's concept of how intractable pain develops and progresses is absolutely correct.  His work in identifying the causes, developing diagnostic criteria, and figuring out a treatment protocol provides what doctors need to know to help people with intractable pain,” says co-author Kristen Ogden, whose husband Louis was treated by Tennant for a complex autoimmune condition.

“Louis' treatment with Dr. Tennant allowed him to improve so much in so many ways. Very effective pain control, greatly improved function and the best quality of life he ever had as an adult.  I am sure that very few people have any idea at all how much a seriously ill pain patient can improve and even regain lost function and capabilities if they have the right medical regimen that meets their needs.”

Tennant retired from clinical practice in 2018, the year after his home and office were raided by the DEA as part of an investigation into his opioid prescribing. No charges were ever filed against him. While Tennant no longer sees patients, he is continuing his research into the treatment of IPS – which notably downplays the use of opioids.

“The answer to opioid use is treating the syndrome rather than just giving symptomatic relief. Opioids are symptomatic drugs,” explains Tennant. “What we’re saying is, identify this and try to treat the condition. Don’t just throw a bunch of symptomatic antidepressants, opioids and other interventions at it. Start trying to look at it physiologically and pathologically, and treat it like we do other syndromes.”    

To learn more about the Tennant Foundation’s Intractable Pain Syndrome Research and Education Project, click here. 

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Disabled Workers and Chronic Pain Patients Need a Voice in Congress

By Amanda Siebe, Guest Columnist

I’ve always wanted to serve my community. Nine years ago, I thought the best way to do that would be as an EMT and firefighter. I wanted to be there for people in their hour of need to provide help and comfort. But in 2011, that goal came to an abrupt end.

While working as a restaurant manager, I fell and badly sprained my ankle. What should have been six weeks of recovery turned into full body Reflex Sympathetic Dystrophy (RSD). Because my employer placed more value on profits than they did on my health and safety, I continued to work in the kitchen, repeatedly slipping and falling before abandoning my crutches.

That simple injury ended up taking my dignity, financial stability, and eventually it will take my life. All because my employer didn’t have another manager to run the restaurant while I recovered.

Because of my disability, I never thought much about running for political office. But as I watched the lack of representation the disabled community has and felt the impact policies and funding cuts have on my life, I began to wonder: How could I not run?

I may not have the body that I once did, but my mind and passion are still sharp, as is the case with many disabled individuals. My wheelchair has not made me any less of a person or any less deserving of a representative who looks like me and understands my plight.

So here I am, taking a stand to say that while we may be disabled, we’re still worthy of quality life and pursuit of happiness.

I’m running in the 2020 election as a Democrat in Oregon’s 1st Congressional District to fight for the care and benefits we deserve and were promised.

Federalize Workers Compensation

AMANDA SIEBE

As a disabled worker, I was assured there was a safety net to catch us if we got hurt, but I quickly realized that’s not the case. We aren’t told that workers compensation is run by private insurers who have more loyalty to their shareholders than to injured workers. These companies increase profits by denying injured workers medical care, leaving them to suffer as they fight to justify every treatment, medication and benefit.

Currently, each state dictates the worker compensation laws these companies follow, resulting in injured workers getting better treatment in some states than in others. A worker in New York is no more valuable than a worker in Alabama. That’s wrong and must change.

We must end this system of profits over people. We need to federalize workers compensation and prevent lobbyists and private interest groups from ripping apart our safety net. Workers who give their time, bodies and lives to employers must receive the care and respect they deserve.

End Forced Tapering of Pain Patients

Patients with chronic and debilitating pain have been hit especially hard during the opioid crisis. Patients on stable doses of prescription opioids for years are being forcibly tapered and left to suffer. Less than 3% of chronic pain patients become addicted to opioid medication, but doctors are still taking many patients off of these drugs.

When patients are forcibly tapered without properly managing their pain, it forces some to turn to the bottle, the street or suicide for pain management. Thousands have already died as a result of losing their opioids. This must stop.

Increase Disability Payments

After my injury, I went from being the family breadwinner, earning about $50,000 a year, to trying to survive on $735 a month. Young disabled people are especially hard hit because we don’t have decades of high-earning work history to draw on, resulting in lower benefits. That’s if they can even get on SSDI. Those who become disabled before 45 often won’t get approved for disability or have to fight for years to get it.

We must stop using age as a determinate of disability. If disability doesn’t discriminate based on age, then neither should our government.

Currently, there are 554,000 homeless people in our country. Of those, 40% are disabled and 30% are elderly. The average Social Security Disability benefit is $880, while the average rent for a 1-bedroom apartment in Portland, Oregon is $1,400.

It’s no wonder when our government pays starvation wages as a benefit that so many disabled and elderly become homeless. We can reduce our nation’s homeless rate by over half just by making SSI and SSDI comparable to a living wage. We must ensure our most vulnerable citizens have a basic quality of life, too.

IMAGE BY NATALIE BEHRING

The disabled community needs many other things that have gone ignored by Congress. While the Americans With Disabilities Act of 1994 was a huge step forward, it hasn’t been updated in 25 years. We need the ADA to match the knowledge and technology of today.

Many people provide care to disabled family members while still holding down a full-time job. It’s time we paid these family caregivers, who save insurers and healthcare providers hundreds of billions of dollars each year. Paying them would give needy families financial stability and independence.

Medicare For All

We’re an important voice in the healthcare debate and we need to be part of the conversation. If we are to have Medicare For All, then it needs to cover all conditions, all medications and all medically necessary treatment for all patients. Medicare as it currently stands is underfunded and not good enough. We need to fight for universal healthcare coverage so patients no longer have to fight for proper care.

Even though 1 in 5 adults are disabled, we are sorely under-represented in Congress. We need representatives who understand the unique situations and problems we face. We’ve been forced to sit on the sidelines as others decide our care, benefits and future. It’s time we had a say.

For too long, we’ve been victims of circumstance — told that we can’t run for office because our bodies prevent us from giving everything we have. That’s a lie.

Running for Congress isn’t what I thought I’d do be doing with the time I have left, but everyone deserves representation. We’re a part of this country and it’s time we were treated as such. It’s time for the disabled community to unite and be represented. We deserve better. 

Amanda was diagnosed in 2012 with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Since her diagnosis, she has advocated for chronic pain and disability rights. In 2016, Amanda was the recipient of the WEGO Health Advocate Rookie of the Year Award.

Amanda has dedicated her life to improving her community and has fought to teach her 11-year-old son, Keagan, the same. Further information about Amanda’s congressional campaign can be found on her website.

The information in this column 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.

An Open Letter to My Senator: CDC Has Killed Me

(Editor’s Note: Charles Malinowski is a 59-year old Paso Robles, California man who lives with Reflex Sympathetic Dystrophy (RSD), degenerative disc disease, ankylosing spondylitis, spinal stenosis and other chronic pain conditions.  He recently wrote this open letter to U.S. Senator Kamala Harris (D-CA). We thought his letter worth sharing with PNN readers.)

Dear Senator Harris,

The CDC has killed me!

Let me repeat that: The CDC has killed me!

I have a severe neurological condition that causes me unspeakable and crippling pain. Pain medication is literally the only thing keeping me alive. But with the issuance of the CDC’s short sighted, so-called voluntary opioid prescribing guidelines -- which are being rammed down the throats of medical providers -- my pain management doctor has cut me off of opiates.

For the last 10 years, I have been subjected to nearly every type of physical therapy, medical treatment and medication applicable to my affliction. The one and only thing that has ever had any demonstrable benefit in even temporarily suppressing my pain to a tolerable level has, unfortunately, been opiates.

In early October, I was told that I would have to stop taking either the oral opiates or the intrathecal opiates, as it was now illegal for a person to receive two different types of opiates via two different delivery methods concurrently. This was a major problem, as even with both oral and intrathecal opiates, my pain was severely under-managed to the point where I was almost completely bedridden. I left the house only to go to doctor's appointments.

When I was told that my pain management regimen - specifically the opiates - was going to be cut in half, even though my pain was already grossly under-managed, I spoke out about this.

CHARLES MALINOWSKI

As a result, not only was I cut off from the oral opiates, I got kicked out of the pain management practice where I have been a patient for more than seven years. The doctor said he didn't want to risk his license - but was perfectly willing to risk my life - over the CDC opioid guidelines.  These guidelines are supposed to be voluntary and are not supposed to take desperately needed pain medication away from legitimate chronic pain sufferers such as myself.

I expect that within 60 days, I will be dead from either heart failure or a stroke due to my body's inability to cope with the stress of the unrelenting pain. My neuropsychologist, who has been treating me for nearly 10 years, has consistently rated my level of pain as moderate to extreme, even while being medicated with both oral and intrathecal opiates, which I am now denied.

I'm not dead yet, but within 60 days I expect that the CDC will have effectively killed me. I honestly don't see myself being able to tolerate the pain any longer than that.

Congress, in going along with this blindly, will be explicitly complicit in this negligent homicide - or homicide by depraved indifference, take your pick - of one Charles James Malinowski, that being myself.

I would like to thank you, Senator, and all the rest of your colleagues for murdering me.

To help ease your conscience, it is not just me that Congress is complicit in murdering, but thousands, possibly tens of thousands of people in like positions.

Sincerely,

Charles Malinowski

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.

4 Infusions That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist

I am so excited to finally be to my favorite letter – "I" -- in my series on alternative pain treatments. The “I” stands for infusions.

There are many different types of infusions, but the four I will cover are ketamine, immunoglobulins, lidocaine and stem cells. I have done 3 of the 4, and one of my good friends has done the fourth with great success. So I feel comfortable sharing what I know about infusions based on my personal health journey.

Ketamine

I was afraid of ketamine when I first heard about it. Ketamine was created in 1962, when it was first synthesized by scientist Calvin Stevens at the Parke Davis Laboratories. Ketamine is a potent anesthetic that blocks pain by acting as a N-methyl-D-aspartate (NMDA) receptor antagonist. It can also reset glia nerve cells in the spine and brain.

Ketamine is not appropriate for everyone. For me, I saw it as a chance to reverse the Reflex Sympathetic Dystrophy (RSD) that I had been living with since 2002.  My excitement was great, along with my family’s. My regular treating doctors were not so optimistic about ketamine, but were not discouraging it either.

I began receiving ketamine infusions in 2009. They put me into remission and I continue with booster therapy as needed. I still have flares, but ketamine got me through the biggest challenges of living with RSD. Here is a video of me after my initial infusion treatments, which many find motivational.

Before I started getting ketamine infusions, they wanted me off opioids completely so that my nervous system would reboot better. Research showed that ketamine patients on opioids were not getting the same good results as people who stopped taking them. Since then, I have also learned that opioids also set off glia cells, which is not a good thing for nerve pain patients.

Immunoglobulins

Intravenous Immunoglobulin – known as IVIg --  is used to treat various autoimmune, infectious and idiopathic diseases. One of my best friends, who has multifocal motor neuropathy, uses it to stay functional.

I have not had IVIg yet, but if ketamine didn’t work for me, I would give it a try, insurance permitting. The cost per treatment is between $5,000 and $10,000, so for many it is not an option.

If you have the cash, the FDA has approved IVIg for graft disease and idiopathic thrombocytopenic purpura (ITP). It is also used to treat patients with Kawasaki disease, Guillain-Barre syndrome, and polymyositis/dermatomyositis. I know a number of people who have used it for RSD.

One of the complaints I have heard from friends who use IVIg is that it takes time before your feel any benefits – sometimes days or weeks. If it is a viable treatment for you, there should be some changes in your symptoms and pain levels within 4 weeks.

However, some people do not respond to IVIg and it is very expensive to try just to see what happens. The cost is high because immunoglobulin products come from the pooled human plasma of a thousand or more blood donors, who have to go through an extraction process themselves before it can be processed and ready for use in infusions.

Stem Cells

Stem cell research could pave the way for an entirely new approach to chronic pain that reduces the current reliance on opioids and other analgesics.

I tried two rounds of stem cell infusions for gastroparesis, intestinal ischemia, heart valve dysfunction, cardiac ischemia, and temporomandibular joint disorder (TMJD).

The infusions reversed my gastrointestinal issues within 24 hours and my heart issues in 7 days, but it took longer for my TMJD to feel any relief. I did get some, just not as much as the other areas of my body. I also got improved function in my ovaries, with an increase in estrogen production I did not have before stem cell therapy.

The providers I worked with said it would take 6 to 8 rounds of stem cell infusions to help my nerve pain. I don’t have the money for that, so I stopped after two treatments.

Stem cell studies I have seen show great promise for multiple sclerosis patients, and I will be watching closely to see if it works for RSD and other neuro-autoimmune diseases. Stem cells could also be used as a tool to reverse opioid tolerance and opioid-induced hyperalgesia, two problematic side effects of opioid therapy.

Lidocaine

Although my providers told me that lidocaine infusions are practically pain free, I can tell you they are not. The lidocaine infusions I was given were in conjunction with my stem cell therapy. I felt everything and came away feeling that lidocaine was not a good option for me.

My step sister did have good results from her 7-day infusions of lidocaine, so it goes to show that you have to check to see what works best for you.

Lidocaine is an amide anesthetic and has a wide range of mechanisms of action. Research has shown that lidocaine, when given in a low dose intravenous infusion, has successfully provided pain relief for several chronic pain conditions that have failed other treatment modalities. A recent study in Pain Medicine found that lidocaine provided pain relief to 41 percent of patients, most of whom had neuropathic pain. 

According to providers at Stanford University, the success of lidocaine infusion is dependent on the specific cause of your pain. Some patients report immediate and long lasting pain relief, while others say relief came slowly and only lasted while the medication is being infused. Some patients also report unpleasant side effects.

The only adverse reaction I had – besides the fact it didn’t work for me – is that the infusion itself was extremely painful. Physicians have no way of knowing how you’ll react until you try it. By the time I was begging for help during the infusion, it was too late.

PNN columnist Crystal Lindell has been getting lidocaine infusions and they’ve helped Crystal reduce her use of painkillers. A recent study in Pain Medicine found that lidocaine provided long-lasting pain relief in 41 percent of patients, most of whom had neuropathic pain. 

I would be glad to share more of my experiences with infusions for anyone who has questions from the patient perspective. I would also love to hear your stories about infusions and whether they worked for you. 

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. 

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

Why I Keep a Pain Journal

By Barby Ingle, Columnist  

In 2002, I was in what was thought to be a minor car accident. After months of getting worse, noticing new symptoms and doctors telling me it was all in my head, I set out to find answers that made sense for what was happening to me. 

Many of the medical tests that were performed did not show any problems. Even so, my symptoms were still bad and getting worse. I started physical therapy about a month after the accident, which was excruciating and seemed to make things worse.

Flash forward three years, and I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and examine me.  The thought of being examined again by a new doctor was frightening. After an hour with me, the doctor said I might have Reflex Sympathetic Dystrophy (RSD), a painful neurological condition. A test later confirmed I had RSD -- as all my signs and symptoms had pointed to for all that time. 

After finding so little information out there about RSD and having so many doctors try to treat me who did not know about it, I realized that I was the one who had to teach my caretakers.

Many doctors who are not connected with a research hospital or university do not have the time to stay up-to-date with the latest information on RSD and other chronic illnesses. RSD does not always respond to treatments that relieve other types of chronic pain. Even among RSD patients, there are different responses to treatment.

The condition affects many aspects of the patient's life in varying degrees. For me, the simple things are the toughest. Activities of daily living, personal grooming, and my social and personal life have all been affected. I was not prepared for a catastrophic injury and lost my professional life during the bad days of RSD. I have had to adjust my daily routine because of the difficulty of performing simple tasks. 

I also learned to participate in very limited leisure activities, as I had to find my tolerance levels and work within them. I used to be very athletic, and loved hiking, biking and dancing. I constantly worked out and trained my body. Now I have a limited exercise regimen.

Because of my pain, falls and blackouts, as well as medication side effects, I am no longer able to drive. I need assistance with shopping, cooking, remembering things and traveling. I am in constant need of assistance, which makes traveling, social activities, personal care and holidays more complicated.

I have difficulty sleeping, lack energy and experience stress in my daily life. All of these help the cycle of pain continue.

Over time, I have found that pre-planning for daily events, activities and trips is not something I should do out of convenience; it is something I have to do to be able to function at even a basic capacity.

When I started a daily journal, I found that prayer, having a low-stress lifestyle, and staying hopeful keeps me in a positive place mentally. It also helps me keep my records organized, allowing for better healthcare. I have learned not to sweat the small stuff, to let go of troubles from the past, and look for ways to better my future. With a good team around you, the same is possible for you.

Like most chronic pain conditions, RSD is an invisible disability, which makes it harder for people to “see” your pain. People often have misconceptions about people with disabilities, so I disclose my condition to anyone who will listen, to let them know that RSD exists, and that early detection and proper treatment are important for RSD patients to have any chance of remission.

The more people I educate, the better the chances will be that someone else with RSD will have it easier. I know what I live, I journal it and I want to help others. Maybe a journal will help you.

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. 

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.

Living With an Invisible Monster

By Marcie Ann Dillard, Guest Columnist

I live with an invisible monster that consumes both body and mind. A monster that steals the ability of children, mothers, fathers and grandparents to sit, stand or walk. A monster that consumes finances, destroys friendships, marriages and families.

I say invisible monster because when I speak these three letters -- RSD --- which stand for Reflex Sympathetic Dystrophy, I am faced with the blank stares of the ignorant.

What is such a thing I myself in 47 years of living had never heard of? How could I have not known of this monster that stalks me like a crouching lioness after a simple leg fracture?

She pounced suddenly and fiercely, feeling her teeth, her bite sink into my body, setting my flesh on fire in moments. Now in the grasp of a beast that respects no one, she sinks her claws deeper. Her death grip no one will ever escape.

Going from doctor to doctor, I can feel her but she goes unseen even after dozens of MRIs, CT scans and x-rays. The searing unseen pain forces me to look for freedom from what I now understand to be the most painful disease known to man.

I begged for those sworn to help me to release me from her grasp, but ignorance -- mine and theirs -- gave her time to continue her devastation.

I marched through this life boldly; a mother, wife and business owner, never giving a thought to the day that would end. Then that day came. The only evidence often of her existence was the life stealing pain, and the integrity of my words lost among strangers.

The skeptical looks of the medical community as I once again describe the effect her grasp has on my body.

Through the tears of pain and hopelessness, the joy of living is veiled in agony. The blank stares of loved ones when I choose to be honest about what I daily experience. Self-confidence fades, the beat of the drum I confidently marched to become unclear, self-worth gone, as one by one the things that made me Marcie Ann become painfully impossible feats.

She never stops chewing my flesh, the nerve twitches and the muscle spasms a constant reminder that I remain helpless prey to a ruthless predator.

If I spoke these six letters -- CANCER -- I would be met with the sympathy of the community. Not to offend those who suffer from that monster or have suffered a loss to it, but perhaps someone would run a marathon in my honor or host a fundraiser to help me secure lifesaving treatment.

If I said it was a terminal illness there would be no misunderstanding of the impending outcome. But with chronic, progressive and incurable pain, the well of sympathy quickly dries.

Silent suffering.

In this lifetime, the lioness will never deliver her final blow and end my suffering .

Marcie Ann Dillard lives in Washington state. She was diagnosed with Reflex Sympathetic Dystrophy in 2012, two years after her symptoms began.

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.

Learning How to Live with Chronic Pain

By Barby Ingle, Columnist

When I became so debilitated by chronic pain and doctors could not figure out what was going on, I could no longer hold my life together. It was a minor auto accident that triggered crazy symptoms that didn’t make sense to me or my doctors.

When the first symptoms of Reflex Sympathetic Dystrophy (RSD) began, I thought I was being ridiculous. The pain was overwhelming. It took all of my attention and energy just to be able to focus. It felt a burning fire in my face, neck and shoulder, and my skin became discolored. I also started having balance issues and falling.

I remember at a practice I was working with a male cheerleader and we did a stunt. Everyone around us was yelling, “Coach, stand up straight. What are you doing?”

I kept saying I was straight, but then I looked down. I didn’t even know how he was holding me up in the air. I was in the weirdest position; legs bent, leaning forward, arms not in the right place. Until I saw what my body was doing I had no idea what everyone was so upset about. 

I was coaching, heading to counseling appointments, chiropractors and neurologists, and sleeping in my office or wherever I could find a place to sleep. It wasn’t solid sleep. It was for 20 to 45 minutes at a time. I was overwhelmed physically and emotionally, not being able to coach like I wanted, but still trying not to let my team members down.

I wish I could go back and help them understand what I was going through. I wish I had let go of my job sooner so that they could have had a better year. I didn’t know that what I was dealing with was not going to be as easily overcome as endometriosis was. That was a struggle that made me believe everything was just a challenge that I could get past. Not this time. It was going to take years, financial strain, and learning new life skills. I just didn’t know it. 

I was no longer able to handle my dream job of coaching cheer and dance at a Division I-A university. My business started to crumble and eventually closed. My husband stopped supporting me emotionally and physically. I didn’t have the energy to take care of me and him any longer. One good thing that came from it was that after our separation he found God, and was baptized into the Catholic Church the next Easter.

The biggest reason our marriage fell apart was he had me feeling that it was all in my head, and tried to convince my family and our friends of the same. My psychologist and psychiatrist both told me he was wrong. What I had was situational depression and they assured me what I was going through was normal. They had faith in me and helped me get faith back in myself. 

We began marriage counseling before the accident because of our struggling relationship, but that was no longer an issue because the relationship was over. We were divorced within 3 months of filing for separation. Now I needed help getting my new life in order and to continue counseling, until I felt I had the life tools I needed to be the best me I could be.  

I rated the physical pain I had from the accident in the beginning as a level ten. I did not think I could take anything worse. But as each surgery or procedure was performed and the pain only worsened, I wanted sometimes to have that first pain back.

As our bodies get “used to the pain,” it sometimes gets easier to manage and deal with. With each additional trauma and spread of RSD, the pain I thought was unbearable becomes a livable level. But I wasn’t living.

“Reflex” is any process in your body that automatically goes haywire. “Sympathetic” is your sympathetic nervous system, which makes you feel like you are on fire and you can’t put it out. “Dystrophy” is the loss of muscle and bone, which left me in a wheelchair for many years.

As an athlete, it was difficult to understand how working out and pushing myself were making me worse, but it was. Pushing myself too far taught me that it can cause damage. I realized that doing this was creating further damage to my body and pain pathways. I learned that trying smarter is more important than trying harder.

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. 

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.

FDA Designates CRPS Drug as ‘Breakthrough Therapy’

By Pat Anson, Editor

The U.S. Food and Drug Administration has designated an experimental drug as a potential breakthrough therapy for Complex Regional Pain Syndrome (CRPS), a chronic and disabling neurological disease for which there is no cure or treatment.

Neridronic acid was discovered by Abiogen Pharma, an Italian drug maker, and is jointly being developed with Grünenthal, a German pharmaceutical company.

The Breakthrough Therapy designation by the FDA came after the companies reported the results of a Phase II clinical trial showing a significant reduction in pain and symptoms of CRPS with neridronic acid treatment. The drug has already received fast track and orphan drug designations from the FDA.

The agency considers a new drug as a breakthrough therapy if it is intended to treat a serious condition and if preliminary clinical evidence demonstrates substantial improvement over current treatments. There are no current FDA approved treatments for CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).

"It is very encouraging to see that the FDA recognizes the urgent need for new treatments for patients with CRPS and has granted neridronic acid the status of a Breakthrough Therapy. This supports our efforts to develop an efficacious treatment option to these patients,” said Klaus-Dieter Langner, MD, Chief Scientific Officer of Grünenthal. “We are committed to working closely with the FDA to bring neridronic acid to patients with CRPS as fast as possible.”

In the Phase II study, neridronic acid or a placebo was administered intravenously to 464 patients with CRPS type 1, when the disease is in its early stages. The study ended in November.  

A previous study of 82 CRPS patients in Italy found that those who were treated with infusions of neridronic acid experienced significant and persistent reductions in pain.

Neridronic acid is currently being evaluated in a Phase III clinical trial. If successful, the drug could be the first FDA-approved treatment for CRPS, which is characterized by severe, burning pain that usually begins in the arms or legs after an injury or surgery. The pain often spreads throughout the body.

"Grünenthal is highly dedicated to improving the lives of patients with pain as well as rare diseases with limited treatment options. This is an area of high unmet medical need,” Gabriel Baertschi, CEO of the Grünenthal.

The company recently purchased Thar Pharmaceuticals, which is developing an oral form of zoledronic acid for the treatment of CRPS. That drug is also undergoing a Phase III study.

Neridronic acid is an investigational aminobisphosphonate. According to the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), bisphosphonates have been used for years overseas to treat CRPS.

“We need options and if this can help patients and encourage other medications and treatment options to come onto the market for CRPS’ers, it’s a great thing,” said Barby Ingle, who suffers from CRPS/RSD and is President of the International Pain Foundation.

“We saw with fibromyalgia and Lyrica that once it (fibromyalgia) had a medication designated it gained more awareness and acceptance in society, leading to better access to care. The same could happen with a CRPS designation for a medication, leading to greater treatments and a cure in the future.”

The Importance of Participating in Pain Research

By Barby Ingle, Columnist

Over the years I have participated in many research studies and potential new treatments. One such study was just published in the Journal of Translational Medicine by Drs. Garabed G. Demerjian, Andre Barkhordarian and Francesco Chiappelli.

So many people over the years meet me and soon realize that I have a device called an oral orthotic in my mouth. This “OO” as I lovingly call it has helped me so much, and now there is published research behind what it is doing for me.

Back in 2002 when I developed Reflex Sympathetic Dystrophy, I lost partial vision in my right eye. I saw many eye doctors and ENT (ear, nose and throat) specialists who were unable to pinpoint where the breakdown in the nerves were. They hypothesized that it was due to inflammation from the RSD cutting off a nerve pathway.

Within 30 seconds of putting in the OO, I had my vision back after 10 years of being told that I would never see properly again. My world is now brighter with the OO, literally.

I also had improvement in pain levels affecting my entire body. I have been able to get my infusion therapy minimized to only 1 or 2 boosters a year and get off all daily pain medication. I also have had improvement in my balance, coordination, dystonia, memory and mood. My migraines and headaches are less frequent, and although weather and pressure changes still affect me, it is not to the extent it was prior to my oral orthotic use.

The research doctors and my treating doctor, Garabed Demerjian, approached their study with an individualized approach that they made measurable for each patient who participated. I underwent multiple MRIs, cat-scans, X-rays, synovial fluid testing, psychological testing, and saliva testing.

These tests were done in an effort to quantify the outcome and show the effectiveness of the oral orthotic. I participated in the study in 2015, about three years after getting my OO. I already knew that the tests were going to show amazing results. That is great for the scientific community and for advancing new treatment options.

Traditional research in the health sciences usually involves control and experimental groups of patients, and descriptive and statistical measurements obtained from samples in each group. The research I was part of used a novel model known as translational medicine, which "translates" research into more effective healthcare -- a "bench-to-bedside" approach. This type of research is increasingly becoming more established in modern contemporary medicine.

I often say that each patient is different. Our biological makeup and life experiences mean disease often affects us in different ways – making a one-size-fits-all approach to medicine impractical. Science is seeing this too. It’s becoming more focused on translational research for the ultimate benefit of each individual patient. This is what we need.

I know and understand that being part of a research study is not for everyone. It doesn’t always go as great as it did for me. But stepping up and trying something that can benefit others is very rewarding.

I thank all of the research doctors and scientists who are making a difference in our lives. It can take years of research before they see actual results, and they are not always recognized for their efforts. I find it hard to express the full gratitude they deserve. Thank you to our researchers in the chronic pain community.

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

More information about Barby can be found on 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.