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.

CDC Opioid Guidelines Are Not Rules or Laws

By Mark Helfand, DDS, Guest Columnist

I am a 62 year old dentist who had to retire 20 years ago due to Chronic Regional Pain Syndrome (CRPS). It started in my right forearm and has spread to all four extremities. Recently it has spread into my shoulders, fingers, knees and thighs.

I have seen numerous pain doctors over the years (that's another story) and have finally found a compassionate, intelligent doctor. He has the knowledge and conviction to be a physician and to treat me properly.

I feel sorry for all the other patients suffering as I do, who are being treated by people with medical degrees that are too stupid or too scared to treat their patients as they swore to do when they graduated from medical school.

Have they forgotten the Hippocratic Oath to do no harm?

The CDC opioid prescribing guidelines are just that -- guidelines -- NOT rules or laws. As a matter of fact, here is a quote directly from the guidelines:

MARK HELFAND

MARK HELFAND

“The recommendations in the guideline are voluntary, rather than prescriptive standards. They are based on emerging evidence, including observational studies or randomized clinical trials with notable limitations. Clinicians should consider the circumstances and unique needs of each patient when providing care."

The so-called "doctors" (and I use the term loosely) that say they cannot prescribe narcotics anymore or cannot prescribe the same dosage, either cannot read, don't care or aren't knowledgeable enough to know what they are doing.

I have had all the past and current mainstream treatments, except hyperbaric oxygen therapy and intravenous ketamine. I have tried and been prescribed most NSAIDs and narcotics.

I am currently taking fentanyl lozenges every three hours as needed and an experimental cream with ketamine that my pharmacist read about in one of his journals.

He sent the paper to me, I brought it to my doctor, we discussed the pros and cons, and my doctor prescribed it for me.

It is helping, but I am not even close to being pain free. However, I am not "stoned" on drugs. If I was, I couldn't write this letter.

I have some semblance of a life and when the pain gets unbearable, I have the ketamine cream and can take the medication I need without having to beg some non-caring doctor in an emergency room. I have been through that and refuse to go through it again.

I genuinely feel sorry for all the chronic pain patients that haven't been as "lucky" as I am. I am cursed with this horrible, excruciatingly painful condition 24/7, but am blessed by a few angels (my pharmacist, my doctor, my niece, and 3 or 4 lay people) that help me live whatever life I have.

I hope this inspires others in my condition to search for their angels.

Dr. Mark Helfand lives in New York.

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.

Waiting for My Pain Medication to Be Stripped Away

By Sheryl Donnell, Guest Columnist

Up until recently, I thought I was coming through this opioid crisis unscathed. My pain management doctor has been with a top clinic for many years and is highly respected and generally above reproach.

We did not have that dreaded conversation virtually everyone else with chronic pain I know has had -- until September 13th, 2016.

That night, I fell and broke 5 bones in my foot, which was already affected with Chronic Regional Pain Syndrome (CRPS). The pain was so incredibly severe.

I laid on the floor from 2 am to 10 am before I could stay alert enough, and not pass out from shock and pain, to get to a phone to call my husband upstairs for help (he is deaf in one ear). It took 4 paramedics to get me off the floor and into an ambulance.

Once at the hospital, even though I was writhing in agony and still passing out literally from pain, the doctor never examined me or my foot. She didn't care I had been on an ice cold floor for 6 hours. All she heard was "chronic pain patient" and she was done with me.

SHERYL DONNELL

SHERYL DONNELL

I begged her to call the pain experts my doctor worked with so she could get some guidelines for treating me, but she didn't see a reason. I asked if she was familiar with CRPS, and she proudly said no and it didn't matter. She sent me for x-rays. No sooner did I get back in my room from another horrifyingly painful experience did she announce nothing was broken and to go home.

I sat there stunned. I had heard the bones break. I knew there were fractures. I begged the nurses to do something. I had not even been given a single Tylenol. This doctor firmly believed I was a drug seeker and wanted to bounce me.

The nurse started reading my discharge papers, which said, "Come back if you have any of these symptoms." I started crying harder. I said I have every one of those right now! She was practically in tears herself.

Then my husband asked, “What will he do when we get home? We can't even get her into the house!” The nurse told him to call the paramedics again to help get me back inside my home, which we did.

My husband called in 24-hour care workers to help me so I could manage a bit. It was agony going to the bathroom, even with a bedside commode my mother brought.

The following morning, the paramedics came back and helped me into the car. We went downtown for a pain injection to try to stop a progression of my CRPS. While there I insisted on new x-rays, which my pain doctor of 9 years grudgingly agreed to -- mostly to shut me up. He said come back in a week for another shot.

I asked for an increase in my pain medication. My biggest shock that day was his response. He said there was no reason for an increase! What? We went home to 24-hour care and instructions to start weight bearing exercises asap!

A full week later with not a single call, we returned to my pain management doctor for my second injection. He casually mentioned the results of my x-rays, which showed that I had 5 broken bones in my foot. No call for an entire week. I was left to think I was nuts and was trying to bear weight on a severely fractured foot!

I was not offered, nor were my requests for additional pain medication granted. I was told to come in every week for four more weeks (in great agony and great difficulty) for pain injections which did very little. However, I did not have a spread of my CRPS.

I did lose about 8 weeks of my life again. My pain levels were so extreme I did nothing but sit in my recliner and do a lot of crying. And realize how lucky I was to have family support, the ability to pay for 24-hour caregivers, and to be believed I was in the kind of pain I said I was in. My adult daughter moved home for a month to help me and my husband with caregiving duties.

What do other people do?

Even after my 6 weeks of pain injections, when I requested a short term increase in pain medication to help me rehab my still very painful foot once I was cleared by my orthopedist, I was again turned down by my pain management doctor.

It is now 5 months after I broke my foot and I cannot complete my rehabilitation because my pain is still so intense. I know if this had happened 5 years ago, I would not be suffering like this.

Even though my pain has worsened and I need to rehabilitate my injury, the CDC has arbitrarily changed the rules and I must suffer. My doctor's hands are tied.

I lose more and more days spent doing things I enjoy or need to do because the CDC’s “experts” sat in a room and made decisions based on flawed data and street drugs; not real patients who follow the rules of their pain contracts and don't seek out multiple doctors or illegal methods to get medication. I follow all the rules, just like 99.5% of my peers.

We are suffering and living in fear that we will be next to have our medication stripped away from us, through no fault of our own. And then the real terror begins.

Sheryl Donnell lives in Illinois. She suffers from CRPS and fibromyalgia.

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.

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.”

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.

My Life with CRPS

By Chrystal Weaver, Guest Columnist

I have been suffering from Complex Regional Pain Syndrome (CRPS) Type 2 for nearly six years. I first got this disease as a result of a botched back surgery called a kyphoplasty.

The bone cement they used was too thin in consistency, which allowed it to travel to my epidural space and kill off most of the axons in my nerves; which in turn caused my left foot and ankle to be paralyzed with indescribable burning pain, electric shock pain, bone crushing pain, and pins and needles pain.

It’s been nearly six years of living hell.

I was 46 when this happened and I was working as a CPA in Florida. At the time, we had pain management clinics in abundance and doctors were not afraid to prescribe opiates. They worked with you to get your dose to the point where it was effective for your individual needs, without causing side effects like over sedation.

The dose of medication I was on took my pain down from a 9 or 10 to a bearable 3 or 4 level. I was able not only to continue to work, but to attend my son’s baseball games, go to the beach with him, take him on vacations and be an active mom.

Then when Florida got all the bad press due to pill mills, and the DEA and state law enforcement cleared out the bad operators, good doctors also got caught up in the net. This had a profound effect on doctors who were using pain medication in good faith and a “chilling effect” occurred. Pain management doctors left the field in droves. Those who remained were unwilling to maintain me on the regime I was taking and that was working for me.

chrystal weaver

chrystal weaver

CRPS has the nickname “the suicide disease” for a very good reason. It is not curable and there is no effective treatment for the disease. Any medication, narcotic or non narcotic, is prescribed “off label” because there is not one medication approved for CRPS by the FDA. I tried spinal cord stimulation, nerve blocks, Prialt, antidepressants, anti-seizure medication, and acupuncture. I couldn’t bear for my foot or lower leg to be touched, so massage was not an option. I even had high dose ketamine infusion treatment at the University of Miami. All to no avail.

Because of the aggressive law enforcement tactics that shut down the bad operators, the pendulum has swung the other way to the extreme. There were huge unintended consequences in Florida’s efforts to shut down the pill mills. I was taken down to about 30% of the old dosage I was on, which allowed me to work and be a great mom. The new dosage never gets my pain below a level 6.

I ended up losing my job due to poor performance and had to apply for Social Security disability after a 25 year career in the accounting field. I stopped going to baseball games, that my son wants desperately me to see, but I just cannot go. I am now home-bound and cannot perform the activities of daily living. If I did not have a 12 year old son, the pain has been so unbearable I would have taken my life by now.

I do not exaggerate when I say this pain is like being a prisoner of war. It can take the most mentally sound, happy and stable person, and make that person wish that they would not wake up. This should not be happening in the most advanced country in the world.

The saddest part of all is that the government actions did not even solve the problem of people abusing drugs and overdosing. The people that were abusing narcotics have switched to the much easier to obtain and much cheaper heroin. The population that has been greatly harmed by what the government has done is the legitimate chronic pain patients in Florida and indeed all over the United States.

The heavy handed tactics used by our government gained nothing. The people who want to abuse drugs have turned to a much more dangerous substitute, where they have no clue regarding the potency of what they are putting in their bodies, nor do they have any idea of the contaminants they are ingesting. We have traded a decrease in prescription opiate abuse for increased heroin abuse, while leaving legitimate chronic pain patients severely undertreated and in many cases untreated for their pain.

Every person is unique. Cookie cutter recommended dosages do not work for human beings. There will always be outliers on both sides of the bell curve. Some people do well with small doses of opiates and some people require higher doses to bring their pain down to a manageable level.

I understand that the CDC’s prescribing guidelines are meant for primary care physicians. However, it is highly likely that pain management doctors will follow the guidelines as well. Even if a pain specialist were to prescribe doses above the guidelines for patients with diseases that are debilitating painful, it would be impossible to find a pharmacy willing to fill the prescription. We already are having a very real problem being able to fill prescriptions now.

I cannot imagine how much more difficulty chronic pain patients will have accessing their medication should these guidelines go into effect. I cannot even count how many times I have been forced into withdrawal after spending over $150 on taxi fare going from pharmacy to pharmacy, only to be told that they do not have the medication in stock or that they no longer carry that medication. I am a single mother. I have no family living that can help me take care of my son when I lay on the couch in level 10 pain from CRPS and the pain of withdrawal. No one should be made to suffer like this. No one.

I don’t enjoy taking narcotics. I purposely had my baby at home with midwives and no pain medication or epidural because I did not want unnecessary medical interference with what is a natural occurrence. I can take pain. It was my first and only child.

I explored the possibility of getting my left leg amputated below the knee if that would free me from the pain of this disease. But it does not take away the pain and CRPS does spread. It is now in my right foot and lower leg. 

So there is nothing more that I can do medically to treat the pain effectively, except for taking opiates at the dose and combination that was effective for me. But I have no way of obtaining that same dose and combination of short and long acting opiate medications that allowed me to live at a level 3 or 4 on the pain scale. My son needs his mother and for the last 5 years I am still breathing, but I certainly am not living.

I also want to emphasize that there are numerous diseases and conditions that are not malignant, but are just as painful if not more painful than cancer pain. CRPS is listed as a rare condition by the National Institutes of Health, but there are many more orphan and rare diseases whose primary feature is severe debilitating pain with no cure and no real effective treatment.

Alarmists cite an increase in opiate prescriptions without putting it in the proper context. Most baby boomers are in their fifties or sixties now and people are living longer due to medical advances. Sun Belt states like Florida have a higher retirement population than northern states do. Pain was undertreated in the early 1990s before pain was classified as the fifth vital sign.

Alarmists also point to the number of deaths from opiates being over 16,000 annually. But they have no way of knowing if that person intended to take their life or if the death was accidental. 16,000 deaths does not an epidemic make. I shudder to think of the real epidemic that will occur if these arbitrary guidelines are adopted by the CDC. Wounded veteran suicides will dramatically increase, along with suicides from 100 million chronic pain patients in this country. Some will begin to abuse alcohol to try to get relief. I’m certain that some will be willing to break the law and turn to the streets for heroin if they happen to know where they can obtain it.

Pain should be managed as we manage diabetes in this country. You are prescribed the number of units you need to get your blood sugar as close to 100 as possible without causing your blood sugar to drop too low. Pain has been subjective until the advent of the functional MRI. Pain doctors can verify that you are in pain using fMRI.

We would never lock up 100 people in prison if one of them were guilty of murder just to punish the one murderer. But this is precisely what has happened in the treatment of chronic debilitating intractable and incurable chronic pain. In order to protect a small portion of the population from themselves, our government has cast 99 innocent people in prison in order to punish the one murderer.

Drug addicts will always be able to obtain their drug of choice, while chronic pain patients languish in their homes unable to participate in life; waiting and wanting to never wake up because the pain is going to be the same as the day before, just like the movie Groundhog Day.

I was very active and enjoying my life, my career and my son until one medical procedure changed my life forever. Your life can change in a blink of an eye. A loved ones’ life can change in the blink of an eye. Every human being deserves to have their pain managed appropriately. Anything else amounts to torture.

Chrystal Weaver has submitted these comments to the CDC. The public comment period on the CDC's opioid prescribing guideline continues until January 13th.

You can make a comment by clicking hereThe draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

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.

My Life and the War on Pain Patients

By Suzanne Stewart, Guest Columnist

One of the arguments against gun control is that the "bad guys" will always have access and the “good guys” will die because their weapons are taken away.

That’s what’s happening now to chronic pain patients! We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not "pain free," but with less pain and more living.

Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS.  They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.  

On the other side of the spectrum are those who don't follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take anti-depressants away from the hopeless, or insulin from a diabetic?  

suzanne stewart

suzanne stewart

The CDC’s new opioid prescribing guidelines could make things a lot worse next year. Many physicians are already  refusing to give medicine for pain when it is truly needed. But those who who are true addicts always find a way to get what they need, while law abiding citizens, suffering daily, have no means other than self advocating. We need to rally and try to do something about this travesty.

Remember, we are not addicts! We are patients with chronic pain, who’s bodies are dependent on medications that help us live. Without proper pain control, there's nothing left.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to "do no harm" will do surgery,  instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

I say pick on the real criminals, not the chronic pain sufferers. I went through an awful experience last year, when my doctor of 12 years unexpectedly left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank!  I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me.

I've read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they've experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

These lay people and agencies are trying to tell us that  exercise and healthy eating habits, along with physical therapy and "behavioral therapy," are alternatives to pain medication. They say that the goal is to stop the overdoses and prescription drug abuse.

The “addiction specialists” scream "HYPERALGESIA" to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted!  We are all individuals whose bodies may become physically dependent,  but that's very different from addiction. If it is working, then how can it be hyperalgesia?

In all honesty, if the doctor  is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief?  The innocents should not suffer for the crimes of a few.

Many patient advocacy groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams to make up these new rules and guidelines. They didn't listen to the voices of the doctors and patients who live in the pain world. Many of the people who put these new rules together have a monetary gain.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who've been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not mangaged well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard. We need to form advocacy groups that will work together for the common good. Let’s stick together and not allow ourselves to be treated so inhumanely.

Suzanne Stewart lives in Michigan. She suffers from CRPS and several other chronic pain conditions caused by a car accident.

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: 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.