Genetic Variations Involved in a Third of CRPS Cases

By Pat Anson, PNN Editor

Chronic Regional Pain Syndrome (CRPS) is one of the worst and most baffling of pain conditions. It usually starts after an injury to an arm or leg, with the skin in the affected area becoming warm, red and painful to touch. Most cases are mild and people recover after a few months, but in rare cases the condition grows worse, resulting in intense nerve pain that can spread and last for years.

Why do some people develop CRPS, while others get better? A small new study in the UK suggests that a genetic variant may be responsible for about a third of CRPS cases.

Researchers at the University of Cambridge took blood samples from 84 patients enrolled in the CRPS-UK Registry to look for variations in certain genes known as single nucleotide polymorphisms, or SNPs for short. Their DNA was compared to a control group of patients with chronic pain from fibromyalgia and low back pain.

Their findings, recently published in the Journal of Medical Genetics, show that an SNP in 4 genes (ANO10, P2RX7, PRKAG1 and SLC12A9) was “more common than expected” in patients with CRPS for at least a year (CRPS-1) than it was in the fibromyalgia/back pain group.

In all, 25 of the 84 patients (30%) with CRPS-1 had the variations in at least 1 of the 4 genes. None of the variations was found in the control group.

Interestingly, men with CRPS were more likely to have the variations (57%) than women (24%), although the sample sizes are so small the discrepancy will need to be confirmed in a larger study. In real life, women are more likely to have CRPS than men.

“This raises the possibility of different mechanisms of disease in males and females in CRPS-1 and that therapeutic responses may also be influenced by sex,” wrote lead author C. Geoffrey Woods, a clinical geneticist at the Cambridge Institute for Medical Research.  “Our data support an underlying genetic predisposition to CRPS-1 in up to a third of cases, with this effect being most prominent in males.”

There may be a biological explanation for the findings, because the ANO10, P2RX7and SLC12A9 genes are found in immune cells of the peripheral nervous system, which becomes inflamed by CRPS.

All 4 genes are also expressed in macrophages — a type of white blood cell involved in the immune response of healthy people. This suggests that variations in those 4 genes may be what triggers CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).

CRPS/RSD is difficult to treat and there is no known cure. Some patients have found relief through Scrambler therapy and ketamine infusions.

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 

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.  

Back to the Future in Pain Care

By Carol Levy, PNN Columnist

The start of another year started me thinking about my 42-year fight against trigeminal neuralgia (TN) and how things have changed in its diagnosis and treatment.

I was 26 when the pain started. It came out of the blue, like a lightning bolt inside the skin of my left temple. It was horrendous, lasting maybe 20 seconds or so, and then it subsided. After a clinic doctor diagnosed it as trigeminal neuralgia, I was repeatedly told it could not be TN because I did not meet the criteria for the diagnosis.

At that time, it was very simple: TN pain had to be in a specific anatomical area. Mine was. The pain also had to be spontaneously triggered by touch, no matter how slight. Mine was. But you had to be at least 60 years old or, if you had multiple sclerosis, over age 40 to have TN. I was only 26. Too young.

So, regardless of the pain being in the right place and occurring in the proper fashion, it had to be something else, although they had no idea what that might be. It took more than a year before someone finally recognized it as trigeminal neuralgia, despite my youth.

Over the years the definition and diagnostic criteria for TN have changed. There are now two recognized types of TN:

• Trigeminal Neuralgia 1: Intense, stabbing pain attacks affecting the mouth, cheek, nose, and/or other areas on one side of the face.

• Trigeminal Neuralgia 2: Less intense but constant dull aching or burning pain.

You can have both types of TN. I have constant pain, as well as spontaneous and triggered pain. Neither type includes an age factor. This makes it easier for a young person to be diagnosed with TN today. 

Changing Treatments

Not only has the definition changed, but so too have the treatment options. When mine started, there were less anti-convulsants to try, the first line of treatment for TN. Now there are many new medications, including botulinin (Botox) injections.  

Over the years I had many operations, some of them no longer in use. Now there are gamma knife and cyber procedures, things not even a glimmer in someone's eye when I was first diagnosed or being treated. 

Reflex Sympathetic Dystrophy (RSD) is another pain disorder which has come a long way. Even the name was changed, from RSD to CRPS (Complex Regional Pain Syndrome).

In 1981, I entered a residential pain program. There were only 8 of us. One was named Joanne, who had very weird, unbelievable symptoms and complaints, so weird even the doctor had trouble believing her.

Joanne said she had tremendous pain throughout her body, and trouble controlling her bowels and bladder. She insisted it all started right after a statue had fallen on her foot. It sounded fanciful at best. She seemed a perfect example of pain being psychological. 

If that happened today, Joanne’s complaints might be taken more seriously and she could be diagnosed with CRPS. But at that time, it was a disorder that did not appear on anyone's radar. 

Since then many new medications and treatment options have been devised or added to the armamentarium against CRPS, such as ketamine infusions, intrathecal pain pumps, hyperbaric oxygen therapy and bisphosphonates. The same is true for many of the other pain disorders. Research is ongoing, new medications and surgeries are being developed. 

We often lament that nothing new is being done for us. Where is the research? Where is the treatment that will finally give us relief? 

It can be hard to see sometimes where we have been vs. where we are now, much less where we may be going. But history shows that more progress is being made than most of us may realize. And that is a good thing. We have to look to the past to see not only how far we have come, but how much farther we still have to go.   

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

Are You Still Hoping for a Cure?

By Rochelle Odell, Columnist

As a 25 year survivor of Complex Regional Pain Syndrome (CRPS/RSD), I ask myself all the time if I have lost hope, become too cynical and if reality has finally hit home.

Yes to all three, unfortunately. And I don't like that.

For most chronic pain conditions, there is usually hope for a cure. But for some there is no hope at all -- people just have to learn to live with the outcome and hope there are doctors who know how to treat it accordingly.

When viewing the main CRPS/RSD websites and support groups, hope for a cure is a common thread. But in reality for me and others like me who have lived with this insidious monster for far too long, there truly is no hope. Medical treatment and modalities have changed little in the 25 years I have battled this disease and that concerns me.

Why haven't greater strides been made? Possibly because researchers and scientists just do not fully understand the human brain yet. Until there is a complete understanding of the mechanics of this disease and others like it, hope ends there.

I recently learned from a friend that her physician, a general practitioner, had little respect for anesthesiologists who treated post-surgical pain and how he felt a patient wasn't treated appropriately. So I looked into when pain management became its own medical specialty.

Pain management became the first sub-specialty of anesthesia in 1993, the same year that I was diagnosed with CRPS/RSD. Most pain management specialists are anesthesiologists, but neurologists and psychiatrists can also become board certified in pain management. The training is long and arduous, but they are among the highest paid in the medical profession.  

When my treatment began, my first pain management physician was still learning and I was his all too cooperative guinea pig. I just wanted the CRPS/RSD pain in my left foot to go away. Would I go down that path again? Never.

My outcome may have been much better without all the “minimally invasive” procedures that were attempted. It started with epidural blocks and progressed from there. The more procedures that were done, the faster the CRPS/RSD spread and the worse the pain became. 

I often wonder where the term “minimally invasive” began. Even though doctors may not go deeply into the body, just by going into our spine or brain for whatever reason, they are venturing into the very nerve fiber of every patient. That is not minimal.

I have read where researchers, scientists and even some pain management physicians now believe that all those minimally invasive procedures may in the end do more harm than good.  Do I believe it?  Absolutely!  But that's just me -- although many long term CRPS/RSD patients will admit that it was wrong for them too.  Most just do not go around talking about this other dark side of the pain. 

There are times I want to scream at a patient: DON'T DO IT! EXPLORE ALL YOUR OPTIONS FIRST. AND ABOVE ALL EDUCATE YOURSELF!

But I don't, I temper my tongue.

Many of us don't believe our physicians as we are rushed through an appointment. We may be allotted only about 10-15 minutes. If you haven't written down your questions and concerns first, you soon realize you are sitting in the exam room with your mouth open as the doctor leaves, telling you to pick up your prescription at the front desk, schedule your next appointment or, worse yet, that they will be unable to treat you any longer. 

This type of inadequate treatment, with your pain increasing and no end in sight, is where cynicism soon develops.  It is also when reality hits you smack in the face and you start to question yourself. What in the hell am I doing here?

When clinical trials are started, they are aimed at a specific group of people, often in the early stages of a disease. There is often a large exclusion list, such as those of us who have had CRPS/RSD for many years. New treatments are not being investigated or developed for us, so the standard nerve blocks, injections, surgical procedures and implants are utilized. And now, because of the opioid crisis, more patients than ever are being dropped.

Treating a CRPS/RSD patient has so many variables. What works for one, doesn't work for the other, and what worked yesterday may not work the next day. Treating us has to be a nightmare for any physician.

I do have hope for patients who are newly diagnosed with CRPS/RSD, absolutely. But at this point in time, unless medical advances are developed, they soon will be walking down the same path so many of us long time pain patients or on, when hope is dashed, and cynicism and reality make a grand entrance.

I get tired of hearing the word “hope” as it has no meaning for me. Yet we are continually told to hope for a cure, to be brave, and to develop a positive attitude. Am I all doom and gloom? Not yet. I still smile and laugh.

But when alone in the dark, when reality hits me once again, I cry. 

Rochelle Odell lives in California. She lives with Complex Regional Pain Syndrome (CRPS/RSD).

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.”

Waiting for Santa in the ER

By Emily Ullrich, Columnist

Some of you may have noticed I’ve been silent for a while. I’ve been shirking my duties to the pain community because I am so fed up that it all seems futile.

I’ve been struggling with feelings of defeat and guilt at my unusual inability to muster the courage to continue. I have been deeply introspective and, for once, I’ve had no words for the profound emotional disenchantment that one experiences when they realize that most doctors really don’t care.

My mother tells the following story about me when I was a little girl, and it struck me that this feeling I have today is the same one I had when I realized there was no Santa Claus.

She says that I essentially disassembled the entire house of cards that kids are brought up believing in. She says I was lying in bed when I asked her if Santa was real. She attempted an explanation that Santa was the spirit of Christmas and that he wasn’t an actual person, but that his essence was within all of us. According to her, I went on to ask if there was an Easter bunny, a tooth fairy, or even a God.

A few years later, I left the sheltered life of Montessori school, where creativity was valued, analytical thinking promoted, and social interactions remained innocent. I entered public school in the midst of puberty. Despite my many futile attempts at preppy mall fashion, and rehearsed and repetitive social coolness, I could not blend in.

To my dismay, my quirky, outside-of-the-box thinking betrayed me daily. I became the weird, socially awkward, politically and culturally over-saturated smart girl, wearing the body of a 6-foot tall woman.  As a writer, these experiences have given me a unique lens through which to view life and are now the things I pride myself in.

As a chronically ill patient, I have been thrown right back into the post-traumatic stress of that time, my intellect and strong personality are not seen as behaviors of a good patient. I feel l have to be a fake to get the care that I need. I feel this sensation washing over me every time I have a doctor’s appointment, surgery, procedure or hospital stay.

I’ve written before about the inhumanity and cold, cruel treatment I have received more times than I care to remember. I am aware that there are doctors and nurses who do care and actually want to help, and I have been blessed more than a few times with having these amazing people as my caregivers.

But if I am truly honest, more often than not, these gems of humanity are not the ones we patients get.

I understand that they’re at work, doing a job, and they have to do more for us than the usual patient. Some are also jaded, uninformed, insensitive and, frankly, shouldn’t be in this line of work.

When a patient’s life, health, and attitude are psychologically and sometimes physically neglected, disrespected, and infused with negativity, it’s scarring. It plays over and over in your head. Although it’s really hard to control my temper and emotions in this situation, I do my best. It’s not natural for me. I am opinionated and strong-willed.

I’ve learned the hard way that when I act how I feel like acting, my care gets even worse. I always wonder what I could have or should have done differently to make the situation better.

I know that I am probably coming across as very negative, but there is one thing that I know about myself -- when I am at my worst, I am often at my best. What I mean is, I want to make others around me comfortable, and the more serious a situation is, the more I try to bring levity and positivity. I try to make people feel at ease, to laugh, and to know that I am grateful for their help. I make a point of being very polite to my caregivers, even when I’m frustrated with them, and I make a point to ask how their day is, even if they haven’t asked about mine. This leads me to my most recent hospital stay.

My Latest Trip to the ER

I went to the emergency room because my home healthcare nurse demanded it after noticing that my arm with a PICC catheter line was very red and inflamed. As usual, the ER doctor treated me like I was there for fun. Because waiting for 6 hours in a room full of sick people and being treated like crap is everybody's idea of a good time!

It turned out that I had pulmonary embolisms -- blood clots in my lungs -- a life-threatening condition which frequently causes stroke or heart attack. The doctor scolded me that I should "take this seriously," as though I got the clots from doing some sort of illicit behavior and was obviously careless about my health. I wonder if it ever occurred to him that maybe I was taking it seriously -- by going to the damned ER!

He then launched into a lecture about the evils of pain medications, and even alluded to the doctor’s oath to "first do no harm," insinuating that the doctor who prescribed my pain medicines (who happens to be the kindest, most compassionate and knowledgeable doctor I’ve ever had) was not helping me, but harming me.

He assessed all of this in two minutes of talking at me, not to me, and without any idea of the myriad health conditions I live with. Sick, and even sicker of dealing with this re-run of the C+ med student-come-doctor with a God complex, I mustered the energy to stand up for myself. I argued that this was probably not the best time for a discussion about changing or completely discontinuing my medications, seeing as I had pulmonary embolisms to worry about, and a pain doctor whose specialty it is to deal with that was not present.

God forbid, I had challenged his almighty ER doctor knowledge and here's where it got good.

He decided to un-diagnose my Reflex Sympathetic Dystrophy (RSD) -- an extremely painful and complicated condition I was finally diagnosed with after two years of surgery, doctors’ visits, and being told there was nothing wrong with me that a knee joint replacement and antidepressants wouldn’t fix.  

Then I spent three days in a hospital being run through a battery of tests and a whole team of doctors had agreed on my diagnosis of RSD.  It’s an illness that I take medications for, have physical therapy for, use a cane for, and which you can tell I have just by looking at my knee -- which he never did.

"You don't have RSD," he said. Based on what? Maybe the fact that I wasn't screaming and writhing in pain, as he thought I should be?  

"Did a neurologist diagnose you?" he asked. I explained that I spent days in the hospital having a battery of tests and a number of different specialists all agreed that I have RSD. Again, he asserted his disbelief, without ever looking at my knee!

Begrudgingly, he admitted me to the hospital, as though I intentionally manifested blood clots in my lungs just so I could hang out with his charming self. He also lectured me further about the gravity with which I should treat this situation.

I wonder since if he has ever thought about this interaction with me, and in any small way realized the hypocritical irony that his entire discussion was loaded with.  

I can't stop thinking about what happened. Or where Santa went to.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

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.

Make the Life that You Want

By Barby Ingle, Columnist

Lately I have been living my dreams, but at the same time realizing how much I have gone through over the years, especially the last two.

Before I got sick I was active, a go-getter, never quit and efficient. Nowadays, I am still as active as I can be, still setting goals and working towards accomplishing them, and trying to keep a positive attitude. But I am not efficient anymore. It’s a large change.

I find that many people who develop an autoimmune condition were overachievers prior to their illness. Did we run ourselves down? Did something in our past prevent us from healing? Or did we just draw the short straw of life?

At this point it doesn’t really matter to me. A life with chronic pain management is my reality. I didn’t do it so well in the beginning and looked for others to fix me. I didn’t take responsibility for creating my own oasis. It was too much just trying to get to the doctor’s office for appointments when not being able to drive.

It took a lot of years, but I got reorganized and also gave myself permission to not be perfect. I came to understand that I will be managing my chronic diseases until I pass away. I can still accomplish many things; it is just going to take me longer.

I was living my dream and it turned into a nightmare. Sound familiar? I began a battle of life and death literally and mentally. 

For those reading that are not familiar with my story, I have been battling chronic pain since 1997, first with endometriosis -- which resulted in a full hysterectomy and left oophorectomy.

Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. Then came temporomandibular joint syndrome (TMJ), hypothyroidism, hypoglycemia, arthritis, gastroparesis and ischemia -- not to forget a loss of balance and coordination that seems to lead to falls and bone breaks. Because my immune system is weakened, if anyone around me is sick, I will soon be as well.  

I lost my physical abilities and was bed bound for years. I spent many years using a wheelchair just to get out of bed and leave the house. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief and answers; and then coming up against healthcare professionals who blow you off or do not believe what you are telling them.

I have learned the hard way that the healthcare system is not always what we are led to believe. I think that from childhood, we should be taught prevention, health responsibilities and health rights. With 1 in 3 Americans living with at least one disease that causes chronic pain, these are important life lessons. 

People look up to their doctors and put total faith in them. But it is important to remember that doctors study a particular practice of medicine. Just because they are a neurologist doesn’t mean they can treat diabetic neuropathy, multiple sclerosis, Lyme disease, or RSD. Each doctor gets a small variety of a medical field and finds a specialty that they love and work on with research and education.

Knowing this will help you get better healthcare. Don’t be afraid to ask questions about your doctor’s education and background. What is their specialty?

I know that there are far too many pain patients who experience something similar to my story. Although each of us is unique and living with our own variations of a chronic disease, having a shared knowledge of overcoming the challenges that we face can be helpful and encouraging.

I had to learn the hard way -- and now share my story to give hope and answers to patients, caregivers and healthcare professionals. I hope by speaking out about my journey it prevents it from happening to others. I enjoy hearing other patient’s stories as well, because it helps me see that I am not alone.

I have had many twists and turns through the medical system, and now encourage the importance of  positive thinking, standing up for ourselves, and improving our knowledge even in the worst of times. Let’s get back to dreaming about big, positive and happy lives.

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.