The Link Between Chronic Pain and Depression

By Lana Barhum, Columnist

There are nearly 40 million American adults living with severe or significant chronic pain, according to the National Institutes of Health. Chronic pain affects more people than cancer, diabetes and heart disease combined.   

Chronic pain is devastating and can be a challenge to treat. Pain also causes depression and depression leads to decreased function, poor treatment outcomes and further healthcare costs. About half of people with chronic pain are also depressed, according to a recent study in the Journal of Affective Disorders.

"The dual burden of chronic physical conditions and mood and anxiety disorders is a significant and growing problem," wrote senior author Silvia Martins, MD, associate professor of Epidemiology at the Mailman School of Public Health.

Pain experiences are different for each person and your response to chronic pain depends on how you feel pain, and thoughts and behaviors related to your underlying pain conditions.  

When pain invades every aspect of your life and leaves you uncertain of the future, anxiety, sadness, anger and grief are imminent. For many, the burden is so difficult, it leads to major depressive disorder, also known as clinical depression.

Research shows the highest rates of clinical depression are in people with fibromyalgia. According to a study in Pain Research and Treatment, people with fibromyalgia have a 90% chance for depressed symptoms and up to 86% risk for major depressive disorder. 

What is Clinical Depression?

Clinical depression is more complicated than dealing with sadness and grief. This type of depression leaves you unable to focus on work, get good quality sleep, eat well, or enjoy time with friends and loved ones.  Some people experience clinical depression once, but many have experienced it several times during their life.

Some symptoms of clinical depression are:

• Fatigue and loss of energy
• Feelings of guilt and worthlessness
• Struggles with concentration and decision making
• Sleep problems, including insomnia or excessive sleeping
• Disinterest in almost all activities
• Constant thoughts of dying and suicide
• Significant weight loss or gain

My Experience with Clinical Depression

Depression has been a frequent visitor to my chronically painful life, but the first time I was formally diagnosed with clinical depression was 2011.  It had been 3 years since I was diagnosed with rheumatoid arthritis and fibromyalgia, two painful and life-altering conditions.  Not only was pain dominating my life, there was so much more happening because of pain, that I couldn’t handle it all. 

I knew I was struggling, but I didn’t know the extent.  I was crying for no reason, not sleeping, and my mind was constantly racing.  And I thought about death – not contemplating suicide but that death had to be better than living with real physical and emotional pain.

It was my rheumatologist who recognized the extent of my depression, prescribed an anti-depressant and referred me to a therapist. Talk therapy helped me better handle my feelings about living with pain and other obstacles, and the medication managed the chemical part of depression. Eventually and with time, I found some clarity.

There have been other times in more than nine years of living with illness and pain that depression has gotten its clutches on me. But it was not until last summer that I had another episode of clinical depression.  I unexpectedly lost my mother in late August and that loss shook me to my very core and brought back my old friend depression with it.

Preventing Recurrent Depression

Anyone who has suffered from at least one episode of depression is at risk for another, and the risk is higher in people who have been diagnosed with clinical depression. According to a 2104 report from the University Medical Center Groningen in The Netherlands, recurrent depression is more common in people who live with pain.

The best way to treat and prevent recurrent depression, according to a discussion in the Primary Care Companion to The Journal of Clinical Psychiatry, is through maintenance therapy that includes talk therapy and medication, and where medication is decreased as the depression lessens.

Depression does not have to last forever and it doesn’t have to consume your life. But when you are dealing with the sadness, anger, grief and pain, relief seems unimaginable.  My experience with clinical recurrent depression and pain has taught me that there is always hope.  It won’t be easy, but it’s not impossible.

If you want to manage your depression and prevent it from coming back, it is important to take a proactive approach.  Here’s how:

Early Recognition. If you have been clinically depressed before, you know that depression comes and goes.  If you find you are feeling exhausted, hopeless, distressed and struggling to be productive daily, reach out to your doctor or therapist to find ways to keep symptoms from worsening.  

Learn Your Triggers. For most of us, pain is a stressor and increases the chance being depressed.  But depressed feelings and anxiety also worsen pain. Therefore, it’s important to focus on minimizing things that exacerbate pain.

Communication.  Many people with chronic pain do not reach out to their doctors because they don’t think there is anything that can be done or they feel that if their pain levels are managed, then their depression will go away. But depression doesn’t just go away and it only worsens your pain levels.  Getting treatment is the only way to a full recovery and to prevent depression from returning.

Please know you are not alone.  There are millions of people with chronic pain and clinical recurrent depression. Reach out and seek support, whether it is online, in a local community support group or from others – a pastor, a mental health professional, a friend or loved one.   Your mental health is just as important as your physical and it is important to treat it as such.

Lana Barhum lives in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant, and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

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

CDC Guidelines Making Opioid Problem Worse

By Gary Nations, Guest Columnist

I’m a medically retired police officer with over 22 years of service. I have been in chronic pain management for many years now and my condition will never get better.

Throughout my time dealing with workers compensation and the public employee retirement system in Mississippi, I have been examined by no less than five medical doctors. Unfortunately for me, the conclusion is my condition is progressive and will only get worse.

I’ve had four neck surgeries and one lower back surgery due to on-the-job injuries. For the past few years I have found a pain management regimen that allows me to have somewhat of a normal life, although I still experience pain 24/7. I would love to see a substance that relieved pain without the problems caused by opioid medication.

The recent upswing in deaths from opioid abuse is tragic. However, the guidelines developed by the CDC for doctors to reduce opioid dosages for pain patients like me will cause more problems than it solves.

I believe some of the actions taken so far have created a vacuum and worsened the epidemic, which I believe is about to get much bigger.  Some people are going to abuse some type of substance no matter what. That’s an unfortunate fact that cannot be stopped.

Cutting the dose of medication for people in my position who need it will force them to violate the law to maintain their level of pain management and quality of life.

GARY NATIONS

This could prove a disaster, as we know many street drugs contain powerful opioids such as fentanyl, which the DEA has been very unsuccessful in stopping. Some of these street drugs are counterfeit. They appear to be a medication that a doctor would prescribe, yet they contain other drugs that cause people to overdose and die. From what I read and understand, this is what happened to the entertainer Prince. Some patients may also tire of the constant pain and commit suicide with street drugs.

The Declaration of Independence endows each citizen the right to life, liberty and the pursuit of happiness. I believe the CDC’s attempt to curb the opioid overdose and death rate is very noble. However, I also believe in the long run it will violate citizens’ rights, do much more harm than good and end up in the civil courts. As I’m sure you are aware, in some cases large sums of money are paid out each year in legal cases for “pain and suffering.”

There is no way the CDC can tell what medication and how much medication I or anyone else needs to attempt to maintain their current level of activity, quality of life and pursuit of happiness.  Only a qualified physician with medical training, medical records and medical images can understand what a patient may or may not need. The CDC needs to remember there are many people with very legitimate needs for these controlled substances. 

Last year was the first time in over ten years I could enjoy hunting and fishing again. I became active enough that I went from 255 pounds down to 215 pounds. I started feeling better and asked my doctor to drop my “breakthrough” pain meds from 120 to 90 per month. I’ve since realized I really need about 100 per month, but I get by.

The key here is I volunteered to stop taking 30 pills per month. Yes, my doctor was surprised.  However, because of rule changes, I can’t get my pain meds from that doctor anymore. I have to drive one hour each way to a pain management doctor to get my meds now. The long drive is very painful and the cost is higher.

Cutting my current pain management regimen will result in me being in more pain than I am now. It will cause me to be unable to exercise my right to hunt and fish. It will cause me to be unable to do yard work, such as mowing the lawn. Not being able to mow the lawn will result in an additional expense of $80 to $100 per month during the warm weather months.

It will cause me to once again be unable to travel and engage in some aspects of the only hobby I can currently enjoy, amateur radio. In other words, much of my liberty will be taken and my quality of life heavily impacted. My only income is Mississippi Public Employees Retirement System disability payments. Some citizens that are currently able to work with proper pain management may also have to seek disability if their doses are cut.

As I stated, I believe the effort to stop drug abuse and addiction is very noble. However, the route to solving this opioid problem should not include violating the rights of our disabled citizens or cause some patients to become criminals while trying to maintain what little normalcy and quality of life they have now.

I’m seeking your help to stop the CDC from punishing citizens that need to be on long term pain management and to get the CDC to reevaluate how it is handling a very important problem. I believe it’s time for someone to help us by filing for an injunction or a class action lawsuit to stop this craziness.

Gary Nations lives in Mississippi.

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 Mismanagement

By Jillian Drexler, Guest Columnist

I’ve been going to the same pain management doctor for over 8 months. While at these appointments, I see the physician assistant (PA) far more often than I see the doctor.

The PA is a very unpleasant person and lacks basic compassion and bedside manner. At an appointment last year, I was crying because of my pain and lack of sleep, and she couldn’t even be bothered to hand me a tissue. She was just more of her typical overbearing, sarcastic self.

Since I’ve been going there, I’ve been prescribed tramadol (which I’m allergic to), Lyrica (causes my wrists and ankles to swell and my pain to worsen), compound cream, lidocaine patches, Flector patches and a TENS unit. I’ve also had a few injections, with the most recent ones causing severe adverse effects.

They would have a better idea of what medications work and don’t work for me had they bothered to read the medication genetic testing report my primary care physician ordered. But, the pain management doctor turned down making copies on two occasions. They finally made a copy when I asked a medical assistant instead of the doctor or PA to make copies.

They’ve asked me more than once what opioids have worked for me in the past. I tell them and also explain that these medications have only been prescribed in the ER and after surgeries. Either way, I’m still denied the opioids I know can help alleviate some of my pain and improve my quality of life.

I’ve passed their drug tests and jumped through their hoops, only to get nothing in return but treatments that don’t work. On one occasion, the PA told me she didn’t know what I expected her to do about my fibromyalgia because that wasn’t her “baby.”

JILLIAN DREXLER

Often, they fail to realize I’m not just a patient, but a paying customer. And a very unhappy one, too. They don’t care though.

Patients are told they should play an active role in their treatment, but when we do, it doesn’t seem to matter. Nothing changes. We're perceived as drug seekers or told we’re exhibiting drug seeking behavior. It could never be that we’re in legitimate pain and hoping for relief.

I don’t ask for much from my medical team other than respect, answers and help with an improved quality of life. I’m 33 years old and this life wracked with pain isn’t living. I’m simply existing and missing out on so much in life. I’ve lost my ability to work, provide for my family and spend quality time with them.

I recently was denied for disability again. I wonder if the government ever considered just how many of us are forced to stop working because our pain medications were reduced or stopped entirely.

The CDC should have come up with something for us before putting their guidelines in place. It’s wrong and unfair that we are being punished for the actions of the guilty few. Because of this, the issue becomes an “us vs. them” situation. Addicts need love and treatment, just like any other patient, but while lifesaving measures are in place for them, we’re left feeling slighted and wondering if anyone cares about us. Already, far too many chronic pain patients have lost hope and feel there is no other option but to end their lives.

My governor recently announced plans to limit opioid prescriptions for acute pain to 7 days. Gov. John Kasich said it won’t effect chronic pain patients, but I tend to doubt that. I mean, how could it not? Ohio is considered one of the hardest hit states in the heroin and opioid epidemic.

Last September, a new state law was approved that allows doctors to prescribe medical marijuana to patients with qualifying medical conditions. The program won’t be in operation until September 2018.

If we’re going through such a difficult time getting opioids, I can just imagine how difficult it will be getting a medical marijuana card and then the marijuana itself. If a pain patient is still working, many would risk losing their jobs because some employers have publicly said they will have no tolerance for marijuana use for any reason.

Ultimately, there’s no win here for chronic pain patients, not as this time. We must stick together and fight for our right to a life of reduced pain. Respect, improved quality of life, and effective treatment aren’t too much to ask for. They wouldn’t take blood pressure medication away from someone who has hypertension or insulin from a diabetic, so why deny or take medications away from pain patients?

Jillian Drexler is from Cincinnati, Ohio. She lives with fibromyalgia, bulging and herniated discs in her neck and back, migraines, sciatica, and post tubal ligation syndrome (PTLS).

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.

Why We Must Ditch the Term 'Chronic Pain'

By Janice Reynolds, Guest Columnist

The term “chronic pain” is being used as a weapon against people living in pain.  People who are prejudiced and biased against pain sufferers often use it in derogatory way, to imply their pain is not that bad or that they are even lying about it.

Over 15 years ago, some members of the American Society for Pain Management Nursing, including myself, recognized the negative connotation of the term and attempted to change it to “persistent pain,” obviously without much success. 

“Chronic” only means a time frame of 3 months or more. No one knows how it became a term to mean a “type” of pain. 

When I was an oncology nurse, I did some research on the biological differences between cancer pain and “non-cancer” pain, and didn’t find any. No one knew how the differentiation came to be. There was no evidence to support it.

Chronic pain does not exist as an entity; it applies to many different types of pain syndromes and diseases. So when someone says there is no evidence to support using opioids for chronic pain or that opioids make chronic pain worse, these are outright lies. Or if you want to be kinder, false assumptions based on erroneous evidence. Research based on false principles.

One of the things the so-called opioid epidemic has done is given some validity to these prejudices and biases to justify the war on people in pain. The abuse by politicians and the media is too complicated to go into here, but when you have someone like Sen. Susan Collins of Maine saying pain management is important for cancer patients or end-of-life care, but addiction is a bigger problem for chronic pain patients, then it is obvious that “chronic pain” is being used as a bludgeon.

What is one thing people in pain, advocates and providers can do?

Stop using the term “chronic pain” and start using the condition or disease that causes the pain.

I have persistent post craniotomy pain, for example. You might have pain from fibromyalgia. Or pain from arachnoiditis, rheumatoid arthritis, shingles, migraine, peripheral neuropathy, Ehlers-Danlos syndrome, and so on.  Be specific. There are many reasons for back pain, neuropathies and other syndromes.

When we talk or write about persistent pain, use the terms “people in pain” or “people living in pain.” I want organizations to throw the term “chronic pain” out as well. How much more supportive is the name “American Association for People in Pain” as opposed to the American Chronic Pain Association?

This will be a difficult paradigm to change, especially for professionals and journalists. But without change, “chronic pain” will continue to be used as a tool for hate.  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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.

How to Advocate for 'Generation P'

By Barby Ingle, Columnist

There is so much talk about Generation X, Y and now Z, it got me thinking about what generation I belong to. There are psychological, cultural and sociological dimensions to identifying with a generation.

I decided that I am with Generation P -- the “P” standing for chronic pain. Typically, a generation is defined by being born during a specific time period, but pain affects all ages without discrimination. Therefore, you belong to Generation P if you are living with daily pain, no matter what your age.

What does it mean to be part of Generation P? When you become a chronic pain patient, you begin to be left behind by your old generation and become part of a new generation where the main theme is survival. We have to focus on recreating a new life, instead of living the one we had. Our attitudes and important factors in life are reevaluated and change. We need to learn how to navigate through the healthcare system, understanding that there are not many who are treated properly when it comes to pain care.

Being a successful contributor to Generation P starts with self-advocacy. If we don’t stand up for ourselves, things won’t get better. We must learn how to change policy, change laws, change the service system we have access to, and change public attitudes.

I have seen many people with chronic pain fight for their right to fully participate in all aspects of life, despite their disabilities. I have had to do this myself. This is where our awakening begins.

We must learn to put in great effort and use our energy pennies wisely to get the care that we need. We use problem solving to get through our days, and once we learn to do that effectively, we can begin to advocate for others having similar troubles. We must work to improve pain care, protect rights and stop discrimination. We must stop abusive treatment and make pain care more fair, equal and humane. We can do this by removing barriers that prevent access to pain care, so we can better participate in society and have our voice heard.

We must be sensitive and understanding to others who are trying to overcome the challenges of living with chronic pain. We need to be persistent in our search for good care and determined that our efforts will make progress despite setbacks.  

Advocates should listen and be objective. This is the most effective way to get the care we need. We must recognize our own prejudices and tendencies. We shouldn’t second guess or judge what someone else’s pain experience is. We need to trust their judgement. If something works for them but not us, that’s okay because we will continue the search to find what works for us.

How effective we are depends on how we handle our situations and challenges. We must constantly reevaluate our situations and attitude. We must be polite but firm. We must learn to work with others without controlling them. We must also pay attention to privacy and confidentiality for others so we can maintain credibility.

When it comes to advocacy, we recognize that there are millions of ways to do it, but that we all have the same hope and that when we use our voice for good we not only help Generation P, but also those who are Generation X, Y, and Z. One day they too will become members of Generation P.

Generation P is the now of pain care. It is up to us to create social change, carve a path for better and timely pain care, and increase awareness about chronic pain.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

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

AARP’s ‘Opioid Menace’ a Disservice to Pain Patients

(Editor’s note: The American Association of Retired Persons (AARP) recently published a series of special reports entitled "The Opioid Menace!"

The series focuses on the abuse of pain medication, claiming that many older Americans have become “new opioid dealers” who are fueling the opioid crisis by “selling their prescription painkillers to drug pushers.” Doctors are also blamed for the “sin of overprescription.”

PNN reader Rochelle Odell was upset about the lack of balance in the series, and sent this letter to AARP.)

Dear AARP Editor:

I have been a member of AARP since I turned 50, due to disability.  I suffer from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD).  Like many long term CRPS patients, my spine is a mess.

I was appalled when I read your article on "The Opioid Menace.” Excuse me, but what a crock of you know what. Your organization has done a great disservice to the tens of millions of Americans who live with chronic pain, including many who are over the age of 50.

Did your reporters contact any of the major pain organizations? I doubt it, from reading your article. I am going to have to spend some time researching the correct numbers, but I believe opioid addiction among chronic/intractable pain patients is less than 5%, a far lower number than you referenced.

When the CDC came out with their opioid guidelines in 2016, which by the way were just that -- guidelines for primary care physicians only -- my medications were stopped, like so many across the country, cold turkey no less. And I had been on pain medication for over 20 years.

My first treating physician didn't believe in pain medication unless absolutely necessary, so I underwent painful blocks for both upper and lower extremities, along with the implant of three different types of spinal cord stimulators and two pain pumps. The first one never worked and the second one, my body rejected.

I was poked and prodded, and my spine underwent such an assault that -- had I known then what I know now, I never would have agreed to.

I was given a variety of medications other than opioids, which never worked or caused side effects so severe, they certainly weren't worth taking. You name it, it was done to me before I was finally placed on an opioid regime only.

ROCHELLE ODELL

Now that I am "opioid free," my pain is off the scale. I no longer function. I have been house/bed bound since December. My vehicle sits dead in the garage. I have become too ill to even go to the doctor.

I contacted my Medicare Advantage insurance company for assistance due to my circumstances, but their willingness to help ended there.  See, I am supposed to find the energy to take a shower, get dressed, ride in a vehicle to a new primary care physician, then wait in the office and hope the physician can assist me. I can barely make it to the bathroom, let alone venture to a doctor's office. To top it off, my voice is now affected and I no longer talk on the phone.

I am but one among many across our nation, who has been adversely affected by these guidelines and false statistics. Your organization needs to research, then report the other side of the coin. Those of us who have lost the ability to function or live in severe pain, non-stop 24/7, 365 days a year, are suffering. Tell our story, please! 

Just because a person dies with prescription drugs in their system, does not mean they died of an overdose. It just means they had drugs in their system at the time of death. 

A chronic pain patient sees their pain management physician on a regular basis, usually monthly. We dutifully sign pain contracts and pee into the cup. It can be so degrading, but if we do not, we are labeled non-compliant and dropped.

A chronic pain patient guards their pain medication to a fault, they are too valuable for our survival to risk losing or selling. Yes, there are a few, very few, who use too many per month or divert them for money, but a good pain physician keeps track of that abuse, as do pharmacies.

Do illicit drug users do this? No, they only look forward to their next high. A chronic pain patient never gets high off their medication, their pain is that overwhelming. Illicit drug users steal and prostitute themselves to feed their habit. Unfortunately, even older Americans who have had their medications stopped or significantly reduced are now forced to search on the streets/internet for drugs for their pain.

Believe me, if I had the money and knew where to look, I might be tempted to do the same. But living on a fixed income precludes anything illegal. We didn't ask for these painful diseases, and we didn't ask that our careers be halted in our 40's and 50's in one fell swoop. If we could give our diseases back, we would in a heartbeat, including the drugs needed just to function.

Another issue is the fact many illicit drug users use heroin laced with fentanyl, along with mixing alcohol to obtain their high. Or the growing number of illicit drug factories that have been raided within the past year. Drug dealers are churning out hundreds of thousands of counterfeit fentanyl/oxycodone pills. Pill presses are shipped from China and the drug cartels south of the border, along with the illicit drugs required to make these pills. Did your reporters research this? No.

Living alone at 70 and not functioning has been a real test. Thankfully, I do my food shopping online, so my dog and I don't starve. It isn't the same as doing my own shopping, but I can purchase food including frozen and fresh.  I pay my neighbors a small amount to pull the weeds from my yard and pick up my dog's waste. But I am very close to just walking away from a home I have lived in for fifteen years, that's how severe my situation has become and I am not unique.

You only interviewed a very tiny group of people who claim to have gotten hooked on prescription drugs. AARP has overlooked the real problem, which is illicit drugs, not prescription drugs. I don't know where your reporters obtained their statistics, but they are far off base.

Like many elected officials and government regulators, AARP has grossly overlooked a significant number of people adversely affected by this false information. I could go on and on about the damage your article and incorrect information has caused to chronic pain patients. Quite frankly, I expected better from AARP.

Rochelle Odell lives in California.

To see the AARP series and watch a video version, click 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.

A Pained Life: Living on Hope

By Carol Levy, Columnist

"Never lose hope. Storms make people stronger and never last forever." Roy T. Bennett 

"He that lives upon hope will die fasting." Benjamin Franklin

"Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all."  Emily Dickinson

I could go on and on. Why am I in this mood?

I have an appointment tomorrow with a new doctor. He spoke at our trigeminal neuralgia support group some weeks back, so I know he understands the condition and the pain.

He also specializes in neuropathic pain. This is a source of pain that occurs as a result of diseases, lesions or injuries to the nervous system.

As a result of the many neurosurgical interventions I have had, this -- as opposed to “merely” trigeminal neuralgia -- appears to be the cause of my pain.

I was very lucky in that the worst of my trigeminal neuralgia pain -- constant, triggered and spontaneous – suddenly went into remission. Unfortunately, the eye pain that keeps me in pain and disabled remains.

Almost every doctor I have seen -- neurosurgeons, neurologists, ophthalmologists and neuro-opthalmologists -- have tended to have the same response to my plaintive cry: "What causes this pain when I use my eyes? Why do I still have it? Isn't there anything that can be done?”  

Shoulders are shrugged, eyebrows raised. “I dunno” is the usual response.

I have heard that answer too many times to count. I know this is the standard answer. I also know it is probably the true answer.

And yet.

I am anxious about my appointment tomorrow. Maybe this doctor, maybe he will be the one who finally says, “Yes. This is why your eye pain persists. Here is a prescription (or a treatment or heck, even a surgery, I'm game if it is a real answer). This will fix it.”

In my heart and mind, I know I am probably setting myself up for another disappointment.

But how do you stop hope? Especially when hope is all that keeps you going. Maybe today, maybe tomorrow. Maybe someday.  Maybe. Maybe. Maybe my pain will stop or be reduced to the level where I can work and be out in the world for as long and as much as I want. Dickinson said it. Hope "never stops at all.”

Bennett is wrong. My storm of living with pain has probably made me stronger. More resilient and more dogged, but it has lasted for 39 years. My storm of pain is a forever storm. Maybe it is time to let the hope go.

Franklin may have said it best, living on hope means that I die fasting and hungry. But what choice do I have?  Giving up hope would mean giving up the one thing that keeps me going. Even if the hope is false.

And who knows? Maybe tomorrow's doctor will have the magic pill.

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.

Walk a Mile in My Shoes Before You Limit Opioids

By Craig Bowden, Guest Columnist

I am 46 years old and have had a very good life until the last few years, when chronic pain stole all of my professional aspirations, and put the love of my family and my wife to an extreme test.

For the last 25 years I've been in the communications industry, mostly involved with fiber optic technology. I also worked in a metal casting foundry, which is when I had a severe motorcycle accident that gave me a concussion, shattered my right arm at the elbow, and left me with many small fractures and bone chips in my wrists.

The pain was intense, but I never complained about it. I followed doctor’s orders in terms of medications and physical therapy, and it still required 5 surgeries before my right arm had some limited function. I never focused on the pain, I focused on recovery. Although this happened over 20 years ago, I still live with the pain from those injuries every day.

Needless to say, my foundry days were done and I needed to find a career that would work with my limited right arm. 

CRAIG BOWDEN

Over the years, I've been involved in a number of other accidents, including a head-on crash at an intersection where the oncoming driver was trying to beat a red light, swerved to miss another vehicle and hit my car head on at 60 mph. That crash broke two of my ribs and smashed my knees up pretty bad.

Years later, I broke my left wrist in a slip/fall accident. It happened so fast and broke my wrist in the worst possible way. Fortunately, I was able to get patched up again.

The reason I share these stories is because I want you to understand that I'm not an addict, nor will I ever be. Pain medication was something I never abused. I only needed relief to get a few hours of sleep or to spend time with my kids. I used pain medication sparingly because I didn't like the way it made me feel in the head. I mostly used ice and survived just fine.

But bigger problems were on the way.

As years passed, I became somewhat of an expert in the field of fiber optics. I traveled and worked with many companies across the U.S. I also started my own fiber optic business in 2003 in my garage. It was a bumpy start, but soon we were selling over $6 million annually and facing huge opportunities. Then I hit a wall. The pain wall.

I was working on a project when I had sharp acute pain in my lower left abdomen. It was very intense, but being no stranger to pain (and surrounded by clients), I pushed through and nobody was any wiser that I was suffering. I was sweating uncontrollably, shaking all over, dizzy and even slurring some of my speech. I continued to work 3 more days before finally seeing my primary care doc.

They put me through a day’s worth of tests such as ultrasound (looking for hernia), HIDA scan (gallbladder) and others until they finally got me in for a cat scan. Bam! Bad news. I had a perforated colon that required immediate antibiotics and emergency surgery. I had been living for almost 5 days with a severe sepsis infection and everyone agreed that I was lucky to have survived. But I didn't complain about the pain.

Over the next several years, I endured 8 more abdominal surgeries, plus many other hospital admissions for strangulated bowel or bowel rest, along with countless other visits to ERs with uncontrolled pain.

As an unwanted byproduct of all these surgeries, I developed "ARD" or Adhesion Related Disorder, also known as Adhesions Disease. Adhesions are like scar tissues and can cause organs to stick together like glue. Most people develop some form of adhesion post-surgery, but for some reason my body just keeps churning out adhesions like an assembly line.

Many of the surgeries I've had were exploratory, or in other words: "We don't know what's causing all the pain so we need to look around.” Once the doctors cut me open, I'd be on the operating table for 10-12 hours while they cut away the fibrous adhesions. I became very aware of the early warning signs of a blockage or strangulated bowel.

I am very pragmatic when it comes to pain. I believe that a "1" on the pain scale is when you stub your toe on a table leg and a "10" is the point at which I would black out from excessive pain (which has happened to me twice). I've had numerous instances of a 9/10 pain scale and would be screaming uncontrollably in the ER.

Many of my hospital visits helped get the pain under control, but when I went home, I used pain drugs sparingly. I always recovered from the surgeries in 40 to 60 days and went right back to working 80-100 hour a week. I never gave a thought to the pain meds once I was up and running again.

Who are these people who think using oxycodone for pain control is a gateway to drug abuse? Using their logic, I should be a serious heroin and crack abuser by now, but I've never even tried illegal drugs.

In 2015, my surgeon put me on high doses of fentanyl and oxycodone, enough to kill a "normal" person from respiratory failure.  Two years later I’m still alive, have successfully weaned myself to a lower dose and I'm not an addict. So my primary care physician and my pharmacy shouldn't treat me like one! But the CDC guidelines have everyone under a microscope, so they're cutting back access to people in genuine pain. 

I only have 6 feet of small intestine remaining, which is inside a dense ball of adhesions. Operating on it would be very risky and could cause pancreatitis. There is not enough small bowel to properly absorb food, so I take many vitamins and supplements as well as motility and pain meds. I had to sell my company, which was heartbreaking, but I simply couldn't run it anymore. My wife stayed with me 24 hours a day, every day, while I was hospitalized.

I now attend a specialty clinic that uses a blend of massage, myofacial holds, physical therapy and strong palpation on the abdomen to take down adhesions and loosen my tissues so I can move. I feel certain this amazing treatment has kept me out of surgery. In terms of pain, my very best day is a 3 or 4 on the pain scale and my worst can spike to 7 or 8 at times.

I’ve thought about ending things with a bullet to the head countless times. But I just can't insult my wife, kids, family and friends who stuck with me through all this by taking the easy way out.

Chronic pain patients like myself should not be vilified as criminals, but the CDC guidelines have set in motion a vast effort to control the flow of opioids. Doctors are leery to prescribe pain medication, pharmacists don't want to fill the scripts and they all look at patients with a glare of mistrust.

I'd give ANYTHING to give real, severe and unrelenting pain to some of these CDC bureaucrats and see how they tolerate it like I do every day. They should walk a mile in my shoes first.

Craig Bowden lives in Florida with his 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.

The 4 A’s That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist  

I often hear from pain patients who say that they have tried everything to help lower or relieve their pain levels. Many times what they mean is that their healthcare provider did all they could, and they got minimal or no relief and gave up.

We must realize that providers don’t have all the answers, insurance doesn’t cover all the options that may help, and there are new treatments and therapies that may lower your pain. Many of these treatment modalities are not covered by insurance – so providers may not even offer them. Access to them is limited unless you know your options and create a plan to get them.

Many of these treatment modalities are not covered by insurance – so providers may not even offer them. Access to them is limited unless you know your options and create a plan to get them.

In my next few columns I’m going to focus on some of these treatments, starting with the 4 A’s: acupressure, acupuncture, aromatherapy and art therapy.  

Acupressure

When it comes to acupressure, you can go to a practitioner or you can learn to do the techniques on yourself at home for free. The practitioner works with your pressure points, which are known as meridians. Putting pressure on these meridian points can reduce muscle tension, improve circulation and stimulate the release of endorphins, which are natural pain relievers. All can help lower pain levels.

They are also said to work on your body’s energy field, mind, emotions and spirit. A session with a practitioner lasts about an hour, but you can learn the techniques and do them on your own or with a caregiver.

During the session, you’ll usually lay on a flat comfortable massage table or bed. Some of the pressure points in your hands can be treated while sitting and watching a movie or TV show.

The pressure point that works best for me to calm my mind, improve memory, relieve stress, lower fatigue, and reduce my migraines and insomnia is known as the Third Eye Acupressure point.

Acupuncture

Acupuncture is a little more invasive than acupressure. Due to having a small nerve fiber disease, it is not the best option for me, but I know others who love it.

Acupuncture practitioners insert very small needles through your skin at acupuncture/meridian points. Some potential side effects can be temporary soreness, minor bleeding or bruising at the needle sites. If the needle is pushed in too deeply, it can damage muscles and organs. These are rare complication, but make sure you use an experienced practitioner.

Lower back pain is the number one reason people seek this form of treatment, and there are hundreds of clinical studies that show acupuncture can be beneficial for musculoskeletal issues like back and neck pain.

It can also help with nausea, migraines, depression, anxiety and insomnia, all challenges we can face as pain patients. There is promising evidence acupuncture helps with arthritis, spinal stenosis and inflammation.

Although relief is typically short-term for acupuncture and many other treatments, it can still give the patient back some quality of life.

Aromatherapy

Have you ever smelled something that took you back to a time and place when good things happened in your life? Like apple pie reminding you of July 4th celebrations as a child? Or pumpkin pie bringing back memories of Thanksgiving dinner? Or good times raking up the leaves in the yard?

Aromatherapy can help you get in a good mood for meditation. I use it for migraines and taking the edge off my pain levels. You can use essential oils that help with specific challenges you are facing. You just massage them into your skin or put a dab on your temples. I also use a scented light in my house to keep positive vibes flowing.

This type of therapy has been around for many years, but started to become popular in the 1980’s. Lotions, candles, oils and teas can fill your house with good smells and memories to take the edge off your pain levels. Some promote physical healing, emotional healing, relaxation, and calming properties.

When using a practitioner who combines massage with aromatherapy, the session lasts about an hour and usually involves essential oils. This way your skin absorbs the oils and you also breathe their aroma at the same time. Plus, you experience the physical therapy of the massage itself.

Evidence as to how aromatherapy works is not entirely clear. But it provides relief for many different conditions, including psoriasis, rheumatoid arthritis, cancer pain, headaches, itching, insomnia, constipation, anxiety, and agitation. Studies have shown that chronic pain patients require fewer pain medications when they use aromatherapy.

Aromatherapy products can be inexpensive and are more attainable for low income and underinsured patients.

Art Therapy

There are many forms of art therapy, from music, dancing and writing to painting, sculpting and even just watching someone else perform. One of my favorites for dystonia is working on impossible puzzles.

Art therapy can enhance one’s mood, improve emotions, and reduce stress and depression. If we can get these challenges under control, then the stress hormones and chemicals they produce in our body that aggravate pain can be lessened.

Art therapy can also help heal emotional injuries. Think of it as a form of mindfulness where we develop our capacity for self-reflection, which can alter behavior and negative thinking patterns. These forms of expression can be done at home, while on a car ride, in a quiet place during a trip or even at a rock concert as you dance and sway to the beat of the music.

Like aromatherapy, music can help bring back positive memories and get our minds off pain. I believe music is the most accessible and productive art therapy for lowering pain levels.

These techniques may be strange to you, but remember to keep an open mind and realize that there is more you can do in between doctors’ appointments to make your days better and more purposeful.

Whether you choose any of these four treatment modalities or find another that is right for you, keep looking for those things in your life that you have control over and have access to. Find ways to make the most out of life despite the physical and mental pain you may be experiencing.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

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

An Epidemic of Undertreated Chronic Pain

By Roger Chriss, Columnist

The undertreatment of chronic pain is fast becoming another “epidemic” in America.  As the CDC guidelines, state laws and regulations, and federal agencies like the DEA push to reduce opioid prescribing, chronic pain patients are being forced to reduce dosages, change medications or make do without pain medication at all.

It may be difficult to believe that chronic pain is undertreated. After all, media reports on the so-called opioid epidemic make it seem like opioids are everywhere.

“Before launching into hysteria that the recent, small drops in opioid prescribing reflect a ‘war on pain patients,’ we should recognize that U.S. consumption dwarfs that of other developed countries,” Keith Humphreys, PhD, a professor of psychiatry at Stanford University, wrote in The Washington Post.

But the focus should not be on overall consumption. It should be on whether opioid medications for chronic pain actually work.  And they do, for many patients.

“Many patients currently receiving long-term opioids were started when opioids were still considered a viable treatment option and if satisfied with their pain control and using their medications appropriately should not be unilaterally compelled to wean off opioids,” Kurt Kroenke, MD, and co-author Andrea Cheville, MD, recently wrote in JAMA

But tragically, this is already happening. Painful conditions are increasingly undertreated.

Nursing 2017 notes that “many patients with sickle cell disease are undertreated and labeled as drug seekers due to their chronic pain.”

A 2016 article in Pain Research and Management found that “painful diabetic neuropathy is poorly assessed for and treated in primary care.”

Reuters Health recently reported that in a large study of 1.4 million nursing home residents, roughly two out of five had intermittent or chronic pain. “Among the residents with persistent pain, about 6 percent received no medication at all and another 32 percent didn’t get enough drugs to properly address their symptoms,” Reuters said.

Fox News reported on a nationwide survey that found 34 percent of physicians believe restricting opioid prescribing may actually be hurting people with chronic pain.

"If you open the discussion publicly, you see the carnage that is happening to people in pain because of these rules,” David Nagel, MD, a pain management specialist in New Hampshire told WMUR-TV.

Moreover, a recent survey of over 3,000 pain patients by PNN and iPain found that 23% reported they were no longer receiving opioid prescriptions and 47% were on a lower dose. Most significantly, 84% reported having more pain and a reduced quality of life.

Demonizing opioids can endanger lives. A Utah woman said her husband suffered from severe cancer pain, but was reluctant to take opioids because he didn’t want doctors “prescribing heroin” to him. He finally relented and started taking opioids when his pain became unbearable.

“My husband would have died from pain without opioids. The same doses that would kill a healthy person were life-saving for him,” Julieann Selden wrote in an op-ed in the Salt Lake Tribune. "The increasingly prevalent anti-opioid rhetoric in Utah, while helpful to some, damages others. The addiction concerns are justified but should be balanced with an emphasis on individualized medical care."

“Our state and federal representatives must consider the needs of the people who use opiates as prescribed when enacting laws or rules for doctors to follow,” Dennis Conklin wrote in a letter to the Chicago Tribune. “People who suffer from severe chronic pain must be allowed access to opiates in order to continue to maintain a reasonable quality of life.”

But this lifeline is under attack. Unnecessarily and inappropriately. Chronic pain patients have a low risk of developing a substance use disorder, yet federal and state opioid guidelines, along with close scrutiny of doctors by the DEA, are having a chilling effect. Widespread fear and confusion about the overdose epidemic and opioid medications are causing chronic pain conditions to be poorly treated.

Chronic pain patients rely on opioid medications to maintain a reasonable quality of life in the same way that people with epilepsy rely on anti-seizure medication or people with low thyroid function rely on thyroid replacement pills. So if they seem defensive about their medication — the “hysteria” that Dr. Humphries is so quick to dismiss — it’s only because they do not want to lose their last line of defense against pain.

The current backlash against opioids for pain management must end before we have another epidemic on our hands.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

Fighting to Survive Suicidal Thoughts

By Crystal Lindell, Columnist

(Author's note: A year ago today, on May 17, 2016, I almost killed myself. It was such a traumatic experience that I have marked the 17th of each month since then, and last night, I counted down the minutes until midnight as though I was counting down until my birthday. I had finally made it a year.

I wrote the following while I was in the darkest part of it — just days after everything happened. I never shared it publically, because I was worried about how it would be received, and I did not feel comfortable telling people about something I felt like I was still working so hard to overcome.

But take heart. I am still alive. And I have gotten lots of medical help since then, and lots of love from my family and friends. There are good days and bad days and very bad days, but they are my days because I am still here.

I hope my words will help you know that it is possible to fight the good fight against depression and anxiety, and that doing so does not mean you are weak — it means you a strong. For anyone currently battling mental health issues, you have all my love. Don’t kill yourself. We need you.)

How do you get over a broken heart?

More importantly, how do you get over a broken heart when you’re having a bad reaction to your new anti-anxiety medication, BuSpar (buspirone), and it’s causing the cruelest of all side effects — increased anxiety and suicidal ideation?

How are you supposed to endure that when you’re barely standing upright in the bathroom stall at work, as your swollen eyes cry for an hour straight, and then another hour after that?

When your suddenly weak wrists are bracing your hands against the blue walls in the stall, because if they weren’t, then your legs wouldn’t be able to hold you up?

I’m actually asking. I really want to know. How do you get over that?

If you’re wondering what medication-induced suicidal ideation feels like, I will tell you. It feels like you’re planning how to kill yourself, and your brain is spinning, and you hear this voice in your head screaming, JUST DO IT. LITERALLY NOBODY WILL EVEN CARE.

It feels like the blue dress you’re wearing is suffocating you, and you just want to take all the medication in your purse, and lock the stall and die.

It feels like the pain of being alive is actually worse than death. It feels like the pain will never cease. And it feels like the only real choice you have is to kill yourself.

It feels like the hours are seconds, and at the same time, every second is an eternity.

But still, deep inside, in your soul, you hear a whisper. A piece of your heart you forgot existed, trying as hard as it can to remind you of the light. You hear the faint, barely audible voice of a little piece of yourself trying to fight it. Trying, with all its strength to remind you that maybe, just maybe there’s a couple reasons you shouldn’t kill yourself.

It’s the voice that you spent your whole life nurturing in case of emergency. Specifically, this emergency. The voice you spent years building up so that when the world is exploding it can remind you where the fire extinguisher is. And you never really think you’ll need that voice. You never really think that your life will depend on that voice.

But suddenly, there you are, suffocating in a blue dress and expensive mascara is dripping down your face, and you’re doing the math on how many meds you have in your purse, and whether or not it will be enough to kill you. And out of the blue, you need that little voice to survive.

Maybe it’s God. Maybe it’s the years of love from everyone I’ve ever known. Maybe it’s the universe. Maybe it’s all three. 

It took me three days of waging war on screaming suicidal thoughts before I realized that all of this was likely a severe reaction to BuSpar, my anti-anxiety medication. I should have called my psychologist right away. And I should have gone to the ER.

But the suicidal thoughts were too loud, too overwhelming, and all the little voice in my soul could manage was continually convincing me to give it a couple minutes before I did anything too drastic. And then the minutes turned to hours, and the hours to days, and here I am, still alive.

I’m off the medication. My heart is still broken. And I’m not sure I can bear the weight of that blue dress ever again.

But I’m alive. Today, I am alive.

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 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.

Don’t Drown in Anxiety Over Healthcare Bill

By Barby Ingle, Columnist  

With everything going on with the American Health Care Act (AHCA), there is a lot of anxiety and stress over possible changes to our health coverage.

There were people who took to social media to start their protests before all of the facts were in. I have yet to read the actual bill and when I reached out to others who were commenting on it -- as if they read it and knew what was in it – well, they have not read it yet either.

So I kept looking and found an interview with House Speaker Paul Ryan, which talked about the biggest concern most of us have – pre-existing conditions. Before the Affordable Care Act (Obamacare) became law, people with pre-existing conditions paid several times more than others — if they could afford or be approved for a policy in the first place.

The latest version of the ACHA passed by the House would allow states to seek waivers from existing federal law and create “high risk pools” that would allow insurers to charge more for pre-existing conditions if someone lets their insurance lapse.

To help combat the increased premiums and out-of-pocket costs, GOP Reps. Fred Upton (MI) and Billy Long (MO) crafted a provision to provide $8 billion to states to help fund high risk pools or subsidy programs for people with pre-existing conditions. It would be left to each individual state to decide how to spend the money.

If you have a pre-existing condition, what can you do? First, contact your state legislators and make sure that your health conditions are covered under any pool or subsidy program. It is up to us to raise our voices, share our stories, and demand that our lawmakers remember us and our conditions as they move forward.

Luckily for us, there are many steps to go in this process and we don’t know what the outcome will be. The U.S. Senate still has to vote on the ACHA and is likely to make changes.  It is also important to note that the House version of the ACHA does not spell out what sort of pre-existing conditions insurers may cover if states seek a waiver. In the past, some insurers identified domestic violence, sexual assault, caesarean birth and postpartum depression as grounds for denying coverage or charging higher premiums.

Letting ourselves drown in hearsay, low expectations of the current administration, and sharing information that is not accurate to make a point is not going to fix or change anything. It will only cause us anxiety, stress and energy pennies that as chronically ill patients we don’t have the ability to recover from.

Is it time to act? YES. Is it time to over-react? NO. The water is rising, but it’s only up to our knees and we’re still standing. Before the tide comes in further, make sure you are doing what you can to be heard and in ways that will matter for our pain communities. VOTE, make phone calls, be willing to testify in person if needed, answer calls from the media to discuss how the ACHA will affect you if the conditions you are living with are not covered.

Don’t exaggerate or give false information about a list of pre-existing conditions that won’t be covered. Remember, each state will decide what pre-existing conditions will be included if they get the waiver granted. Instead, bring to light that our healthcare costs are already higher than healthy patients, because we have more doctor visits and treatments, and are paying more in out of pocket costs.

Our options are already limited and we need to have a seat at the table of decision makers. We can get that by being factual and accurate, and by voting for people who will remember our stories.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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

A Pained Life: Lost in Translation

By Carol Levy, Columnist

Whenever I go to a doctor with a pain related complaint, I am asked the question we all know: “On a scale of 1 to 10, how bad is it?”

I always preface my answer: “Only trigeminal neuralgia is a 10.”

Nevertheless, they persist: “Give me a number. Well, okay, if I have to, I guess a 6.”

What does that mean? To me, it means the pain is pretty bad. Compared to trigeminal neuralgia, nothing can ever reach a 10 (I pray). As such, a 6 is pretty bad.

But to them, a 6 is not all that bad. I get the equivalent of a pat on the head and “take some aspirin or Advil.” Luckily, I am pretty healthy and usually that works. The few times it hasn't, it took a number of appointments, in one case a number of years, before I got a diagnosis and referral to someone who could help me.

On a scale of 1 to 10, who decides what’s qualifies as a 1 or what is a 10?

Each doctor, nurse and practitioner has their own definition in mind. I have yet to hear one say, “Well, I consider stubbing your toe a 2, appendicitis a 6, breaking your leg a 9. Based on that rating, what is your pain level?”

Then at least we'd have some basis for comparison and would be speaking the same language.

Years ago I walked into a neurologist's exam room. The air conditioning was on. It was triggering my trigeminal neuralgia. “Could you turn that down? It is really setting off my pain,” I asked.

The doctor looked at me and practically snarled, “If it was really making your pain bad you would have turned it off yourself.”

No, I wouldn't. I was not raised that way. As a female, as a patient, and as a person who tries to be courteous. It was his office and his air conditioner. It was not my place to just walk over and change the settings.

What we have here is a failure to communicate. He did not ask me, “If it is causing so much pain, why didn't you just turn it off yourself?”

I did not reply to what felt like an attack on me and my truthfulness. And he wrote in his records, “I do not think her pain is as bad as she says.”

We often talk and write about issues of communication.

“Friends, coworkers, and family don't understand my pain.”

“The doctor won't give me the medication I need.”

“He ignores my complaints.”

Maybe the issue is not being ignored or misunderstood. Maybe it is simpler than that.

When I was in high school, we had a Brazilian foreign exchange student live with us. She spoke no English. I spoke no Portuguese. The two of us walked around with a Portuguese-English dictionary. I looked up the English words and spoke the Portuguese equivalent. She looked up the Portuguese words so she could speak to me in English. It was tedious, but it worked.

Before we can go forward with getting help and understanding, maybe we need to do the same. Find a dictionary so we are all on the same page.

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.

What You Need to Know About Chronic Pain

By Sarah Elizabeth Hirschle, Guest Columnist

This is a side of my life not many know about, except close friends and family.

This is me when traveling anywhere over an hour away. I can only sit in the car for up to an hour. I was traveling to my doctor's appointment several hours away. 

I share for awareness, not pity.

In the past three weeks, I have been able to leave the house twice a week at most. Some of those days were just short car rides to get some fresh air and sun. 

This is the sad reality of so many chronic pain patients. Much more awareness is needed, especially in the medical community. 

If you have a loved one that is suffering from pain, please listen. Talk to them, let them know you care. Even if you don't know what to do to help or hate seeing them that way. 

A few things to know about chronic illness and pain:

SARAH ELIZABETH HIRSCHLE

• The pain causes depression and depression causes pain.

• Pain is very isolating, making patients feel unlovable and alone, when in fact we need love and companionship the most at these times.

• True chronic pain patients who are on narcotics for pain do not get high from their meds.

When your body is under stress and in insurmountable amounts of pain, all you get from opioid medication is relief. There is a big difference between dependence and addiction.

We do what whatever is necessary to have some quality of life.

Please reach out if you know someone is suffering. You may save their life without knowing it.

Sarah Elizabeth Hirschle lives in Pennsylvania. Sarah contracted Lyme disease as an infant, which caused permanent organ damage. At age 20, her spinal cord was damaged during a botched epidural and she developed arachnoiditis.  Sarah also lives with Chronic Regional Pain Syndrome in her legs and feet.

Sarah helps run a Facebook support group called Arachnoiditis Everyday and moderates the Facebook page of the Arachnoiditis Society.

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.

Pain Poem: A Misery Too Great to Bear

"A Misery Too Great to Bear"

By Angelika Byczkowski

People in pain are dying,
a reluctant calculation,  
the only option left to escape
a misery too great to bear.

While we struggle with our pain,  
our government has decided   
to snatch relief from opioids  
away from us for our own good.  

They say one pill begins the end,  
addiction guaranteed.
We say we need a powerful shield
only opioids can provide.  

By policy now unarmed, defenseless,
we are stalked by pain through every moment.  
It hunts us down relentlessly,  
sinks fangs in deep and feasts.

It rips the flesh and breaks the bones,   
cracks the skull and snaps the spine,  
with license to do just as it pleases,  
impunity guaranteed by decree.  

We are sent out naked now  
to battle this rampaging pain  
with methods long disproven, yet  
"believe and it will be" they say.

Denied our armor, medication  
callously denied by guidelines,   
we teeter at the ragged gash  
where soul was ripped from body.  

How much pain and for how long  
can we be asked to bear,  
while experts coin their catchy phrases,  
call our pain "catastrophizing".

A catastrophe indeed is pain:
It traps us in the wreckage,  
wandering the sad remains    
of tortured flesh that cannot heal.

What we know is pain, we feel  
only pain, exploding pain,  
pain so bad it breaks our will
to live like this forever.  

Pain dominates, annihilates,
ruthless in its roaring rage, while  
helpless at the feet of the beast,
we lie sacrificed for overdoses not ours.

People in pain are dying,
a reluctant calculation,  
the only option left to escape
a misery too great to bear.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various four-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems). 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.