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.

CRPS Patients Needed for Clinical Study

By Pat Anson, Editor

About 80,000 Americans each year are diagnosed with Complex Regional Pain Syndrome (CRPS), a poorly understood condition caused by injury or trauma that leads to throbbing and burning pain that never goes away. It often takes years and multiple doctors before a patient is diagnosed with CRPS – and by then the pain has often migrated to other parts of the body and has become chronic.

That’s the dilemma now faced by Axsome Therapeutics (NASDAQ: AXSM), a biopharmaceutical research company that hopes to win FDA approval for an experimental, non-opioid drug that would be the first medication of any kind approved for treating CRPS --- also known as Reflex Sympathetic Dystrophy (RSD).

Axsome is conducting a Phase 3 clinical study of the drug --- called AXS-02 --- in the United States, Canada, the United Kingdom and Australia.

The challenge? Although Axsome only needs about 190 patients for the CREATE-1 study, it’s having trouble finding enough eligible patients. They’re looking for patients who suffered their initial injury in the last year and who were diagnosed with CRPS in the last six months.

“We’re trying to find patients very early in the stages of CRPS,” says Randall Kaye, MD, chief medical officer of Axsome.  

It typically takes a year or more for a patient to get a CRSP diagnosis because its early symptoms are not all that different from acute pain caused by surgery, a broken bone or some other type of trauma. It takes an experienced doctor to recognize the early signs.

“These are patients who continue to have pain that just doesn’t quite follow the routine course. Even after about a week or two, something is different. The pain is too much or the quality of the pain is just different. They describe a burning sensation or there’s exquisite sensitivity to temperature,” says Kaye. “What happens to these patients is that they continue to see a variety of physicians before they’re given that label of CRPS.”

a CRPS PATIENT 6 MONTHS AFTER leg fracture

a CRPS PATIENT 6 MONTHS AFTER leg fracture

“I wish it was easy to diagnose Complex Regional Pain Syndrome,” says Barby Ingle, president of the International Pain Foundation (iPain), who was diagnosed with RSD/CRPS two years after a car accident that injured her shoulder. “I went from having RSD in my face and shoulder. It then spread to my right arm and hand, then my entire right side. By the time I was properly diagnosed I had full body including organ involvement.”

“I have personally spoken to thousands of patients who have been diagnosed with RSD/CRPS. Out of all of them, two were diagnosed within the first 3 months, most took over a year. For me, I saw 43 providers before receiving a proper diagnosis. Most pain providers were not educated and although providers are getting better education now, there are still major delays.”

Opioids and other pain medications only dull the pain of CRPS, but Axsome is hoping that AXS-02 can also treat the underlying condition that causes the disorder.

“I hope so,” says Kaye. “Instead of just relieving pain, we’re getting right at the underlying pathophysiology of the condition.”

AXS-02 is an oral formulation of zoledronic acid, an injectable bisphosphonate that inhibits the production of compounds that cause bone pain. Bisphosphonates have long been used to treat osteoporosis and Kaye believes they might also stop the progression of CRPS.

“It’s pretty straightforward. Patients take one tablet once a week for six weeks and they’re done,” Kaye told Pain News Network. “We don’t think there will be a reoccurrence based on the mechanism of action. But we want to be sure.”

Proving that AXS-02 can do more than just relieve symptoms of CRPS will take time. If it can find enough patients, Axsome hopes to finish the CREATE-1 study in mid-2017. Additional studies may then be needed. If the clinical results are positive, the Food and Drug Administration has granted “fast track” and “orphan drug” designation for AXS-02, which will speed up the application and approval process.

CRPS patients interested in applying for the CREATE-1 study should click here.    

My Life as a Teen with Chronic Pain

By Stacy Depew Ellis, Guest Columnist

School, sports, music, catching up on the latest gossip. That is what I wish I could say my teenage years were filled with.

Don’t get me wrong, I had a great life. However, I was more concerned with being at school, when my last dose of medicine was, and how I was going to get up the stairs.

When I was in eighth grade, I had a traumatic accident in my dance class. After being misdiagnosed and put in a cast for almost three months, I was diagnosed with a chronic pain syndrome called Reflex Sympathetic Disorder (RSD) or CRPS.

I was sent to yet another doctor to see about treatment. It was decided that I would continue taking pain medication and start receiving lumbar injections. Little did I know that sleepless nights and several emergency room trips would also be included. I would be given more than the recommended amount of painkillers and would still be screaming in pain. Every trip back there offered more questions about a teenager being addicted to prescription drugs. Every doctor in town had seen me.

I started high school as a homebound student. I was going to school for my elective classes and seeing a teacher at my house for core classes. A lot of kids my age got hurt, most of them had a cast at some point. But my illness wasn’t visible; you couldn’t see anything wrong with me. I began losing friends and rumors spread like wildfire throughout my community and school. The worse my pain was, the worse the rumors were. It was tough, but I got through school.

STACY DEPEW ELLIS

STACY DEPEW ELLIS

After my 33rd spinal injection, I put a stop to the poking and prodding. The doctor hit a nerve and I was paralyzed from my shoulder to my finger tips for two days. Forty-eight hours of not moving an arm. Even more doctors came to see me and I started what would become the first of many steroid treatments.

Time went by and nothing got better. I had headaches, achiness, and started having trouble putting my thoughts into sentences. I saw a neurologist who once again started a smorgasbord of tests. Using my body as a human cushion was normal. What seemed like years of MRIs, spinal taps, and some things I have never heard of, led to the diagnosis of multiple sclerosis.

MS? Really? I was 21 years old.  My first round of treatment was a huge dose of steroids. I took 150 Prednisone pills followed by three days of IV steroids. My flare ups were bad, leaving me in the hospital for weeks at a time. I was a guinea pig for these pharmaceutical companies, injecting myself with a different medicine every month to see which worked best.

It was relieving to finally have a diagnosis and know what was wrong, but having MS is almost worse than not knowing. Heaven forbid I get sick and need to see a doctor. No one wants to treat someone with something like MS. Doctors immediately go to “it’s just the MS” and real problems get overlooked and never fixed. Honestly, the dentist even has trouble being your doctor.

I have been on medicine almost my whole life. I have been seen for depression and spent my paychecks on medical bills. There may never be a cure for multiple sclerosis and I may always be popping pills and injecting things into my stomach, but I am happy to say that I do my hardest to not let my disability hinder me. I try to not let it even be a part of me and I live my life to the fullest.

I will be on anti-anxiety medicine forever but I also believe that I can do anything that I desire. That is something that no doctor can ever take from me.

Stacy Depew Ellis lives in Alabama with her husband. Stacy proudly supports the Alabama-Mississippi National Multiple Sclerosis Society and the Ronald McDonald House Charity, which provided housing for Stacy and her mother when she was in a treatment program in Philadelphia.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Making a Hospital Stay Easier

By Barby Ingle, Columnist 

Just as you should take a personal medical history to your doctor visits, being prepared for emergency room visits and hospital stays is also a good idea. A safe, smooth visit is exactly what you need when you are a chronic pain patient who is trying to heal or fight an illness.

I have unfortunately been to the hospital too many times now over the past 18 years. In the beginning, I did not go prepared. Nevertheless, through multiple visits, I have found a few things that allow me to get better treatment from the staff. 

For a better hospital stay, I now ask for a room in a quiet part of the hospital, as sharp and sudden noises exacerbate my pain. Most hospital rooms now have their own thermostat, so you can control your own temperature. If your room does not have its own, you can ask the nursing aide to assist with making you more comfortable, such as getting warm blankets.

When I am assigned a roommate, I ask for my bed to be farthest from the door so that their visitors don’t accidentally bump into me, and I can have less interruption with my resting. When possible, before their guests arrive, my husband or I inform them of my condition and how noise raises my pain levels. It is best to explain it to your roommate prior to his or her guest’s arrival so that he or she may explain it to them for better cooperation.

I have also learned to bring blankets and pillows from home. They are typically softer and my quilts are more comforting, both in warmth and as a reminder of home.

Most of the hospitals I have stayed in now offer an air mattress that can be used to adjust the bed to your preference. Comfort should be a big consideration so that you can heal faster.

It is almost unavoidable to not get poked with a needle as a patient in the hospital. They typically check blood at least once a day and use IV fluids to keep you hydrated. Medications are also administered with needles or through your IV. When they are drawing blood or putting in IV needles, ask for pediatric needles because any new trauma can cause RSD to spread to a new site.

If a person takes my blood and I find them to be supportive and cooperative, I have asked that they be the one to check my blood every time during that visit. I even had a nurse who agreed to come in to take my blood, even though she was off duty for one of the days I was in the hospital. I now have a “portacath” – a small catheter connected to a vein. I ask them to take blood draws from it for less needle poking.

While you are asking for better ways to get through a blood draw, have a nurse place a sign above your bed designating your affected limb(s). I had a nurse at the last hospital who put a red bracelet on my unaffected limb and a red sticker on my chart. This served as a good reminder to the nurse and aides as they walked into the room. They see multiple patients on your floor, and as patients come and go often, you want to stay on top of your care. Be your own “chief of staff” and employ the same practices at the hospital that you do with your regular doctors.            

I also bring to the ER and hospital a list of medications. Sometimes I have had to have my own brought in. I think it is good to have my own supply there so I can control when I take them. Otherwise, have the nurse check with the hospital pharmacy to see if they carry all of your medications. Nurses can’t always be there at the appropriate time to administer medications or help with other needs due to an overload of patients. Therefore, if you have your meds available, you can stay on schedule.

I also have found that the hospital has charged me for taking my own medications, even when I brought them from home, although the cost will be less than having them providing you the medication. This can also save you from mix-ups in medications by their pharmacist. When you are on pain medication at the hospital, make sure to not wait until it is worn off before asking for more. Hospital employees often times are taught to order your medications 30 minutes after you ask for them, so it could be 45 minutes or more before they actually arrive to your room from the time you ask for them. Keeping pain low is easier then lowering pain after it has skyrocketed again.                       

Something I do at home is keep items on the bedside table for easy reach and use. In the hospital, I use my tray table to serve the same purpose.  I have it placed in a position so I do not bump into it when resting, but it is close enough to utilize it for my things.  Also, if a nurse moves it to assist me or take blood pressure, I am sure to ask her to move it back into position when she is finished.

Healthcare institutions that are accredited to assess and treat your pain have been mandated to treat pain as the fifth vital sign.  You have the right to be taken seriously, believed and demand pain control. If you feel that your needs are being overlooked or intentionally ignored, ask to speak with hospital administration as soon as possible. Remember to be calm when complaining or they may not take you seriously. 

It never hurts to ask for things that can make your stay more enjoyable and comfortable.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

Power of Pain: NERVEmber

By Barby Ingle, Columnist  

In a few short days Nerve Pain Awareness month begins – a global movement known in the pain community as NERVEmber.

I began the NERVEmber project in 2009 as a way to bring more attention to chronic nerve pain conditions such as Reflex Sympathetic Dystrophy (RSD/CRPS) and diabetic neuropathy. The term NERVEmber is derived from the burning pain people with neuropathy feel, combined with the month of November. 

The Power of Pain Foundation hosts the official NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber and bring awareness to the 150 plus conditions that have nerve pain as a symptom.  

The color orange is the international color for chronic pain awareness, which also fits right in with the fall colors we typically see.

Our largest spotlight throughout the month shines on RSD, which is one of the most painful conditions known to mankind. Yet, like many chronic pain conditions, RSD is misunderstood, mistreated and often misdiagnosed. 

Each day during the month of NERVEmber the Power of Pain Foundation will present an awareness task that we can all participate in. This year we are also giving away over $1,000 in prizes -- available to anyone who registers to participate and uses special hashtags on social media, completes daily tasks, and hosts or attends an event. The more you participate in official NERVEmber events, the more chances you have to win!

You can bring more awareness to conditions like RSD, CRPS and diabetes by posting every day in NERVEmber using social media tags on your posts such as @powerofpain and #PaintTheWorldOrange. Using these tags will earn participants chances to win some great prizes.

The Power of Pain Foundation and the #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s, #OrangeInitiative,  #ColorTheWorldOrange, and #ColourTheWorldOrange. 

Official events include tasks shared on social media, wearing t-shirts, Paint the World Orange, and educational series.

The daily calendar of events are available here on the NERVEmber webpage.

One of our newest additions to the project is #painPOP. We are asking people to get involved by popping a balloon and challenging others to do the same or make a donation to help the Power of Pain Foundation continue our education, awareness and access to care programs.

We are asking participants to text, post or say something similar to, “I have the NERVE to be HEARD!"

We will also be posting educational videos on YouTube and our website. Watching videos and commenting on them gives participants more ways to win great prizes. For #PaintTheWorldOrange, we ask participants to post their #NERVEmber pictures on social media and to share your pics as you #PaintTheWorldOrange. Be sure to hashtag it #NERVEmber #PaintTheWorldOrange to increase awareness and your chances to win POP prizes.

Participants are also invited to create graphics of their own using #NERVEmber and #PaintTheWorldOrange. Don’t forget to WEAR ORANGE all month long! You can upload your orange photos to help us paint the world.

Tens of thousands have participated in past years from around the world and we are expecting even more this year. Don’t miss out on being part of a movement to make a difference.

For more information on NERVEmber visit http://powerofpain.org/nervember

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

Power of Pain: What is Comorbidity?

By Barby Ingle, Columnist

It’s not unusual for pain patients to suffer from two or more chronic conditions – what is known as “comorbidity.”

First defined by Alvan Feinstein in 1970, comorbidity is “any distinct clinical entity that has co-existed or that may occur during the clinical course of a patient who has the index disease under study.” 

To put that in layman’s terms, let’s say you have Reflex Sympathetic Dystrophy (RSD) and experience other conditions that coexist with it; such as thoracic outlet syndrome, sleep disorders, depression, severe anxiety, pots, dystonia, arachnoiditis, fibromyalgia, etc.

Just because you have RSD doesn’t necessarily mean you will have any or all of these comorbidities, but they are commonly found to coexist together or in some cases develop as a secondary issue to the RSD.

Here are a few tools patients can use to help with the comorbidities that often come with chronic pain:

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Sleep Disorders: To improve your sleep you can do a few things. Cut back on caffeine; stop smoking, and use biofeedback to lower your anxiety and stress. There is a great article on Pain Pathways about ways to improve your sleep.

Dysautonomia/Postural orthostatic tachycardia syndrome (POTS): This is a disorder characterized by orthostatic intolerance (OI) – which makes it hard for a person to stand up. Symptoms include altered vision, anxiety, exercise intolerance, fatigue, headache, heart palpitations (the heart races to compensate for falling blood pressure), difficulty breathing or swallowing, lightheadedness, nausea, neurocognitive deficits such as attention problems, heat sensitivity, sleep problems, sweating, and muscle weakness. 

OI affects more women than men (female-to-male ratio is at least 4:1), and usually people under the age of 35. Up to 97% of those who have chronic fatigue syndrome have been shown to have some form of OI. A good resource for more information on OI can be found at the Dysautonomia Information Network (DINET).

Dystonia:  Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and/or repetitive movements or abnormal postures. A good resource to learn about RSD (CRPS) and Dystonia is a research paper written by Mark Cooper, PhD, Department of Biology, University of Washington. 

Depression/ Anxiety: Over the last 30 years, it has become clear that RSD is not a psychiatric illness. Many people think that it is all in a patient’s head. They are right, but it is organically in our head and not a psychiatric illness. Depression does not cause RSD, but RSD can cause depression.

Situational depression and anxiety should be expected for those of us who have such a severe degree of pain that we cannot work a regular job. Many of us feel that nobody really understands what we are going through or how we could learn skills to smile through it. Anybody in the situation of facing RSD and living it day in and day out is going to be depressed.

Multiple studies have shown that people with disabilities are typically in poorer health and have less access to adequate care. They are also more prone to smoking and engage in fewer physical activities. With less access to proper and timely care for these patients, it is not surprising that their overall health would suffer.

We have to work on our healthcare system and change our access to care so that we are not focused on taking care of patients after they develop a disease. We need to teach preventative care from childhood. That way if a youth grows up and develops a chronic condition, the secondary illnesses and comorbidities may not be as bad as they are for today’s chronic pain patients.

Preventative measures such as better posture, nutrition and better access to timely care will go a long way in helping to slow the development of primary conditions and comorbidity. In the meantime, we need to encourage those with pain diseases to stay well through proper care, being active and connected to the pain community.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

Pain Maps: Raising Awareness About CRPS

By Jessica Mendes, Guest Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Power of Pain: There is Great Reason for Hope

(Editor’s note: Pain News Network is pleased to welcome Barby Ingle as our newest columnist. Some of you may already know Barby from her work with the Power of Pain Foundation, but you may not know the story behind her activism on behalf of pain sufferers. You can read all about it here.)

By Barby Ingle, Columnist

The good news is I have taken control of my chronic pain diseases. It has been a long tough road -- 18 years of living in the healthcare system have taught me to stand up for myself and learn to be my own best advocate.

It all began when I developed endometriosis in 1997 and worsened when I developed Reflex Sympathetic Dystrophy (RSD) after a minor car accident in 2002. I thought endometriosis was bad until I got it RSD.

Prior to the accident, I was a business owner and head coach at Washington State University for the cheer and dance program. I was living a great life and was successful in managing the endometriosis through medication and surgery. After the accident I had shoulder pain. Even though there were no signs of an injury on x-rays or MRI images, doctors suggested I have shoulder surgery. This surgery did not fix the pain and only made things worse.

Doctors were stumped and sent me a TOS specialist. After more tests the doctor realized I needed surgery again because bone spurs from the first TOS surgery were going into my lung and nerve bundles in my right shoulder.

BARBY INGLE

BARBY INGLE

In 2005, I was finally diagnosed with RSD and learned that TOS was a symptom of RSD. By the time of that diagnosis, I had been treated by 42 other healthcare providers and been told many random strange things, from “It’s all in your head” to “Your boobs are too big. You should get a breast reduction.”

My RSD symptoms were called “bizarre” by one prominent neurovascular surgeon. Some of those symptoms included severe pain, sweating, skin discoloration, sensitivity to touch and light breezes, dizziness, vomiting, syncope, and gastrointestinal issues.

Every procedure was a new trauma that increased my pain and other symptoms.

Learning about RSD

The 43rd provider finally looked at my records in their entirety before coming into the exam room. He was the one to figure out I had RSD and give me some of my first answers. I remember being so excited because I finally had a name for what I was dealing with.                                                     

But once I started to research RSD on the internet, that excitement turned to fear. I took the time to find out who the best providers were and found ways to get to see them. I have now been treated by over 100 providers since 1997.

Having experienced painful injuries many times in my life, I thought all pain was the same. Now, I know there is a difference. I learned that you can have more than one type of pain at the same time (burning, stabbing, cutting, electric, etc.). I feel bad for the people I knew with chronic pain before my experience began. I thought they were constant complainers. I was wrong.

I was humbled as I needed help with ordinary activities of daily living, like dressing, bathing, traveling, cooking, shopping, and walking. What I was going through was traumatic and depressing. The burning pain was never ending.

Living with pain is a big life challenge. It has been hard. Through this challenge I have learned we all have a right to proper care and treatment to ease our pain. Don't stop until you get the help you need.

Remission

As of 2009, I have been in and out of remission. What I found that worked best for me is the use of an oral orthotic (a mouth device that lowers brain stem inflammation), IV infusion therapy, aqua therapy, heat, traction, better posture, improved eating habits, and stretching exercises. There was not a one size fits all cure for me or any of the thousands of patients I have met in my pain journey.

I have come in and out of remission since then. In the beginning I would be so afraid that this time the doctor would not be able to help me. Now I know that if one doctor can’t help there are others that can. Not all providers offer the same knowledge or access to treatments that may be right for me. I have to research for myself to find out what I am comfortable going through.

We all have to learn to be the chief of staff of our medical team. Be empowered patients and live life to the fullest each moment. Don’t feel guilt if you can’t do something right now -- make it a goal to accomplish once you are able.

When you think it can’t get any worse, it can. And when you think is can never get better, it can. Take life moment by moment and know that we all have ups and downs. Never give up and never give in!

My drive to turn pain into power comes from my motivation to find a cure for RSD. No one should have to go through my experience. 

Barby Ingle is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation.

Barby is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found by clicking here and at the Power of Pain Foundation.

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.