Pain Is Not That Simple

By Janice Reynolds, Guest Columnist

Let us stop talking about opioids for a moment and talk rather about pain. 

One of the unfortunate results of the phobia over opioids is that it has encouraged the belief that pain is a single and separate entity.  This way of thinking is being spread by the media, politicians and those who should know better, but don’t.  Pain is not that simple.

Pain affects the entire person and, when left untreated or undertreated, contributes to other health problems and can even lead to death. Acute and chronic pain can both exist in a cancer setting, as well as non-cancerous conditions.  The body does not know the difference.

What is different are the many different types and causes of acute and chronic pain.  There is also some crossover and intermingling.  Several different types of pain may exist at the same time, and acute pain can co-exist with chronic (notably as breakthrough pain).

It is usually easy to identify the source of acute pain, but there is no real evidence as to what “causes” chronic pain. We know there has been a change in neurons, which are no longer reporting a correct message to the brain. This poorly understood change is often permanent and not repairable.

People also respond differently to pain medications and therapies (what works for one may not work for another) and this is likely genetically linked. So a “study” which claims a certain medication doesn’t work for chronic pain or makes it worse has no basis in reality. There is no pain syndrome called “chronic pain.”

What is rarely talked about is the harmful effects of untreated pain. These effects are evidenced based, and can lead to increased suffering and fatal complications. Just with the cardiac system alone, pain can increase the heart rate, increase cardiac output, and contribute to heart attacks. Pain also affects the respiratory, musculoskeletal, endocrine, immune, gastrointestinal and nervous systems. Pain impairs wound healing.  

When left untreated or treated poorly, pain can also cause mental health problems, such as depression, suicide, insomnia, attention deficit, confusion, memory loss, and cognitive decline.  Many times these outcomes are blamed on medication, but pain is a much bigger impairment. Deaths are seldom evaluated to ascertain if pain was a contributing cause.

Stress has long been recognized as bad for your health.  It can worsen many illnesses and cause some as well.  We know that stress makes pain worse, but look at the amount of stress a person with pain faces almost every day in our society: losing access to a successful treatment, reading lies in the media, losing a provider, being treated like a criminal or drug addict, and so on.  This is not stress you can heal with exercise or meditation. It is relentless.

Pain may be an illness by itself, such as fibromyalgia, arthritis, headaches, interstitial cystitis, certain genetic conditions and more.  Pain accompanies many diseases or is part of their treatment: cancer, EDS, sickle cell anemia, lupus, post stroke pain, Parkinson’s, diabetes, alkalizing spondylitis, and so many more.

Pain could be a sudden onset of symptoms, such as kidney stones, gall bladder, disseminated shingles, or even an atypical heart attack. It may be the presenting symptom of other problems such as multiple myeloma, cancer metastases, ovarian cysts, torsion of the ovaries, testicles or intestines, and the list goes on. 

How many patients have died because the ER doctor hears the word “pain” and shuns them, refusing to see or treat them?  Or had a patient arrested because they refuse to leave?

Refusing to see someone in pain or denying them access to opioids or any treatment which works for them is malpractice. It certainly goes against the idea of “do no harm. ‘

The DEA has become a terrorist organization and many providers are afraid of it. “Evidence based practice” has also become a very loose term. The CDC opioid guidelines are not evidenced based.

Accusing only pain management doctors and patient advocacy groups of being influenced by the pharmaceutical industry is unethical as well, as the CDC, DEA and the addiction treatment industry also receive funding from pharma -- including support from drug testing companies.

Prescribing medication which is potentially more harmful than opioids, such as ibuprofen and acetaminophen, is also unscrupulous.  People with a history of ulcers and older adults are being told to take ibuprofen, even though ibuprofen causes 15,000 to 20,000 deaths a year when taken as prescribed. Ibuprofen was never meant for severe pain. 

People are being told they must do non-pharmacological interventions such as acupuncture, massage or physical therapy, even though they can’t afford it, it’s not covered by their insurance, or the therapy simply does not work for them.  Doctors insisting on an epidural steroid injection (which is not FDA approved) when it has not worked for someone in the past is also immoral.

There is a strong body of evidence that opioids work, no matter what an opiophobic or addiction treatment doctor will claim.

We have long fought against cook book medicine.  People with pain, whether acute or chronic, need to be considered in the whole, protected from harm, and treated with what is effective and affordable for them.  It is the ethical thing to do.    

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. 

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 Hand of a Stranger

By Carol Levy, Columnist

I went to the Women’s March on Philadelphia Saturday. I am very politically minded.  I love doing these things. And each and every time, I have the same problem

I forget about the pain. I forget about the specifics, logistics and potential for pain.

I have trigeminal neuralgia, which causes severe pain on the left side of my face. It can be set off just by touch. I am also legally blind on that side.

It puts me in a precarious position. It is essential that I not let anyone get close enough to accidentally brush against my face. For me, the innocuous sign of an outstretched hand or arm is dangerous. And since I can't see on that side, I have no idea how close someone might be to touching and triggering the pain.

I did not expect the size of the crowd, which was estimated at 50,000 people. Small rallies are bad enough, but this one was so enormous that as soon as I left the train station and went towards the designated rally area, I was engulfed in a sea of people.

And I was petrified. Thousands of people were bearing in on me.

I tried to make my way through the mass of people. Everyone was very nice. “Excuse me. Excuse me,” I said.  Some moved, but some could not with the press of so many bodies.

image courtesy of philadelphia mayor's office

One woman smiled as I explained to her I was trying to reach the borders of the rally, so I would not be in the midst of so many people. For this kind of event it was an odd thing to say. She looked at me quizzically. I figured I had better explain.

I have learned to be hesitant about explaining my condition. My family has been nasty about the pain. Strangers, even friends and acquaintances, can and have been unpleasant about it. As way too many of us know firsthand.

This was a “'talk with the stranger in the next seat” moment. I would never see her again, so there was no risk in explaining and no worry if she didn't understand or could not care less. Plus, my need outweighed my concerns about how she might react.

Her reaction was unexpected. She put her arm around me and held out her hand. Taking mine in hers, she led us through a bastion of folks. When we got to an area less crowded, she let go and I continued on.

What a wonderful experience and for so many reasons, not the least of which was I said what I needed and I was heard.

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.

Do Addicts Need Safe Havens to Shoot Up?

By Barby Ingle, Columnist

Lately I have been having more trouble sleeping than usual. At 3 am one night while lying in bed, my mind wandered to the more than 50 personal friends I have lost to suicide, medical complications, delays in treatment, and other health issues since 2012.

By 4 am I was watching the news. I had turned on the TV because my husband moved into a position that activated his “snore button” and I wasn’t going to be able to fall back asleep with that noise.

Then a news promo came across the screen. Next up, the announcer said, we will be discussing a proposal in San Francisco to provide addicts with a supervised facility to shoot heroin and other illegal drugs. Clean needles would be provided at no cost.

They think this will reduce the chances of an overdose death. Similar proposals have been made in other cities, like New York, Seattle and Baltimore.

I couldn’t believe what I was hearing.

I hit rewind and played it again. It really was happening! With the flood of thoughts that came to me, I knew I would never get to sleep and started thinking about the implications if this type of clinic was allowed.

How many ways would it affect our society? What message is it sending? Do I want my tax dollars to go to this type of clinic? Shooting heroin is illegal and there are people who support this?

The CDC put opioid guidelines in place last year for medications that are legal, prescribed and monitored. The guidelines caused many physicians to cut off or lower opioid doses -- even though it was not what some doctors felt was best for their patients. This has led to more suicidal thoughts, attempts, and actual deaths in the pain community.

I know one lady who was unable to get her opioid prescription filled for months. When they finally filled it, she used all the medication at one time to try and kill herself. Why? She didn’t want to face not being able to get the medication again and to go through the withdrawal pain of being without it.

She didn’t die. She was found and placed in a coma in intensive care. When the woman awoke days later, she was angry that her life had been saved.  

We are cutting off pain patients from medication that is legal because abusers may overdose and die. Yet there are plans to give drug abusers who are choosing to behave illegally a safe-haven, while denying legitimate patients access to the care their providers deem necessary.

We already have naloxone and similar medications available for people who overdose. Due to the great lobbying efforts of the “stop the abuse” team, naloxone is now available without prescription in 33 states. So basically it’s wrong to prescribe opioids, but if you choose to abuse them, we want to provide a place for you to use them safely. I am flabbergasted.

Can the legit pain patient show up and get opioids at these clinics as well?

I know if I was a heroin addict where I would be living. I would have my butt planted in a safe-haven drug facility so I could never have to go through withdrawal, be monitored so I don’t overdose, not have to pay for the care, and live the life I want.

That sounds much better than the life of the chronic pain patient, who comes in monthly at their own expense to get a prescription refilled. They are often drug tested, and if anything suspicious is found in their system, they are often taken off opioids and abandoned by their doctors.

Let’s circle back with this argument. Currently, legit pain patients are getting cut off from legally prescribed medications that help them be more productive and live better lives. This leads to withdrawal, which can cause death, and an increase in suicidal thoughts and actions. Some start looking for illegal means to help alleviate their pain.

Are we going to at least provide them with Suboxone, naloxone or methadone to help them come off the opioids more humanely?

We are helping drug abusers find new ways to keep abusing, while chronic pain patients are being ignored and discounted.

Let us not forsake one group for another. We need to find ways that address both pain and addiction concurrently, that don’t affect either side negatively or take away the rights of one group to give more rights to another. Let’s lower suicide statistics for those in chronic pain and overdose statistics for those who are abusing. It can be done. Silly proposals to provide safe-haven drug facilities for illegal drug use are wrong.

I am so looking forward to hearing everyone’s opinion in the comment section. Maybe there is something I am missing as to why anyone would think this is a good idea?

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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

How to Cope With Fibromyalgia Fog

By Lana Barhum, Columnist

My day job in the legal field can be pretty demanding, involving numerous phone calls, emails, deadlines, and other verbal and written communications. Some days, fibromyalgia fog makes my job a whole lot harder. 

Whether it is memory issues, trying to find the right words, misplacing things, or transcribing phone numbers correctly, fibro fog can affect the quality of my work.

It also affects my personal life, sometimes leaving me forgetful, confused, flustered carrying on conversations, and even lost trying get to destinations often traveled.

Fibro fog is the term used to describe the cognitive difficulties associated with fibromyalgia. According to a 2015 review in Rheumatology International, some fibromyalgia patients reported that fibro fog is even more difficult to manage than their pain and fatigue.

At least half fibromyalgia patients “experience distressing subjective cognitive impairment,” according to a 2015 report in Arthritis Care and Research.  

Fibro fog can cause short term memory loss, distraction, forgetfulness, difficulty in carrying on conversations, inability to process new information and occasional disorientation.  In most cases, fibro fog is a mild symptom, but for some people it can be quite scary, especially for those used to functioning at very high levels.

Fibro fog can leave me temporally disorientated and unable connect my thoughts. My thoughts come in, but they are not being processed correctly, or in a way I can properly put into words. And that can be stressful and frightening.

Causes of Fibro Fog

The reasons for fibro fog are not well understood.  But doctors speculate fibro fog is a result of fibromyalgia patients' inability to get restorative sleep.

"Therefore they're chronically fatigued," says Corey Walker, MD, a rheumatologist at the Intermountain Health Care System in Logan, Utah. "Their minds aren't rested." 

Non-restorative sleep is the number one sleep issue among fibromyalgia patients. Even after getting a full night's sleep, you may still wake up feeling exhausted, or as if you have not slept at all. Up to 90% of fibromyalgia patients experience non-restorative sleep, according to a 2016 report in the Journal of Pain and Relief by researchers at Luigi Sacco University Hospital in Milan, Italy. These sleep problems can contribute to pain, daytime fatigue, and fibro fog.

"A large percentage of FM patients report sleep disturbance, including difficulties in falling or staying asleep, early morning awakenings and non-restorative sleep," says Maurizio Rizzi, MD, and colleagues. The researchers conclude managing sleep disorders could actually reduce fibromyalgia symptoms, including fibro fog.

Other theories blame pain levels for fibromyalgia fog. When people experience fibromyalgia pain, the belief is that some parts of their brains do not receive enough oxygen, causing confusion and disorientation. Pain also stimulates areas of the brain involved in cognitive tasks. Quite simply, it is just hard to concentrate when you are in pain.

Overexertion, extreme fatigue, stress and side effects of fibromyalgia medications are also blamed for fibro fog.  My fibro fog is worst when I am exhausted, and as a single parent, I have been known to push myself to the point of cloudiness. Overstimulation, such as background noise and fluorescent lights, is also a fibro fog trigger, along with not getting a good night's sleep.  All of these things can make it harder to focus on the things I need to do.

Coping With Fibro Fog

While there are no specific treatments for fibro fog, you can alleviate fibro fog by following your doctor's treatment plan. Your doctor may also prescribe medications to manage specific symptoms.  For example, he or she may prescribe a sleep aid to help improve sleep, and if sleep quality is better, you’ll feel more alert and focused. 

Here are some other strategies for coping with fibro fog.

Get Quality Sleep. Because lack of sleep is a big reason for fibro fog, improving sleep habits may provide relief. For example, try going to bed at the same time every night and get up in the morning at the same time every day. 

Stay Active. Even though you struggle with pain, you should still keep moving. Low impact activities, such as walking, are easy to do. Try to stay active throughout the day by sitting less, taking stairs more often, and parking further away.

Maintain a healthy diet. Cognitive functions do improve when you eat real food. This includes fruits and vegetables, whole grains, lean meat, and low-fat dairy.

Avoid caffeine. Most people think caffeine helps with alertness and awareness. But, caffeine makes symptoms worse for fibromyalgia patients, and contributes to sleep issues. Moreover, it is a stimulant that gives you energy and forces you to crash once it wears off.

Stop stressing. Stress triggers and worsens fibro fog.  Do your best to avoid stressful situations. Try relaxation breathing when you are feeling overwhelmed.

Keep a calendar. A calendar is a lifesaver when you can't think straight.  Keep track of appointments and events on a paper calendar or computer program.  Set timers and alarms as appointment reminders.

Have routines. Having routines for simple tasks helps, too.  For example, you may want to keep your purse, coat, and keys in the same place, so you are less likely to be searching when you need them and fibro fog is making it difficult to think straight.

Don’t Take Life So Seriously

Like most other fibromyalgia symptoms, there is no magic, one-size-fits-all solution to combat fibro fog. It usually requires a combination of strategies and habits to reduce cognitive issues. You will need to try and practice coping strategies until you find what works for you.

Remember to be kind to yourself when you struggle with mental unclarity.  Slow down if you are feeling frustrated and regain focus.  Lastly and most importantly, stop pushing yourself to adjust and just take care of yourself.

I have learned to not take life so seriously and to have a tongue-in-cheek attitude about my cognitive struggles. There are plenty of foggy -- yet funny – moments, like when I put my keys in the fridge and the milk in the cabinet.  I can either get depressed or laugh at these silly mishaps.  Taking yourself lightly will give you an emotional boost and put a smile on your face, and there are plenty of good health benefits when you are happier.

Lana Barhum 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.

Wear, Tear & Care: The Edge Desk

By Jennifer Kilgore, Columnist

Let’s talk about how much I hate sitting.

I have two neck fusions, a permanently messed-up thoracic spine, and bulging discs in the lumbar spine. All of these combined make it very difficult for me to sit for long periods of time. This was a large part of why I had to leave the traditional working world and work from home.

I am always looking for improvements to my physical work setup. I already have a kneeling chair that I’d used in my old office, and even that -- my best option -- is something I can only do for a limited period of time before my back flares.

It seemed that coupling a kneeling chair with a normal desk was sometimes an odd combination because the height difference could mean bending my wrists to type (bad) or adjusting my neck (also bad). For some reason, I couldn’t figure out the right height to put the kneeling chair to correlate with my computer monitor.

So the question became, is there a desk that’s made specifically to work with kneeling chairs?

Why yes! There is!

I backed the Edge Desk on Kickstarter in March 2016. Every square inch of my house is occupied by something and I have no extra space. I bought this desk without caring about that.

As of now the desk is sitting in the middle of my office, where it’s blocking the printer and two bookcases (it’s not a big office).

This thing came fully assembled in a huge box in the middle of December. Now I’ve had enough time to use it and gather my thoughts.

courtesy: edge desk

Thoughts on the Edge Desk

●       It’s ergonomic

There’s something about kneeling that makes you sit up straight. It’s not an uncomfortable sort of straight, though -- a lot of the pressure is taken by your shins and thighs. Most importantly, it doesn’t bother your shins or knees, or at least it shouldn’t. This ensures proper alignment of the spine. I actually also felt like it kept me alert and more awake at my desk in a way that normal chairs do not.

●       It’s compact and light

I am not a strong person. Let’s get this out of the way right now. I am basically an anthropomorphic noodle. However, I can manipulate this desk myself if I try. It’s still something I’d ask my husband to carry for me, were that option to arise -- it’s 25 lbs., though it folds down to an impressive 6 inches and can fit underneath a twin bed for storage. So, once I decide to move it from its current position in the middle of my office, it won’t take up too much room. 

●       Angle of the easel

The really cool thing about this desk is the connected tabletop. It can be flat, or it can tilt at an angle, like an artist’s easel. It can also tilt at a very sharp degree, like an architect’s table.

Most of my work is done on a computer, which this desk can still accommodate, but as some of my spine damage affects my hands, I’ve been trying to think of interesting new activities to work on my manual dexterity. I’ve tried knitting, and now I’m experimenting with calligraphy. This new desk is great for that purpose.

I’m perfectly okay with letting this desk float around my house until we can find a proper place for it. It’s very portable, so at least it won’t be difficult to move around!

courtesy: edge desk

All in all, I quite like the Edge Desk. It’s very good for people who require an ergonomic setup that is gentle on the spine, yet it’s sturdy enough to travel to an office if needed. And it’s a talking piece, because who else has anything like it?

You can purchase the Edge Desk for $350 through the company’s website.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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.

Will End of Obamacare Hurt the Chronically Sick?

By Barby Ingle, Columnist

When a pebble is thrown into a pond, it creates a ripple effect that is noticeable, but no long-term damage occurs.

But if an asteroid were to land in the ocean, it could be catastrophic to all life on earth. We are simply not prepared for such a disaster.

The chronic pain community was hit by an asteroid of sorts last year with the release of the CDC’s opioid prescribing guidelines. The tsunamis are still hitting patients in its aftermath. To make any change to the healthcare system without having something to replace it is never a good idea.

Now we are anxiously waiting for details on what President-Elect Donald Trump and the Republican-led Congress will offer to replace Obamacare.

Although things won’t change overnight, the early signs are that “Trumpcare” could affect the already limited healthcare that the poor, elderly and chronically ill receive.

Some of you who are not chronically ill may feel like I am saying the sky is falling. But many of us are already unable to afford proper and timely treatment with the coverage we have now, because the system is set up to give priority to acute care, not chronic care.

Republican lawmakers can’t wait until Obamacare is repealed and replaced. But they need to take the time to develop a system that is effective for patients, providers, educational institutions, insurance companies, pharmaceutical companies and government agencies. Patients and providers are far too often left out of the discussion about treating the chronically ill and appropriate compensation for those providing their care.

In the first few days of 2017, GOP leaders such as House Speaker Paul Ryan and Health and Human Services Secretary-nominee Dr. Tom Price announced that they will target the Medicare system with major restructuring. They have not yet offered any details on their plans, but say they will lower healthcare costs for taxpayers. 

Medicare is an east target. With the number of elderly increasing as baby boomers move into retirement age, it’s inevitable that health care costs are going to increase. In 2015, Medicare spending grew 4.5% to $646 billion, and Medicaid grew twice as fast, by 9.7% to $545 billion.

"Value-Based" Medicine

Based on their recent announcement, congressional leaders are likely to try to convert Medicaid from an entitlement program for low-income, elderly and disabled Americans to one that is “value based” with fixed federal contributions to the states. They have not yet offered details on how those payments would be calculated or whether they would keep pace with inflation. 

Measuring a providers’ pay using a value based system is not going to work with chronic illness. There is not enough incentive in the current system that gives providers the compensation they need. We have already seen many providers across the country choose to stop treating people with chronic pain diseases. 

Every patient is also different. There is no one-size-fits-all cure for any disease. Two people can be given the same medication for cancer, and while it may work for one patient, the other one may have to try other treatments. This is the same for every single chronic disease. 

A person who breaks a bone can go to the emergency room, get the bone set, and wear a cast while it heals. They don’t have to think about how they are going to keep living with an incurable disease and the roadblocks they have to face in getting treatment.

Now we have people who don’t understand the complexity of treatment for chronic care patients deciding what additional roadblocks they can put up to keep costs down. 

Can we start by paying Congress with a value based system, like they want to do with our providers? Can we punish lawmakers with fines for needing extra hearings to get a bill passed or blocked? I don’t think so. Yet the current leadership wants states to provide better healthcare at a lower cost by giving them greater flexibility in setting eligibility and benefits. I see it as taking away even more of the limited coverage we currently have. 

Without federal guidelines, states will push poor people out of programs, eliminate important benefits, and cut already-low payment rates to providers to save money.

I remember a time in Arizona when poor men and women qualified for state assistance for health and food. Now, you must have children to qualify for many of our assistance programs. 

Every state is different in what its Medicaid program covers and the eligibility requirement. Giving additional incentives states to “cut costs” instead of putting the focus on patient care is a big mistake and will cost society more in the long run. 

It reminds me of something I have seen in the insurance industry. Insurers want to lower emergency room costs, so they put payment practices in place to discourage chronic care patients from seeking the care they need. 

I have personally been in the position of not wanting to go to the ER because I knew they wouldn’t do anything to help me. As soon as the attending doctor sees my complicated medical history, they don’t want to treat me for the acute issue that I am having due to the extra precautions they need to take due to my chronic disease. They spend more time trying to find another hospital to transfer me to than they spend working on me! 

This past September, I had two hospital doctors fight in front of me because one didn’t want to be my attending provider. I am a complicated case, and he knew he was not going to be compensated properly for taking care of me. The outcome was leaving me in the emergency room for over 12 hours before getting me a room. This gave him enough time to pressure me to check myself out and head to another hospital, which was suggested more than once. 

The emergency room provider knew I needed to be in the hospital, so she loudly spoke up to keep me there and worked hard to help me as best she could. The delays in getting me treatment only wound up increasing the insurance bill.

New congressional proposals would phase out enhanced federal payments to the states to cover low-income adults. States need to save money as well, so what will they do to offset these costs? They will either raise taxes or cut what is covered to those in need. Long-term care coverage items seem to get cut first, as they are the most costly. 

President-elect Trump campaigned on not touching Medicare and promised to make sure everyone has access to healthcare. But we don’t know whether he will go along with the healthcare agendas of top congressional leaders. We do know that the Trump administration is receptive to the states' Medicaid waiver proposals. This would impose more patient-responsibility requirements. Chronic care patients already have trouble paying insurance premiums, sustaining employment, and dealing with illnesses that last a lifetime. Putting time limits on benefits for a chronically ill person is ridiculous.

Congressional leaders are now saying they are working to turn Medicare into a program that would pay private plans and the traditional fee-for-service program a fixed amount per beneficiary by 2024. If traditional Medicare competes with private plans on equal terms, there will be a loss in coverage of long-term care needs for the chronically ill. 

We are not equal to a healthy working individual and our coverage needs are critically different. It is also important to remember those who are disabled and qualify for Medicare have earned it by paying into the system when they could work. Demanding someone to be engaged in meaningful work to receive Medicare benefits when they are disabled is ridiculous.  

Let’s not wait to move until the asteroid hits. Let us unite and voice our needs so we are not overlooked as these new policies are developed. Let’s demand that our congressional leaders give chronically ill patients a seat at the table, and take the time to create a health system that is right for all Americans. Don’t let them forsake the chronically ill to save money. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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

Finding the Right Doctor to Treat Fibromyalgia

By Lana Barhum, Columnist

Numerous studies show patients have better health outcomes when they have a doctor they trust and who listens to their health concerns.  Further, patients who trust their doctor are more likely listen to their advice and be compliant with treatment.

According to a 2014 breakdown of 13 clinical studies, a good doctor-patient relationship can have significant effects on positive health outcomes. The research, published in the PLOS One online journal, looked at studies where doctors were randomly assigned to either practice their normal care methods or take additional training to provide more empathy and patient focused care. The health benefits of patient focused care showed measurable results towards better patient outcomes. 

"The patient-clinician relationship has a small, but statistically significant effect on healthcare outcomes,” the researchers found.  

If you think you might have fibromyalgia, you will need to work closely with your doctor to diagnose and treat it.  You want a doctor who is knowledgeable about fibromyalgia and treatment options, including medicinal and non-medicinal therapies. 

In addition, your doctor should be someone you can confide in when you have concerns about treatments, symptoms, pain and lifestyle.

What Doctors Treat Fibromyalgia?

The American College of Rheumatology’s (ACR) updated fibromyalgia diagnostic criteria has made it easier for medical professionals to learn about the diagnosis and management of fibromyalgia. Still, not every doctor understands fibromyalgia, so it is important to find one who is up-to-date on the latest treatment and research. 

The following doctors can treat fibromyalgia:

Rheumatologists. Rheumatologists treat arthritis and other diseases of the bones, joints and muscles. This includes fibromyalgia, osteoarthritis and autoimmune arthritis, such as rheumatoid arthritis and lupus. 

Neurologists. A neurologist diagnoses and treats patients with nervous system disorders. Researchers have long speculated fibromyalgia is the result of a pain processing disorder, which causes amplified pain that shoots through the bodies of sufferers. 

"Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition," said Daniel Clauw, MD, a professor of anesthesiology at the University of Michigan.

Neurologists might be in the best position to treat fibromyalgia, as they are able to narrow down pain and symptoms and treat them more specifically. 

Pain Specialists.  Pain specialists are experts in diagnosis and treatment of chronic pain.  They offer a variety of treatments that include both medical and psychological therapies.  They generally work in private pain management clinics or as part of pain treatment centers in hospitals and university medical centers.

Family Practice Doctors and Internists. Traditionally, fibromyalgia fell under the scope of rheumatologists. These days, however, family practice doctors and general internists are seeing more patients with fibromyalgia.

Finding the Right Doctor

Here are a few tips to find the right doctor to treat your fibromyalgia:

Support Groups. Local fibromyalgia or arthritis support groups are great places for referrals to someone who treats fibromyalgia. 

Don’t limit yourself to rheumatologists.  While the ACR's rheumatologist search is a great resource, there is no reason to limit yourself.  Rheumatologists generally have demanding patient loads and it could take months to get in for an appointment. 

Check with pain clinics. Pain clinics may treat fibromyalgia patients separately from pain management.  They also provide referrals to fibromyalgia specialists.

Call your insurance company. Your insurance company may have a list of health care providers   covered by your policy that will also include doctors who treat fibromyalgia.

Your family practice doctor. Your family doctor likely knows someone who specializes in fibromyalgia treatment. He or she may also be qualified to treat you.

Ask around. Someone you trust, such as a loved one or co-worker, may know a fibromyalgia doctor.  You may also find someone else who is living with fibromyalgia.

Hospital websites. Hospital websites offer directories of medical providers on their websites.  They share doctor resumes and expertise, which may include experience in treating fibromyalgia.

My Experience Finding the Right Doctor

Because fibromyalgia is still controversial in the medical community, finding an informed doctor can help you to get the best control of your situation, the medical help you need, and relief for pain and symptoms. 

My current treating doctor -- a rheumatologist -- understands that our doctor-patient relationship is a partnership.  She respects my time, never makes me feel rushed and answers my questions.  Moreover, she is knowledgeable about my diagnosis, treatment plan and lifestyle, and doesn’t rely on my chart for answers.   But I didn’t always have a doctor I trusted, who listened and addressed my concerns.

In 2009, I didn’t know what a successful doctor-patient relationship looked like. I had a doctor who dismissed my worries, felt fibromyalgia could only be treated with diet, exercise, and anxiety medications, and did not want to hear how fibromyalgia affected my life as a young mother in my early 30s.  After that first miserable year with fibromyalgia, I came to the conclusion that if I wanted a healthy and thriving life, I would first have to find the right person to treat me.

Experience has taught me the relationship I have with my fibromyalgia doctor is the main determinant of how successful my treatments will be.   That first fibromyalgia doctor told me I'd be disabled within four years, but it has been over eight years and I am not disabled and still able to work and care for my family.  I know this couldn’t be possible if I continued to see that doctor. 

Finding a doctor who understands fibromyalgia may take time, but don’t get discouraged. Look for a doctor who is knowledgeable about fibromyalgia, believes in team work, is empathetic and who listens. 

And if you find yourself with one that isn't a good fit, as I did, it is okay to look for someone else. But keep the current one until you find someone new.

Lana Barhum 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.

A Pained Life: Keep it Simple

By Carol Levy, Columnist

Simple always seems… so simple to me, especially if it’s medical-related and even more so when it involves pain.

When I was 23, I developed a terrible pain in my left arm. And oddly, whenever I turned my head, the pulse in that arm disappeared. 

My journey was typical. I had trouble getting a diagnosis and was told it was psychological. The doctors were not thinking it through. How can someone psychologically obliterate a pulse? 

Finally, I was diagnosed with thoracic outlet syndrome (TOS). My symptoms were text book.

At the time, I was a physician assistant student and one doctor had lectured on TOS. Knowing I had it and without asking me, he directed students to have me turn my head and feel the pulse disappear.

Finally a thoracic surgeon told me, “I'll operate and remove your first rib. That should help.”

It sure did. I woke up from anesthesia and the pain was gone, and my pulse no longer disappearing.

A physical therapist also suggested an exercise: “Run your fingers up and down the wall a few times every day.” She never explained why.

“This is so silly,” I said to myself. After all, I was 23. I knew everything. What good can something this simple do? Just silliness. So I didn’t do it.

And I have had problems with my shoulder ever since. For over 40 years. All because simple seemed... too simple.

One more example. This time easy as pie escaped the doctors, except for one. 

Facial paralysis from trigeminal neuralgia sometimes causes my left eye to not close completely. As a result, my eye sometimes dries out to the point where it needs to be sewn closed. I abhor this, but I have had it done a number of times through the years. In truth, they wanted it to be done permanently 30 years ago. But they respected my choice not to.

On one occasion, three doctors agreed the eyelid had to be closed. Even the one who usually held out came on board. A fourth doctor was relatively new -- new enough to think outside the box -- and realized there might be another solution. 

Every night I taped the eye shut, using tissue paper and tape on both sides of the eye patch.

“Before we close it, let’s try this,” she said. “I want you to add one more piece of tape, directly down the middle.”

Seemed silly. You know, too simple. But I tried it anyway. And voila! The eye cleared within a day.

Between me and the doctors, simple often seems too silly, too unsophisticated, and unscientific. We are so accustomed to the harder answers: more drugs, more treatments, and more surgeries.

I regret greatly that the easy answer for my arm seemed so preposterous at the time that I refused to even try it. But I am so grateful that Dr. Smith saw the simple and made the suggestion anyway.

We get accustomed to high tech solutions, higher level treatments, stronger doses and more difficult surgeries.

I realized my journey is akin to going up a ladder. It is tempting to skip the first or even the second step on the ladder, forgetting or ignoring your pain. But each step carries more risk, and climbing the ladder becomes more difficult and dangerous the higher you go. 

Sometimes simple is exactly what we need.

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.

Relieving Pain Should Be a Pro-Life Issue

By Anne Fuqua, Guest Columnist

There’s an article in the Boston Globe this week about doctors who stopped prescribing opioid pain medication, even when they knew it might be harmful to patients.

As a registered nurse, I never expected to be on the other side of this issue.  But primary generalized dystonia and surgical complications inducted me into the “chronic pain club” 17 years ago.

As a patient in Alabama, I can attest to the fact that there is an overwhelming atmosphere of fear among physicians about prescribing opioids.

In 2012, seven Alabama doctors were investigated for over-prescribing.  Two years later that number sky-rocketed to 44 investigations.  The very few doctors that still prescribe are now distrustful of their most reliable, long-term patients. 

When my own well-respected doctor of nine years left pain management out of fear for his license, I had my medical records sent to almost 60 different physicians in the state. 

None of them were willing to treat me.

This was the most difficult and physically painful time of my life.  In just a few weeks’ time, I went from driving and being thrilled to start a part-time job as an “Obamacare Navigator” to being barely able care for myself independently.  I had no quality of life whatsoever.  Over a year later, I still have lasting physical effects from the wear and tear of severe spasms on my body. 

Beyond simple pain relief, opioid medication has always exerted a direct effect on my dystonia and makes a huge difference.  It’s far more than the benefit I received from any of the medications typically prescribed for dystonia (and without their side effects).  I’m so grateful to have the life I have today, even if I don’t live in the same body I did before I was forced to taper my medications.

Of the nearly 60 doctors I contacted 18 months ago, not a single one is still treating chronic pain patients. Those that didn’t stop out of fear for their licenses have been investigated by the state medical board or raided by law enforcement. 

We have entered an era where politicians, bureaucrats and licensing board members are now practicing unlicensed medicine by dictating the care that healthcare professionals should provide. 

Forcing patients with chronic pain to suffer because some people abuse opioids is no different than jailing someone just because you think they might commit a crime someday. This type of government over-reach directly contradicts the principles on which our nation was founded

We need more emphasis on determining who is at risk of developing addiction and the ability to provide a necessary structure for their safe use of medication.  Treatment should be available without stigma for those who need it. 

The same grace of withholding stigma that we provide to addicts should also be given to chronic pain patients.  Responsible patients have done nothing to deserve the horrible stigma they often face because they require opioids for a decent quality of life. 

Life without quality isn’t living at all.  There is no more of a “pro-life” issue than controlling pain and providing quality of life.  If you are pro-life and don’t support physician-assisted death, then you need to support physician-assisted quality of life. And that means pain management that utilizes opioids when necessary. 

This isn’t a special interest issue.  It’s everyone’s business. If you haven’t been affected or known someone who has, you will.  As a society, it’s our moral imperative to care for the least among us.  Relieving pain is the least we can do – and when life expectancy is limited, it’s the most we can do.

Anne Fuqua has primary generalized dystonia.  She is a former registered nurse and does volunteer work with at-risk youth and in animal rescue.  Anne is very involved with patient advocacy efforts, pushing for access to all forms of therapy, including opioids.

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 Pain Poem: Do You Ever Wonder Why?

"Why"

By Angelika Byczkowski

People sometimes ask:

Do I ever wonder why?
 

When I was still invincible,

my shining star still on the rise,

my future still unscathed and bright,

anything seemed possible.

 

Anything but this.

A cosmic roll of the genetic dice

comes into play and shows its face:

I'll be living in pain the rest of my days. 

 

Do I ever wonder why?


They ask this, not I.

For me, such questions don't apply.

 

I've accepted and adapted,

adjusted to a life with pain,

asking nothing of the future,

giving up my yesterdays.

I've been changed and the world is changed,

my altered view sees everything new.
 

Perhaps there'd been a danger

of complacency, a lazy habit

of ease unearned, a passiveness,

a willingness to go along.
 

Perhaps life was becoming stale,

perilously smooth and tame,

hazardously even-keeled,

and dangerously boring.
 

Perhaps my life would have remained

inadequate, unchallenged,

never having fully grown

to its frightening potential.
 

Why did this fate befall me?

 

Well, it did and that is that.

And when I stopped resisting,

allowed the change,

it changed me.


Why not?

 

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) with us.  Send them to:  editor@PainNewsNetwork.org

The Magic Combination for Pain Relief

Barby Ingle, Columnist

There is no cure for most chronic pain disease, but progress is being made in finding the underlying process that causes it. If we can understand that process, then options to cure chronic pain may come about more rapidly.

The earlier we catch and properly treat what is causing the pain, the better the chances for controlling the pain or putting it into remission. If the symptoms progress and are incorrectly treated or not treated at all, then issues become more complex and invasive.

It is important to learn about the types of treatments available to you, either through insurance coverage or cash pay. Treatment options include physical therapy, medication, orthopedic surgery, invasive surgery, non-invasive procedures, naprapathy, stem cell therapy, infusion therapy, and literally hundreds of other options.

Patients should look for ways to control and minimize their pain and discomfort to the greatest extent possible. Coping skills will develop out of necessity. However, sometimes we need to speak to someone outside of our circle for a different view. Psychological counseling may become necessary. It is okay to ask for help when needed.  

Goal creation and treatment plans should also include drug management, family/social adjustment, improvement of the patient's quality of life and psychosocial functioning, and increasing mobilization or range of motion through physical therapy.  

Many chronic pain patients consider these milestones for a successful treatment plan:

  • Ability to achieve a full night’s sleep repeatedly
  • Ability to perform physical therapy with improved muscle strength
  • Decreased need for opioids
  • Diminished depression
  • Diminished swelling
  • Improved thinking
  • Increased stamina
  • Lowered pain levels

It is important to treat the underlying symptoms, even if it means turning to surgical intervention in some cases. Depending on how well you respond to the various options, a progression of treatments may be used by your providers and yourself as an engaged and empowered patient. Setting goals and a timetable that is reasonable can be done with your providers.  But remember, you as the patient need to play an important and vocal role in creating the plan.

Treating your chronic pain begins with patient awareness. On my good days, I try a few new activities and increase the amount of physical activity, as I am able. By doing this, I have seen an increase in my body functioning, range of motion, muscle strength, improved balance and posture. I’ve also found that if an activity just takes the edge off my pain, it helps restore cognitive and physical function.

When my pain increases, I find myself slouching more. Becoming aware of yourself and your environment increases your chances of successful treatment and a better quality of life. Get involved in movement training. This can include walking for two minutes at a time or, if you’re ambitious, a mile.

Do what you can do at your level. It will be different for all of us. Moving will improve your health, the function of your body, and also helps with constipation and gastrointestinal issues. Movement increases your blood circulation, which helps with atrophy and can decrease hypersensitivity.

When most people think of physical therapy they think of machines, weights and treadmills. However, I’ve learned that there are many types of physical therapies that are more in line with what we can handle. They include biofeedback, hot compresses, elevation, massage, range of motion exercises, and hydrotherapy.

There is some thought that physical therapy is painful and does not help. But if you find the right combination of medication, counseling and physical therapy, you’ll have a better chance for pain relief and staying on track with your treatment plan. Again, it comes back to surrounding yourself with a team of doctors, caretakers, friends and family supporters that have the willingness and education to support you.

The good news is that no matter how long you have had chronic pain, you can be helped in some way -- if you stay active, avoid unnecessary surgical procedures, can change medication when appropriate, and improve your nutrition and posture habits.

There are hundreds of treatments you can use to help lower and control your pain. What the magic combination is will be different for each of us and we must find what works for us individually.

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 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.

The Surprise Gift Chronic Pain Gave to Me

By Jean Price, Guest Columnist

When illness or injury causes long term consequences and persistent pain, we often grieve for what we used to be and do before the pain. That's natural, because we've lost that particular "design" of ourselves that we knew and liked, even though we usually took it for granted.

Chronic pain sufferers don’t take anything for granted anymore, not with pain invading and diminishing our functioning, ability to work, care for ourselves, and be an active part of our families and friendships.  We want what we most likely won't have again. 

In life, natural aging is a lot like this too, only there is more time to adjust and it feels more like a natural process, not like something that has been ripped out of our hands.

At first, we spend a lot of time waiting to get well and wanting to be healed. To get better, get back on our feet, and rise above where we are. To be whole again. 

In the past, we usually recovered from ailments and injuries. But not when we cross that bridge into daily and life-limiting pain. In a sense, we aren't really "sick." We've just reached a new normal. There's no cure or any way to change us back.

I remember a long ago evening when my daughter was too slow to get up and help me set the table and get dinner ready. So I told her rather abruptly I didn't feel like doing it and really needed her help. She replied that she had a headache and didn't feel like it either, adding something that stopped me in my tracks.

"Mom, I'm sick tonight and you're not!" she said.

JEAN PRICE

It wasn't until later that night that I realized what she had meant with those few words. I had been to the doctor the day before and had a bruise the size of a dinner plate on my hip from an injection. I was starting into the second year of severe pain after a failed back surgery.  A surgery with devastating complications that resulted in a second surgery two weeks later; ending with multiple doctors’ appointments and a dozen courses of steroid treatments over the next year. It made me even sicker and still unable to lift my leg.

I really felt sick, yet this had gone on so long that my daughter didn’t see me as sick anymore. I was just being me, and my pain and disability was normal. For her, the old mom was already history.  For me, I truly expected that if I just worked harder, found the right doctor, and suffered through the right treatment, I'd get back to my old idea of normal.

And of course I haven't. Instead, I've been through many new normals, all of them feeling like a downward spiral.

Until I found there is actually a big upside to all of this:  I have become a better person.

It's taken a lot of work. Grief is a verb and requires work! And it has taken good support from others and much learning. Yet the current "new me" has some really special attributes.  She is more patient, more compassionate, more at peace with change, more generous to herself and others, has a much stronger and tested faith, and has more joy in the little things of life.

She is less angry, less judgmental, less serious, less hyper-responsible, more loving, less co-dependent, more forgiving, more trusting of herself, more self-affirming, gives better support to others, and basically is way more whole. Less functional, certainly, but more whole.

Odd, but it's true. When our bodies fail us, we can choose to keep growing our minds and spirits, and we can find important things in life that are still easy, even when we can't do much. We find that love and joy come in little, surprising packages just waiting to be seen. And we find that there is more to life than what we do. We aren't human doings, but rather human beings.

Even with pain, we can chose to be kind, loving, at peace, and better than we were. We are not our pain. We are worthy and wonderful creations, and still enhance this world.

Yes, I do miss what I used to be able to do, but I really don't miss the person I was. Not at all! Because I like the person I am now so much better. Probably because I have been tempered by all that I’ve been through, and enriched by all the people and blessings in my life.

Life is full of changes and each change brings loss; even the chosen changes or the more positive changes still have losses. Yet we don't have to lose ourselves in the process of pain.  We can become more and better.

It's a choice. One of the few things we do have control of. How we feel emotionally, how we react, and how we think of ourselves and the world.

Pain doesn't stop us from being ourselves, only we can do that to ourselves. And if we do, then we've really lost, because the special person we each are deserves to be part of this world, and can still contribute and find joy, despite pain.  

I think I'm living, breathing proof of this.  And I'm glad I don't really have the choice of giving up pain or giving up who I have become. Because as odd as it may sound, that would be a really tough choice.  

Jean Price and her family live in North Carolina. Her chronic back pain began with a herniated disk and escalated after major complications from surgery. Jean also suffers from rheumatoid arthritis and osteoarthritis, and is a breast cancer survivor.

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.

Living With Chronic Pain in an Opioid Hostile World

By Robert Hale, Guest Columnist

I am 50 years old and suffer from late-stage Ankylosing Spondylitis.  My entire spine has fused, along with my entire neck.  I cannot look left or right, nor up and down.  My shoulders are in the process of fusing.

I have a broken clavicle – broken in two places – that refuses to heal. I also suffer from peripheral neuropathy in my legs, which makes walking feel like treading on broken glass. 

My disease is degenerative, progressive and incurable. The only relief I can get is with opioids.  Taking long acting morphine and hydromorphone as a breakthrough medication, has literally saved my life.  I do not get any joy or “high” from these medications -- only relief from pain -- which is as close to a miracle as could be hoped for, for someone in my situation.

ROBert HALE

For the last 10 years, I have been seeing doctors, both in the field of palliative care and pain management. Early on, we managed to find a dose of opoid medication that was appropriate for me, and I began my life anew.

No longer bed-bound and useless, but able to function again, and become a productive member of my family and society.  I opened up a guitar shop and began working again – albeit at a gentle pace – and I really felt that my life was worth living again. 

I wasn’t happy to be taking pills every day to achieve this feeling of well-being, but it beat the alternative.  I asked my doctor, a wonderful, empathetic and kind doctor, how long I would have to be on these medications.  He told me, “Probably for the rest of your life”. 

Sadly, my awesome doctor left the palliative care clinic I was attending, and I was forced to move to a pain clinic in Overland Park, Kansas.  It is run by a highly respected pain management doctor, who took one look at me, asked me to walk down the hall and back, and knew immediately that I was a good candidate for the medications I had been taking.

For several years more, everything was fine – the doctors and nurses were great. Of course I had to sign a patient contract, agreeing to take my medications as prescribed (which I always do), not to take anything else, including illegal drugs, and not to share my medications with anyone.  I also was subjected to frequent urinalysis to prove that I was complying with my treatment plan. 

I never strayed from that plan, nor did I ever have a drug test showing anything but what it should.  I was, in the words of one of my nurse practitioners, the “perfect patient.”  I took the meds I was prescribed, exactly as they were meant to be used.

I am not an addictive personality, so I never was tempted to use my medications to try to get high, nor do I think I am addicted to my pain medications. I do have a tolerance to them, which is unavoidable in my situation.  I have been on large doses of morphine and hydromorphone for over 10 years. I’ve learned to respect these powerful drugs, and to treat them with great care.

The "New Cruelty"

Unfortunately, ever since the CDC opioid prescribing guidelines were released, stating that the maximum dose for any one person should be no more than 90 mg of morphine equivalent opioids per day, my pain care has changed for the worst.

The guidelines clearly state that they are meant for general practitioners, not doctors who specialize in pain management. However every pain doctor I have contacted see the guidelines as rules, and they have begun a relentless campaign of reduced opioid prescribing.  All of the pain clinics in my area have followed suit.  My pain doctor even went so far as to sell his practice to one of his partners.  I suspect this is so he couldn’t be blamed for the “new cruelty,” as I like to put it. 

It is very disturbing to talk to him these days – it’s like he is a completely different person. Gone is the compassion, the empathetic “do no harm” doctor that I had gotten to know over the last several years.  He now claims that the reason he no longer prescribes the meds we need is because of the danger of overdose.

If a doctor like him can be swayed by this propaganda, there are at least a thousand more around the country acting the same way. 

Some chronic pain patients have it worse than me, although it is difficult for me to imagine that, as my increase in pain levels has literally left me all but crippled.  I have told the pain clinic this, but they just look at me and say, “Oh, I’m sorry.  You’ll get through this somehow.”  But they know better. 

I have already had my medications reduced drastically, to about a tenth of the dose I have been safely taking for years, and I am absolutely miserable.  My days are once again filled with unrelenting pain, and on top of that, I am suffering from opioid withdrawal. I constantly feel like I have the flu, and can only sleep 2 to 4 hours every night.  I am back to being bed-bound most of the time, and it is physical torture to do the simplest things like dressing and showering. 

I cannot help around the house, to help my father who is 77-years old.  He just lost his wife, and my mother, to Alzheimer’s disease, and he needs me.  And I need him.  I can no longer play with my dog, Aya.  This breaks my heart – she deserves so much better.  

The worst part is, I’ll be back in the pain clinic next month, to have my dosage cut down again, because I have not agreed to have an intrathecal morphine pump installed in my body – an option that is not available to me, due to the fusion of my spine.  Other doctors have warned me not to have this procedure done, so it’s back to the clinic to get my meds cut down again.  Pretty soon, I’m going to be at a level of pain that the tiny amount of morphine they will allow won’t even touch.  What am I to do?

Here is a link to an excellent article on PNN, headlined “Pain Care Shouldn’t Be Political Theater” by Dr. Richard Oberg, a man whose disease is in the same family as mine.  

“The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice,” Oberg wrote.

Something is going to have to change, and fast, or a large percentage of the chronic pain patients in this country are going to die by their own hands, or be forced to find their medicines through illegal means, or switch to drugs like heroin and become statistics themselves.  I am just one voice, but I speak for thousands. There are so many of us who are unable to even summon the energy needed to type a column such as this. 

I just read an article stating that since the CDC guidelines were put in place, the rate of suicides among pain patients may be rising. I’m not surprised at all.  I think about it all the time now. The only thing keeping me here is the fact that I have people who depend on me, and the fact that I think suicide is a sin. I don’t want to wind up having to learn all these life lessons again. 

Please, for the love of God, listen to my words: Most of us are too weak and too sick to even make a plea, so I’m doing this on behalf of all those who are too weak to even type a letter to their congressmen or the people who can make a difference.  Stop treating chronic pain patients like drug addicts! 

We don’t even like the damned pills, but without them, we are in a living hell – an evil downhill spiral that can only end in madness, addiction to illegal drugs, or death.

Robert Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

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: Too Many Pain Pills

By Carol Levy, Columnist

I have a confession to make. I watch a number of the court TV shows. Sometimes they can actually teach me something, sometimes they are laughable. Sometimes they are cringe worthy. Sometimes they are simply infuriating.

The judge on one show uses his program as a platform to vilify “pain pills.”

A plaintiff or defendant is invited to tell their story. More often than not, it is a hard luck story. Within a few minutes, many of them blame much of their life struggles on substance abuse problems. Sometimes it is a happier story. They have kicked their drug addiction.

Either way, the judge is curious. “How did you get started using these drugs?” he asks.

The most common answer is that they had a bad back, toothache, neck pain, etc.

“I started to take pain medication for it, and next thing I knew I was addicted and my life spiraled out of control,” they often say.

The judge nods sagaciously and pronounces his sentence on opioids: “Oh yes. It is easy to get addicted to them.”

Never mentioned, and I do understand the issue of time and editing, is the benefit of these medications for those in legitimate pain. Or that those with chronic pain rarely become addicted to them. Instead, the false narrative continues to stand: Pain pills are given for specious reasons and quickly lead to addiction.

Also omitted is the question: “Where do these pills come from?”

The Centers for Disease Control and Prevention states: “Since 1999, the amount of prescription opioids sold in the U.S. nearly quadrupled, yet there has not been an overall change in the amount of pain that Americans report.“

The CDC reported last week that 17,536 Americans died in 2015 from overdoses of prescription pain medication, a 4 percent increase from the year before.

Patients don't write these prescriptions, yet the CDC’s opioid guidelines and other government regulations seem intended to punish them. As a result, we need to go to the doctor more often. That means more money, more trips, and more waiting. As I write that, I can see folks without pain saying, “So what?”

The “what” is that having to make these extra trips usually translates into more pain, which may necessitate taking even more pain meds. The guidelines meant to “help” may actually increase the need for opioids.

But the CDC itself has let on where the problem lies.

It is not with the patient. It is with the doctors and prescribers who give out these prescriptions like candy. A dentist giving a 30-day supply for a tooth extraction, or a primary care doctor prescribing narcotics to a patient with lower back pain or other issues that could well respond to physical therapy, aspirin, and changing their behavior.  They are the culprits.

The source of the problem is clear. Too many prescriptions are being written by too many doctors.

The CDC guidelines let them off the hook. And puts the patient on it.

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.

7 Tips for Peace and Calm in the Busy Holiday Season

By Ellen Lenox Smith, Columnist

When the holidays are upon us, we tend to go into overload. Our minds are filled with all the things that have to get done. Maybe it’s presents to buy or make, meals to plan, company to prepare for, or packing for travel away from home.

We get so busy wrapping, cooking, cleaning and planning that, before you know it, your mind is spinning. If we aren’t careful, we get so wound up and tired that we can easily slip away from enjoying and experiencing the meaning these times with family and friends should have for us.

For those of us living with chronic pain and illness, it can also unintentionally cause a setback with our health. Life is difficult enough already without adding holiday stress to it.

Take the time to protect your health and learn to make it a priority among all the other things you need to take care of.

Here are seven tips to put peace and calm back into your life, while still enjoying the holiday season:

1)  Do your best to stick to your normal routine. Be honest with yourself and your body. If you are too tired or have too much pain, do what is best for you. There is nothing wrong with “not feeling up to it.” Give yourself permission to cut yourself that break.

2)  If you have chronic pain or illness, share with people that really want to know the truth. Many friends and family really don’t understand what you are coping with, possibly due to distance. Maybe you have had little contact, they don’t know how to approach what is happening with your life, or maybe they have chosen to ignore and not support you. 

It is a painful thing to experience when family and friends slip away. But in time, you will find others living with pain and illness that are more understanding and compassionate. Try to find that network, and learn how to live with and someday forgive those that don’t know how to be around the “new you.”  It will someday be their regret for their lack of compassion. Remember, there are many people out there that could use your friendship. Consider reaching out to others in need.

3)  Attempt to simplify your life to prevent the exhaustion many of us experience. One way our family has accomplished this is to no longer buy presents for each family member. A few years ago, we began selecting the name of one person and buying a present for them and no one else, except the children in the family. This had to be the most relaxing decision added to the holiday! The pressure is gone, and we now get to gather and just enjoy being together. 

This year, we have decided to take this idea one step further. We're donating the money that we would have spent on that one person to some person or cause that we want to help support.  We will share, when we all gather together, what we chose to do with our donation. We are all looking forward to hearing each others' choices. 

4)  Being with family and friends can be both wonderful and stressful. Try to make sure the conversations stay on a positive track.  When the topic appears to be getting into testy waters, try to sway the conversation away from negative topics. 

We have all had to calm down and regroup from the stress of the election, so try to steer away from anymore negative talk, blame and judgement. The Today Show even suggested that if you are the host, to set the rules and explain that this is a calm gathering. Consider designating a separate room if someone needs to talk politics. 

We have all experienced finding out that people we love and respect did not vote as we did. It can be a trial to hold onto these relationships, when there are dramatic differences of opinion we didn’t necessarily expect to find out about. We need to accept those differences and still appreciate the good in each other.

5)  If you don’t have a lot of space for overnight company, then be honest and provide them with suggestions nearby where they can stay. You want to enjoy your company and not end up resenting their presence. They could still join you for meals and activities, but provide you some much needed rest and quiet when they step away.

Share the responsibilities. There is no reason why each person can’t help bring part of the meal. Don’t take on so much that by the time your company arrives, you are really too exhausted to enjoy them. Maybe you could consider making some dishes in advance and thaw them out before they arrive. That can be your secret!

6)  Try to create calm in your home. Consider playing soft music to fill the air. That can be very relaxing, along with scented candles. Consider asking guests to put their electronic devices away or even collect them, so you can focus on each other and not those screens. There is plenty of time to catch up on messages and postings later. Let this be the time to truly be together.

7)  Make a list of things that come into your mind, in advance of the gathering, of things that need to be done that can help make things go more smoothly. Many of us living with pain get “brain fog” and can easily forget. I find this simple task takes the stress off me, knowing that I will read that list and remember all the things I need to keep me safe, medicated and protected.

Being with family and friends can leave us with wonderful memories. But exhaustion, caused by pushing and pushing yourself, ends up deleting the fun. Those of us living with chronic pain and illness can’t afford to set our health back by pretending all is just fine.

Rest, make simple plans, share the responsibility, and learn how to relax and enjoy. You won’t regret it.

 Happy holidays!

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.