Power of Pain: 9 Tips for Cooking with Chronic Pain

By: Barby Ingle, Columnist

For those of us living with pain, we wish for a life worth living -- one that permits us to enjoy our family and friends.

Preparing and sharing a meal is something I enjoy doing, but pain can make even the simplest cooking tasks more difficult, especially those that affect our hands, fingers, wrists, elbows, and shoulders.

Here are nine tips I’ve learned to make cooking easier:

1. Use pots and pans with two handles

2. Buy a food processor, especially if you have difficulty with manual cooking tasks like chopping, cutting, and slicing.

• Choose a food processor that is manageable for you and your physical limitations
• Before you buy one, be sure you are able to change the blades easily and remove the plastic bowl and plastic lid from the processor
• Consider mini food processors for your needs

3.  Use specialty cooking tools such as "Rocker" knives.

• The two-handled design adds strength and control to cutting and chopping, while the rocker blade design has the motion built right in.

4.  Use a stool to sit on while you prepare and cook food.

• Cooking can be a long process, depending on how complicated the meal is you are preparing
• When counter work starts to increase your pain or when standing over the stove is wearing you out, be prepared to pull up a stool

5.  Crock pot meals

• Crock pots are helpful for people with pain to be able to cook nutritious meals, but in less time and more simply.

6.  Electric can opener to use on canned food or soups

• Soup is simple to prepare and nutritious
• Make sure you have canned soups available for when you are having bad pain days or the ingredients to make soup when you don’t feel up to cooking. Soup will warm you and soothe you.
• Use a ladle to pour soup into the bowl

7.  Double the size of your meals

• Create planned leftovers which you can freeze and have available for another day
• You will be glad you have nutritious meals in your freezer on days you don't feel well enough to cook

8.   Food Storage

•  Get food storage containers which are easy for you to open and easy for you to stack
•  Prepare and store foods which you commonly use and have them in ready-to-eat condition.

9.   Organize your kitchen

•  Get a stove with controls on the front rather than the back
•  Install cabinet handles which are easy to grasp
•  Install vertical dividers to store pans and trays so that they are not stacked
•  Raise the front bottom edge of the refrigerator so it closes automatically
•  Store frequently used items in cupboards between knee and shoulder height
•  Store kitchen items near the area they are used
•  Store spices in a drawer or on the counter rather than in a high cupboard

There are many choices and designs for cooking tools and kitchen aids that can make cooking easier, such as ergonomic, lightweight cooking tools, which have easy grips and non-slip handles.

Spatulas, spoons, ladles, whisks and other cooking tools which feel comfortable in your hand can greatly improve manual dexterity, reduce pain, and compensate for swollen and deformed joints.

What tips have you learned to make cooking easier?

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 I Finally Took Myself Off Cymbalta

By Crystal Lindell, Columnist

To be fair, the first time I took myself off Cymbalta, it was less of a “took myself off” situation and more of a “I ran out of medication and money, and couldn’t get my refill for a few days so I just thought I’d skip a few doses” situation.

But it turns out that going off that stuff cold turkey is seriously hell. It made me dizzy and nauseous, and basically electrocuted my brain every few minutes with something called “brain zaps.” When I finally realized that all of this was because I didn’t refill my prescription, I went to the pharmacy, got another dose, and about a day later, got my brain back.

Except I didn’t really get my brain back, because Cymbalta essentially turns your brain off.

Being on Cymbalta, which is now available as a generic called duloxetine, made me so tired that 16 hours of sleep felt like I just pulled an all-nighter. It killed my sex drive. It canceled out all my creative thoughts. And it basically made me feel like I was living in a London fog every day. I could sort of see the world, but not really. Also, it made me gain 30 pounds.

So, to sum up, Cymbalta really sucks.

The worst part about this whole thing though isn’t the side effects. It’s that my doctor originally put me on Cymbalta to help with my chronic pain, but it actually did nothing at all to help that.

Although I will admit that it did curb all those suicidal thoughts that I was having because I wasn’t on enough pain medication and I thought I was going to feel like a semi-truck was crushing my ribs all day, every day, for the rest of my life.

But eventually I did get on the right mix of pain meds, and I realized my future wasn’t quite as bleak as I had thought. And so, even after that horrible experience of kind-of, accidentally going off Cymbalta last winter, I decided that I really wanted to go off it completely. And I thought maybe I’d just try the cold turkey thing again.

And before you’re all, “OMG!! You are an idiot!! Why would you ever take yourself off a drug like that cold turkey?” There are three things you should know:

1. I’ve had doctors, including one at the freaking MAYO CLINIC, tell me before to go off all sorts of drugs cold turkey, including sleeping pills, antidepressants, and opioids. So I got the impression that all this business about not going off certain drugs cold turkey is more of a suggestion than a recommendation.

2. My doctor never told me NOT to go off Cymbalta cold turkey. Ever. Not one time. Not even in passing as he shook my hand at the end of the appointment. Not even when I told him I was thinking about going off the drug and he shut me down by saying, “Just stay on it. It’s probably doing more than you think.” I also live in a really small town, with one small pharmacy, and they never gave me any sort of information when I picked up my prescription telling me about the side effects of going off it cold turkey.

3. (And probably most important) The dosing is such that going off Cymbalta cold turkey is kind of your only option. As far as I can tell, the lowest dose is 20 mg and it only comes in capsules, so you can’t just cut them into smaller and smaller pieces until you’ve weaned off it. After you're on the smallest dose, there’s no choice but to go cold turkey.

Also, honestly, I really did think the withdrawal symptoms would subside after maybe a day. I was wrong. After about a week, I couldn’t take it anymore and I went back on Cymbalta.

I really, really wanted off this drug though, so I decided to call Dr. Google. And I found out that some people were just opening the capsules and pouring a little more out each day until they got down to nothing. I decided to do the same thing. And, while it ended up taking me a few months of meticulously opening the capsules and eyeing it every day, I finally got completely off Cymbalta. And I was lucky enough to avoid most of the side effects that I experienced when I went off it cold turkey.

When I confessed all this to my doctor though, I’m pretty sure he A) Totally did not believe me about the brain zaps, and B) Was secretly judging me for my methods — especially since the makers of Cymbalta explicitly say you should not open the capsules.

I've written before about how horrible Cymbalta is though, and how people are actually suing Eli Lilly, the makers of the drug, because they’ve been kind of shady with how they portray the withdrawal symptoms.

“Studies show that between 50% and 78% of Cymbalta users experience antidepressant withdrawal symptoms after discontinuing the drug. Yet the drug label misleadingly states that Cymbalta withdrawal symptoms occur in only 1% to 2% of cases,” claims attorney Steven Gacovino, one of several lawyers suing Eli Lilly on behalf of patients.

That’s a pretty big difference. So maybe my doctor really didn’t know that it could be an issue for me to go off Cymbalta cold turkey and that’s why he never mentioned it. Or maybe he really did think it was helping me more than I realized. I don’t know.

I do know that I’m really glad I got off that drug. I also know that if any other chronic pain patient ever asks me my opinion about Cymbalta, I will definitely advise them against taking it for pain.

I just hope it’s not too late.

Crystal Lindell is a journalist who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome.

The 7 Psychological Stages of Chronic Pain

By Jennifer Martin, PsyD, Columnist

Have you ever wondered if other people with chronic health conditions feel the same way you do?

Throughout my years with chronic pain and illness, along with the hundreds of patients I have counseled, I have found that, while everyone copes in their own way and experiences their condition uniquely, there are common feelings that most of us share.

When I first began counseling chronic pain patients, I often used Elizabeth Kübler-Ross’s “Five Stages of Grief” to help them understand what they were going through. 

But as time went on, I reflected on what I experienced with my own chronic conditions and also on my patients’. It seemed that these stages, while very helpful, didn’t fully explain the broad range of emotions that people with chronic illness experience. 

After all, Kubler-Ross developed them to explain the responses to grief and loss. Having a chronic illness can be viewed as a type of loss, but they were not developed specifically to explain the emotions of people experiencing chronic conditions.

I used Kübler-Ross’s stages as a model to develop the Seven Psychological Stages of Chronic Pain and Illness: 

1. Denial

In this stage, we are in a state of shock and refusal. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

This stage can be dangerous for people with chronic pain and illness because if they are in denial about their condition, they may not take the necessary steps to get themselves the treatment they need.

Example: “It’s not a big deal, it will go away” or “The doctor is wrong, I don’t have diabetes.”

2. Pleading, Bargaining & Desperation

This is the stage where we want more than anything for life to be what it once was. We become fixed on anything that could make our illness and pain go away -- or anything that could give us some semblance of the life we once had. 

We may find fault in ourselves and what we think we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel them anymore. Guilt is common when bargaining. 

Example: “Please just don’t let this ruin my life” or “If you make the pain go away, I promise I’ll be a better person.”

3. Anger

After we conclude that our pleading and bargaining is not going to change the diagnosis, anger sets in. 

Anger is a necessary stage of the healing process. Feelings of anger may seem endless, but it is important to feel them. The more you truly feel anger, the more it will begin to subside and the more you will heal.  Your anger has no limits and it may extend to your doctors, family, friends and loved ones.

Anger is often felt later on when the illness and pain progresses, or holds us back from doing the things we would like. 

Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!”

4. Anxiety and Depression

Feelings of emptiness and grief appear at a very deep level.  This depressive stage feels as though it will last forever.  It is important to understand that this depression is not a sign of mental illness.  It is the appropriate response to a loss or a life-altering situation. 

We may withdraw from life and wonder if there is any point in going on.  Depression after a loss is too often seen as unnatural or something that needs to be snapped out of.  Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had.

Having a chronic pain or illness may also bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations, anxiety about social situations, anxiety about medical bills, etc.

Example: “I’m going to be in pain forever so why even bother?” or “I’m going to be in debt forever.  How am I ever going to pay off these medical bills?”

5. Loss of Self and Confusion

Having chronic pain or illness may mean giving up some key aspect of what made us who we were.  It may mean an inability to be physically active like we once were.  It may mean not being able to be as sociable as we would like or it may even mean giving up a career. 

You may wake up one day and not recognize the person you are now.  You may question what your purpose in life is now.  This stage may occur at the same time as anxiety and depression, or it may be separate.

Example: “I don’t even recognize myself anymore.” or “My career was my identity.  Who am I without that?”

6. Re-evaluation of Life, Roles and Goals

Having a chronic condition often means giving up a lot.  We are forced to re-evaluate our goals and futures.  We are forced to re-evaluate who we are as a husband, wife, mother, father, sibling or friend.  While we once had a successful career that gave us purpose, we may find ourselves beginning to question what we can do for work in the future and how we can contribute to our families. 

While we were once able to do it all, we are now re-evaluating what absolutely has to get done during our days and how we can accomplish these goals while still remaining in a positive mood.  Re-evaluating your life, roles and goals is a crucial first step in accepting your condition.

Example: “I may not be able to be a nurse anymore but maybe I could teach classes a couple times per week.” or “I can’t be as physically active with my husband anymore so what else can I do to show him I love him?

7. Acceptance

Acceptance is often confused with the idea of being “OK” with what has happened. This is not true.  Many people don’t ever feel OK about having to live with pain or an illness for the rest of their lives.

This stage is about accepting the reality of your situation and recognizing that this new reality is permanent. We will never like this reality and it may never be OK, but eventually we accept it and learn to live life with it. It is the new norm with which we must learn to live.

We must make adaptations and alterations to our lives. We must find new things that bring us joy.

Example: “I’m not going to let this define me. I will learn to deal with this the best I can.”

It's important to remember that these stages are not linear.  While some people begin in the denial stage, move through each stage and end with acceptance, many people jump back and forth throughout the stages.  I hope that these stages give some comfort to those who are experiencing chronic conditions.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

A Pained Life: Waiting Can Be a Good Thing

By Carol Levy, Columnist

I am on an online "chat" with the cable company. I know this will be difficult -- my eye pain is made worse by having to read and type -- but it is just so darn difficult getting them on the phone.

The chat was going well, but it took what seemed like forever between responses from the representative. I was getting more and more frustrated and annoyed. 

When is she going to come back online so I can be done with this already? 

My reasoning was simple. The faster we can finish this, the sooner I am to no longer doing something that is causing me pain.

I was fuming. C'mon, C'mon!

And then it suddenly dawned on me -- the waiting is a good thing. Every minute or two between replies means I am not using my eye. It is free downtime, my eye getting a few minutes of reprieve.

How many times have you gone out with someone, maybe to shop for clothes or to buy groceries, and the other person stands there looking at items, wrestling with a decision:  "This one or that one? That one or this one?"

And how often do you get mad or upset? My body is hurting and the pain is growing. Please, enough already! Or maybe you even say it. 

What if, instead of letting the frustration or even the pain get to you, you take the opportunity to find a chair or lean against a counter? Or even say, "I need to leave the store. I'll go back and wait in the car." 

So often it feels like we have no options. It is an either/or situation -- either leave or let the pain take over.  Or feel like you are antagonizing the person you are with. 

But maybe there is a third choice. 

Instead of ending up upset because you could not get done what you came to do, or the person you came with is annoyed because your mood has turned foul and they "don't want to hear about your pain" anymore; maybe it is time to change our thinking.  

I am not one to dole out platitudes. I don't think we can make lemonade out of our pain-filled lemons. But just for this instance -- turn that frown upside down, as it were.

Take the frustration of waiting and give it a reason. 

Take the time to find a safe area, couch, counter, or a quiet fitting room and turn the negative of frustration into a positive time for yourself.  And a time-out for your body. 

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.

Miss Understood: A Taste of Remission

By: Arlene Grau, Columnist

If you ask me to plan something, almost anything that requires me being somewhere on a certain day for any amount of time, I would have to decline because I never know how I'll be feeling on any given day.

Now ask me to plan a family vacation that would take me to Hawaii, where I would be 5 hours away from my doctor by plane – well, that would be insane.

However, I did just that and the results were better than expected.

I had my Rituxan infusion a month prior to leaving in hopes that it would kick in just before I left. My body, however, had a different agenda. I began feeling ill the week after my treatment. On top of that, I suffered a bad fall at home. I sprained my ankle, bruised my hip, and hurt my knee.

Instead of making progress, I was taking several steps backwards. I had tried to prepare my body for months and it was beginning to feel like it was all in vain.

But my husband and doctor didn't allow me to give up. My doctor prepared an emergency plan for me before I left. He prescribed backup antibiotics in case I became ill, started me on a temporary prednisone dosage, printed up my most recent patient summary (since I was taking so many medications with me), and gave me contact information for a rheumatologist in Hawaii in the event that I needed to be seen. He even called the other doctor ahead of time and told me to email him for anything.

Although my body wasn't completely ready, I felt like I had the tools necessary to handle any medical emergency I may have.

Now, I don't know if it was the simple fact that I removed myself from all the stressors in my life, but I felt so much better while I was in Hawaii during that one week than I have since I was first diagnosed with rheumatoid arthritis eight years ago.

My theory is that the change in climate helped with the inflammation I was suffering from. I know that when it's very cold and dry, I tend to flare up and feel very ill. And when it's really hot and the sun is pounding down on me, I feel my weakest and just as sick.

But out there I was met with humidity and sunlight that didn't feel like it was stripping away every ounce of energy I had.

I had one or two trying days; granted I was doing a lot more than I've ever done at home as far as activities and walking go. But I was extremely proud of everything I was participating in. I even got to enjoy my 30th birthday in Hawaii, one I never thought I would live to see.

I knew as soon as we got home that something was different because I woke up feeling like I had been hit by a truck. As quickly as the swelling and inflammation left, it returned. My insomnia is back and my migraines are more intense.

But I got taste of what remission might be like.

It was a great vacation with a bittersweet ending because, instead of dreaming about the visual paradise I was in, I'm left day dreaming about the physical paradise I felt -- the one that had less limitations and more of my old self.

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

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

Visiting a Medical Marijuana Dispensary

By Ellen Lenox Smith, Columnist

Many people who are considering medical marijuana for pain relief are reluctant to visit a marijuana dispensary, fearing it might be in a bad part of town or that they may encounter some unsavory characters.

Since I am a home grower of marijuana, I felt it was best to visit a dispensary in my home state of Rhode Island to get a fresh, first hand view of what the experience is like. Through the kindness of Barbara Pescowolido at the Thomas C. Slater Compassion Center in Providence, this visit was made possible.

The first thing that I noticed was the professional layout that included informed, pleasant and knowledgeable employees who were there to greet me. There is 24 hour surveillance of the premises, a well-lit parking area, and a professionally trained security team.

I had to show to identification, which requires a Rhode Island medical marijuana patient or caregiver card,  and another form of ID, like a driver's license. After my information was put into the computer and confirmed, I was buzzed into the center. If a patient is not able to walk without assistance, he or she can be accompanied by a licensed caregiver, who would also be required to present credentials.

Every new patient is given an orientation session that includes a one-to-one educational conversation, and a folder of information to take home and review for future visits.The folder includes the different methods of ingesting marijuana, the concentrated forms available, their laboratory testing procedures, how to use your medicine sensibly, and a form that explains cannabis and the difference between sativa and indica plants.

There’s also a patient journal so you can record the type of marijuana you tried, how you ingested it, the date/time of taking, and the duration/effect. This is to help both the patient and staff make educated decisions on your next purchase.

Also included is a “Good Neighbor Agreement” the patient is to read and sign. You are expected to follow the guidelines to be able to continue using their services. They include:

• Not to smoke or consume marijuana on site or in the parking lot
• Refrain from using cellphones or cameras while in the building
• No minors allowed unless they are a patient and accompanied by a parent or legal guardian
• No minors left in your vehicle unattended while visiting the center
• No animals except guide/service animals are allowed inside
• Keep all medicine and money our of plain sight
• No weapons allowed.
• Do not invite individuals who are not patients or caregivers, unless special arrangements are made with management
• Do not throw litter in the parking lot or surrounding area
• Marijuana purchased in the center is not for resale. Any member found reselling will have their membership revoked
• Keep all conversations respectful and appropriate

New patients also learn about a wide range of free ancillary services, such as massage, reiki, hydrotherapy bed, cultivation, and classes on cooking and methods of consumption. There are also product showcases and live demo’s that include weekly open house tours, 1:1 consultations, loyalty rewards program, a community newsletter and a cannabis library/DVD section.

The next step for me was to take a number while relaxing in a tastefully designed waiting area. When you are called up to the counter, you get to work 1:1 with a knowledgeable patient advisor/employee.

A menu hangs over the counter sharing what medications are available. A variety of edibles, capsules, concentrates in syringes, flowers, exilers, and topicals are for sale.

This center has come up with a novel idea. For just $20, you can purchase a sampler packet that includes small samples of medicine that includes THC capsules, CBD capsules, elixir, a cookie, hard candy and gummy bears. This allows the patient to return home and try these different methods to decide what fits best for their needs.

The center is still not able to grow all that is needed to accommodate patients, so there are times customers return for a specific product to find it is not available. It is difficult for the center to have to rely on others growing for them, so their goal is to one day be totally self sufficient.

Patients are allowed to purchase 2 ½ ounces every fifteen days. Records are kept in a computer so that no one ever goes over that amount unintentionally or intentionally. You are able to check the center’s website for a "menu" of the current product being sold, but you are not allowed to purchase online.  

Prices presently range from $25 to $50 for an eighth of an ounce of product. Prices can fluctuate if the marijuana tests out to be stronger. All marijuana, either grown on site or purchased from growers, is tested and cleaned.

My experience there was pleasant and educational. For a closer look at the Thomas C. Slater Compassion Center, you can watch this short video the center has on YouTube:

Uploaded by Slater Center on 2015-06-09.

If you live in a state that allows medical marijuana, but does not permit you to grow your own or have a caregiver grow for you, then a dispensary like the one I visited can probably meet your needs. But each state has different laws and regulations for both patients and dispensaries, so your experience may differ from mine.

Visiting a dispensary and trying medical marijuana for pain relief could result in a significant improvement in your quality of life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis.

Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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

Medical marijuana is legal in 23 U.S. states and the District of Columbia, but is still technically illegal under federal law. Even in states where it is legal, doctors may frown upon marijuana and drop patients from their practice for using it.

Your Friendly Neighborhood DEA Snitch

By Steve Meister, Guest Columnist

A recent story out of the Southeast caught my eye. A local pain management doctor has been cut off by local pharmacies, or more precisely, the patients of that doctor have been cut off because local pharmacies are refusing to fill pain scrips written by that doctor.

In these instances, which I’ve seen some of my own doctor-clients’ experience, the pharmacies’ actions range from altruistic and concerned, to cowardly and hasty disassociation from a provider who may or may not have done anything wrong.

The doctor who was the subject of the news story does, admittedly, write many, many pain prescriptions, and perhaps he does deserve a close second look by pharmacists. Pharmacists, after all, have a very important job, not only to fill a prescription correctly and consider drug interactions, appropriate dosage, and medical necessity, but they also have a responsibility under federal law to double-check the legitimacy of the prescription to begin with.

This is especially true when it comes to pain prescriptions, and so says the DEA. Loudly, in fact. So loudly does the DEA make this pronouncement to pharmacists, that many times I have seen pharmacists inform on doctors just to get the DEA off the pharmacy’s back.

While a pharmacist can always say, perhaps legitimately, that he or she was righteously concerned about the sheer volume of pain scrips coming out of a certain doctor’s office, that same pharmacist might be getting visits from DEA agents.

The pharmacist knows from the get-go that “naming names” is often a good way to get the DEA to redirect its focus. So pharmacists name names. And then other pharmacists in the area get word, and cut off the same doctor or the doctor’s patients. A type of local hysteria takes over, and pretty soon, there are a lot of pain patients finding pharmacy counters off limits to them.

What happens to these patients? An excerpt from the recent news story gives you an idea:

“I didn’t have a real good feeling about cutting people off cold turkey, but in some cases it was warranted,” a local pharmacist said.

The pharmacist interviewed is admitting that an abrupt cut-off of one’s prescription drug dosage can force people to go “cold turkey,” without tapering off of powerful medication on which the patient may have become physically dependent or developed a tolerance. What does it mean when there’s no tapering off? It means a patient risks going into withdrawal, which can be very dangerous and which subjects innocent people to great physical and psychological agony.

According to prescribing and pharmacy practice guidelines, doctors and pharmacists SHOULD NOT subject patients to abrupt, 100% cut-off from opioid dosage, even if a patient is exhibiting signs of misuse. Medication is to be titrated down, patients provided with enough medication for a reasonable time to allow them to find another provider, or be referred to substance abuse treatment programs if necessary, and patients are NOT to be placed at unnecessary risk of going into withdrawal.

And when the DEA is breathing down your neck, Mr. Pharmacist? It’s OK to kick patients to the curb then? No, it’s not. The pharmacist interviewed in the story is actually violating prescribing guidelines and probably running afoul of rules of professional conduct. He is certainly not placing patient safety ahead of his own survival. And without doubt, he is not alone in his self-serving behavior.

Unfortunately, as is often the case, people who otherwise act with dignity and compassion in their professional lives fail to show courage in the face of government intimidation. It’s easier to name names.

Steve Meister is a criminal defense attorney and former prosecutor in Los Angeles.  He advises prescribers on how to comply with prescription criminal laws, and defends people accused of overprescribing narcotics.  

This column is republished with permission from Steve’s blog, Painkiller Law.

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 Dangerous Game of Forced Opioid Reduction

By Forest Tennant, MD, Guest Columnist

A colleague who I highly respect just informed me of a woman with intractable angina who had multiple, inserted coronary splints and required a high daily dose of morphine. Without warning, her insurance company arbitrarily decided she did not need opioids. As one might expect, the forced cessation of opioids led to her death.

The forced reduction and/or cessation of daily opioids in stabilized patients have, in some corners of our country, reached the point of unscientific and inhumane hysteria. The craze to fight opioid abuse and force opioid dosages below 100 to 120 mg of morphine equivalents a day (MEQ) is now harming some patients who have been doing quite well on stable, daily opioid dosages. Some of the rhetoric and tac­tics being used to force opioid reduction are farcical if they weren’t so tragic in their consequences.

First, who is doing the forcing? There are multiple culprits: insurance companies, state legislators, regulators, and suppli­ers. Some of the tactics to force opioid reduction are indirect, such as limiting the amount of opioids a pharmacy can stock. Others are blatant, such as states that require physicians to seek a pain consultation if they continue to prescribe over a threshold MEQ level, even to patients who have been well maintained for a considerable time period. For example, in Washington State, a 120 mg/d MEQ threshold will trigger the prescribing physician to conduct, or refer the patient for, a pain consultation (exceptions and exemptions do exist). As noted by Stephen J. Ziegler, PhD, JD, “in some states, these thresholds appear in regulations, making the actions required actions, while in other states the thresholds appear in guidelines, making the actions merely recommended.”

Insurance companies are currently the most dangerous “forcers.” Neither patient, pharmacist, nor physician is pre­pared when a stable, opioid-maintained patient goes to fill a long-standing opioid prescription only to be told their insurance company has suddenly decided the patient should immediately cut their opioid daily dose by 30% to 70%, or even stop it altogether. The saddest aspect of this dan­gerous practice is that the motive is clearly greed, although the reduction may be accompanied by an “out-of-the-blue” statement that the forced reduction is for the patient’s safety. For example, insurance companies have recently informed long-standing, opioid-maintained patients that they have suddenly and capriciously decided they will no longer cover brand name opioids, injections, patches, compounded for­mulations, or a daily dosage above a specific level.

Insurance companies and some state guidelines are spitting out two illogical excuses for the forced reduction of opioids. One is that opioids dosages above 120 mg or so of MEQ are unsafe. Show me a study that indicates tissue toxicity of opioids at dosages over 120 mg in patients who have been maintained at a stable dosage for over 1 year. Patients who have been titrated up to dosages above 120 mg of morphine and periodically monitored by competent physicians almost always experience improved health and function, not the reverse. I have several patients who have been safely main­tained on high opioid dosages and led quality lives for over 20 years!! Why force these folks into sickness, suffering, and possibly death by suddenly and capriciously claiming their life-saving medication is dangerous?

The other straw-dog is “hyperalgesia.” Would someone please tell me how I’m to define and diagnose hyperalge­sia in a patient who has been well maintained on a stable opioid dosage—high or low—for over a year? Hyperalgesia has become a label and excuse to force down opioid dos­ages. Reputable and credible pain practitioners are not even sure it exists in a human who is well maintained on opioids. Whenever I see a patient who is on opioids and claims their opioids aren’t working as well as they used to, I take a hor­mone profile. Once I replace any deficient hormones, the patients’ opioids resume working.

My demand is for someone to send me the consensus doc­ument that tells me how to objectively diagnose hyperalge­sia in patients who have been well maintained on opioids over 90 days. What’s more, if hyperalgesia exists, what harm does it do? If we really believe that hyperalgesia is a problem with high-dose opioids, we must remove all intrathecal opi­oid pumps because these devices deliver a MEQ directly to the CNS receptors that is far in excess of any dosage we can achieve by peripheral administration!!

Readers of Practical Pain Management well know that severe, constant pain has far more risks than any stable, daily opioid dosage. Severe pain adversely affects the cardiovas­cular, endocrine, immune, and neurologic systems. It sends patients to bed in agony to lead a short, suffering life. There is no need to take these risks in a caring, concerned soci­ety, as a minute extract from the opium plant can prevent these complications and the pathetic, miserable death that a forced opioid reduction can bring.

So what do we do at this point? First, physician’s need to correct any false comments about the imagined dan­gers of stable, on-going opioid dosages. Whenever possible, pain practitioners should attempt to prescribe non-opioid pharmaceuticals that have come forward in recent years. In the latter category, I place ketamine, anti-epileptic agents (gabapentin, pregabalin, etc), and neurohormones (oxyto­cin, human chorionic gonadotropin, and progesterone). I’ve cut my patients’ opioid use by about 50% over the past 5 years by use of these new agents. I also recommend obtain­ing an opioid serum level in patients who take over 100 mg of MEQ. The presence of a reasonable opioid serum level indicates that the patient is ingesting opioids and is func­tioning well with a high opioid dosage.

Lastly, and most important, families of patients who must take a high daily opioid dosage need to become publicly active as advocates for their loved one. Unfortunately, but realistically, patients who must take a high opioid dosage always have a debilitating condition such as arachnoiditis, CRPS, traumatic brain injury, post-encephalitis headache, or facial neuropathy, and are too ill to fend for themselves. But their family can. Its time families demand the right of their suffering loved ones to obtain opioids, and their direct and blunt communication should go to State Medical Boards, insurance companies, wholesale suppliers, and their elected representatives.

Also, pain patients and family members should start joining the emerging nationwide organizations that are now forming to fight back. While we physicians have little public voice left, families of pain patients can, should, and will be heard.

Dr. Forest Tennant is pain management specialist in West Covina, California who has treated chronic pain patients for over 40 years. He has authored over 300 scientific articles and books, and is Editor Emeritus of Practical Pain Management.

This column is republished with permission from Practical Pain Management.

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

Power of Pain: Changes in Family Dynamics

By Barby Ingle, Columnist

Chronic pain can be a lifelong situation that has a significant impact not only on the patient, but on family and friends as well. The condition may affect every aspect of the patient's life in varying degrees, including professional, social, and daily living activities. Everyone may have to make adjustments.

After health, patients are usually hit hardest by the financial aspects of the chronic disorder. Frequently, a leave of absence or early retirement from work is needed due to the inability to perform work-related tasks. Financial difficulties are acerbated by frequent visits to healthcare providers, medical-related expenses and unemployment.

To help reduce stress for everyone, it may be smart for the patient and their family to meet with a financial planner or insurance agent and devise a budget for future expenses.

With less money and mobility, there’s a tendency to give up favorite activities like hiking, sports, traveling, and participating in family events. Exercise becomes more difficult and everyday activities such as driving and shopping may need to be modified or given up.

Despite a wide range of treatment options available, a patient with chronic pain may not seek help and dismiss efforts by others.

Some reasons for this include fears of:

• Addiction to medications
• Lack of insurance coverage
• Not understanding insurance coverage
• Belief that nothing can help them
• Recurring pain will be worse
• Being seen as a "complainer"
• Side effects from treatments
• Tolerance to medications

It is important to discuss these concerns with family members, friends, physicians, or support service professionals (psychologist, social worker, etc.) in order to take advantage of options that are available and may actually lead to pain relief and improvement in the overall quality of life.

Planning is a key component to keeping stress levels down and a great way for family and friends to learn how they can help. Having the patient map out a plan of action for daily routines and responsibilities allows everyone to know when and where their help is needed and minimizes unexpected mishaps. Responsibilities that may need to be addressed include carpools, housework, cooking, holiday activities, laundry, leisure activities, jobs, pet care, planning meals, self-care, and shopping.

Pain patients should be encouraged to stay active, join a support group or seek psychological counseling if appropriate. Some patients find benefit in getting involved in volunteer work, which allows them to set their own hours and to feel they can contribute to others instead of just focusing on their own condition. Patients also be able counsel others with chronic pain.

Caregivers and friends can encourage the patient to do well and get treatments they are comfortable with. Find the balance between encouragement and pressure so the patient knows you love them and that no matter what they choose you will accept it.                                             

It can be difficult (or impossible) to imagine that someone can be in constant severe pain.  It's normal if you have not lived through it yourself. For a caregiver, it may be hard to stand by and accept that your loved one’s pain cannot be fixed or cured (although it may be eased). 

It may also be hard to accept that you cannot make it better. If you are in a close relationship with someone in chronic pain, you are likely to develop a variety of negative feelings like anger or resentment. This is a normal part of the process for both you and the loved one in pain. You are both victims of the pain problem.

Learn how to set the expectation as soon as you can as to what your needs are as a patient or caregiver, what progression the chronic illness is expected to take, what treatment options are available, and the best ways to communicate with each other what will make life easier for the patient, family and caregivers.

Turning to family and friends as caregivers and support outlets is important for everyone to have better daily living.

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

More information about Barby can be found by clicking here.

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

5 Real-Life Tips for Traveling with Chronic Pain

By Crystal Lindell

One of the best things about my job is that after I got sick I got to switch over to a work-from-home arrangement. Honestly, if it wasn’t for this, I probably wouldn’t have a job right now.

However, there is one caveat. I have to travel. A lot. And while normal people probably think of business trips as a glamorous affair involving lots of great Instagram shots, anyone with chronic pain will tell you that they’d pick a day on the couch watching Netflix over a two-day business trip to North Carolina any day of the week.

But all of us have to go places sometimes, whether it’s a vacation to Mexico or a flight to the Mayo Clinic, so dealing with airports and the TSA isn’t always something we can avoid.

There are a few things I’ve learned on all those business trips that help me cope with it all.

So here’s some tips for navigating swollen feet, the medications in your carry-on, and window seats.

1.  Check your bag

This is definitely the most important tip I can give you.

Yes, on most airlines it costs a little more, but that’s why God invented Southwest and it’s free checked-bag policy.

And yes, sometimes you get to your hotel only to discover that the mirror in your $32 Urban Decay Naked Flushed compact somehow broke in transit. But there are other mirrors.

And not having to deal with luggage can be the difference between arriving in Phoenix feeling like you’ve just been involved in a plane crash, and arriving in Phoenix feeling like you just got up from a really great nap.

From a practical standpoint, checking your bag means you don’t have to drag it to your terminal or deal with lifting it up into the overhead bin while desperately looking around for help from the other travelers, hoping one of them has the magical ability to see your invisible illness. 

And it also means that you’re free to be one of those carefree people boarding the plane holding just a purse and a cell phone. Trust me, it’s the only way to fly.

2.  Put all your medications in your carry on.

No, seriously, all of them. Even that one you only take right before bed that you don’t think you’ll possibly need before you arrive. And that other one that you definitely don’t think you’ll need because you only take it on Wednesdays and today is Thursday.  

While regular people with regular health may think it’s a no brainer to carry-on all your pills, that’s not the case for us. People who deal with chronic pain have a legit chance of needing  23 different prescription bottles daily, so downsizing a carry-on bag by putting a couple of them in the checked luggage doesn’t seem so crazy. Unfortunately, there are so many things that can go wrong.

They could lose your luggage. Or you could miss your connecting flight. Or zombies could attack. So it’s just better to have that hydrocodone in your purse just in case.

And if any of the TSA agents try to give you crap about all that morphine you carry around, just show them your name on the prescription bottle and say, “No, yeah, these are mine. Sorry about that. Thanks for asking though. And also you’re doing a really great job here.”

Because you don’t want to be rude to a TSA agent — those guys have power over the terrorist watch list.   

3.  Buy the huge Fiji water bottle and drink all of it

The thing is, if you have chronic pain, all those warnings about drinking water to stay hydrated in the sky are even more pertinent.

Sleeping pills, nerve medications and opioids all have the fun side effect of dehydrating you all by themselves, so when you add in recycled air and cabin pressure suddenly you’re so thirsty even a caffeine-free, diet, generic Coke sounds good.

And, here’s what nobody tells you about that — all that dehydration and sitting on a plane in seats too small to bend your ankles makes your feet swell up. It’s a real thing. And it sucks.

So yeah, water, it’s important — especially if you’re planning to wear flip-flops on your trip.

But, as anyone who’s ever had to go through security at the airport will tell you, it’s impossible to get a bottle of any kind of water through the X-ray machine. So if you want to stay hydrated you have to buy something after the checkpoint. And personally, I like to use it as an excuse to splurge on one of those completely impractical square bottles of Fiji.

Hey, if you have to buy a bottle of water, you may as well buy the one that tastes like it came from the Garden of Eden.

4.  Pack dry shampoo and skip the showers

When you do finally get to L.A., the Mayo Clinic, or your grandma’s house, the very best thing you can do is skip the shower and just spray a crap ton of dry shampoo on your bangs. Seriously, this has been the BIGGEST lifesaver for me when traveling.

Chronic pain has this way of turning simple showers into some sort of extreme marathon mud run through the Amazon. And while normal people might think they should be fresh and clean when they have a business meeting, people with chronic pain know that it’s more important to actually show up to said business meeting.

Skipping the shower can preserve precious energy that will help you endure the trip, or, you know, maybe even have some fun later on — assuming your sleeping pill hasn’t kicked in yet.

5.  Go for the window seat

Even with the pain and the pills and the swollen feet and the missed connections, travel is still travel, and getting to ride on a plane is still pretty cool.

Honestly, window seats aren’t actually practical at all. It’s just that much harder to get up and use the bathroom after downing all that Fiji water, and you have nowhere to run when the old dude sitting next to you starts hitting on you hard core 5,000 feet in the air.  

But, window seats are something more important than practical — they’re fun. All you have to do is glance out the window and you’ll get a view most people in human history have never had the chance to experience — whether it’s a blanket of pure white clouds, a bird’s eye look at the people who call this planet home, or just a great play-by-play of the machine you’re riding in gliding toward the heavens.

It’s pretty incredible when you think about it.  

And sometimes, every once in a while, something almost magical happens, and you end up in a window seat, in an exit row, AND nobody sits next to you. It’s not quite first class, but it’s close enough.

And when you finally get to wherever you’re going, you can toss that empty bottle of Fiji into the recycling bin, grab your checked-luggage off the carrousel, throw on some sunglasses, and tackle your trip like the chronic pain warrior you are.

Bon Voyage!

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

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

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

The Painful Truth: How Patients Are Treated Shamefully

Lynn Webster, MD, is past President of the American Academy of Pain Medicine, vice president of scientific affairs at PRA Health Sciences, and one the world’s leading experts on pain management. He treated people with chronic pain for more than 30 years in the Salt Lake City, Utah area.

Dr. Webster’s new book, “The Painful Truth,” is a collection of stories involving several of his former patients, who struggled with the physical, emotional and financial toll that many chronic pain sufferers experience.  

Pain News Network editor Pat Anson recently spoke with Dr. Webster about his book.

The interview has been edited for content and clarity.

Dr. Lynn webster

Anson: Dr. Webster, you’re no longer practicing medicine, but you’re still very involved in the pain community and in research. Why write this book now at this stage of your career?

Webster: It takes a lot of time to write a book, as you can imagine, and it’s taken me four years to get to this point.  I think that at this stage in my career I can look back and put together a story about the people who I’ve taken care of for most of my career that I’m not sure I could’ve done in the middle of it. I think that’s given me the ability to look back and reflect and feel the heartache that patients have, and my inability to deliver to them everything that I wanted to deliver to them, because of all of the barriers and obstacles in healthcare.

I’m hoping that my book is going to be a seed that will contribute to a cultural change, a social movement that will bring some dignity and humanity to a large population of our country.

Anson: In your book you said the painful truth is that people in pain are treated shamefully. What did you mean by that?

Webster: When I was growing up on a farm I observed something as a young boy that always puzzled me and that was watching the injured or sick animals. We had all sorts of animals; cows, pigs, sheep, and chickens, and I could see that the injured somehow were always separated from the healthy ones. It wasn’t that the sick separated themselves from the healthy, but the healthy separated themselves from the injured or the ill.

I see that to some degree in people and I wonder if this hasn’t been a biological aspect of survival for man from the beginning. We as humans are better than that; we’re better than we may have been thousands of years ago.

Today, I think that it is shameful that people are stigmatized because they have pain, they’re isolated, and they’re denigrated often. Because of our healthcare system, at least in this country, they’re viewed as addicts, lowlife’s, and druggies. That’s rarely true and it absolutely prevents, it really contributes to the harm that pain sufferers feel towards themselves and their inability to get the type of care they need. I think that it hurts our society in so many different ways, but most importantly the people in pain.

Anson: A lot of your book is dedicated to telling the stories of some of the pain patients that you treated. Virtually every one went through what you just described, where they had trouble getting proper treatment, they had trouble with their jobs, with their families, and with their friends. Is that why you write the book in this way, so that their stories get across the point you’re trying to make?

Webster: Absolutely. It’s less important that a physician tells a story than a patient tells their story. I wanted this book to be felt by the readers, to understand what people in pain experience and the struggles they have.

Anson: You wrote that, “People in pain need to be both treated by medical professionals and supported by all the important people in their lives.” Is that happening?

Webster: No, of course not. There are some patients that have pain who have great support structures in their personal life. For example Alison, she is an individual who had what I thought was the quintessential family support. Were it not for her mother, father and sister, she could’ve gone down the path that too many others take, which would be resignation rather than resilience. It’s one where drugs are used to cope and to escape the pain, physical but also the emotional.

Too many people are separated and too few have the structure of the support system that Alison had.  Our healthcare system is abominable. It shamelessly abandons them with limited resources, limited access and actually a labeling of the individual as if they’re a leper; they have a disease that is contagious.

Anson: Is the average physician in U.S. prepared to treat chronic pain?

Webster: No. I think it’s been reported that medical schools average less than 10 hours of education on pain and even less for addiction. Yet this is the number one public health problem in America and it’s not recognized by the CDC like many other disease states have been.

And so very few physicians understand what pain is. In fact, many think that it’s just a symptom and you never die from pain which is categorically wrong. As I write in my book, pain can be as malignant as any cancer and it can be just as devastating. It can take the soul but it also takes the life of some individuals when we ignore it and when we’re unable to provide them the relief that they deserve.

Anson: If you were a young man again in medical school and trying to decide what specialty to go into, knowing what you know today, would you go into pain medicine?

Webster: Without a doubt, there is no hesitancy in this response; I love the field that I’ve been in. As an anesthesiologist I could’ve stayed in the operating room and honestly the compensation of doing that would have been far better than the path that I chose. But the rewards I’ve received from trying to make a difference and the thank you’s that I’ve received will never be matched by any kind of financial or professional recognition in any other areas.

The most rewarding part of life is really to be able to make a difference in someone else’s life. And I think I’ve been able to do that with hundreds, if not thousands of individuals. That actually is the reason for the book. I’m hoping the book is going to make a difference for more people than I could physically touch in my clinic.

Most of the people that I saw as patients were already experiencing a large amount of pain, they’ve been through the mill and many had their chronic pain for years before they came to see me. We are basically going to be taking care of them the rest of their life. We do get to know them, much like a primary care person does to a family they’ve been caring for, and so we get to know them well. They get to know us. We also begin to see the struggles that they have in the system and with the rejection of their families sometimes, their friends, the isolation. And we become the only source that’s grounded, that gives them potential hope. I took that very seriously and I think that’s why it was so rewarding for me.

Anson: You wrote that you’re neither pro-opioid or anti-opioid. What do you mean by that?

Webster: My focus has never been about making opioids available or that they should be used. In fact ten years ago I started the first national campaign about the risk of opioids. My campaign was called Zero Unintentional Overdose Deaths and you can still find that on the Internet. I did a lot of work at trying to understand the potential risks and mitigate those risks so we can prevent people from harm because I knew one day that if we couldn’t prevent people from being harmed from opioids that there would be political response to this that could be very harmful to a large number of people who are not harmed by opioids.

I think the focus should always be about what’s best for a patient and not about whether a drug or a certain treatment is good or bad. All treatments have potential risks and complications, and we need to evaluate whether or not the potential benefit outweighs the potential risk or harm and it has to be patient centered. So my focus has never been about really any treatment, but it’s always been about what’s best for the patient. I’m more anti-pain than I am pro or anti-opioid.

Anson: You prefer a multi-disciplinary approach to pain treatment?

Webster: Yes, it’s been demonstrated that for people with moderate to severe chronic pain, the type that’s not likely to be resolved, it is best managed in a multi-disciplinary, integrative approach. I see the need for more cognitive behavioral therapy. We should always tap into the different treatments that have low risk associated with them before we ever tap into something that has more risk, for example opioids or even interventional treatments we as anesthesiologists and some of the other pain specialists can provide.

Much about pain is really learning how to cope, how to deal with it from day to day and how to manage the stress that’s associated with it because stress augments all pain. And so it’s really important that we use all of the resources that we have to manage the pain and not just a single modality, certainly not opioids or spinal cord stimulators, but look at how we can manage this in a more mindful way, even as clinicians. I use that word intentionally because mindfulness is really what the doctor needs to use as much as the patient in order to optimize the treatment with the lowest risk.

Anson: Has the pendulum swung too far against use of opioids?

Webster: I think there’s too much focus on opioids by almost everyone. And what it has done is it’s forgotten about people. Opioids can cause a great deal of harm, we see way too many people harmed from opioids. But certainly a vast majority of people who have been exposed to opioids are not harmed by them and there are countless number of people, a huge number of individuals who have been on opioids for decades, that believe very strongly that they’ve improved their lives and they could not live without them.

I think the focus is in the wrong place. Our focus should not be on opioids and whether they should or should not be prescribed, but what is the best treatment for the patient? And if opioids are inappropriate as a pain treatment, then I say all of the anti-opioid people as well as the individuals who are interested in helping people with pain should come together and demand that we have more money invested in research so we can replace opioids entirely.

We cannot always know who’s going to have an addiction triggered by exposure. As I pointed out in my book, Rachel just went in for an appendectomy and that initial opioid that she received lead her down a serious, dreadful path because she didn’t have the social support to keep her from taking that path.

I think that the anti-opioid people and those of us who are interested in bringing some dignity and humanity to a large population of people in pain need to come together and insist that we have a Manhattan Project basically and to discover safer and more effective therapies that are not addictive.

Anson: The final version of National Pain Strategy will soon be released, with the goal of advancing pain research, healthcare and education in the U.S.  From what you’ve seen and heard so far about it, are they on the right track?

Webster: Yes, I think it’s an important step forward. I think that it brings most importantly the government into the picture, recognizing the need that we do something on a national scale and that alone is a big step forward.

It’s kind of like in my book there are three important words, “I believe you.” This is really the way the government can say, “I believe you.”  There is a problem in this country with the way in which we treat pain and the National Pain Strategy is about how they’re going to address that. Having the federal government say I believe you, there is a problem, let’s see if we can change the way pain is treated in this country is a huge step forward.

Anson: Thank you, Doctor Webster.

You can follow Dr. Webster on his blog, and on Twitter @LynnRWebsterMD, Facebook and LinkedIn.

Life in the Waiting Room

By Pat Akerberg, Columnist

I wonder how much of our lives we spend standing in lines or sitting in rooms waiting.  Thanks to the intractable pain of trigeminal neuralgia and severe surgical complications, it seems that my life has morphed into one big waiting room.  

For the last few years I’ve had lots of cause and reason to speculate about what purpose waiting might serve, besides trying ones’ patience in a world where everything is measured by speed, action, progress and the like. 

Usually waiting brings those things to a halt temporarily.  In fact, Webster describes waiting as a form of being “temporarily undone.”  We consider that kind of short interruption typical.   However, when being temporarily undone turns into becoming permanently undone, how one lives and copes presents a major challenge.

Normally, when we wait we stay in a place of readiness or anticipation until something expected happens or someone arrives.  Things that fit this kind of waiting are sitting in doctor’s offices waiting to be seen, waiting for our reservation at a restaurant, or waiting to advance to the front of a line.  

So expectation, anticipation, and hopefulness are typically attached to our investment in waiting. But those very hopes also have the capacity to backfire if the outcomes we desire have been thwarted or become unattainable.     

It occurs to me that the combination of chronic pain and waiting then becomes a form of “endurance” training.  Note the root word “endure." Much like the “blue plate special,” it involves accepting everything on your plate with no substitutions.  You get what you get; or as those of us who have been physically compromised phrase it, “It is what it is.” 

I wait and hope for sleep to come, real sleep without pain strikes.  I wait for my next Rx to be filled, wait for my medication to take hold, and wait to be able to speak or get nutrition in me without triggering facial pain.  I wait to schedule an appointment or test, and then wait until the day comes.  Then there’s waiting to actually see the doctor and get the test results.

Always I wait in the hopes of discovering something that might provide relief, give some encouragement, or suggest a possible new option.  

There are extra long waits for the neuropathy in my arms to calm down enough for me to type.  It takes days of waiting to be well enough to leave the house for a medical appointment or have a friend visit, along with artful calendar management. Afterwards, I often wait until the high price that those exacted subsides.   

It seems I’m always waiting, watching, and wondering all the while how I will continue to carry out this vigil of unrelenting pain day after day, after week, after month.   Scary thoughts like that can produce anxiety in even the most peaceful person.  And just like riding a wave, I wait for those thoughts to recede.

Some say that life is a school full of learning lessons.  Deep down I’ve always disliked that theory.  Having to experience what didn’t go well so you can learn more for “later” seems so backwards in benefit at times. 

That’s because in retrospect I’m aware that some things we learn don’t always offer a mulligan, a do-over, or an apparent way to benefit from the learning.  But despite that hard reality, I still suspect that our pain and waiting must have something to offer or teach us.

Time spent waiting can be repurposed into a personal workout regimen that involves active, conscious heavy lifting of a different kind.  Let’s face it – self care doesn’t just happen; it takes work!

We can learn to make our lessons learned work for us, instead of lying in wait feeling frustrated and held captive by them.  We can resolve to better prepare and focus on what we need from appointments, figure out how to better advocate for our needs, establish some boundaries, and take the hard actions that will best serve us going forward.

Remember the old question, “So, what are you waiting for?”  That question implied a sense of urgency to act and get on with it, whatever “it” represented.  Maybe our particular “getting on with it” is about learning how to step up and master a new set of skills that will strengthen our internal core to better cope with waiting in pain. 

Instead of being permanently undone by waiting, we can turn that time into honoring non-action as a selective way to wisely conserve energy.  Occasional pity parties can be replaced with reflection about what really matters to us.  We can tenderize the resistance that keeps us blocked and willingly open up, allowing ourselves to be nudged toward flexibility and tolerance.  Or use deep breaths and time-outs to relax enough to go with what is for now.     

We can apply all of this while still fervently holding on and searching for better pain relief, waiting for something hopeful to make itself known. 

In the meantime, to quote the famous Austrian poet, Rainer Maria Rilke: “The point is to live everything. Live the questions now.  Perhaps you will, gradually, without noticing it, live along some distant day into the answer.”    

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Power of Pain: Check Your Medical Bills for Errors

By Barby Ingle, Columnist

According to a study from The American Journal of Medicine, nearly two out of three bankruptcies stem from some sort of medical debt. How much of this debt is due to errors in medical bills?

According to a recent report by ABC News, one expert claimed to be finding errors on between 80–85% of the medical bills they reviewed. The Joint Commission on Accreditation of Healthcare Organizations and Medical Billing Advocates of America, national associations that check bills for consumers, say 8 out of 10 hospital bills its members scrutinize contain errors.

We tend to budget and work to slash our grocery, clothing, entertainment, and other spending, but forget to cut out-of-pocket medical costs. You can start saving money by checking your medical bills for errors and correct overcharges. Overcharges are fairly common, and correcting them can save you thousands of dollars.

While you may have no control over increases in premiums, co-payments, and deductibles, there's no reason to pay more than you should because of billing errors. Bills from doctors' offices and labs tend to have fewer mistakes, but they do happen. Mistakes can result from typos or deliberate overcharges. 

The National Health Care Anti-Fraud Association, a Washington, D.C.-based group of health insurers and state and federal law-enforcement officials, estimates that at least 3 percent of all health-care spending -- or $68 billion – is lost to fraud.

With a little time and perseverance, you may be able uncover overcharges by keeping a treatment log and reviewing bills as they arrive. Create a log of every test, treatment, and medication you receive. If you don't feel well enough to keep your own record, ask a relative or friend to do it. Even a limited list will make it easier to decipher your billing statements. 

There's no single list of fees you can check as to what your share of the cost is for insurance coverage. Insurers have a separate contract with each of your providers that determines how much they will pay. Therefore, after you schedule a procedure, test, or lab work, phone the providers to ask what they will charge and which Common Procedural Terminology (CPT) codes they will be submitting to your insurer.  

The next step is to call your insurance company to ask for an estimate of the amount your plan will cover and what you'll be responsible for paying. It’s good to get it in writing as verification or, at the minimum, ask the name of the representative and note the date and time of the phone call.  

The first statement you are likely to get is an explanation of benefits (EOB) from your insurance company or Medicare. The EOB statement will tell you the total amount being charged for your procedures, the amount your insurer is paying, and the amount you owe in deductibles and co-payments.

When bills begin to arrive from your doctors, compare the list of procedures with your notes. If you have a question about an item on a bill, phone that provider's office directly for an explanation. If charges are grouped together in broad categories—for example, all lab tests are lumped under one charge -- ask for an itemized bill if further clarification is needed.

If you find a mistake, first call your provider, explain the error, and ask someone in the billing department to make the correction. For each call you make, keep a record of the time, the name of the person you spoke with, and what you were told.

Those may be the only steps you have to take to get the matter settled. If that doesn't work, call an account representative or the fraud department of your insurance company. Next, I would suggest based on personal experience an appeal to your state consumer-protection agency or your state attorney general's office.  

If you can't get the problem resolved before the bill is due, you should pay the part of the bill not in dispute. If you find the disputed bills on your reports as unpaid accounts, write to the credit bureaus to explain the ongoing dispute. Also provide them copies of the EOB, doctor statement and any payments you did make on non-disputed charges. The bureaus must review your complaint and correct your report when proper documentation is provided.

Help protect yourself and your pocketbook so that you can help prevent the dreaded medical bankruptcy situation. So many times people just don’t get the treatment they need because they do not understand our medical billing system, or they get the treatment and overpay or get swamped with medical bills leading to bankruptcy.

Take the steps to protect yourself. A little work today will give you a more stable financial tomorrow and help you get proper and timely access to care as needed.

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

More information about Barby can be found by clicking here.

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

A Pained Life: The Power of the Coat

By Carol Levy, Columnist

I have what I call a "chronic emergency" when, because of the paralysis and lack of sensation in my left eye, it turns bright red and needs to be seen immediately.

The diagnosis is always the same, a dry eye with little punctates throughout. Sometimes in a bad state, sometimes not so bad. It has nothing whatsoever to do with my eye pain -- the trigeminal neuralgia pain that keeps me disabled.

Yet no matter how good the appointment ("Your eye is doing okay," the doctor will say), I find myself always upset, even angry, when I leave the office.

If the diagnosis was bad, the cornea eroded or ulcerated, which can mean having to let them sew it closed temporarily, my anxiety would make sense. The conundrum is, even when the eye is doing fine, I become distraught.

It finally occurred to me there is, in the recesses of my mind, an explanation for the emotional upheaval: I saw a doctor for my eye. Since he examined it, he should have cured my eye pain, right?

The thought is really senseless, but given the power that doctors have, or the power with which we invest them, it seems logical.

When I was in college I had pretensions of going to medical school. Our local hospital had a program for students like me, so we could see what life might be like as a physician.

I was given a long white coat – that usually marked one as a resident or attending. On my lapel was pinned a very prominent name pin. Underneath my name, the words: "Volunteer College Student, Pre-med".

Despite my lowly position, as soon as I put the coat on I felt different, more secure. I stood straighter. I felt powerful. And why not? The coat is a symbol.

As soon as someone walks into an exam or hospital room we make an immediate survey of them. To ourselves we pose the question, "Can I trust this person? Will they help me?" The coat answers the question. This is a doctor, he or she is here to help me.

One afternoon I was in the hospital’s ER when a woman with worsening kidney disease arrived. Her condition was tenuous at best.

Her husband cornered me, "How is my wife doing?"

I pointed to the name badge. "I'm sorry I'm just a college student. You need to talk with the doctor."

As I walked outside he ran after me. "Please. Please. Can't you just tell me? What is going to happen with my wife?"

His eyes tearing, his voice tremulous; the visible, tangible need for me to help him, to save him, was terrifying. Especially because I could be of no help.

Why couldn't, or wouldn't, he hear me? “I can't help. I am not a doctor.”

I truly believed then, as I do now, that the white coat blinded him to my words and repeated denials.  The coat means something. To many patients and their families it is a message of hope; this person will help, will make it better.

My ophthalmologist has the power of the white coat and the title. As a result, I keep expecting the impossible of him -- that he could and should fix my neurological pain.

Power is a scary thing. We have to make sure that when we give someone our trust, because they wear the coat or the title "Doctor," that we leave ourselves room to not expect the impossible or miraculous.

Like it or not, accept it or not, underneath the coat is just another human being. Just like you or I.

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.

Wear, Tear & Care: The Biomat

By Jennifer Kain Kilgore, Columnist

Some pain relief modalities are unusual to the point that they’re out in the stratosphere. It’s also true that some products only work for some people. Just because a device doesn’t offer visible results the first, second, or even third time doesn’t mean it isn’t working.

That is why I have to keep an open mind and not make snap judgments based on concepts, websites, or promotional material.

Like, for instance, today’s topic: thermotherapy and the Amethyst Richway Biomat.

Amethysts?

Yes, amethysts -- February’s birthstone -- can also be beneficial in thermotherapy.

When speaking specifically about the Biomat, I should warn you that Richway’s website isn’t slick. The idea of amethysts being associated with anything health-related is out of most people’s comfort zone.

But hey, I’ve used the Biomat for upward of five years and fall onto it whenever I have sore muscles, which is constantly. It’s such a fixture in my life that at first I didn’t even think to discuss it. So here we go!

The Biomat. Behold:

This version is the full-body mat covered with a sheet. Underneath my head is the Biomat pillow. Each session can last for five minutes or twelve hours, depending on how much time you have available. The heat can reach temperatures of 158 F° degrees. Read on to find out why that number means absolutely nothing when it comes to treating pain.

The FDA has approved the marketing of the Biomat for a whole host of things: relaxation of muscles, improvement of circulation, temporary relief of muscle pain and/or spasms, and much more. There are specific range settings for certain medical conditions, though it is generally safe.

The science involved came to being when Drs. Erwin Neher and Bert Sakmann discovered how ions flow in and out of cells, which they called the “ion channel theory.” The two scientists revolutionized the field of cell biology and won the Nobel Prize in 1991 for their shared research.

If you’re like me, you have no idea what this means. However, this ion channel theory is put into play by the Biomat’s use of negative ions, which is then complemented by far infrared spectrum therapy (or thermotherapy, like what is found in saunas) and the amethysts embedded in the outer layer of the mat. These stones have been used for thousands of years for everything from fighting the evils of drunkenness to helping with meditation.

In modern times, researchers discovered that amethysts can carry an electrical charge. (Readers, are you still with me? Hang on, we’re almost there!) So, the infrared rays pass through the amethyst layer of the mat and then become “long wavelengths capable of safely penetrating the body as deeply as seven inches.” This heats up your core body temperature, encouraging your body to detoxify.

To put all of this in English: The Biomat creates an environment in which the patient can safely enjoy negative ion therapy and infrared therapy.

What does this mean for the person actually flopped onto the mat? It means a yummy, delicious, low-grade heat. And low-grade does mean low-grade, even if it can reach 158 F° degrees.

One time, my husband wanted to use a heating pad on a strained muscle and cranked it all the way up to eleven: “Honey, I don’t think this is working. I’ve maxed it out and it’s still not warm enough.”

That’s because it doesn’t generate heat the same way a traditional heating pad does. It gets toasty, sure, but you couldn’t cook meat on top of it. At its price point, you certainly wouldn’t want to cook any sort of food on it.

I mean, look at the controls. It’s like the cockpit of an airplane.

For me, the Biomat doesn’t present a dramatic “Before and After” picture. It’s not like Tiny Tim could throw away his crutches after using this product. I can’t think of things I couldn’t do before that, with the Biomat, I can do afterward. Even so, I would never stop using it.

This product is just better than a heating pad. When you hurt all over, you want something that reaches all over. Those of us with chronic pain, we use a plethora of heating devices and creams and patches in order to soothe sore muscles. The Biomat, while extremely expensive, is a full-body restoration and relaxation device. Even the mini mat fits into a chair and covers a lot of real estate.

At the end of a long day, I look forward to sitting on the Biomat. I sleep better when I use it; in the summer, for instance, even a low-grade heat is too much for me, and I go to bed feeling stiffer and more rickety, like a broken marionette. Those are the days I truly notice a difference. Studies have been conducted regarding thermotherapy and resulted in pain decreasing significantly (concurrently with anger and depression). It has even been used to treat cancer.

So does one recline upon the Biomat and come forth as a new person? No, not after one session, two sessions, twelve sessions, or fifty sessions, but you absolutely do feel better. Your muscles are soothed. Your knots unwind, even just a little bit. Your pain is quieted for a time. And that’s enough for me.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. 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.