Power of Pain: What is Comorbidity?

By Barby Ingle, Columnist

It’s not unusual for pain patients to suffer from two or more chronic conditions – what is known as “comorbidity.”

First defined by Alvan Feinstein in 1970, comorbidity is “any distinct clinical entity that has co-existed or that may occur during the clinical course of a patient who has the index disease under study.” 

To put that in layman’s terms, let’s say you have Reflex Sympathetic Dystrophy (RSD) and experience other conditions that coexist with it; such as thoracic outlet syndrome, sleep disorders, depression, severe anxiety, pots, dystonia, arachnoiditis, fibromyalgia, etc.

Just because you have RSD doesn’t necessarily mean you will have any or all of these comorbidities, but they are commonly found to coexist together or in some cases develop as a secondary issue to the RSD.

Here are a few tools patients can use to help with the comorbidities that often come with chronic pain:

Sleep Disorders: To improve your sleep you can do a few things. Cut back on caffeine; stop smoking, and use biofeedback to lower your anxiety and stress. There is a great article on Pain Pathways about ways to improve your sleep.

Dysautonomia/Postural orthostatic tachycardia syndrome (POTS): This is a disorder characterized by orthostatic intolerance (OI) – which makes it hard for a person to stand up. Symptoms include altered vision, anxiety, exercise intolerance, fatigue, headache, heart palpitations (the heart races to compensate for falling blood pressure), difficulty breathing or swallowing, lightheadedness, nausea, neurocognitive deficits such as attention problems, heat sensitivity, sleep problems, sweating, and muscle weakness. 

OI affects more women than men (female-to-male ratio is at least 4:1), and usually people under the age of 35. Up to 97% of those who have chronic fatigue syndrome have been shown to have some form of OI. A good resource for more information on OI can be found at the Dysautonomia Information Network (DINET).

Dystonia:  Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and/or repetitive movements or abnormal postures. A good resource to learn about RSD (CRPS) and Dystonia is a research paper written by Mark Cooper, PhD, Department of Biology, University of Washington. 

Depression/ Anxiety: Over the last 30 years, it has become clear that RSD is not a psychiatric illness. Many people think that it is all in a patient’s head. They are right, but it is organically in our head and not a psychiatric illness. Depression does not cause RSD, but RSD can cause depression.

Situational depression and anxiety should be expected for those of us who have such a severe degree of pain that we cannot work a regular job. Many of us feel that nobody really understands what we are going through or how we could learn skills to smile through it. Anybody in the situation of facing RSD and living it day in and day out is going to be depressed.

Multiple studies have shown that people with disabilities are typically in poorer health and have less access to adequate care. They are also more prone to smoking and engage in fewer physical activities. With less access to proper and timely care for these patients, it is not surprising that their overall health would suffer.

We have to work on our healthcare system and change our access to care so that we are not focused on taking care of patients after they develop a disease. We need to teach preventative care from childhood. That way if a youth grows up and develops a chronic condition, the secondary illnesses and comorbidities may not be as bad as they are for today’s chronic pain patients.

Preventative measures such as better posture, nutrition and better access to timely care will go a long way in helping to slow the development of primary conditions and comorbidity. In the meantime, we need to encourage those with pain diseases to stay well through proper care, being active and connected to the pain community.

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 the CDC Gets Opioids So Wrong

By Crystal Lindell, Columnist

Look, I get it. I really do. Heroin is just such an easy thing to be against. I mean, it’s a drug. It’s a bad drug. It’s illegal. And people literally die after using it.

What’s not to hate?

But here’s the problem. Somewhere in this conversation about how heroin is bad, people started thinking that all opioids are bad. Even the legal ones. The ones that help people. The ones that actually save lives.

And thus, we have now ended up with another government agency trying to regulate medications that so many of us need. Not medications we want. Or that we think might be good. Medications we need.  

Last month the Centers for Disease Control and Prevention (CDC) released new draft guidelines that would -- if adopted-- sharply reduce the prescribing of opioids for both chronic and acute pain in the U.S. It’s mostly an effort to curb heroin use and non-medical use of opioids. Which, again, I get. Those are easy things to hate.

The CDC has since come out and said they would review the guidelines and look at public input, before finalizing them. But what changes, if any, they’ll make is unclear.

Among the 12 guidelines are recommendations like doctors should only prescribe opioids as a last resort, and chronic pain patients should have comprehensive treatment plans that go beyond just handing them a bottle of hydrocodone.

As someone who literally needs daily morphine to take showers, I’m extremely wary about the recommendations. And I’m also extremely weary of how the CDC chose to announce them.

They revealed all of them during an online webinar, which I wasn’t able to attend live. Seeing as how it’s 2015 though, I assumed I’d be able to watch it later on demand via my computer. Alas, although the CDC recorded the webinar, it didn’t make it available to watch on demand. I even went so far as to reach out to their marketing person and ask for the slides or a special link, but I never got a response. The whole thing seems pretty shady.

Thankfully, Pain News Network editor Pat Anson did attend the webinar and was able to detail all 12 guidelines. The best way to explain how wrong the CDC is about all this is just to take them one by one. You can see the official language here, but I’m just going to use laymen’s terms to sum them up:

1. If possible, use “non-pharmacological therapy" and non-opioid pain relievers for treating chronic pain. Use opioids as a last resort.

First of all, because of all the stigma associated with opioids, many doctors are already doing this. But it’s to the detriment of those suffering. When I first got sick, the doctors tried to give me prescription-strength Aleve. It literally did nothing for me. And eventually I was in so much pain that I would lay in bed at night and plan out how I wanted to take a knife to my wrists in the bathtub. That’s not hyperbole, that’s the truth.

Eventually, the doctors gave me a really low dose of hydrocodone. It did nothing for me either, and it wasn’t until I tried doubling the dose, and then doubling that dose, that I realized I didn’t have to live every second of every day feeling like someone had just dropped a cinder block on my ribs and then stabbed me with a butcher knife.

Also, I’m guessing that by “non-opioids” they mean nerve medications like Cymbalta and Lyrica, which people have somehow started to believe are a one-to-one swap for opioids, without all the side effects. But that’s just not the case. Nerve medications come with their own set of horrible side effects and withdrawal symptoms, and many people, like myself, find that they don’t actually help treat the pain.

It took way too long for me to get the medications I needed. And requiring doctors to try everything else first will only exacerbate that. You wouldn’t tell someone who just go out of surgery that they should try acupuncture before giving them pain pills. And you shouldn’t do it with someone in chronic pain either.

2. Establish a treatment plan.

Well, duh. Doctors should be doing this even if they aren’t prescribing opioids.

Unfortunately, doctors aren’t neglecting to create treatment plans because they want to give away opioids like candy, they’re neglecting to create treatment plans because they don’t have the time or the patience to have these kind of in-depth conversations.

3. Discuss the risk and benefits of opioids with patients.

Again, duh. But this should apply to all prescription medications. There’s nothing special about opioids.

4. Favor short-acting opioids over extended-release/long acting opioids.

This is the recommendation that makes it most obvious that they didn’t actually consult with any chronic pain patients. Anyone who uses opioids will tell you how much better extended release pills are than short-acting, quick hit opioids.

That’s because extended release pills don’t result in that insane cycle that a typical hydrocodone dose will give you — a burst of pain relief, followed by a crash that leaves you begging for death, and reaching for more meds before it’s time for your next dose.

One of the best decisions I ever made was to go on eight-hour time release morphine. The steadiness of the dose has helped me maintain the same dosage for almost two years. And by avoiding the insane lows that come with short-acting opioids, my pain stays at a more manageable level.

5. Prescribe the lowest possible effective dose, and implement additional precautions when increasing the dosage to 50 mg (morphine equivalent) or more per day. Also, avoid going over 90 mg a day.

I’m just going to say it. I’m on as much as 60 mg of opioids on the daily. There. Now you know. I take a lot of drugs.

But you know why I take that many drugs? Because every day when I wake up it feels like I just got whacked in the chest with a baseball bat, and then hit by a freight train, and then thrown off a bridge. Every day. Again, that is not hyperbole. That is my life. And proposing arbitrary limits on how much medication you think I need to deal with is infuriating.

6. Long-term opioid use usually begins with treating acute pain. So, when opioids are used for acute pain, doctors should give out the lowest possible dose of short-acting opioids and they should only prescribe enough for three days or less.

Look, I’ve had surgery. And it took me a serious week to recover from having my gallbladder out. And I needed that hydrocodone every single day I was on it — all seven days. I’m glad the folks at the CDC can hop out of bed three days after having their stomach cut open, but we aren’t all so lucky.

7. Doctors need to check in with any patients on long-term opioids.

Again, duh. And again, this is something that should apply to any person on any drugs.

8. Doctors should go over the pros and cons of the drugs. Also, they should give patients naloxone if there’s a chance of things going wrong with the opioids.

Okay. Look. It’s always a good idea to go over the pros and cons of any drug. I’m not sure how many times I have to write this, but yes, doctors should do this with EVERY drug.

As for naloxone, I don’t personally feel like I need it because I only use my opioids responsibly. But if a doctor thinks it’s a good idea, I’m not going to argue about it. The key word there though is “doctor.” I don’t believe the CDC needs to be involved.

9. Doctors should review the patient’s history of controlled substances.

I mean, yeah, I guess if someone just got out of rehab for heroin that should probably be a red flag. But I don’t think someone with trigeminal neuralgia should be denied treatment because one time in high school they got caught with pot.

10. Providers should drug test everyone on long-term opioids.

Look, this is already pretty much policy across the country. While my doctor doesn’t do it to me, I did sign a contract saying he could. And, yes, it does kind of suck.

For example, what if you’re being under medicated and need some Mary Jane? What if you just don’t want to feel like a common criminal every time you go to the doctor? Or what if you already just peed? It sucks. And it just adds to the stigma that so many opioids patients already deal with.

11. Doctors should not prescribe opioids and benzodiazepines together.

If your doctor is doing this, find a new doctor. This is basic “these medications don’t mix” stuff.

12. Doctors should offer treatment for people with opioid use disorder (aka addiction to opioids).

Yes. Yes they should. It’s called medical care.

So there they are, all 12 guidelines. Most of them can be summed up as, “Doctors need to talk to their patients more.” And like I said, that’s a philosophy that could apply to all doctors, all patients, and all drugs.

It’s quite obvious from reading through these guidelines that the CDC didn’t really consult with anyone in chronic pain who is using opioids responsibly — and that’s really the worst part about all this.

Look, it’s not like I’m saying you should be able to get time-release morphine over the counter. I get that there has to be some regulation. And I truly do believe that doctors should do a better job explaining various drugs to patients before they hand them a script for hydrocodone.

But I think doctors need to do a better job explaining all drugs. And when the CDC releases uneducated guidelines like this without input from as many as 11.5 million Americans who are on long term opioid therapy, all they’re doing is perpetuating an unfair stigma that does more harm than good.

People who don’t know any better are always making off-handed remarks to me about how, “You need to get off all those drugs.” And I always stop whatever I’m doing to explain to them that it’s “all those drugs” that give me the ability to live my life. Would they rather I laid on the couch all day contemplating suicide? Because that is the alternative.

Again, no hyperbole. That’s just my life.

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.

A Pained Life: When Support Hurts

By Carol Levy, Columnist

Last week there was a meeting of my local trigeminal neuralgia support group. I like the people and want to see them, especially because we meet only 6 times a year, including one lovely summer picnic at a member's home.

It takes me an hour by train to get to the meeting. Lately, I find myself using that as an excuse not to go.

The truth is I don't want to go because of an issue that seems to haunt most support groups: the people who have gotten better or cured, leave. So we never hear the stories of success.

When my pain was bad I needed to hear those stories. Now that my pain is better, I do not want to listen to the reminder of what once was.

I had a spontaneous remission of a large part of my pain, the part most typical of trigeminal neuralgia: touch induced and spontaneous pain (and in my case constant too). I still remain with eye movement and eye usage pain, which are very uncommon with trigeminal neuralgia.

I have become an outsider to the group in the sense that I "only" have the eye pain -- yet I remain an insider because it is still trigeminal neuralgia.

I think about what I would do if I no longer had any pain.  Would I continue to be a part of the group? Would I want to be somewhere, when the only point would be to be reminded of how bad my pain was?

I think of people who lose a lot of weight. You read two kinds of stories: “I threw away all my plus sized clothes so I will not be reminded or tempted to go back to my former size.”

Or the antithesis: “I keep all my large sized clothes as a reminder so I won't go back to those days when I was so unhappy and physically miserable.”

Of course pain is different. Once it is gone, it's gone.  And when it's gone I want it to be completely, totally done, gone, and finished. Attending the support group becomes only a reminder of how devastating and debilitating the pain was.

The eye pain keeps me disabled, but the ending of the other parts of the pain has made my life more manageable.

I no longer fear the slightest touch to my face, even a wisp of hair, much less a raindrop or something touching the affected area of my face. To listen to members of the support group describing the pain they get from the slightest of touch is to take me back to a very dark and torturous place, a place I do not want to go.

It's a conundrum.

Support is so very important, not only to be there for one another, but to be with those who truly understand, who have been in my shoes and I in theirs.

The sharing of hope, to say to the group, “A major part of my pain is gone. It can happen”.  The proof that hope is not just a fairy tale matters. A lot.

But, as much as I hate to admit it and I feel very guilty about it -- I am still too selfish and fearful to be the one to carry the message.

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.

The Risks of Non-Opioid Pain Medications

By Emily Ullrich, Columnist

As a chronic pain patient for some years now, I have realized the necessity of self-advocacy and have made it a point to become extremely well-educated in regard to patient choices in pain treatment. I also pay very close attention to the constant barrage of anti-opioid propaganda that consumers are exposed to -- an agenda being pushed by the DEA, CDC, and powerful special interest groups.

As a patient advocate and delegate to the Power of Pain Foundation, I am also more aware of the increasing limitations and access to opioid pain treatment that patients are being subjected to. As pain patients, we must be aware of our options, and demand explanations from the medical community and government as to the real reasons why we are being denied or severely limited access to opioids.

The scariest part of this situation is that non-opioid pain medications are now being thrust upon us as one of the “preferred” treatments for chronic pain in the CDC’s draft guidelines for opioid prescribers.

First, it is important to consider the following facts:

Unless a doctor is board certified in pain treatment, he or she receives little to no education in pain management under the current standard medical curriculum. Yet pain is the number one reason people go to a doctor or hospital.

This contradiction causes an enormous gap in knowledge and understanding when it comes to pain, and leads to a tremendous level of under-treated or untreated pain. Many well-intentioned, but uninformed doctors are intimidated by the prevailing climate of opioid hysteria and feel pressured to treat their patients' pain with newer, non-opioid therapies. Many of these medications are being prescribed to patients in an “off-label” fashion.

Two of the most commonly prescribed non-opioid “pain medications” are Lyrica (pregabalin) and Neurontin (gabapentin), both of which were initially approved by the FDA as anti-seizure drugs. The dangers of these medications are too often minimized by doctors, government agencies, and the media -- and to some degree remain unknown (particularly in the long-term).

One thing that has recently been unearthed is that these medicines prevent the formation of new brain synapses. This is not a minor side effect. It can lead to short and long-term memory loss, as well as Alzheimer's disease, among other things.

It can also mean that the brain becomes incapable of neuroplacticity. According to the Huntington Outreach Project at Stanford University, our brains rely on neuroplasticity to “compensate for injury and adjust their activity in response to new situations or changes in their environment.” In lay terms, these drugs cause brain damage.

In addition to the under-reported peril involved in the use of these drugs (and many others that are being used in place of opioids), they also have long and worrisome side effects. The potential side effects of both Lyrica and Neurontin are far too many to list, but include vomiting of blood, pancreatitis, hearing loss, non-Hodgkin's lymphoma, “oncologic” (cancerous) potential, heart disease, heart attack, acute kidney failure, and “life-threatening angioedema with respiratory compromise.”

Compare these potential side effects to those of opioids. When used appropriately, the major side effects of opioid pain medication are constipation and dependence -- both of which also happen to be listed as side effects of Lyrica and Neurontin.

When one sees that the most frequently prescribed non-opioid “pain medications” can cause cancer, heart attack, kidney failure, etc., we must question the motives behind this movement to eliminate or greatly reduce the use of opioids. When used properly, opioids have a proven track record of pain relief. So, why are we being told they are so dangerous?

One loathes the idea that a doctor might have ulterior motives when prescribing or that the FDA, DEA, and CDC may have less than ethical intentions. However, it seems necessary to consider the possibility that drug companies may further sicken patients with their “treatments” to ensure lifetime consumers who are forced to buy additional medications to treat the conditions caused by their very own products.

You can easily look up the financial contributions made by “Big Pharma” to your doctors, politicians, special interest groups, and other influential voices in the medical community by visiting ProPublica’s “Dollars for Docs,” Medicare’s Open Payments Database, and OpenSecrets.org.

Pfizer for example – the maker of Lyrica and Neurontin – was the top contributor in the health care industry to candidates and political parties during the 2014 election cycle – donating over $1,534,000 to both Democrats and Republicans alike. The top two recipients were Sen. Cory Booker (D-NJ) and Senate majority leader Mitch McConell (R-KY).

We must ask these difficult questions and have these taboo conversations for our own good. It is unfortunate that our society has come to this, but if we continue not to question, we will continue to be marginalized. Pain patients suffer enough. We need solutions, not restrictions.

I, for one, will continue to use alternative therapies and choose responsible opioid therapy over newer and more dangerous medications, as long as the law allows. I will continue to push for answers and I hope readers will be incentivized to join me.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of Pain Foundation, as she is able.

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.

Bridging the Language Gap Between Doctor and Patient

By Pat Akerberg, Columnist

Like me, some of you may be hooked by a TV Series called Grey’s Anatomy.  The setting is a Seattle teaching hospital.  It’s a drama revolving around the surgical adventures and personal lives of a bright new surgical resident, Meredith Grey, her neurosurgeon husband, senior surgeons, and a group of Meredith’s fresh out of medical school counterparts.

The format begins with some type of traumatic emergency or compelling medical issue.  During rounds, residents are expected to provide a technically astute bedside rundown of a patient’s status right in front of them, their attending surgeon, and other residents to demonstrate their medical competence with confident dispatch. 

The patients are often fearful and overwhelmed as they glaze over in reaction to the stream of impersonal medical terminology washing over them like a tidal wave. 

Attuned to the shortfalls of foreign medical jargon, the attending surgeon typically intervenes.  Instead they slow down, address the patient by name, and compassionately translate the technical terms into everyday language. 

They bridge the gap by talking with the patient vs. at them. 

You can sense heightened tensions ease as patients respond positively to the difference in approach.  They begin to understand, enabling them to make more informed decisions. 

Using lay terms to describe and diagnose (a patient-centered approach) takes no more time or effort than using confusing text book terminology does (a disease centered approach). 

Having experienced the difference between the two approaches firsthand, I urge medical practitioners to adopt the patient-centered one and simply “tell it like it is”.

When I first heard my initial diagnosis of trigeminal neuralgia, it was so rare I had never heard of it.  When I asked my neurologist what it was and what caused it, his disease-centered explanation was to repeat the label and pass it off as just bad luck. 

Fast forward to an intimidating brain surgery -- “micro-vascular decompression” -- offered as a potential fix.  My neurosurgeon gave me a complex video to watch on-line.

When that surgery damaged my nerve leaving me in even worse pain, I was referred elsewhere to deal with the painful complication – “anesthesia dolorosa.”  What?

Marinating in medical terminology all along, the onus was on me to find a way to figure out what they were saying, what was happening to me. 

Through the internet, a patient-centered on-line support group, a compassionate and wise  neurologist/research scientist, and a few years later, I am better equipped now to translate my “bad luck.”

But it’s just not enough for our doctors to understand what’s going on with us.  We’ve been told by medical science for years that there’s a patient factor equally as important.  It’s called a “mind-body” connection, proven to enhance more favorable outcomes.

So why hijack such an influential connection that holds such positive potential by using hard to understand impersonal terms and technical jargon?

Here’s a sampling of some of the disease-based medical terms that doctors used standing between my pain and my understanding of it:  micro vascular decompression, iatrogenic, neuropathic pain syndrome, trigeminal deafferentation, anesthesia dolorosa, central nervous system sensitization, allodynia, hyperalgesia, dysthesias, intractable, refractory to treatment, paradoxical reaction, and progressive disorder, among others.

In patient-centered terms, here’s the translation that could have happened upfront to help me and save precious time and energy:

“I’m sorry that an unfortunate surgical complication occurred damaging your nerve.  The numbness and increased pain mean your nervous system is reactively firing constant pain signals now.”   

“Abnormal facial sensations will happen.  Simple things that normally don’t hurt will, like talking, a kiss, or breeze.  Things that normally hurt can hurt more.”  

“Science and medicine have not yet caught up with how to help with this difficult to treat condition.   However, research is ongoing for new medications and effective approaches. Other surgeries are not advisable.” 

“Neuropathic pain can slowly progress and create other issues.  I will do all I can to help you.”    

Understanding the story the terminology tells hasn’t yielded any answers or relief for me yet, but my reality is no longer lost in the obscurity of a medically precise barrage of unsettling terms.

An important step towards reaching acceptance is being able to name and claim our stories before we can hope to move them in any other direction.  I find that there is something empowering about unraveling my own story well enough to be able to name it and talk about my experience in my own terms.

It’s a way of taking our power back.  The unnecessary gap is pulled closer together.  The story doesn’t go away. It still stays with us, but differently.   

We become the authors.  Armed with greater understanding and hard-won wisdom, we can choose the words we use to connect with our doctors or others.  We can edit things in or out, and decide what, how, and with whom we’ll share.  

We can humanize what we’re experiencing so we’re back in the center where we belong -- no longer overshadowed by diagnostic, confusing, or impersonal terminology.

To really bridge the gap for a stronger mind-body connection, our physicians need to do more of the same in return.

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.

CDC Opioid Guidelines Could Lead to Malpractice

By Terri Lewis, PhD, Guest Columnist

The recent issuance of draft guidelines for opioid prescribing by the Centers for Disease Control and Prevention (CDC) posits some troubling guidelines for physicians – troubling because they prioritize the practice of prescribing over the treatment of patients. They infer that the use of opioids is tantamount to the onset of addiction and equate dosing levels with metrics unrelated to a patient resuming activities of daily living.

To ignore the individual patient’s needs in favor of applied population modeling for prescription overdose is tantamount to the institutionalization of malpractice and violates the very tenets of person-centered health care. 

Physicians are moving to an environment that will redefine and reclassify conditions associated with chronic pain based on a body systems approach.  In the arena of musculoskeletal systems alone, there are 99 classifications associated with pain levels that range from acute to chronic to intractable. All have the potential to require lifetime treatment at levels beyond those associated with acute pain. 

Medicating a person so that the impairment imposed by acute pain does not convert to chronic pain or disability is a very important concept in our health care decisions – both as providers and as consumers.  While long term opioid prescribing may have negative implications for some, this is largely a failure of models of care and not a failure of consumer utilization.  

A review of death and injury data maintained by the CDC indicates that prescription drug overdose is not even in the top 15 leading causes of death in the U.S. The number of overdoses that occur in the population annually should not be the primary filter through which we consider the needs of persons with chronic pain. 

The third largest measured harm to patients is associated with care by a physician or hospital – conditions over which patients have no control and which can result in lifetime injury. Wrong diagnosis, wrong prescribing, failure to rescue, hospital acquired infections, improper surgeries and other forms of malpractice all create conditions of significant injury that can lead to chronic pain.  Far more risk to the patient is associated with covering up harmful industry practices and the institutionalization of biases that opiod treatment causes addiction.  Correlation is not causation.

Before starting long term opioid therapy, providers should establish treatment goals with all patients, including realistic goals for aftercare, restoration of functional activities, and pain reduction.  No medication, including opioids, should be prescribed unless it is for conditions for which it was clinically trialed, or when there is clinically meaningful improvement in pain reduction and function that outweighs risks to patient safety.

Before starting any therapy, providers should discuss with patients risks, limitations, and realistic benefits of opioid therapy, as well as the patient’s and provider’s responsibilities for managing that therapy.  A careful history, an understanding of the context to which the patient will operate, the supportive resources available, and the daily demands upon their independence and functioning, are critical indicators for monitoring performance that have far more important meaning than dose limitations. 

The important question is not whether opioids are contraindicated by regulation, but whether opioids are likely to return the patient to a state of functional behavior or have a role in helping them maintain their independence and daily activities. 

When opioids are started, providers should prescribe the dose that is most likely to benefit the patient. For some, this will be a very low dose, but for others it may take more due to conditions associated with their personal genetic characteristics. Patients can build a tolerance to low dose medications when they are prescribed doses that do not alleviate pain.  Rather than being afraid to over-medicate, we should be just as concerned about the impact of under-medication in building tolerance.

The CDC’s recommendation that 3 days or less supply of prescribed opioids for non-traumatic acute pain may well fall short of individual needs.

Providers should evaluate patients frequently when starting long-term opioid, anti-epileptic, or anti-psychotic drugs alone or in combination.  Evaluation should include serum levels, behavioral observations, assessment of adaptive behavior and progress toward adaptive functioning. 

Patient contracts are ethically troublesome and tantamount to withholding medications based on characteristics or behaviors that may have nothing to do with patient outcomes. It is unethical to hold a person in chronic pain hostage to the withholding of effective treatment, and many believe this should not be the basis for informed consent conversations.  These conversations frequently occur within the first or second doctor visit, when little is understood about the patient, their condition, its causation, or direction for treatment. 

Another one of the CDC’s recommendations is for urine drug testing of patients on long term opioid therapy.  Urinalysis often falls far short as a metric for adherence and compliance with a prescribing routine. Differences in individual rates of metabolism may well cause providers to make errors of judgment when analyzing drug test results.  Many urine tests have significant rates of poor performance, physicians may not understand the potential for false positives and negatives, and some labs fail to employ procedures that are consistent. 

These tests also have the potential to add many hundreds of dollars to the patient’s bill, a cost for which they cannot be reimbursed on many insurance plans.  Failing a drug test may unnecessarily stigmatize the patient and impair the treating relationship. 

Risks and Benefits of Opioids

When the benefits might not outweigh harms of continued long term opioid therapy, providers should work with patients to periodically evaluate dosing, add other non-pharmacological therapy and, if possible, discontinue opioids when treatment so indicates. 

All patients are not equally vulnerable.  Before starting, and periodically during continuation of opioid therapy, providers should incorporate into the management plan strategies to mitigate risk, including patient and family education, gathering of information about the impact of the health condition on long term function and independence, interaction with other medications or foods, and rescue support if indicated.

Most providers are now required to review the patient’s history of controlled substance prescriptions by using prescription drug monitoring databases to determine whether the patient has access to excessive opioid dosages or dangerous combinations of medications. Used properly, this is an effective tool.  But it is important for providers to understand that this data itself has limitations and may be biased by the availability of medications, prescriber behavior practices, and pharmacy filling practices. 

Many a user has been accused of abuse for data that reflects limitations that have nothing to do with the patient.  Providers should be very careful about drawing conclusions and should balance this information with other indicators – patient reports, community supports, consumer functioning, and so forth.

It is important to understand that persons with chronic pain are, by their very nature, patients with complex care needs who have injuries to multiple body systems.  Chronic pain is a total body experience, no matter the origin of the injury or illness.  The person is not going to be “cured” and cure is not the treatment goal.  Returning the person to the best function possible is the goal, along with assuring them that you will be a partner in helping them achieve a quality of life through treatment they can depend on.

We have to change our thinking about approaches that require us to treat to the dose, and stop interpreting this issue of pain care within the acute care model. Those who would divert us from this goal are not leading the public conversation toward an effective national pain strategy.

Terri Lewis, PhD, is a specialist in Rehabilitation practice and teaches in the field of Allied Health.  She is the daughter and mother of persons who have lived with 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.

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.