Miss Understood: A Mother’s Greatest Fear

By Arlene Grau, Columnist

As a mother your main goals are to raise your children to lead happy lives, to always love them, and to keep them safe. I want to see my children excel and get a lot further in life than anything I've ever dreamed of.

Although I have many hopes and aspirations for my two daughters, my worst fear is always lingering in the back of my head.

What if I cursed one of my daughters with a genetic predisposition for an autoimmune disease? What if they develop arthritis or lupus? I could never forgive myself if I knew they were meant to endure the suffering I've lived through.

I would give anything if they would never have to worry about seeing a medical specialist, or needing infusions, blood draws and painkillers just to get by. They already see a pain sufferer’s life through a child’s point of view and that alone is very difficult to handle for a 5 and 9-year old. But burdening them with this lifestyle would be cruel in and of itself.

I'd like to think that I could handle any amount of pain you throw at me. I'll shed some tears and break down a bit, but I think of myself as a genuinely strong individual. However, if you involve my children, then all bets are off and I become vulnerable.

When my oldest daughter was born I suffered from preeclampsia (high blood pressure) and she was born prematurely. She weighed just 4.6 lbs. at birth and was in the neonatal intensive care unit for two weeks.

The day after I was discharged, I was back at her bedside from the time visiting hours began until it was time to go home. She ended up needing surgery at 8 weeks and it was the worst experience I've ever been through.

I can remember how much I wanted both my girls to come home from the hospital with me so I can just love and protect them. My desire for children was always about how much I wanted a family, but I never stopped to think about the possibility of passing down an autoimmune  disease. Now anytime my kids tell me their back or hands hurt, I subconsciously think that it might be arthritis.

I think I may always feel that way. Not only because I'm blaming myself for any pain they may be feeling, but because I know that these diseases do not discriminate against any age group.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

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.

A Pained Life: Pennsylvania’s Opioid Law Ignores Us

By Carol Levy, Columnist

Recently I received an email update from my state senator. He wanted to let me know about  efforts in the Pennsylvania legislature to address the "opiate crisis.”

I have written before that I believe some of what has been proposed throughout the country makes sense, a prescription monitoring database, for instance. Much of what is being considered in Pennsylvania also makes sense to me:

• Labels on opioid prescription bottles warning of their addictive nature
• Written consent from parents in order for their children to receive prescription opioids
• A safe opioid prescribing curriculum in Pennsylvania’s medical schools to better educate future doctors about proper opioid prescribing practices
• Insurance plans to provide access and share the cost of abuse-deterrent opioids
• Mandatory reporting of all heroin and opioid overdoses where naloxone was administered
• Implementation of opioid prescribing guidelines developed by a state task force
• Healthcare providers to discuss the risks of opioid addiction and overdose with patients and to receive written consent from a patient before prescribing them

But there are two provisions of the law I find very concerning, one being a requirement that coroners and medical examiners report the death of any person resulting from a drug overdose.

One of the issues surrounding the reporting of deaths arising from opioids is that other medical conditions, such as the use of alcohol or illegal drugs, are often ignored and the death is counted as an opioid overdose.

That is not only poor research, but gives a false picture of what is the effectual cause of the death. Ignoring those other factors means ignoring other issues that the law needs to be addressing.

The second issue I have with the law is alarming: limiting the prescription of opioids to seven days. This ignores chronic pain sufferers and the long-term need for opioid medication, which is often our only or last available treatment.

The change we saw, in many states, was requiring a visit to the doctor for a new prescription every 6 months to needing one every 3 months. That was bad enough.  I recall needing to go only once a year, but that was in the 1970's and 80's.

If you have trouble moving, tolerating the weather or other issues, being forced to go see the doctor every three months is an issue. In addition, co-pays rise, insurance companies pay more for extra visits and may raise your rates as a result, and the cost to the state and federal government through increased Medicaid/Medicare billing soars.

I decided to research this. I found that New York State has imposed a 7-day limit on prescriptions, but the law contains exceptions for those with chronic pain or who are receiving hospice or palliative care for life threatening illnesses. Unfortunately, Pennsylvania legislators have decided to ignore those in chronic pain. The bill includes exceptions only for hospice and patients receiving palliative care.

The government has acted as doctor in many other instances; such as women's health care, declaring some drugs illegal, and allowing certain medications and procedures while denying others. I understand that. There needs to be limitations and oversight.

But this is not oversight or limitation.  This is a frenzied and illogical response to an “epidemic” that is not caused or perpetuated by those of us with chronic pain, but is nevertheless being taken out on us.

Politicians who point at us and claim they are handling the crisis are ignoring the real culprits, which is those who abuse drugs illegally.

The question has to be asked. 

How in the world does this law address the opioid epidemic, as opposed to merely blaming and punishing those with chronic pain?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

Freedom: A Pain Patient’s Lost and Found

By Pat Akerberg, Columnist

Chronic pain takes away many things: our health, wealth, mobility, relationships and careers, to name a few. It’s not a stretch to consider our personal freedom as another major loss. 

Freedom is defined (according to Google) as the power to act, speak, or think as one wants without hindrance or restraint. And unrelenting pain is definitely a hindrance or restraint! 

Despite that harsh reality, there’s an implication that we still have some freedom of choice in how we react. But on those really bad days when it’s all a pain patient can do to get out of bed, the notions of freedom, choice, or power seem wholly non-applicable to us. 

Compared to being autonomous and independent, the setbacks or functional losses we experience threaten any determination or self rule we have left.  You would think that more than ever we’d err on the side of self care and triage. 

Instead, we can be unduly hard on ourselves.  Why?  We still desire to be productive in some way yet can’t be, causing guilt, frustration and even doubts about our purpose.

Even the NFL knows enough to sideline their injured players to PUP (physically unable to perform) status without shame or recrimination until they can function better.

To be kinder to ourselves, there’s an important freedom we can exercise.  We hold the power to choose how we look at freedom altogether. A more lenient twist would be to view it through the lens of the medically compromised.

That twist of perception provides us with 2 types of modified freedom.  One of them involves those things we are now “free from” and can do less of.  The other involves those that we are now “free to” do more of.   

Here are a few freedoms from certain things I have come to appreciate in my particular form of captivity with trigeminal neuralgia:

Type 1: Freedom From

• Attending obligatory, unappealing outings
• Taking all phone calls (talking is a huge pain trigger)
• Trying everything suggested as my cure-in-waiting
• Superficial small talk
• Grocery shopping, laundry, heavy cleaning or distance driving
• Strenuous physical exercise
• People who choose to judge my misfortune as an inferiority and their good fortune as superiority
• Unfulfilling, needy relationships
• Noisy, crowded places and boisterous people
• Educating people about my rare neurological condition, pain, etc.
• Being the initiator, mediator or helper at large

Here are some of my freedoms to. They’re permissions that I grant to myself:

Type 2: Freedom to

• Say no to outings, places, and activities that exact a painful price physically
• Avoid invasive treatments and lab rat experiments
• Express my views about the injustices surrounding inadequate pain care
• Avoid anything that demands my energy after 4 pm
• Not judge myself because mindfulness meditation, exercise, and other touted pain management strategies fell short for me
• Ask for what I need and want when help is offered
• Receive gratefully without guilt or the pressure to reciprocate if I can’t
• Cancel appointments/plans if I am unable to keep them
• Stay in my pajamas if I’m unable to do otherwise
• Practice comforting self-care: baths, massage, good books, TV binging, adult coloring books, sending note cards, and an occasional indulgent dessert
• Make an effort to look my best occasionally, even if it will work against me

It’s helpful to add to and review my list during my worst times to remind myself what freedoms I’m not missing or can give myself. 

Hopefully you’ll consider your particular Type 1 and Type 2 freedoms too and share some with us.  When we do that with each other, it expands our viewpoints and learning. 

After all, we’re each other’s “people,” the group we belong to now. And it takes our own to honestly understand the kind of work-a-rounds that we’re forced to come up with and the life quality compromises we endure.  We know how we can isolate or shield our loved ones when we’re plagued by fears, misgivings or unsettling worries.

I am telling both a lost and a found story about my modified version of freedom now.  It acknowledges that the freedoms I’ve lost have also given way to some new found gains. It’s not meant to suggest that any of this can reduce our pain or restore our undeniable losses, but at least it helps us see the glass isn’t rendered totally empty.

Sometimes it can take a revolution of sorts to hold onto to our freedom or mitigate our losses.  Mine started with giving myself permission to revolt against standardized one-size (that don’t fit all) ways of looking at important things like freedom. 

We can choose to replace any ill fitting lens with one that accounts for the unique and complex anomalies that happen to people just like us.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

Miss Understood: How I Won My Disability Case

By Arlene Grau, Columnist

Early March of this year my second hearing was set with Social Security regarding my disability claim. I had previously been denied and we appealed.

The judge wanted one of their rheumatologists to come in and read my blood tests, doctors’ notes and other medical records, because he said he couldn't decipher them.

Two weeks before our hearing date we got word that the specialist they selected was actually a kidney doctor.

My lawyer wrote the judge informing him that we wanted someone else because we felt that the doctor wasn't qualified for my case. We never heard back from the judge, but the doctor excused herself.

The day of the hearing the judge was as harsh as ever and upset because no one in his office told him about the doctor. He wanted to reschedule my hearing until they got another specialist.

But my lawyer wasn't ready to give up and I was so frustrated at that point that I begged him to let us say our peace. Reluctantly he did.

I suffer from rheumatoid arthritis, lupus and other autoimmune diseases. We were able to prove that I had missed numerous days from work due to hospitalization, surgeries or illness based on time sheets and hospital records. I also have numerous doctors’ appointments every month and had the medical records to prove it. Basically everything the judge had a question for, we had supporting documentation.

I had walked in thinking the judge was going to deny me again, because he had stated that rheumatoid arthritis and lupus aren't disabling diseases. I had plenty to tell him about that, but he just brushed off everything we had to say.

The second time around, he was very different.

I honestly believe that prayer works. That and being prepared. Having all your bases covered and making sure you have all your paperwork squared away. I got a print up of all my doctors’ visits and built a graph of them by month and year. Then I did the same thing for my hospitalizations. I also got a print up of my work time sheets and graphed the days I missed by month and year. For some reason the judge liked the graphs more than the print ups themselves.

In the end, the judge awarded me close to three years of disability that I was owed in retro pay. I’m also now receiving Medicare. Although it took 3 years, I'm glad I didn't give up and that I had so much positive support from friends and family. My family and I are finally able to put this behind us.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

Why Opioid Addiction Treatment Often Fails

By Percy Menzies, Guest Columnist

The two most contagious factors linked to addiction are accessibility of the drug and price. If there is easy access to the drug (and this includes alcohol), the number of people exposed is going to increase and a higher number will become addicted.

Every single epidemic has followed this principle. Let’s look at the present problem in the U.S. with the abuse and addiction to prescription opioids.

For decades access to prescription opioids was restricted to patients in acute pain and the only exception was terminal cancer pain. We did not have a major health crisis with opioids in the 1980’s and early 1990’s. 

Then in the mid 1990’s, articles and papers started appearing in the media and medical journals about the under-treatment of chronic pain. Respected clinicians and researchers made a strong case for using opioids to treat chronic pain. They insisted that opioid medication had little or no potential for abuse.  Clinicians were expected to treat chronic pain as the “fifth vital sign” and use opioids as a first-line treatment. The access door was thrown wide open and, for most patients, insurance covered the prescription cost.

When the alarm bells sounded years later and physicians cut back on prescribing, some patients who use opioids medically and many others who use them to get "high" found an alternative: heroin.  This illegal drug was relatively easy to obtain and the price was substantially lower than prescription opioids. 

Now heroin is becoming the gateway drug.  The potency of street heroin is increasing and there are many reports of heroin being laced with the very potent opioid fentanyl to increase the high. The DEA also tells us that hundreds of thousands of counterfeit pain medications made with illicit fentanyl are on the black market.

How do we fight this? Look at how we've reduced access to alcohol and cigarettes.

Access to alcohol is restricted by age, taxes on alcoholic beverages, licensing restrictions, campaigns against drunk driving and other measures. Policies to reduce smoking have also had dramatic results. The smoking rate in the U.S. has dropped from 50% to about 19% in the last twenty years. How was this achieved? By tightening access: no cigarette vending machines, no sale of single cigarettes, limits on places where people can smoke, and substantially higher taxes on tobacco products.

Look at addiction to cocaine. Cocaine was once glamorized as a drug that was only psychologically addicting. The abuse of cocaine and later crack cocaine skyrocketed in the 1980’s. In response, very harsh and discriminatory criminal measures were instituted, but with little effect. Some groups even advocated legalization.

The government promised effective treatments for cocaine addiction, including vaccines, but to date we have neither the treatments or vaccines. Yet addiction to cocaine is way down. Why? Because of reduced access. The countries growing coca came under increased international pressure and destroyed coca crops by spraying them with herbicides.  What would have happened if cocaine was legalized?

Legalization of a drug greatly increases accessibility and increases the number of people exposed to it.  The increased legalization of marijuana has made cannabis accessible to millions of people who never would have considered using it before. There are projections of marijuana becoming a $70 billion plus product in the next 5 to 10 years!

Accessibility undermines recovery.  The conventional treatment approach is to send patients away to residential programs for weeks and months.  The thinking is that behavioral and life skills learned during “rehab” will protect patients from relapsing when they return home. Does this really happen? Can patients successfully navigate the plethora of cues and triggers greeting them when they return home?  Will they be able to resist or ignore the ringing of the bell of Pavlovian conditioning?

It is not likely to work because of a well-researched phenomenon called Conditioned Abstinence or the Deprivation Effect. When a patient is sent away and deprived of access to a drug or alcohol, the addiction goes into an internal “incubator” where it is nourished by anxiety, exchange of war stories with other patients, and ruminating about drug use.

When the patient returns home to the familiar environment of past drug use, the fortified addiction powerfully reemerges from the incubator, leading the patient into relapse.

Repeated attempts at incarceration and long-term residential treatment have failed to curb high relapse rates, especially for opioid addiction.  This led to a wrong and highly controversial conclusion that addiction is a brain disease and the only approach is palliative treatment with other opioids, often for life.

The common and inappropriate analogy is to diabetes. Rather than looking at access as the contributing factor to relapse, patients are told they need opioids like methadone and buprenorphine to ease their withdrawal pains, much like diabetic patient needs insulin.  A clever but unproven theory called the “metabolic syndrome” was put forward to explain this. Patients are left feeling hopeless, helpless and resigned to their fate.

We need look no further than the U.S. soldiers that got addicted to heroin in Vietnam to debunk this theory. The addiction of some soldiers was spawned by cheap and easy access to heroin in villages and hamlets. Our country was in a state of panic about these soldiers continuing their heroin use when they returned home. There was even fear that their weapons training would be used to obtain the drug.

To everyone’s surprise, less than five percent of the soldiers continued using heroin when they returned home. Did these soldiers not suffer from the metabolic syndrome?  They did not continue their heroin habit because they had no easy access to heroin when they came back. If they had been sent back to Vietnam, many would have relapsed because they would have easy access again to heroin.

Compare this to the soldiers returning from Iraq and Afghanistan. Many have been able to continue the addiction because they have easy access to opioids and heroin in the U.S.

Palliation or substitution with methadone or buprenorphine has done little to blunt the heroin epidemic. We have not found a way to reduce access and indeed it is growing. A record quantity of potent heroin is flowing into this country from Mexico. The other two major producer countries, Afghanistan and Burma, are politically unstable and their poppy acreage has grown at alarming rates. It is only a matter of time before the heroin from these countries will start trickling in.

There are no easy answers. Unlike cocaine, products made from the opium poppy are essential for the treatment of pain. There is little we can do to reduce access to heroin. We need to seriously relook at the present treatment infrastructure. Addiction treatment often is episodic, non-medical, punitive, expensive and ineffective. Few patients are sent home on medications like naltrexone to protect them from relapsing in the first days and weeks after rehab. Medications like naltrexone and Vivitrol that give patient a fighting chance of long-term recovery are rarely used.  

We are woefully unprepared to deal with the present situation and the bigger problems to come. One thing is certain: legalization of heroin is not the answer. Decriminalization and standardized treatment with non-opioid drugs can be.

Percy Menzies is the president of the Assisted Recovery Centers of America, a treatment center based in St Louis, Missouri. He is a passionate advocate of evidence-based medical treatment for addictive disorders.

He can be reached at: percymenzies@arcamidwest.com

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 Wife Had Ehlers-Danlos and Didn’t Know It

By John Ferman, Guest Columnist

We were married for 41 years.  You’d think after all of that time you would know everything there was to know about a person.

I knew Carol as a loving wife who would do anything she could for the kids and the family. She was a social worker and very concerned about the comfort of others. She didn’t complain and didn’t want others to worry about her.

Carol’s symptoms started shortly after we were married in 1967.  Carol was very energetic, had just graduated with a master’s degree in guidance and counseling, and was anxious to start her new career. She also was somewhat of a “perfectionist” who wanted to keep the house clean and organized, but started to develop some pains as a result.

I remember attending Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented on how “flexible” Carol seemed to be during the exercises. Our first daughter Deborah was 4 weeks premature and the second daughter Deanna was 7 weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.

CAROL FERMAN

Carol’s joint pain got more severe in the 1980’s. She was the first director of a new crisis hotline in the Cleveland, Ohio area and was working unusually long hours.  With all of the mental and physical stresses she was going to a chiropractor monthly and then weekly.  She was also getting massages on a regular basis.

Initially, Carol’s neck, back and shoulders were the major issues. The doctors did not seem to understand her pain and could only recommend ointments and pain medication.  It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe fibromyalgia, but they were not sure. 

I was taking over the household tasks of cleaning, doing the dishes and the laundry.  Some family members commented that they thought Carol “looked perfectly okay” but was weak, lazy and taking advantage of my help. I knew there was a problem with her pain but I did not know what it was or what else to do to help.  

In addition, Carol had severe allergies, IBS symptoms and an extremely sensitive stomach, so she avoided certain foods, spices, and medications. Her allergies often limited where we went for social activities and even restricted purchasing certain items if they had chemical smells, dust, or cigarette odors.

She had flat feet and was prescribed orthotics. Her feet always hurt and finding comfortable shoes was challenging.  She had very sensitive hearing and was a very light sleeper. The slightest noise would wake her.  Pain and disturbed sleep meant she always woke up exhausted!

Carol would describe affected parts of her body as shifted, twisted, crooked, and her favorite word "discombobulated" (meaning everything was zig-zag and out-of-whack). Her pain was achy and throbbing, and she also had episodes of radiating pain, stabbing, pinched nerves and numbness. She would say things like, "I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body."

She had a lot of extra pain if she tried to carry something that was awkward or too heavy. My daughters could carry heavier items than my wife, and the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.

As a result of her non-restorative sleep and pain, Carol was often in bed until the kids got off the bus from school. The girls would run upstairs to the bedroom, eager to spend some quality time with mom, as she was getting out of bed in the middle of the day. The girls remember it as a special time. Moments like these with her girls gave her some comfort and support, but the girls were sometimes embarrassed. They could not tell anyone that their mother was in bed all day.

Carol’s muscles were always tight, and she often described her pain as if "one part of her body was pulling at another.” The only exercise she could tolerate was very slow walking. She loved walking at sunset in the park.

She had pain driving a car and searched extensively to find the most comfortable car so she could remain independent. It was very stressful for her to be a passenger in a car. She would try to brace herself for the starts, stops, bumps, and turns.  If I was driving, she would request alternate routes for straighter roads. We would sometimes go 3 or 4 miles out of our way to find a smooth straight road for her to travel on.

We didn’t know at the time that these were telltale symptoms of Ehlers-Danlos Syndrome (EDS).

Carol was very discouraged that the doctors did not believe her and she stopped telling them about her pain because the tests came back “normal” and there was no treatment or even a reason for her pain. They just told her she was overly-sensitive, exaggerating, or “it’s all in your head.” 

It really bothered her that her medical records said all those bad things about her "mental state.”  She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.

She could only sustain working for a few more years part time, and then it got to be too much for her physically.

We continued to play out that very difficult lifestyle until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took their toll on her and she had a major struggle with clinical depression.  She was on so many medications that they masked many of the symptoms.

Carol passed away in 2008 of breast cancer as a result of some prescribed medication, the same year my daughter Deanna was diagnosed with EDS.  In her early 20’s, Deanna developed many of the same symptoms and pain as her mom. They often talked about the similarities and offered each other comfort and understanding.

EDS is a genetic defect in collagen protein -- the “glue” that supports and holds the body together. It causes chronic pain, joint hyper-mobility (double-jointedness and fragile joints) and affects multiple other body systems. There is no fix -- no medicine or surgery -- that resolves this condition. However, it is important that EDS be diagnosed and managed, so that symptoms can be controlled and appropriate preventive measures can be taken.

If only someone had told Carol about EDS. It would have saved both mother and daughter much suffering, loneliness and judgment.  I don't have room in this article for all the details about how undiagnosed EDS harmed my wife and daughter's lives.  Just believe me when I say emphatically that if they had known about EDS, their lives would have been dramatically different!

DEANNA HAMM

Ehlers-Danlos Syndrome is not rare. It is rarely diagnosed.  It is estimated that EDS affects more than 1 in 5,000 people worldwide, but only 5% are correctly diagnosed with one of the 6 major forms of EDS.  In the United States alone, 650,000 sufferers go undiagnosed every year due to physician mistakes or lack of knowledge about the condition.

Many afflicted with EDS - and the people who care for them – don’t know where to turn for information, advice and help with issues such as treatments, therapies, practitioners and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing. They suffer for many years and die – never knowing why they had the pain.

Tell someone about EDS today and every day. I do! You could improve a life or even save one!

John Ferman and his daughter Deanna Hamm are co–founders of EDS Awareness, a non-profit online resource for the Ehlers Danlos Syndrome community. John is a full time volunteer managing the program. Deanna is a pre-med graduate with Hypermobile EDS. She leads the Cleveland Ohio EDS Support Group.

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.

Pain Companion: How to Live Better With Nerve Pain

By Sarah Anne Shockley, Columnist

I’ve lived with severe nerve pain for the past eight years and have, through trial and error, found simple ways to help reduce and quiet it down on a daily basis. 

Some of these methods may be obvious if you already live with nerve pain. I include them all here because I know that it certainly would have served me well to have had this information early on, instead of having to work it all out for myself.

The first thing I learned was to think about my situation differently. For a long time, I thought about my nerve pain as its own thing, separate from me. It was something I didn’t want to have around, as if it was its own entity. It was me against the pain.

I’ve come to understand that my nerve pain is an aspect of my body, and possibly myself, that is so raw, so irritated, so sensitive and so volatile that it does not serve to try to make it get better.

My nerves in pain don’t want to be poked or prodded or touched or manipulated into wellness. Even alternative treatments seem like too much to handle. I am a strong believer in acupuncture, but the idea of needles when my nerves are already screaming is not something I want to contemplate. Sometimes even light massage is too much.

When I began to accept the pain as part of my whole life experience, not something that could be extracted or aimed at and annihilated, I began to see that my approach to easing it was going to have to be much more holistic.

I found the best way to do that was to work with creating more well-being in the body around the nerve pain. 

Often, I found that trying to deal directly with my nerve pain actually made it worse, but this indirect approach, over time, was much more effective in helping to ease it.

Here are some methods to help the body feel the best it can around the pain:

Relax and de-stress as much as possible. Limit interaction with things that would normally “get on your nerves,” such as stressful situations, toxic people, crowded stores, and rush hour traffic.

Stay on an anti-inflammatory diet and try to avoid inflammatory situations that activate fright, tension, or adrenaline rushes, such as argumentative people or being argumentative yourself.

Get more rest and sleep by staying calm. Make doing less a priority. You might use herbal teas, such as chamomile, to help with sleep or read yourself to sleep while listen to relaxing music. Avoid staying up late on the internet.

Choose activities that not only suit your physical limitations, but also soothe the mind and soul, such as meditation, listening to beautiful music, singing, walking in nature, talking with loved ones, and reading inspiring words.

Spend time every day in nature walking and focusing your attention on the soothing feeling of the air on the skin, the breeze, the sunlight, and the sound of birds. Bare feet on the ground or in sand can be exquisitely soothing to the nerves.

Take long soaks in bath salts or products using aromatherapy. Let your body relax into the warmth and the delicious smells.

Keep moving in any way you can that doesn’t exacerbate the pain. It’s important to keep the blood and oxygen flowing to keep your muscles from stiffening up and adding to the pain. Stagnant blood and stagnant energy do not help you heal.

Aside from helping your body feel better physically, I also recommend taking care of yourself emotionally.  Here are some pointers:

Find the little pleasures and things you enjoy and appreciate. Don’t wait for the pain to leave before you enjoy yourself and your life. Find the places that don’t hurt and revel in them. If there aren’t any, look beyond your body and find the things you can take pleasure in around you, including nature, the creative arts, the community, and your family.

Don’t try to turn your life off to avoid feeling pain. Don’t close down your ability to laugh or have fun. This is still your life. It is the only one you have. Make the most of it, even if you have to include pain in the equation. Just let it be there. Even invite it along.

Be kinder to yourself. Create a self-love routine around taking care of your body and your emotions. Wash yourself with soothing hands. Buy things that have soothing smells, not sharp chemical odors. Indulge your need for more softness and kindness in your life. Wear clothes that feel soft against your skin. Talk to yourself using soothing words. Give yourself a break more often.

Finally, consider making friends with your painful nerves. Talk to them kindly. Tell them it’s safe to calm down.  Tell them that you’re paying attention to your body and you’re doing the best you can to heal.

Let them know that you hear them, you honor them and you respect what they have to say to you through the pain. Understand that they are in alarm mode right now, but you have heard them, and it’s okay to tone it down a little. It’s okay to let their message be carried to you a little more softly, a little more quietly.

I think one of the tricks to working with nerve pain is to understand that we have one central nervous system that lives throughout the body. Even if we are feeling nerve pain mostly in the face, neck or hands, it relates to and affects the entire nervous system and therefore the entire body.

I believe we can positively affect nerve pain in any part of the body by treating the whole body with calming, soothing, relaxing, and restoring activities and approaches. I’ve found that they work.  And anything we can do to bring the pain down a notch or two is well worth it.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

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.

Disability Resources You May Not Know About

By Barby Ingle, Columnist

Over the past 20 years I have had many ups and downs with my health and my finances. After losing my job and company, I had to rely on food stamps, church food banks, and county mental health support groups.

While speaking with others in the support group, I found out that there are a wide variety of disability benefits that come from federal, state and private sources, such as worker’s compensation for people injured on the job and military benefits for soldiers and veterans.

We need to invest time to make sure that the resources available to us are being utilized. There are Social Security programs, Medicare, Medicaid, state assistance programs, utility company programs, handicapped bus passes and car licenses, to name some of them.

Too many of my friends either didn’t know about them or felt embarrassed to ask for assistance.

Knowing what each one is and how it can be used is important. For instance, Supplemental Security Income (SSI) comes from general tax revenues, not social security tax funds.

SSI is designed to help aged, blind, and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter. Typically, you quality if you have a medical condition that has prevented you from working or is expected to prevent you from working for at least 12 months.

Social Security Disability (SSD) comes from federal social security taxes that people pay into in case of long-term disability. You must have worked and paid Social Security taxes long enough to qualify. Depending on the state you live in, you can complete the application through the mail, over the phone, or even online.

If you receive SSD, you can quality for Medicare 24 months after becoming eligible for disability.  In my case, I became eligible for Medicare almost immediately, as it was a few years into my disability and they retroactively changed my disability date.

For others who apply sooner, you typically will receive your information several months before you are eligible to start Medicare coverage. I highly suggest that you fill out your papers immediately and return them. There are different requirements in each state for financial and disability levels. Medicaid services can included preventive care, immunization, screening, treatment, doctor visits, hospital visits, and vision and dental care.

Many states offer specific programs that can help you through daily living. It is important for chronic care patients to maintain independence to sustain their full range of experiences, rights and desires. Programs that provide training and support appropriate to the needs of each disabled person can be found in every state.

People disabled by pain may not realize at first that they are eligible for many of these services. They don’t think that their condition is debilitating enough to require handicapped parking, and underestimate the benefit of closer parking or how much energy it saves.

We should always be mindful of our energy penny bank. Handicapped permits and passes allow a disabled person to run errands, shop, go to doctor appointments, travel, and participate in other activities without wearing themselves out within the first few minutes of arriving at a destination.

If you have a disabling pain condition which may allow you to have a handicapped parking permit, talk to your doctor about it. Do not wait for your doctor to bring it up. Doctors are very busy and it is unlikely that this is foremost on their minds. Your doctor should not hesitate to sign the paperwork for you to get a handicapped parking placard if you are eligible under your state regulations.

Also be sure to get a bus pass for disabled riders. They are available in most states and typically give you free or discounted rides.

I used to take the bus often. If you find yourself in a city needing to take the bus, be sure to learn the schedule and let the bus driver know if you have any disabilities or need assistance. Ask him to remind you to get off the bus at your final destination or transfer location. I would forget my stop far too often. You learn to speak up when this happens and you miss a doctor’s appointment.

Patient transportation services are also available for some Medicaid and Worker’s Compensation patients. These companies ensure that patients are transported with the right level of medical expertise in the most appropriate vehicle, such as specialty vans that accommodate wheelchairs. Other modes of transport include ambulatory, wheelchair, stretcher, and air ambulance.

The insurance company is directly billed with a detailed invoice as to miles driven, time of transport, and drop off locations. Services are typically available every day of the year. You can set up this service with your claims adjuster or care manager. I know many who already use this service and love it. One of the iPain board members actually owns a company in Kansas and Missouri that operates this service. If you quality, ask for the help.  

No matter what resource you need, don’t hesitate to ask for them. Get the help you need to become the most active person you can be. Not treating pain is unethical and immoral. When you qualify for assistance, it means you have earned it and it is there to help you help yourself.

For a list of other free or low cost services available to you, checkout the Patient Resources section of Pain News Network. We all pray it is short term assistance, but if long term or life assistance is needed, be the best you can be and take advantage of the help that is available to you.

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 (iPain). She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found by clicking here.

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.

Hoping to Survive the Weekend

By Sarah Daniels, Guest Columnist

How are chronic illness sufferers with life threatening problems supposed to be safe when the people working for the insurance companies, making life and death decisions about their medical care, have no medical training or background whatsoever?

Why is it up to some high school graduate whether or not I can get oxycodone? The same medication that a pain management specialist, primary care provider, neurologist, Ehlers-Danlos syndrome specialist, and 10 other doctors all agree I need to be on.

The is the same medication I was finally given permission to use after YEARS of suffering terrible pain every second of every day, being forced into physical therapy five different times, actually worsening my condition (it can be extremely dangerous for someone with Ehlers-Danlos to participate in physical therapy if the therapist has no knowledge of the illness), paying $8,000 for laser therapy with absolutely no results, and being forced to trial endless medications that are far more dangerous but cheaper for the insurance company -- just so I could be on a medication that we already knew was safe and worked with great results.

You know what is on my mind today? Whether or not I’ll be able to make it through the weekend without having a seizure and dying. NOT because I get seizures, NOT because my condition progressed so much that there is no hope, and NOT because the doctors don't know what is wrong with me or how to help me.

No, it is because a few people in some office working for a money hungry insurance company that has made a monopoly out of the health of our fellow citizens couldn't get their act together and figure out what was wrong on their end by 5 o clock Friday.

I was on the phone with Blue Care Network (Blue Cross-Blue Shield of Michigan) for hours Friday. HOURS! They couldn't tell me why I can't get my medication, just that I can't get it. They also wouldn't tell me if any of their rules or regulations changed.

They would only tell me that just because I never had a problem filling my meds before doesn't mean there isn't a problem now. They couldn't even tell me what the problem was!

I have the pharmacy, my primary care physician and my specialists all on my side, telling them I need the medication. Telling them how dangerous it will be if they don’t get this figured out. Telling them my life will be in jeopardy. And what is their response?

SARAH DANIELS

"Ma’am, I have no medical background so I can’t discern if that’s true or not.”  

Try Googling Ehlers-Danlos syndrome. Open your eyes, your heart and have some compassion!

I have done everything right. I have all the authorizations I need and have taken my meds as prescribed, no matter what the circumstances have been. This is why people all over the United States are dying. This is why suicide rates have jumped since the new CDC opioid guidelines have been put in place.

If I could pay for the medication out of pocket I would, but I am on disability like a lot of other people. My money can either go toward my rent and utilities or my medical bills, but it doesn’t pay for both. Most of the time I am struggling to have food on the table and gas in the car. I suppose on the bright side, with gastroparesis and a severe mobility disability, at least my need for both of those things is less.

You want to crack down on the heroin epidemic? How about allocating some funds for substance abuse and mental illness? How about counseling instead of jail time? Heroin addicts could care less about a rule or regulation. They will find a way to get high no matter what.

The war on opiates is killing chronic pain patients like me, who, if it weren’t for their medicine, would be bed ridden. We are the ones suffering. We are the ones paying for others’ choices and mistakes.

This isn’t right. Something has to be done. It’s 2016. There is no reason on earth that a 29-year old woman, a U.S. citizen, should have to worry about dying because they cannot get the medical care they need.

Sarah Daniels lives in the Detroit, Michigan area. She suffers from Ehlers Danlos syndrome and gastroparesis. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

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.

How Two Toddlers Saved My Life

By Crystal Lindell, Columnist

I wish I could say it’s been a rough couple months for me, but that’s not exactly true. It’s actually been more like a rough couple years.

I spent three years battling debilitating rib pain that nobody seemed to be able to cure. And then, when I discovered that my obscenely low vitamin D levels were likely to blame and I started to feel better, I faced an entirely new version of hell — opioid withdrawal.

I had been on morphine for three years, 24 hours a day, 7 days a week, and I honestly thought that when the rib pain subsided I could just endure 72 hours of physical hell and move on with my life.

But morphine is like an abusive boyfriend, it lingers. It hurts you and then offers you the cure, and then it hurts you again. And you always pay for the highs with desperate lows.

Studies have shown that it can take two years for your brain to adjust after withdrawing from opioids. And it turns out it doesn’t much matter if you were buying them off the street or getting them via a legitimate prescription from a legitimate doctor. Your brain doesn’t care.

And yes, I know, there are people out there who have an easy breezy time with it. They just decide to stop and then they stop.

I am not one of those people. I hate those people.

I have spent the last few months suffering from a potent mix of suicidal thoughts and anxiety attacks. And navigating the whole mess is especially hard because for some reason people think that if you are just a strong enough person, you’ll be fine. Let me tell you the truth, opioids don’t care if you are Wonder Woman herself, they will ravage you.

In the midst of all this, my best friend since childhood was pregnant with her third child. She and I are like sisters, having both endured crazy families, growing up poor and our 20’s together.

And so when she was put on strict bed rest about 27 weeks in, I said I would come stay with her during weekdays to help with her other two kids, who are both just toddlers themselves at 1 and 3 years old.

I work from home, so I have the luxury of volunteering for such things. And I confess I was pretty pleased with myself at the thought of playing a small role in making sure the newest member of their family was born healthy.

But if we’re being honest, she could have said no. She could have said that she didn’t want an opioid addict around her kids. She could have easily pointed to my debilitating anxiety attacks and said I was unfit to supervise toddlers.

Maybe she was too desperate to say anything like that to me. But I honestly don’t think she ever even thought it.

So, in late May, I basically moved in with her, her husband and two toddlers. I went from the cool chick who comes over and plays bubbles to the cool chick who has to give the kids baths, feed them, change diapers, clean up spit up, watch Sesame Street on repeat for 16 hours a day, AND play bubbles.

And somewhere along the way, I forgot that I was having a really rough couple of years.

Kids have a way of forcing you to be in the present. There’s no time to anxiously contemplate the meaning of life and whether or not you’ll ever find true love, when the meaning of life and true love are staring up at you calling you “Bistol” because the C sound is hard, and asking for another pack of gummy bears.

And I don’t care who you are, watching a child literally learn to do the most fundamental of human movements, walking, over a period of about three weeks is breathtaking and jaw dropping and mid-afternoon Taylor Swift dance party worthy.

And so, that is how one of the worst times in my life was transformed by two toddlers. Two boys who had no idea they were helping me navigate opioid withdrawal when they were screaming for teddy bears at 1 a.m., and spitting up all over the carpet, and eating rocks, and begging for ketchup, and laughing and crying and cuddling and loving.

Because that’s actually how it works, isn’t it? You think you’re saving someone, but then you realize that this whole time they were saving you.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Listen to the Voices Silenced by Overdoses

By Judy Rummler, Guest Columnist

In reply to the recent article in Pain News Network about the Steve Rummler Hope Foundation, I want first of all to say that I have great compassion for those with chronic pain. 

My son Steve suffered from back pain for 15 years and many of the staff and volunteers of the Steve Rummler Hope Foundation have family members who have also suffered with chronic pain.  Sadly, many of us have lost our loved ones to opioid overdoses and we are working to prevent this from happening to other families. 

Had more cautious and responsible opioid prescribing practices been implemented before Steve died of an accidental overdose, he would have been terrified at the thought of losing access to his opioid pain medication.  He had developed the disease of addiction and had come to believe that his pills were the only solution for his chronic pain. 

Steve was a dean’s list student, all-conference soccer player and a gifted musician. He had many friends and a loving fiancée and family, yet he lost interest in almost everything that had once been important to him. 

He experienced the dilemma facing those who need treatment for both chronic pain and addiction.  Among his belongings we found a note describing his pills that said, “At first they were a lifeline; now they are a noose around my neck.” 

JUDY RUMMLER

It is important to remember that, while we can all hear the calls for relief from those who are suffering with chronic pain, we can no longer hear the 200,000 plus silenced voices of those who have died from opioid overdoses.  These people did not want to die and many of them would have lived if physicians had practiced more cautious and responsible prescribing.  Like most doctors, Steve’s doctor was well-intentioned but had received little training on the prescribing of opioids for pain.  

In an effort to provide this much-needed training, the Steve Rummler Hope Foundation has created a lecture series on “Pain, Opioids and Addiction” in partnership with the Minnesota Medical Association (MMA) and the University of Minnesota Medical School.  

These lectures are presented to medical students, videotaped and made available for continuing medical education (CME) at no cost on the MMA website.  The hope of the series is to create a medical curriculum on pain, opioids and addiction as it should be in a medical school setting: balanced, practical, evidence-based information free of commercial bias.

The mission of the Steve Rummler Hope Foundation is to heighten awareness of the dilemma of chronic pain and the disease of addiction, and to improve the associated care process.  We provide hope for those with chronic pain and addiction through our three programs: Overdose Prevention, Prescriber Education and Advocacy.  More information is available on our website.

Judy Rummler is a co-founder of the Steve Rummler Hope Foundation, a 501 (c) (3) non-profit organization based in Minnesota. The foundation recently became the fiscal sponsor of Physicians for Responsible Opioid Prescribing (PROP).

 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.

13 Tips for Living with Gastroparesis

By Ellen Lenox Smith, Columnist

Few people understand what it’s like to live with gastroparesis – a digestive disorder that slows or stops the movement of food from the stomach to the intestine. Not being able to digest food and eliminate waste properly causes abdominal pain and bloating.

Gastroparesis can develop when the vagus nerve is damaged by an injury or illness and the stomach muscles stop working properly. In my case, it was triggered by Ehlers-Danlos syndrome.

The most extreme cases of gastroparesis lead to severe nausea, vomiting, and dehydration, when urgent care may be required at a medical facility so IV fluids can be given.

You can’t allow partially digested food to ferment and become toxic in your body. There are cases where death has resulted from not being treated.

I have been searching for answers for two years now. I had times when things seemed semi-normal. But for the past three months, I have been having on and off luck with elimination and wanted to share some tips I’ve learned that may help if you also suffer from gastroparesis.

1. Changing eating habits can sometimes help control the severity of gastroparesis symptoms. It is suggested to eat six small meals a day instead of three large ones. Less food makes it easier for the stomach to empty.

2. Chew food slowly and thoroughly while drinking at least 8-ounces of non-carbonated, sugar-free, caffeine-free fluid with each meal.

3. Walking or sitting for 2 hours after a meal -- instead of lying down -- may assist with gastric emptying.

4. Avoid eating high-fat foods, because fat slows digestion. Red meat, pork and fowl should be ground.

5. Avoid raw vegetables and fruits. They are more difficult to digest and the undigested parts may remain in the stomach too long. Oranges and broccoli, in particular, contain fibrous parts that do not digest well. Acceptable vegetables might include avocado, summer squash, zucchini, or mashed pumpkin.

6. A person with severe symptoms may have to turn to liquid or puréed food, which empty more quickly from the stomach. Puréed fresh or cooked fruits and vegetables can be incorporated into shakes and soups.

7. Some doctors recommend a gluten free diet. Even mild gluten intolerance can result in the development of thyroid imbalance, which could worsen gastroparesis.

8. Fermented food rich in lacto-fermented foods such as sauerkraut, kimchi, black garlic, and kefir can also improve digestion. Bone broth is very nutritious and healing for your gut, as it contains calcium, magnesium, phosphorus, sodium, potassium, glucosamine, chondroitin, and glycine to ease digestion and soothe inflammation.

9. Believe it or not, chewing gum can make a big difference too. The act of chewing produces saliva, which not only contains digestive enzymes but also stimulates muscular activity in the stomach and relaxes the pylorus, the lower part of the stomach. Chewing gum for at least 1 hour after meals is a very effective treatment of gastroparesis.

10.  High-fiber laxatives such as Metamucil that contain psyllium should be avoided.

11.  You might want to considering giving acupuncture a try. Needles are believed to restore healthy immune and neurological function while removing blocks in your life-force energy called ‘chi’.

12.  Colonics is also something to consider and what I have had to turn to weekly to eliminate waste. A colonic is the infusion of water into the rectum to cleanse and flush out the colon.

13.  There are medications that can help. I had amazing and quick results using metoclopramide, but unfortunately ended up reacting to it and had to stop. That was heartbreaking!

Living with gastroparesis is not easy and most people connected to you have no idea the sensations it is creating in your body. Remember that eliminating is a natural and necessary process. You must rid your body of those toxins and not allow them to ferment inside you.

I hope that one or more of these suggestions will help to improve the quality of your life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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 is Inevitable, But Suffering is Optional

By Rebecca May, Guest Columnist

Being a mom suffering with a chronic pain disorder is not for the faint of heart.  We need our own superhero: Super Sufferer. Able to clean up pain in a single bound!

The name might need some work.  I honestly am my own cheerleader, although I am a shadow of my former bad-ass self. But they say what doesn’t kill you makes you stronger.

I was lucky in the beginning, ten years ago. The pain started in my right arm. I could still run and dance.  Whoop it up and cause some harmless trouble.

Now, I fantasize about the thread count in my Egyptian cotton sheets. Netflix is my bestie, and I have been known to shake my pill bottles in the middle of the night just to make sure they are still there. 

The fear of withdrawal is intense. They say I am not addicted to the morphine, merely dependent. Well then, that should make me feel better, right? I am afraid that if people find out I need scary drugs to survive, they will think I am a fraud.

REBECCA MAY

What I have found is that these are my issues. Most people I share this personal information with have stories of their own. In fact, I end up knowing too much about their affected loved ones.

As chronic pain sufferers, we want to be understood. Doesn’t everyone? We will seek approval anywhere. If I catch the glance of a kind grocery clerk, they instantly become my new BFF. I have the routine and story down, including the long pauses for appropriate reactions. I turn to strangers because I don’t want to burden my family, especially my teenage kids.

I think all of us Super Sufferers have found ourselves in desperate situations. Like the 3:00 am online conversations with support group friends who also can’t sleep because of the never-ending pain.

Yet, after all the frustration, pain, and isolation, we are still here. It’s difficult to get any accurate number of suicides related to chronic pain, as many are from drug overdoses. People who seek me out either through articles or support groups are looking for someone who understands. Isolation and fear drive people to choose permanent choices.

Now that I am approaching mid-life as a chronic pain sufferer, I have to make some very difficult choices.

Do I continue to work?

The answer for me is as long as I am able. I tried staying at home. I watched Netflix until my eyes were sore. I gained weight and developed depression. I missed adult time and fresh air. After my permanent diagnosis, I thought the party was over. The truth is I just have to modify it. I installed hand bars, bought a cool cane and now I take my time.

What about exercise?

To be honest, I am not able to swing my arms and kick my knees to my chin anymore while African dancing. I can swim and do light cardio. I took up walking around the track with a friend. She knows that I may need to slow down.

What do I do for fun now?

There are people who are going to think you are faking -- that is all of them. They are not your problem. I still do most of the things I did before, with the exception of dancing and running. I love going to the movies, swimming, museums, and grabbing coffee with friends.

Set your own pace. It is okay to cancel plans. Just remind your friends that today it isn’t the best day for you. 

Rebbeca May suffers from Kienbock's disease, Complex Regional Pain Syndrome, adrenal fatigue, fibromyalgia, sleep apnea, and reproductive issues. She lives in the Pacific Northwest with her family.

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.

A Pained Life: The Insidiousness of Pain

By Carol Levy, Columnist

Nineteen years ago this November a major portion of my trigeminal neuralgia pain spontaneously disappeared.

Unfortunately, it is not the part that keeps me disabled (the eye usage and eye movement pain), but it was the worst of the pain – constant, spontaneous and the most feared. Pain that was triggered by the slightest touch; even the wisp of one hair brushing against the affected part of my face.

Every day since that wonderful moment in time I am thankful. I can stand under a shower. I can walk in the breeze. I can do all of the things that previously necessitated fear and constant surveillance.

Is it going to rain? Is there a breeze? Am I standing too close to someone and they can touch my face and trigger the pain?

Thousands of worries pummeled me, my attention focused on only one goal: to not be in a situation where the pain could be triggered by someone or something.

It is wonderful that the worry is gone. It is freeing that the conditions no longer exist.

And yet the fear repeatedly rears its ugly head.

Pain is insidious.

We know the enemy that we feel each day, every time we have to use the part of our body that creates and causes the pain.

The harm it secretly causes is not so easy to know. It is often quiet, a monster stealthily and underhandedly stalking us.

It wends its way thought our mind and brain, creating troughs of sensation memory, reminders of fear and worry. What set it off before might set it off again. What will set it off now?

It is easy to go there, even when we don't want to. It is not so easy to figure out how to reduce what fills it, much less empty it out.

Even after nearly two decades, I am repeatedly surprised by these fears. A breeze comes up and I freeze in place, someone brushes by me and I wince, gritting my teeth in anticipation of the pain.

And then. Whoosh. Oh, right. I don't have it anymore. I no longer need to be afraid.

It is a part of the effect of chronic pain that is rarely talked about. Researchers and lay people talk about the psychological implications or the emotional causes of chronic pain. They truly do not understand the long term effects of the pain on the parts of us that are hidden, maybe even from ourselves.

It does not have to be a spontaneous remission. It may be that a small portion of the pain is gone or maybe you find that you can do something you thought you physically could not, but now realize you can.

And yet the warning signal goes off in your head: Danger! Danger! Pain coming!

Stopping the alarm is hard to do. I know that for sure.

But looking inside ourselves -- searching, finding and destroying, if we can, that little voice that says, “Uh oh, pain ahead.”

Silencing that false alarm can go a long way towards removing one more obstacle in our search for a freer way of living with pain.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.