There is No 'Epidemic' of Painkiller Overdoses

By Ken McKim

There is no "epidemic" of opioid overdoses. If 16,000 deaths in a year is an epidemic, then we really need to focus on the pandemic that is the over 100 million people in the U.S. who suffer from chronic pain.

For example, car crash fatalities in 2013 claimed more lives than opioid overdoses (there were 30,057 fatal motor vehicle crashes in the United States in 2013 in which 32,719 deaths occurred according to IIHS). As this qualifies as an epidemic by some people's twisted logic, I suggest we handle reducing car crash fatalities in the same manner that we regulate the prescribing of painkillers.

Effective immediately, you will have to own your car for two months before you can get a license to drive it. To obtain a driver's license, you must first establish a history with the DMV by visiting them at least two times per month for two months, paying $40 per visit during the two-month period you are waiting to get approved for your license.

Once you have your driver's license, you will only be able to purchase gasoline at particular gas station with a signed fuel-certificate from the DMV, which will allow you to purchase what the DMV thinks is an adequate supply of gas for a 30-day period.

For each new 30-day supply of gasoline you must obtain a new fuel certificate from the DMV, which will require another $40/five-hour appointment at the DMV.

If you try to take your DMV fuel-certificate to a different gas station than you normally use, your fuel-certificate may be refused and your name entered into a national database as someone guilty of "fuel seeking behavior."

Additionally, you will not be able to refill your gas supply after 3PM on Fridays, weekends or holidays. Your gas allotment must last for the full 30-day time-frame specified by the DMV. If you run out of gas before that 30-day period is up, you will not be able to get another fuel-certificate until the 30-day calendar period has ended. So remember, you should not be driving anywhere except to and from work, with possibly a once a week trip to the grocery store.

NOTE: Asking for more than your allotted fuel allowance will also constitute "fuel seeking behavior" and the DMV may choose to no longer see you.

The DMV also reserves the right to randomly smog check your vehicle at any time. If your vehicle fails the smog inspection, your driver's license will immediately be revoked.

NOTE: You must pay the cost of the smog inspection yourself.

I'm sure this will result in an immediate drop in automobile deaths. You're welcome.

This column is republished with permission from Ken McKim’s website, “Don’t Punish Pain.”

Ken began advocating for pain patients when his wife was diagnosed with Crohn’s disease – and he came to realize that the chronically ill were often stigmatized by society. That realization led him to make a 32-minute video called "The Slow Death of Compassion for the Chronically Ill"

Ken has a series of other informative videos on You Tube.

Five Ways TIME Gets Pain Pills So Wrong

By Crystal Lindell, Columnist

Access to pain pills is not a cause I chose. I didn’t wake up one day and think, “Gee, more people need opioids.”

No, access to pain pills is a cause that chose me. Because I really did wake up one day two and half years ago, and say, “What is wrong with me? Why do I suddenly have insane pain in my ribs?”

It’s a pain that never went away. And for months, the doctors didn’t take me seriously. They gave me prescription-strength Advil, Lidoderm patches, and told me to wear looser bras.

None of that worked.

So, for weeks on end, the pain got worse and worse, while I tried multiple doctors, trying to find someone who could help.

I was in so much pain that I would often lay down on the ground mid-sentence because I didn’t have it in me to keep standing. The pain was just that overwhelming.

And at night, after trying to survive the day, I would lay in bed and plan ways to commit suicide. I wish I was exaggerating.

Finally, I found a pain specialist who put me on hydrocodone. At the time I had no idea that opioids were controversial. I was just happy to finally have found something that gave me relief.

The problem with hydrocodone though is that it comes with these crazy spikes. So you take a pill, it relieves the pain and then it completely wears off within a couple hours — and you to wait six hours for your next dose. It’s a horrible way to live.

I’m also on a time-released morphine that lasts about 8 hours. I take it three times a day — so I am always on an opioid, 24 hours a day. And then, on top of that, I also take hydrocodone as needed.

I pretty much always need it.

The pain still gets bad. But now, because of the pain pills, I have times when I am nearly pain free. Times when I can catch my breath and remember that life is worth living.

Opioids have literally saved my life.

Which is why I’m so upset about TIME magazine’s cover story about the “worst addiction crisis America has ever seen.” 

I realized when I read the article that I am spoiled by my Facebook news feed. I tend to follow chronic pain groups, so most of the information I see is about how chronic pain patients need access to these drugs. As a result, I’ve been lulled into thinking that the chronic pain community is actually making progress on this issue.

Apparently, we aren’t.

And it is articles like this that make it that much harder for pain patients like me to get the relief they need.

Let’s break down what it gets so wrong, with some quotes from the report:

1.    It implies time-released morphine is basically heroin.

“The longer patients stay on the drugs, which are chemically related to heroin and trigger a similar biological response, including euphoria, the higher the chances users will become addicted.”

Aside from the excessive number of commas, there are so many infuriating things about this sentence. 

While the drugs can give you a “high” feeling when you first start taking them, I can promise you — after being on morphine all day, every day for over a year — that the “high” is only a short-term side effect.

Also, comparing the drugs I take to heroin is like saying that both TIME and US Weekly are similar because they both require reading. Yes, that’s true. But that’s about all they have in common.

2. The article focuses on how much the drug companies are supposedly making on these meds.

“The total annual sales for opioids in the U.S. has grown over 20 years to more than $8 billion.”

While there have been some new meds on the market, like Zohydro, the pills that I take and the pills most of the people I know take, are generic. Morphine isn’t exactly a brand name.

Giving people relief from horrific, daily pain is not part of some drug company conspiracy. It’s called compassion.

3. It devalues how horrible pain can be.

“The standard-setting Joint Commission on Accreditation of Health Care Organizations in 1999 required doctors to measure pain as part of their basic assessment of a patient’s health, which had the effect of elevating pain the same level of importance as objective measurements like temperature and heart rate.”

The author writes that like it’s a bad thing. I’m here to tell you, it’s not. Pain is such a huge part of your health. And managing it is just as important as managing your blood pressure or your insulin level.

Having too much pain will ruin your life and your body just like any other health issue.

Living with chronic pain is like living every day of your life with the same amount of pain you would wake up with after an extensive surgery, or a horrific car accident, or a stabbing.

Anyone in those situations would be given adequate pain relief. And, just because people with chronic pain have that same pain every day, all day, doesn’t mean they don’t deserve the same relief.

4. It implies that anyone on long-term pain medications is an “addict.”

“With America awash in opioids for the foreseeable future, health care providers and public officials are searching for ways to help addicts get clean.”

I don’t need to “get clean.” I need a cure, but there isn’t one for what I have. The next best thing is daily pain relief. Going off all my meds would be catastrophic for me, not because I’m addicted, but because I would end up stuck on the couch for the rest of my life in too much pain to shower.

Also, we need to take a second to talk about the word “addicted.” It is very different from what’s actually happening for most people, which is “dependence.”

Dependence is what happens when you take lots of different types of drugs long-term. Your body becomes dependent, so going off them cold turkey would be hell. However, if you taper off it, you’re good. Just like anti-depressants. And nobody ever says people are “addicted to anti-depressants.”

Addiction is when you start to crave that high feeling you get the first few times you take the drug, so you start taking higher and higher doses seeking it out. Sort of like how all of us are dependent on food, while a select few are addicted.

5. The authors don’t mention any alternatives.

For those enduring chronic pain, the real-life alternative to not having adequate pain pills is suicide.

Articles like this just make it that much harder for people with chronic pain to get the medications they need. If you want to see the suicide rate jump, just take away the medications that so many people rely on to do even simple things, like make dinner or do a load of laundry.

Look, I’m not saying everyone with a cold should get a prescription for morphine. I’m just saying that there are millions of people out there who need these drugs. And more regulation just gets in the way of decisions that doctors and patients should make together to help those who are suffering cope with their pain. The government should never be in anyone’s doctor’s appointment.

At the end of the day, I guess I just wish that TIME had talked to even one chronic pain patient for the article. There are millions of us out here, responsibly using opioids long-term, and we would have loved to chat with TIME.

If only they had asked.

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.

Invisible Illness: A Blessing or Burden?

(Editor’s note: Pain News Network is pleased to welcome Pat Akerberg as a columnist. Pat is an executive coach and business consultant who suffers from trigeminal neuralgia, a rare facial pain disorder. She shared her story recently in a column.)

By Pat Akerberg, Columnist

Even though we can’t see some things, they still exist nonetheless.  Take imperceptible things like belief, faith, hope, or even the air that we breathe.  Our indirect experience of those things comes from a hidden world.  I suppose we could view their invisibility as either a blessing or a burden.

Sometimes invisibility is a deliberate strategy intended to hide or protect.  I readily count make-up as a blessing designed to hide or conceal.  Military clothing is a tactic borrowed from nature that camouflages for protection. 

The question that I ask is posed in the context of living with invisible chronic illness and/or pain, certainly not felt indirectly or deliberately designed. 

So ask yourself: Is the invisible illness and pain that you live with a blessing or a burden?

I’d have to answer “yes” to both blessing and burden.  It’s not either one or the other for me; it’s  both -- a burden that also offers some blessings.

In the burden category, explaining my neurological disorder to raise awareness and educate others can require energy that I don’t always have.  This is especially true if you have a rare illness like mine that triggers unseen pain when you speak. 

A SCENE FROM THE 1933 MOVIE "THE INVISIBLE MAN"

It’s a real Catch-22, because emotionally I desire the understanding. However, there’s a high price physically in trying to get some level of it.

Then there are the not always successful attempts to find an effective way of answering the oft dreaded questions, like:

 How are you?

 Are you feeling better now (or yet)?

 You don’t seem to be getting better. Have you thought of trying (fill in the blank)? 

Six years later and my continual test drives of better ways to answer those questions -- that don’t shut down a conversation or open it up to redundant, ill-fitting advice -- still take lots of practice, just like a workout routine. 

High on my burden list would be all the small, insidious ways in which I extend myself to fit in or help others be more comfortable around someone who doesn’t look sick or in pain -- yet won’t get “back to normal” again. 

Sometimes I say yes to invites so as not to disappoint someone close.  I minimize the level or graphic description of pain that I’m in; contort my facial expression into a smile or semi-laugh to keep rapport; or attempt to eat something someone brought, even though it physically pains me to do those things.

Longing for Connections

You’re probably asking, “Why, Pat, do you do them if they can be a burden? “

It’s a fair question. 

The short answer is because they relate to the blessing part of my burden.  Living with invisible chronic pain is a great social isolator; one that prescriptions don’t treat. 

To the contrary, human connection for me serves as a much needed lubricant that primes my psychological and emotional gears to work better.  So I’m motivated to interact in spite of the price.  And, realistically, when I can, I do. And when I can’t, I don’t.   

In talking with my trigeminal neuralgia (TN) friends, we have remarked how it would be easier if our plight and handicaps were visible.  Maybe then, we fantasize, the understanding and compassion that we seek and need would be more forthcoming. 

We have also wondered if our experience of being misunderstood would be different if we had an illness or disease that had a medical label more widely recognized, publicized, or even scary. 

We witness that even the terrifying descriptions used for TN, like “the worst pain known to medical practice” or “the suicide disease” seem to diminish in stature in comparison to those. 

It’s maddening and confounding how something so torturous going on inside of us rarely registers to that extent in our external world. 

Yet, at the same time, these longings of ours do contain the special favor of not attracting the kind of unfavorable attention that we don’t want.  Those who don’t know us aren’t as likely to stare at us, give us those judgmental looks, or jump to conclusions about our health or wellness based solely on what they see. 

So in that sense, I have come to view the invisibility of TN as a mixed blessing that protects me from those hurtful, unwarranted glances.

Having the luxury of being able to control how much information that I want to share about my particular affliction is another blessing I receive from the invisibility of it.  That includes my personal struggles with the burden of it all. 

That’s a freedom of choice that many with visible illnesses, handicaps, and disabilities have to a much lesser degree. 

Thankfully, I am learning to accept the trade-offs involved with this odd paradoxical mix and view them as blessings in disguise.  They are unseen and sincerely felt.

I offer a few of my answers, but in no way profess to have yours.  Sometimes asking a question can serve as a catalyst to search beneath the surface of our particular medical labels. 

One of my favorite professors always challenged his students to “mine for the gold.”    Maybe this question will uncover some important nuggets for you. 

We are still offered the potential to learn from each other and grow in different ways, despite our incapacities and similar challenges.  That’s another blessing in my book. 

Pat Akerberg lives in Florida. 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.

How to Use Medical Marijuana Without Smoking

By Ellen Lenox Smith, Columnist

It can be overwhelming to try anything new, especially something like medical marijuana. Many people are afraid to try it – not only because of the stigma associated with cannabis – but the smell that comes from smoking it.  

There are many different ways besides smoking that I have learned to administer medical marijuana. But remember, I am not an expert, just a woman who was desperately trying to find a solution as to how to address her pain. I have been learning this slowly, through reading, help from others, and trial and error.  

Due to having sarcoidosis in my chest, smoking anything could be fatal. I had to find an alternative method that I could use to safely administer medical marijuana. Acting on the advice of a friend, I started my journey utilizing this medicine in an oil form. 

Oils             

ELLEN LENOX SMITH

I start by grinding up dried marijuana buds in a simple coffee grinder, always being careful to use only an indica strain of cannabis. Indica plants give you pain relief and allow you to rest. I take my oil at night to help me to sleep. If I ever took this same oil during the day, I would be sleepy and groggy.

Next, I heat up oil (I use extra virgin olive oil, but you can use other types you prefer) and when it gets hot, but not to a boil, I sprinkle the ground product over the oil. When you get it just right, there is a sound similar to putting an Alka Seltzer tablet in water, and you can hear the THC and CBD being released into the oil. 

You then allow the oil to cool, strain it, and store it away from the sun. It lasts for a long time.

At night, one hour before I want to go to sleep, I take my medication. I presently use one teaspoon of the oil mixed with some applesauce or something I enjoy eating. You do not want to take this on an empty stomach. 

You should start slowly with a small amount, and gradually introduce the medication to your body. If you need to increase the dose, you can add a quarter of a teaspoon until you have reached an appropriate level. When you can sleep through the night, and awake relatively clear headed and not groggy --then you know your dose is appropriate.  

Keep in mind that by utilizing this method the medication takes time to kick in because it is being ingested. Plan your evening carefully and be sure to be ready for bed once you have medicated. It usually takes 30-60 minutes. We all react differently, so be safe.

If you want to make this oil even easier, then purchase a machine called Magical Butter, and it will do all the work for you after you grind, measure and plug it in. It costs about $175.

Vaporizers

Most days, I do not need any medication after having had a good night’s sleep. But on the days I need something else for help, I find vaporizing simple and easy. 

I have found two portable vaporizers that I love. One is called the Vape-or-Smoke and the other is named PAX. They require a small amount of marijuana, are small enough to fit in a purse, and are simple to use. 

Many people use the Volcano, which is a larger, table top model seen in the picture to the right. There are so many types; you just have to decide what you are willing to spend. Some vaporizers cost several hundred dollars.

Now be careful, for you want to vaporize the correct type of cannabis. I could list all fifteen strains we grow, but I can tell you that there would be no guarantee they would be your magic.

The main thing to remember is if you are going to vaporize during the day, then you need to use a sativa strain of cannabis. This type of plant allows you to gain pain relief and also helps to stimulate you and keep you awake, not sleep like the indica plant does. If I vaporized an indica during the day, I would want to sleep. So be careful you have selected the correct type of plant.

Use a grinder to prepare the marijuana and follow the directions on the vaporizer. You will notice when you first use a vaporizer that it looks like you are blowing out smoke. However, what you are observing is actually a vapor. 

I have permission from my pulmonologist to vaporize because it is safe to use. Take a simple hit, see how you feel in a few minutes, and if you need more to help with the pain, just use it one puff at a time to find your needed dose. This method should provide you with short, yet quick relief, unlike the oil that takes awhile to kick in, but last so much longer.

Tinctures

Sometimes I also use a tincture during the day.  As with vaporizing, it is fast acting and also fast to leave the system. We have recipes for a few types. One is made with alcohol, such as lemon schnapps and it takes two months to cure. The other is made with glycerin and can be made in less than an hour in a crock pot or using the Magical Butter machine. 

When making a tincture, you again have to be careful you are using the correct strain. I make day tincture, so I only use a sativa plant. Alcohol based tinctures require the product to be put into a jar, the alcohol of choice poured over it, and then covered tightly. 

Twice a day, take a moment to shake the jar. After two months, the THC and CBD are released, and you should strain and store the liquid away from the sun.

The tincture can be taken one teaspoon at a time or with an eye-dropper, putting a few drops under the tongue or in the side of the cheek. You hold it there for about 20 seconds and then swallow. Feel free to repeat this every half hour. Remember, this is made with the plant that stimulates, so do not take at night!

The glycerin recipe is easy and can be made in an hour using a crock pot. You administer it the same way as above. The difference with this method is it has no alcohol and tastes sweet -- even though a diabetic can use it for it is not sugar based. 

It’s just a matter of preference of which type you prefer and how long you want to wait for the finished product to use.

Topical Ointments

We have had good success using topical ointments. The recipes are simple and the results are amazing. I know people with Complex Regional Pain Syndrome who have turned their lives around with topicals. 

All it requires is the tincture (not the oil), some bees wax, and then we add essential oils to mask any marijuana odor. Peppermint extract seems to be the favorite additive -- it provides a tingling sensation as it absorbs into the skin along with the cannabis.

Recipes for topicals, tinctures, and oils can all be found on our website at the end of this article.

As stated in the beginning, I am not an expert on all the various way to administer medical marijuana. Many people love using edibles, such as brownies and cookies, but I live with so many food allergies that I have no interest in even trying them. 

It also concerns me, being so drug reactive, how much I should eat or not eat because I don’t feel the effects immediately. Like the oil, edibles are slow to activate and sometimes people eat more than they should -- and suddenly they’re shocked at how strange they feel. 

Go slowly and give it time to kick in before deciding you need to eat more!

We try to steer people away from smoking to keep the lungs as safe as possible. However, if that is the only way that works for you and the smell is not an issue for you, then smoking is one of the faster ways to get pain relief from marijuana.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart 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.

Power of Pain: There is Great Reason for Hope

(Editor’s note: Pain News Network is pleased to welcome Barby Ingle as our newest columnist. Some of you may already know Barby from her work with the Power of Pain Foundation, but you may not know the story behind her activism on behalf of pain sufferers. You can read all about it here.)

By Barby Ingle, Columnist

The good news is I have taken control of my chronic pain diseases. It has been a long tough road -- 18 years of living in the healthcare system have taught me to stand up for myself and learn to be my own best advocate.

It all began when I developed endometriosis in 1997 and worsened when I developed Reflex Sympathetic Dystrophy (RSD) after a minor car accident in 2002. I thought endometriosis was bad until I got it RSD.

Prior to the accident, I was a business owner and head coach at Washington State University for the cheer and dance program. I was living a great life and was successful in managing the endometriosis through medication and surgery. After the accident I had shoulder pain. Even though there were no signs of an injury on x-rays or MRI images, doctors suggested I have shoulder surgery. This surgery did not fix the pain and only made things worse.

Doctors were stumped and sent me a TOS specialist. After more tests the doctor realized I needed surgery again because bone spurs from the first TOS surgery were going into my lung and nerve bundles in my right shoulder.

BARBY INGLE

In 2005, I was finally diagnosed with RSD and learned that TOS was a symptom of RSD. By the time of that diagnosis, I had been treated by 42 other healthcare providers and been told many random strange things, from “It’s all in your head” to “Your boobs are too big. You should get a breast reduction.”

My RSD symptoms were called “bizarre” by one prominent neurovascular surgeon. Some of those symptoms included severe pain, sweating, skin discoloration, sensitivity to touch and light breezes, dizziness, vomiting, syncope, and gastrointestinal issues.

Every procedure was a new trauma that increased my pain and other symptoms.

Learning about RSD

The 43rd provider finally looked at my records in their entirety before coming into the exam room. He was the one to figure out I had RSD and give me some of my first answers. I remember being so excited because I finally had a name for what I was dealing with.                                                     

But once I started to research RSD on the internet, that excitement turned to fear. I took the time to find out who the best providers were and found ways to get to see them. I have now been treated by over 100 providers since 1997.

Having experienced painful injuries many times in my life, I thought all pain was the same. Now, I know there is a difference. I learned that you can have more than one type of pain at the same time (burning, stabbing, cutting, electric, etc.). I feel bad for the people I knew with chronic pain before my experience began. I thought they were constant complainers. I was wrong.

I was humbled as I needed help with ordinary activities of daily living, like dressing, bathing, traveling, cooking, shopping, and walking. What I was going through was traumatic and depressing. The burning pain was never ending.

Living with pain is a big life challenge. It has been hard. Through this challenge I have learned we all have a right to proper care and treatment to ease our pain. Don't stop until you get the help you need.

Remission

As of 2009, I have been in and out of remission. What I found that worked best for me is the use of an oral orthotic (a mouth device that lowers brain stem inflammation), IV infusion therapy, aqua therapy, heat, traction, better posture, improved eating habits, and stretching exercises. There was not a one size fits all cure for me or any of the thousands of patients I have met in my pain journey.

I have come in and out of remission since then. In the beginning I would be so afraid that this time the doctor would not be able to help me. Now I know that if one doctor can’t help there are others that can. Not all providers offer the same knowledge or access to treatments that may be right for me. I have to research for myself to find out what I am comfortable going through.

We all have to learn to be the chief of staff of our medical team. Be empowered patients and live life to the fullest each moment. Don’t feel guilt if you can’t do something right now -- make it a goal to accomplish once you are able.

When you think it can’t get any worse, it can. And when you think is can never get better, it can. Take life moment by moment and know that we all have ups and downs. Never give up and never give in!

My drive to turn pain into power comes from my motivation to find a cure for RSD. No one should have to go through my experience. 

Barby Ingle is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation.

Barby is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found by clicking here and at the Power of Pain 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.

The Importance of Awareness

By Jennifer Martin, Columnist

The other day I was made aware of a malicious Facebook post that was written about an acquaintance who was making others aware that it was World IBD Day.  She was simply educating others about inflammatory bowel disease and the difficulties that arise from having such a condition. 

The Facebook poster declared how tired he was of people posting about their diseases and trying to gain pity from others. 

The day before, another poster with a J-pouch due to ulcerative colitis mentioned that while she was leaving the bathroom a woman told her that she should use a private bathroom because what she was doing was disgusting. 

Not long before this, a chronic pain patient of mine told me she received a dirty look from someone in a grocery store parking lot because she parked in a handicap parking space, even though her handicap placard was hanging clearly from her rear-view mirror.

The same day, another patient told me that he doesn’t feel like his doctor hears him when he tells him how much pain he is in.

Unfortunately, this kind of misunderstanding and ignorance happens all of the time. People with invisible chronic pain or chronic illnesses are often the recipients of hurtful words or spiteful looks from people with have no clue what they are going through on the inside.

This is why awareness is so important. About half of all American adults -- 117 million people --have one or more chronic health conditions, yet many of us are still largely misunderstood.  We may be feeling awful, but typically we look fine from the outside. 

Many people think chronic pain patients are addicts who just want drugs.  Some who don’t understand Complex Regional Pain Syndrome (CRPS/RSD) think it’s a psychological problem.  And others believe that fibromyalgia isn’t real and that patients only want sympathy.

It is important for people to have a better understanding of what we’re going through so that the stigmas, hurtful words, and malevolent looks begin to fade.  That cannot happen if we remain silent.

May is a big awareness month for chronic pain and chronic illness:

Fibromyalgia and Chronic Pain Awareness Day was May 12.

World IBD day was May 19.

World MS day is May 27.

May is also Arthritis Awareness month.

So keep wearing those awareness t-shirts -- and keep blogging, educating, and posting.  Will it help?  I am hopeful.

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.

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: Where Can I Get Help?

By Carol Levy, Columnist

Pain News Network recently featured a story about a California woman with chronic pain who is in such dire financial straits that she resorted to asking for help through the crowdfunding site GoFundMe.

After reading the article I realized how many of us are in the same or a similar situation.  I often read and hear the laments:

"There is no one I can go to for help."

"I am alone in this and have nowhere to turn."

"Where do I go for help?"

I have been there myself.

But there are help resources out there once you know where to turn. Here are some of them:

Meals on Wheels provides meals, companionship and safety checks to seniors and others with mobility issues.

Dental Lifeline Network  provides donated dental services. They will connect you with a dentist who will make up a treatment plan for you and complete all the work he feels you need.  The downside is you can only use this service once. 

1-800-Charity Cars provides donated vehicles for free to a wide array of individuals. Their list of those they help include the "medically needy."

The National Association of Free & Charitable Clinics provides a range of medical, dental, pharmacy, vision and behavioral health services to economically disadvantaged Americans. Their website can help you find a free or charitable clinic near you.

Social Security’s Ticket to Work program provides work opportunities to people on disability.

This Google search page has information on dozens of programs that offer free lifeline cell phones. 

PsychCentral has a list of hotlines available 24 hours a day that can help you with whatever assistance you need from substance abuse to domestic violence issues.

Suicide Prevention Lifeline links crisis centers across the United States into one national chat network that provides emotional support, crisis intervention, and suicide prevention services.

Suicide.org has a listing of suicide hotlines by state.

The Samaritans is a hotline that offers emotional support to people dealing with every kind of problem, including illness, trauma and loss.

The National Health Information Center has an extensive list of toll free hotlines for health information.

In addition, you can call your state capitol or local township to find out about local social services, which may include counseling, food, setting you up with an aide, and other in-house help.

Often a local senior center will provide services.  At mine there are professionals who come in every so often to offer free assistance, such as a lawyer who deals with legal issues, accountants who help with taxes, and insurance agents who can help sort out what is the best plan for you. They may also have members who are willing to provide transportation at low or no cost, or other services like cleaning and making meals.

Also, if you live near a major university, often their professional schools (legal, dental, business, etc.) will offer reduced cost services where faculty will double check the work they do for you.

Our lives are hard enough as it is.  These various numbers, services and people can help to make them a little easier.

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.

Hillary Clinton: Please Be Responsible for Opioids

By Lynn R. Webster, MD

While Presidential candidate Hillary Clinton only recently announced her bid for office in 2016, she has already declared a few important issues on her presidential agenda, including the ever-important opioid crisis in the United States.

Many are chiming in to offer their best solutions to curbing the opioid abuse epidemic; sadly, many of the proposed solutions fail to promote and fund safer alternative therapies for people suffering from chronic pain who rely on opioids to live a semblance of a normal life.

I applaud Clinton’s desire to work toward a safer, opioid-free world. It’s a goal we should all aspire to. In order to realize it, however, we must not forget those people who rely on opioids to get through the day in the absence of alternative treatments.

Here is what Hillary Clinton must consider as she seeks to curb opioid abuse:

Redefine the prescription opioid problem as the chronic pain problem

Prescription opioids have garnered a great deal of attention for the possible health risks involved in taking the drug. While it is easy to get caught up in the whirlwind of bad press, it is still important to remember why opioids are such a prominent treatment form in the first place.

More than 100 million people in the United States suffer from chronic pain, meaning a third of the entire country may rely on some form of medication to make their lives better. Pain ranges in severity, with many suffering from severe pain that makes it difficult to live a normal life.

While no medical professional advocates that opioids should be the first line of defense, in some cases, they happen to be the only thing that works for a patient. Trying to end opioid abuse without addressing the needs of those who rely on the drug may make the problem of chronic pain worse.

Understand why prescription opioids have risen in popularity

In 2007, Americans spent $34 billion in out of pocket expenses to cover the cost of alternative forms chronic pain treatment.  To be clear, opioids are not the only means of treating chronic pain. Alternative therapies exist, but are woefully underfunded by payers. As a result, many patients with severe chronic pain, those who struggle to get out of bed, who sometimes lose their jobs, must rely only on what their insurance covers – in most cases, that form of treatment is opioids.

The chronic pain community needs access to safer alternative therapies. We need to invest in research to bring even more alternative therapies to the market, and crucially, insurance companies must then cover those alternative forms of care.

In 2012 the National Institutes of Health (NIH) spent only about 400 million dollars on chronic pain conditions but more than 2.5 billion dollars was spent on drug and other substance research.  We certainly need to find safer and more effective therapies for addiction but some of the current cost associated with substance abuse it due to the limited options to treat the number one public health problem in America: pain.

Stop stigmatizing patients who currently rely on opioids

Alternative forms of medication that could potentially help chronic pain patients and decrease the demand for opioids remain underfunded and under-researched. Despite being one of the largest health researchers and sponsored by the U.S. Department of Health and Human Services (HHS), the NIH continues to operate on a shoestring budget.

Despite the lack of options for alternative therapies for chronic pain, the topic of opioid abuse has become a popular topic in the media, and sadly, caused an increase in stigmatization of patients who use opioids for pain management. Patients have reported reluctant doctors and pharmacists unwilling to prescribe necessary medications.

The DEA has rescheduled hydrocodone as a Schedule II drug, leading to a series of unintended consequences with which patients today are left to suffer. Many patients report feeling like drug addicts for simply trying to fill their legally obtained prescriptions.

Require all opioids to be abuse-deterrent

Abuse deterrent formulations (ADF) have been shown to curb some forms of opioid abuse, while maintaining the benefits for patients that need the drug.  Unfortunately payers have priced these safer formulations so that there is little incentive for market adoption.  HHS should lead the way and negotiate deals with manufactures to make ADFs no more expensive than generic alternatives to patients.

Remove methadone as a “preferred” drug

While the use of methadone as an analgesic for chronic pain has expanded in recent years, it shows up in mortality reports with a higher frequency than other opioids. Despite the evident risk associated with this drug, many states have listed it as a “preferred” analgesic in treating severe chronic pain, largely due to its low cost and savings for publicly funded health plans.

The American Academy of Pain Medicine holds that methadone should not be a preferred drug unless special education is provided, and that it should never be the first choice in treating chronic pain.

The opioid crisis is not a black and white issue. Until we stop treating it as such, we will not be able to tackle the problem at its root. Eliminating opioids does not alleviate the problem, end patient suffering or acknowledge what the true issue is. Millions of Americans suffer from chronic pain, but very few have access to multiple options to manage their pain.

Through an increase in funding and research of alternative therapies, implementation of ADF’s and greater coverage by payers, we can finally begin to treat the opioid epidemic in a safe and responsible way – a way that does not hurt the millions of Americans who rely on opioids to get out of bed, to play with their children, to get through the day.

Lynn R. Webster, MD, is Past President of the American Academy of Pain Medicine, and vice president of scientific affairs at PRA Health Sciences. He is a Pain Medicine News editorial board member and author of a forthcoming book, “The Painful Truth.” He lives in Salt Lake City. Follow him on Twitter @LynnRWebsterMD, Facebook and LinkedIn.

This column is republished with permission from Dr. Webster’s blog.

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

My Life with Trigeminal Neuralgia

By Pat Akerberg

Most of us don’t focus on the idea of pain until we find ourselves in it for one reason or another.  We just know that we’re glad when it’s gone. 

But what if it doesn’t go away? 

Challenging conditions occur for some of us that catapult us into a life of chronic, intractable pain.  You know you are one of the unlucky ones when meetings with doctors end with statements like:

“There is nothing we can do.”

“You’ll just have to live with it.”

“It’s all in your head.”

That last statement is the one that literally began my life-altering journey with pain. An outgoing, upbeat owner of a thriving consulting practice, I was on a business trip enjoying dinner with a favorite client six years ago.  My meal started with a typical salad.  By the second bite, I was writhing through volleys of shocking pain shooting through the roots of my teeth on my left side.

PAT AKERBERG

I later learned that this neurological disorder of the 5th cranial nerve was trigeminal neuralgia -- also known as the “suicide disease” or “worst pain known to mankind.”  I had to cut my trip short and fly home to see my dentist, pronto.  Little did I know then that this event would mark the end my of work life, one of the growing list of ongoing losses for me to grieve.

I was both unfortunate and fortunate during my short search to find a proper diagnosis, one that often takes many months or years to receive.  Unfortunate in that trigeminal neuralgia (TN) is so rare, the cause is unknown, treatments do not offer a permanent cure, and sometimes create more pain issues.  Fortunate in that I escaped the needless root canals or extractions that most are subjected to prior to an accurate diagnosis.

Research became my middle name as I sought to learn everything that I could to get my problem “fixed.” I was driven to get back to my career and serve my clients.  Research collectively pointed to an invasive brain surgery done by a neurosurgeon.  It seemed to have the best odds for a cure, with the least chance of further damage to the nerve. 

Unfortunately, permanent nerve damage is exactly what occurred.  Imagine my concern when I awoke from surgery with my face immovable; frozen like a block of concrete, numb with pulling sensations, and the stabbing pain in my teeth now constant. 

The neurosurgeon who held out a sure cure quickly distanced himself -- perceiving me as “too anxious” about the devastating impairments and pain frequency.  With dispatch and without explanation, my case was closed.    

Left on my own to seek out answers and help, I pursued consultations with several other leading TN experts.  With honesty and compassion, each one delivered the same bad news: medicine and science have not caught up with how to effectively treat a damaged trigeminal nerve.  Advising against further procedures, my lifetime membership into the intractable pain club was validated. 

“Invisible” Pain

Being a co-habitant with an intrusive bully like intractable pain has been all consuming.  Any illusions I had of control have been shattered. 

There’s also an invisible aspect to my pain that can create issues with believability.

Most people are unaware of orphan diseases like trigeminal neuralgia, and have little understanding and compassion towards those who have them. 

Family members, who are turned into caregivers overnight, scramble to figure out how to relate to a frightening pain condition.  Many close friends eventually drift away when you don’t get better, are unable to keep up, or cancel plans too often. And busy medical professionals can skeptically question what they cannot see or touch.  

That’s partly because we are so often judged by how we look versus what we say. If we don’t look sick or in pain, then the erroneous assumption follows that we can’t be that bad.  But we can be! 

When I report that I am unable to chew solid food (eat out), talk, smile, laugh (socialize), move my face or have anything touch it (brush teeth, take walks, exercise) without triggering unbearable facial pain; most people can’t square such an unthinkable loss of natural life functions with how I appear to them.

I agree. It is hard to fathom, yet with neuropathic pain disorders like TN, simple things that normally don’t cause pain now do. Combine those quality of life diminishments and misconceptions with disabling pain and the ingredients for a lonely, isolated existence can’t be denied. 

Often I feel as if I am living in an inescapable bubble, missing out while the rest of the world goes by without me. It takes tremendous fortitude daily for me to counter those negative effects in my life with meaningful ones.  Some days are more successful than others. 

Like most who suffer with chronic pain, the search for any kind of relief becomes a way to keep hope alive.  In the meantime, I do find it helpful to post, blog, and reach out to connect with people like myself whenever I can.  It reminds me that I am not alone in this often debilitating journey.

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum.

Pat is also a supporter of the Trigeminal Neuralgia Research Foundation.

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org.

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

My Life with Spinal Stenosis

By Brandis Standridge

I was a young, 16-year old track athlete the first time I experienced my back “going out.” The spasms, the pain and the sciatica were horrible. 

My family physician did everything right and I learned how to manage my symptoms for the next twenty years, although each time by back went out it was a little worse than the last.

At 37, my back went out again. I found out that I had severe spinal stenosis on multiple levels due to facet and ligament hypertrophy. Basically, osteoarthritis had overgrown the ligaments and joints in my spine so badly that it was crushing my spinal cord on 10 levels.

I was referred to several pain management specialists.  All of them were horrible.  I had to fill out lengthy questionnaires and they refused to give me pain medication unless I consented to their procedures.

They pushed for spinal injections and for fusion surgery, even while admitting the surgery had only a 50/50 success rate. I refused.

Never in my entire life have I felt as segregated, helpless, victimized, and scared as I have dealing with these specialized "professionals.” After the last one, I returned to my family physician in tears and told her I would rather live in agony than be forced into procedures and treated as if I were some local street addict before they even knew me.

BRANDIS STANDRIDGE

Two years ago I had to move.  My doctor gave me a letter of reference, medical and MRI records, and a report from my state pharmacy board. All of this was to help the new doctor with the vetting process to help get me treatment. But, it started all over again; the assumptions, ultimatums, and power plays: "If you don't do this, you won't get medication.”

Once again I refused to be without choices or a voice of my own.

I am a former social worker.  I know how to advocate and refuse to be pushed into procedures that will more than likely hurt me more in the long and short term.  I refuse to let doctors push me into places where I have no voice, where I am not able to be a member of my medical treatment team.

I did eventually find a doctor. Our relationship is a bit tense at times but I am receiving the care that I choose.

We have a right to choose our medical procedures without fear of punishment. We have a right to be active in our treatment and to live as pain free as possible.

Never lose faith in yourself. Never stop having hope.  We are chronic pain warriors, not victims!

Brandis Standridge lives in Idaho.

Pain News Network invites other readers to share their stories with us.

Send them to:  editor@PainNewsNetwork.org.

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

A Pained Life: The Balancing Act

By Carol Levy, Columnist

It is time for a renewal for my pain meds but I have a number of pills left.  I was excited for a few seconds. Maybe the pain has been better so I need fewer pills!

And then I thought about it a little bit more.

It is not because the pain has lessened.  

I realized I have stopped doing a lot of what I used to do.  It was not the pain that had backed off. It was a reduction in my willingness to do things that trigger pain.

I had been working on a line of greeting cards that I both wrote and illustrated. I had also created a doll and made pins of the character that had her jogging, playing the trumpet, skating and more. I had hoped to learn to sew and bring the doll to market.

Looking back, I realized I stopped working on all of it a few months after my brain implant stopped working.  I had not realized it had been helping reduce the pain. 

I still had the eye usage and movement pain that caused me to be unable to do any consistent eye work for more then 15 - 20 minutes -- before the severe and often unrelenting pain started.

Apparently, the stimulator had reduced the anesthesia dolorosa (phantom pain) in the left side of my face. And now that it had failed, the weight of small plastic glasses or the use of facial muscles (tight as a result of facial paralysis) set off pain again.

I had moved from my house to a small apartment.  Well heck, that‘s why I’m not doing things. No room to do my crafts and art.

That made sense, except I had stopped before I sold the house, when I had an entire room devoted solely to my art and crafts work.

So what stops me?

The pain, of course.  But it is also the fear of pain.

The thought occurs: I need to work on the doll, the cards, even this column, and immediately the next thought comes: But then it will set off the pain, or make it worse if it is already in play.

It is a game of balance and juggling.

Do I give up on the things that make me happy, give me a sense of accomplishment and purpose, because the pain will be bad, even unrelentingly bad?

Or do I give up? 

Lately my choice has been the latter, maybe not consciously, but a choice nevertheless.

At what point and how do we make the choices balance out? 

I wish I knew.

I only know that right now, for me, the pain is doing the choosing for me.

It is a decision most of have to make at some point.  Can we master the pain or does pain become the master of us?

Maybe, as long as we do not make it a permanent decision, it is okay now and then to give in to the pain and the fear.  Maybe it is a healthy way of taking care of ourselves.  Not a capitulation, but a short term concession.

And that is not always such a terrible thing.

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.

Why You Should Consider Medical Marijuana

(Editor’s note: Pain News Network is pleased to welcome Ellen Lenox Smith as our newest columnist. Ellen has suffered from chronic pain all of her life, but it wasn’t until a few years ago that she discovered the pain relieving benefits of medical marijuana. In future columns, Ellen will focus on marijuana and how it can be used as pain medication. Medical marijuana is legal in 23 U.S. states and the District of Columbia. But even in states where it is legal, doctors may frown upon marijuana and drop patients from their practice for using it.)

By Ellen Lenox Smith, Columnist

Why -- at the age of 57 -- would one ever consider turning to medical marijuana? 

I wondered the same thing after being sent to a pain doctor just before another surgery in 2006. After reviewing my records and seeing that I was unresponsive to pain medication, the doctor clearly had no idea what to suggest, except trying medical marijuana. 

I was born with Ehlers Danlos syndrome and later also added sarcoidosis to my life. I was living with chronic pain that was preventing me from sleeping, thinking straight, and functioning.

From birth, I had one issue after another reacting to medications. And after 22 surgeries, you can imagine the horror of all I had to endure and the added pain of never knowing the proper relief my body could have from pain medication. Eventually, a DNA drug sensitivity test was ordered and it confirmed I could not metabolize most drugs. This meant no aspirin, Tylenol, or any opiates. 

I took the advice to try medical marijuana with tremendous trepidation. At that time in Rhode Island, you either had to grow your own or buy it on the black market.  Since growing takes about three months, I decided the only way to find out what marijuana would do for me was to find a source and give it a try. 

ELLEN LENOX SMITH

When I was able to find some marijuana, I ground it up, heated up some olive oil and let it release the medicine into the oil. I had no choice, since I was told by a pulmonologist that smoking marijuana with sarcoidosis in the chest would be fatal. I wanted to try a different way to administer it.

That night, I measured out one teaspoon of the infused oil. I mixed it with some applesauce and one hour before bedtime, I swallowed it down. I remember being scared -- for I am not one that likes to be out of control of my body. Having smoked marijuana once in college, I hated that sensation. 

As soon as I took the dose, I went to my husband and warned him that I had taken marijuana and to keep an eye out for me. I was convinced this was a stupid thing to be doing and I would be stoned all night.

One hour later, we got in bed, I closed my eyes and before I knew it, it was morning. I had slept the whole night, never waking up once!

I woke up refreshed, not groggy, and ready to take on life again. I had no “high” or stoned sensation like you would guess would happen. 

I learned quickly that someone in pain does not react the same way to cannabis as someone who uses it for recreational reasons. The brain receptors connect with the THC and cannabinoids (the active ingredients in marijuana), and provide safe and gentle pain relief.

I was shocked and thrilled with the result. My husband and I quickly got to work setting up a legal way to grow marijuana. I realized that life was directing us to new topic we just had to advocate for. 

If I was scared to try marijuana, there is no question that others felt the same way -- and we had to let them know how amazing it really is. Society brought us up to be negative about marijuana, yet it was used in our country many years ago and even sold in pharmacies. The success of this medication was squashed, and we were all led to believe that it was bad and dangerous.

What we learned is that no one dies from using marijuana, no one develops organ damage, and with a body in chronic pain -- you can regain your life back. 

Are my conditions cured? No, they are both incurable. But I have been able to advocate, think, feel and live again thanks to using medical marijuana. 

Don’t be scared. Consider how much safer this medication is than all the other pain relief choices out there. Turn your body and your life with pain around. You won’t regret it.

Ellen Lenox Smith 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. 

If you have a question for Ellen about medical marijuana, leave a comment below or send it 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.

When Nobody Believes You

By Jennifer Martin, Columnist

“It’s all in your head.”

“Your doctors are wrong.”

“You don’t really feel as bad as you say you do.”

“You must not really be in that much pain because you look fine.”

These words are far too common in the ears of chronic pain patients.  They can make one feel isolated, alone, and as if nobody cares.

One of my patients told me the other day, “My husband doesn’t believe I’m in as much pain as I say I am.  He thinks it’s all psychological.” 

A week earlier, a friend told me, “No matter how many doctors and specialists I have been to, my family still does not believe my diagnosis.  They think it is wrong.  I feel like I have to hide my pain around them.”

I listen to story after story from patients and friends with chronic pain stating the same thing: that family members, friends, doctors, co-workers, teachers, etc. do not believe they are in as much pain as they say they are. Often it’s because they look fine on the outside. 

They have told me they feel like they are whining about their pain, that people just brush them off or that they feel guilty for even talking about their pain.

They ask me, “What’s the point? I feel like nobody believes me anyway.”

No matter how many times I hear these stories, it still angers me.  Chronic pain is not something that anyone should feel like they have to convince another person of.  It is not something to feel guilty about and it is not something anyone should feel like they have to hide -- especially from those closest to them.

Unlike having diabetes, cancer or a broken arm, most people do not understand chronic pain and the effects it has. And many who think they understand are misinformed.

What they often don't understand is that chronic pain sufferers don’t always look sick.  Because their pain is chronic, they have learned to go on and live their daily lives to the best of their ability.  Just because you can’t physically see someone’s pain, that doesn’t mean it is all in their head and it doesn’t mean they are fine.  

And being told that their doctor must be wrong or that they should hide their pain only makes things worse. 

When someone is diagnosed with chronic pain, they want more than anything for that diagnosis to be wrong.  However, more times than not, the diagnosis they receive, especially if they have been to multiple doctors, is correct.  After the shock and denial has worn off, that patient, more than anything, is going to need support and acceptance, not criticism and disbelief.

Being diagnosed with a chronic condition is life changing, even for the strongest individuals.  It means finding a new normal, contending with things that are unimaginable and going through life feeling like those closest to you will never understand.  

It means trying to make sense of this new person they have been forced to become and the new reality they are now living.  All of these things could be managed just a little easier by hearing the simple words, “I believe you.”

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.

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.

National Pain Strategy: A Rough Beast?

(Editor’s Note: Earlier this month, The National Institutes of Health (NIH) released a draft copy of its National Pain Strategy, a long awaited report designed to advance pain research and healthcare in the U.S. The report identifies several areas where the healthcare system is failing pain sufferers and how it can be improved

A coalition of 17 chronic pain organizations called the Consumer Pain Advocacy Task Force was quick to endorse the National Pain Strategy, and is now lobbying the NIH to create an oversight body to implement the plan and provide funding for it

David Becker is a social worker, patient advocate and political activist who believes the needs and concerns of pain sufferers are not adequately addressed by the National Pain Strategy.)

By David Becker

The Consumer Pain Advocacy Task Force started promoting the National Pain Strategy (NPS) less than a week after it was made public. Obviously they didn't wait to hear from their members or people in pain -- as they are intent on seeing that rough beast of a plan be born no matter what people in pain think or want. The NPS is not "urgently needed" as they claim.

The NPS did not put a price tag on any of its plans or estimate how much their plan might save in costs; or how much the prevalence of painful conditions might be lowered or how much incidents of healthcare disparities might be reduced.

It is clear the government didn't want to include clear performance measures in the NPS. They do not wish to be held accountable to Americans or people in pain if the plan doesn’t work.

I do not support this thinly veiled occupational strategy that serves special interest groups without regard to the public good. Like a box of chocolates -- you don't know what you’re getting with this plan. 

DAVID BECKER

It is a big lie to say that the biopsychosocial model or interdisciplinary care meets the evidence based pyramid standards. Not enough research on their paradigm has ever been done and what little there is does not provide strong evidence for their paradigm over treatment as usual.

This plan has failed to learn from the mistakes of the past. A decade of pain control and research was a failure. It based its efforts on the “experts” -- as does the NPS. The more things change in pain care the more they remain the same. And people in pain remain condemned to the failed strategies of the past. The NPS, essentially, is nothing new.

It is clear that the 80 people who created the NPS don't have "the right stuff.” They have left too much to the imagination with their plan and leave out any plan for multi-morbidity or for treatment burden, and don't allow for an ongoing dialogue with people in pain.

To paraphrase Immanuel Kant, “We can think what we want, as long as we obey.”

The NPS was not a conversation with people in pain. It is a top down reductionist strategy by special interest groups to maintain their power and prestige. It will do very little for people in pain or address the ever rising economic burden of poor pain care.

As Helen Keller wrote, it is a terrible thing to see with no vision. The NPS fails to see much of the problems in pain care, failed to listen to the dried voices of people in pain, and offers no inspiring vision to address the many problems in pain care. The NPS is one rough beast that slouches toward Bethlehem and should never be born.

It is tragic that America can’t get it right when it comes to pain care. The politicos are anti-democratic and too ignorant of the real problems to create a sophisticated model or plan for dealing with pain.

My official comments to the NPS will excoriate their claims to expertise and their claims that they care about pain in America. But no article or comments will stop this rough beast from being born – too many organizations have been working hard to make it a reality.

What do you think? You can read the National Pain Strategy for yourself, by clicking here.

The NIH is accepting comments on the NPS until May 20, 2015.

Written comments can be emailed to NPSPublicComments@NIH.gov. They can also be addressed by snail mail to Linda Porter, NINDS/NIH, 31 Center Drive, Room 8A31, Bethesda, MD 20892.

Miss Understood: Surgery is a Big Deal

By Arlene Grau, Columnist

A few weeks ago I had my first scheduled surgery, a synovectomy of the right wrist, to repair some of the damage caused by rheumatoid arthritis to my wrist joint.

I've had numerous surgeries in the past, but none before were the result of my auto immune diseases. I was first diagnosed 7 years ago, at the age of 22.  

It wasn't until I met with my orthopedic surgeon that I realized this may be the first of many surgeries I may need. I just didn't expect to need one when I was still in my 20's.

I guess you could say that there are many misconceptions when it comes to what pain sufferers have to endure and what the timeline is for everything because no two people are alike.

When I told people about the procedure I would be having, some of them were compassionate and offered help if I needed it during recovery. Others assumed I would be on my feet and back to normal within the first week. I only knew what I was being told by my surgeon -- and to me it was a big deal.

The type of surgery itself isn't dangerous, but I was more concerned with the fact that I would only have the use of my left arm while I recovered. Not only that, I had a nerve block to help me deal with the pain. This meant that for the first week I wouldn't be able to feel my right arm and I would have no control over it.

ARLENE GRAU

I had asked several friends for help with dinner, since I was unable to cook, and to my surprise the people who were the busiest and I hadn't seen in some time came to my aid.

Still, I felt like most people thought the surgery wasn’t very invasive and I probably had very small incisions, which meant I shouldn't be in much pain. Maybe they thought I was trying to milk my situation and get sympathy, but that was never the case.

I decided to post a picture of my wrist after my first cast was removed, something I regularly do when I have procedures done, because I want people to understand what I go through and get it through their heads that I'm not making up the fact that I'm in pain all the time.

It's easy for others to say, "Don't worry about what they think" or "Turn the other cheek." But it's hard to do when you're constantly being judged. The worst part is that at times it's by the people you love the most.

To say that surgery for someone who has chronic pain is no big deal is far from the truth. My fibromyalgia is a magnet for pain and as soon as I woke up from surgery, I began to scream in agony. Yes, the nerve block numbed the pain in my arm, but the rest of my body went crazy.

I felt like I had been in a terrible accident. Any type of procedure or even a regular checkup is painful when it involves another person pressing on the areas where you feel the most amount of pain.

To assume everyone heals the same way is ignorant. Some people would rather believe that though, because it excuses them from having to show compassion towards those of us who suffer on a day-to-day basis.

Arlene Grau lives in southern California with her family. 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.