Is Vitamin D Making Me Feel Better?

By Crystal Lindell, Columnist

This is the story of how I have turned into the crazy lady constantly telling everyone I meet to get their vitamin D level tested.

The thing about the vitamin D is that it could either be the cure I’ve been searching for, or have absolutely nothing to do with why I’ve been feeling better since about July. Either way though, I am feeling better these days.

Back in May, I went to visit a local weight loss clinic to try and lose some of the 60 lbs. I’ve gained since getting sick. While I was there they ran some routine blood work. And it turns out my vitamin D was low. Not like, “Oh, it’s just a little low, you should probably take a supplement” low.

My level was 6 ng/ml. It was literally the lowest the doctor at the weight loss clinic had ever seen.

To put it in perspective, the Vitamin D Council says it’s best to be between 40-80 ng/ml, while the University of Wisconsin recommends being between 30-80 ng/ml.

I had tested low before, like 19 ng/ml, but it was years before I suddenly woke up feeling like someone was stabbing me in the ribs. And I honestly don’t remember the doctor at the time impressing on me that it was any sort of an issue. I just figured it was like needing an oil change every 3,000 miles. Sure that’s the ideal, but your car isn’t going to just shut off if you wait until 5,000 miles.

So I told my primary care doctor about the results, and he and the weight loss doctor decided to put me on prescription-strength 50,000 IU vitamin D for three months, followed by a daily dose of 4,000 IU after that.

When I got home from my appointment, I looked through all my medical records — from Loyola University, the Mayo Clinic and the University of Wisconsin-Madison — and realized that not once had anyone thought to test my vitamin D.

I have literally had more than 35 blood tests, a handful of urine tests, and a more imaging than is probably healthy, but none of them were for vitamin D!

It turns out vitamin D is pretty important though, and has been shown to have direct links to chronic pain. It’s also not actually a vitamin, so much as a hormone. There’s all sorts of research on how low vitamin D can cause chronic pain, even specifically rib pain, which is what I have.

A recent study in The Pain Physician journal shows that, "Vitamin D, a hormone precursor essential for maintaining homeostasis of the musculoskeletal system, has long been proposed as an associated factor in CWP (chronic widespread pain). The most severe type of hypovitaminosis D, osteomalacia, features generalized body pain, especially in the shoulder, rib cage, and lumbar and pelvic regions."

And another study from the American Academy of of Pain Medicine showed that, “The prevalence and clinical correlates identified in this pilot study provide the basis for the assertion that vitamin D inadequacy may represent an under-recognized source of nociception and impaired neuromuscular functioning among patients with chronic pain.”

In other words, if low levels aren’t the cause, not having enough vitamin D can make chronic pain more severe. And, low Vitamin D can also make pain medications less effective.

According to an article on the Mayo Clinic website, “patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication — nearly twice as much — as those who had adequate levels.”

So I was cautiously optimistic that getting my vitamin D levels back up could at the very least make my pain medications more effective.

But for the first few months, I didn’t really feel much different. I only told a few people about the vitamin D because constantly talking about possible cures is exhausting — everyone wants it to work so much, and then when it doesn’t you feel like you have personally failed at something.

So I only told my mom, my boyfriend at the time, and my best friend. My then-boyfriend was hoping for a miracle by day two. But alas, nothing. My best friend was hoping for a miracle by month two. But alas, nothing. And my mom, who I live with, wasn’t really putting her hope in it all. She had seen too many things not work.

But then, in July, I started noticing things. Like little things. Like I could go for a walk and not die afterward. And then, in August, I cleaned the freaking bathroom! Seriously, I did the floors, washed the mirrors and scrubbed the tub, all without ending up in the hospital!! And by September, I was even able to make the four-hour round trip trek to work without having to spend the entire next day recovering.

Slowly, but surely, I have started feeling better. I mean, I’m not cured. And I’m not holding my breath that I ever will be. I’m also completely aware of the fact that I could backslide at any moment.

And, I still take morphine on a daily basis, for now anyway. But I have literally gone off almost all my other meds, including the sleeping pill amitriptyline and the nerve pain medication Cymbalta. As for the hydrocodone, I’m down to like one or two pills a week at the most. And sometimes, I can go the whole week without taking any at all — which is pretty much a miracle of God if there ever was one.

There’s also been some weight loss. I honestly never went back to the weight loss clinic because they wanted to put me on a weight loss drug, and over the last couple years I’ve come to a place where I just don’t want to be on any drugs unless I have to.

Even so though, feeling better has meant that I’ve been able to walk three to five miles about six days a week all summer, and I’m excited to report that since May I’ve lost 30 pounds! WHAT?

I had a visit with my amazing doctor last week, and we talked about whether or not the vitamin D deserved any credit for my newfound ability to shower almost every single day.

When I showed him that I had a whole bottle of hydrocodone left over — I honestly used to run out of the drug a week early each month — he literally said, “Congratulations!”

He tested my vitamin D, and I’m happy to report that I’m now at 35 ng/mL — a much healthier level than six. As my doctor remarked on the top of the lab results, “Your vitamin D level looks good. You can safely keep taking your current dose of vitamin D supplements.”

When we talked about it during the appointment, he told me that the vitamin D could be part of why I’m feeling better, or it could be that the nerve that they think was causing the pain had shifted somehow. Or it could be something else all together. Maybe it’s the placebo effect, or maybe it’s all those Taco Bell Cheesy Gordita Crunches I eat every other day that have something magical in them.

So yeah, I don’t know if the vitamin D is the reason I’m feeling better or how long-term this could be, but honestly, I don’t care. I’m just happy that I can clean the bathroom again.

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.

Power of Pain: Choosing to be Happy

By Barby Ingle, Columnist  

Mental health can be disrupted by chronic pain. Anxiety, depression, hopelessness, isolation and helplessness can increase to dangerous levels. Particularly for people who have been suffering with chronic pain for a long period of time, life can become overwhelming.

When I finally realized that chronic pain had no cure and that my future would include pain on a daily basis, I began to have dark thoughts. I did not want to end up at risk of suicide, so I started to build tools into my life for emotional comfort. 

There are going to be good and bad days, and if this is a bad day for you, remember to focus on the good days, good feelings, positive past, and future experiences. It is very important for you and your family to recognize the symptoms of diminished emotional well-being and take action.

Understand that these feelings and thoughts are common among people living with chronic pain. It is helpful to create an overall strategy to get through the rough times.  Chronic pain patients learn over time that they can better cope and adjust to both the physical and psychological consequences of their disorder with the help and support of spiritual guidance, family and therapists.

Creating an arsenal of tools, such as spirituality, physical modalities and meditation, are all ways to better your situation. Turning to God has especially helped me with anxiety, depression, and other psychological and physical challenges; and it offers a great way to cope with and put situations into proper perspective so we can learn to live with them.

Chronic pain is not understood very well, and there are physicians and psychiatrists who believe that it is all in our heads or that people just complain for the sake of getting worker’s compensation or some other benefit. If we are seen as malingering patients who just won’t go away, doctors who don’t understand chronic pain may find it difficult to look for any other diagnosis other than psychological. A lot of my stress could have been avoided if doctors had really listened to me from the start, instead of looking at my marriage troubles as an excuse to “be ill for attention.” 

There were stages to my grieving. First was hope. I hoped that there was some cure to make the pain go away. Second, wondering if the treatment I was receiving was appropriate, I got angry. Feeling resentment and depression when I realized that this is not temporary is sometimes overwhelming in itself.

When this happens, I try to rationalize and evaluate the changes in my life and how I live it. In doing this I come to an understanding and acceptance of what my place is with permanent pain.

Despite the difficulties we experience, it is important that patients with chronic pain and other chronic conditions maintain a healthy lifestyle, including getting enough sleep, exercising, and eating healthy foods.

There are long-term health consequences created by leading a more sedentary lifestyle due to our pain. Because we are less active, we are at greater risk for developing other medical problems. We need to watch out for cardiovascular disease, diabetes and osteoporosis, as the risk for these conditions is heightened by inactivity.

I myself have been dealing with poor posture and sudden weight gain and loss. I fall easily and have trouble gripping and holding onto things.  

No matter the challenges of today, they will pass, and in retrospect, they will not seem as bad as time moves on. The challenges may just turn out to be a bump that looked like a mountain at the time.

I have found that when I live life with a negative attitude I am saying that I do not respect myself and do not believe success is possible. Try working on displaying a positive attitude and the moods of others and the challenges of life will become easier to deal with.

Choosing to be happy starts with you. No person or thing can make you happy and positive. It is a skill you have to practice and develop when living with chronic pain. When you are able to live in a happy, positive and optimistic light, your life will become a life worth the ups and downs that come with it.

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.

Wear, Tear & Care: Emotional Insight App

By J.W. Kain, Columnist

Biofeedback is probably the closest thing to having actual superpowers. To quote the Mayo Clinic, it’s “a technique you can use to learn to control your body’s functions, such as your heart rate” by using electrical sensors to "receive information (feedback) about your body (bio).”

In theory, this can help you learn to control things like muscle relaxation, which often helps to lessen pain.

What if you want to go deeper than that, though?

In my own experience as a chronic pain patient, I’ve come to realize that much of pain -- or rather, the compounding of pain -- is emotionally derived. It can be stress from work, an argument with a spouse, dreading a rent payment, or anything else that thrills against your nerves. How does one separate the emotional aspect of pain from the physical? How do you know when you’re being your own worst enemy?

You look inward.

Somehow my father stumbled across the Emotional Insight app and sent it my way. I was very curious, as it seemed comparable to biofeedback. But how did it work without wires and electrical sensors? The price tag surprised me -- $49.95 for the app -- and so I reached out to the makers of the program, Possibility Wave, to ask if I could take it for a test drive.

Soon enough I found myself Skypeing with the delightful Garnet Dupuis, one of the founders of Possibility Wave and the creator of the app. He hails from Canada but now lives in Thailand with his wife, and I could hear the sounds of the jungle when we spoke. Suffice it to say he is a cool guy.

When processing experiences, Mr. Dupuis said, “It’s helpful to say it to somebody. A person begins a process of self-reflection even just by talking into a mirror.”

When asked how this relates to the app, Dupuis told me that it does exactly what it says on the tin: It provides emotional insight. “Something about declaration” helps people come to terms with things, he says.

In other words, just talk it out.

Clients have reported as much progress and growth in two to three app sessions as they would achieve in one to two years of actual therapy. As Dupuis says, “these are like quick spiritual experiences.” He calls Emotional Insight a form of “neurofeedback,” which made more sense to me; when I played with the app, I found it had nothing to do with the body and everything to do with the mind. Even so, “it’s a little bit like exercise,” Dupuis said -- as in, the more you work at it, the more you can discover about yourself.

This app is all about sharing information. Technically speaking, improvements could be made; there is so much data that at times the app freezes, and talking out loud can be impractical. That is when I realized this app was not made to be used on a train while traveling somewhere or while standing in line at the bank. This is literally a pocket therapist, but the therapist is the user.

It surprised me constantly, like a shrewd psychic, but in reality I was only talking with myself. Not only does it make you type out a problem, but it makes you repeat it aloud. This irritated me until I realized that I was resisting saying it out loud, because somehow, saying it out loud is harder.

When you open the app, you have three choices in terms of sessions. I chose “Spontaneous Insight.” You are prompted to speak aloud and identify the issue you want to explore.

This is when it becomes stranger. The voice analysis program does not pick up words you say; rather, it picks up the tones in which they were said and matches it to certain emotional responses. So if I say, “I regret the loss of the person I used to be,” it brings back three “clues” regarding the emotions behind my speech: longing, gladness, uneasiness.

The app brought up the fact that I am a workaholic. Considering I have a full-time job and still do things on the side, I would say that’s accurate. It told me to compose an “I” sentence with one of those clues. Somehow I came up with: “I’m glad my pain is getting worse because I’m a workaholic.” What? I am in no way glad about having pain, but I also know that I will run and run and run like the Energizer Bunny until I die, because I refuse to let my pain dictate my life.

By insisting that I don’t need help and that I can function like other people, I am making myself worse. It will take an outside force to make me stop. I have to admit to myself that I am not like other people anymore. I can’t do everything that I used to do. I have to mourn that loss and begin again.

Then the app essentially asks: “What are you going to do about it?”

I was squirming now, uncomfortable with what I was saying. “I need to stop working so hard in order to deal with my pain.”

The app then plays Sonic Signatures and the Crystalline Strategy, which I honestly do not understand. They are coded sound signatures that represent certain remedies, and you are supposed to listen to them a few times each day in order to reinforce what you have learned. It sounds like a whole store full of wind chimes and the signals of a lost radio station. There is a YouTube video that explains these “sound drops” (like herbal tinctures for your ears, if you will).

“The app never tells you what to do,” Mr. Dupuis said to me in our Skype chat. “It guides you, but you have to declare it to yourself.” That being said, the app is as enlightening an experience as you make it. For me, it brought up several things I have been avoiding; it was a strange experience, because I like to think that I face my problems directly. However, I learned that this is very far from the truth. 

Mr. Dupuis was intrigued that I am a columnist for a pain-related publication and that I wanted to use the app in this way. “Everybody hurts in one way or another,” he said.

Pain can compound for a variety of reasons. This app is a way for people to face what is haunting them, whatever that ghost might be.

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

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

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

Power of Pain: NERVEmber

By Barby Ingle, Columnist  

In a few short days Nerve Pain Awareness month begins – a global movement known in the pain community as NERVEmber.

I began the NERVEmber project in 2009 as a way to bring more attention to chronic nerve pain conditions such as Reflex Sympathetic Dystrophy (RSD/CRPS) and diabetic neuropathy. The term NERVEmber is derived from the burning pain people with neuropathy feel, combined with the month of November. 

The Power of Pain Foundation hosts the official NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber and bring awareness to the 150 plus conditions that have nerve pain as a symptom.  

The color orange is the international color for chronic pain awareness, which also fits right in with the fall colors we typically see.

Our largest spotlight throughout the month shines on RSD, which is one of the most painful conditions known to mankind. Yet, like many chronic pain conditions, RSD is misunderstood, mistreated and often misdiagnosed. 

Each day during the month of NERVEmber the Power of Pain Foundation will present an awareness task that we can all participate in. This year we are also giving away over $1,000 in prizes -- available to anyone who registers to participate and uses special hashtags on social media, completes daily tasks, and hosts or attends an event. The more you participate in official NERVEmber events, the more chances you have to win!

You can bring more awareness to conditions like RSD, CRPS and diabetes by posting every day in NERVEmber using social media tags on your posts such as @powerofpain and #PaintTheWorldOrange. Using these tags will earn participants chances to win some great prizes.

The Power of Pain Foundation and the #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s, #OrangeInitiative,  #ColorTheWorldOrange, and #ColourTheWorldOrange. 

Official events include tasks shared on social media, wearing t-shirts, Paint the World Orange, and educational series.

The daily calendar of events are available here on the NERVEmber webpage.

One of our newest additions to the project is #painPOP. We are asking people to get involved by popping a balloon and challenging others to do the same or make a donation to help the Power of Pain Foundation continue our education, awareness and access to care programs.

We are asking participants to text, post or say something similar to, “I have the NERVE to be HEARD!"

We will also be posting educational videos on YouTube and our website. Watching videos and commenting on them gives participants more ways to win great prizes. For #PaintTheWorldOrange, we ask participants to post their #NERVEmber pictures on social media and to share your pics as you #PaintTheWorldOrange. Be sure to hashtag it #NERVEmber #PaintTheWorldOrange to increase awareness and your chances to win POP prizes.

Participants are also invited to create graphics of their own using #NERVEmber and #PaintTheWorldOrange. Don’t forget to WEAR ORANGE all month long! You can upload your orange photos to help us paint the world.

Tens of thousands have participated in past years from around the world and we are expecting even more this year. Don’t miss out on being part of a movement to make a difference.

For more information on NERVEmber visit http://powerofpain.org/nervember

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.

Jumping from Fire into Work Comp Nightmare

By Ron Angel, Guest Columnist

I was injured on July 1, 2001 while fighting fire for the U.S. Forest Service in Tok, Alaska.

At the end of a long day, we were setting up camp and I was carrying heavy packs which weighed about 100 pounds.  While walking I felt pain radiating from my neck and through my shoulders. After a restless night, I woke up the next day with a stiff neck and more pain. 

Every day for the next two weeks it got steadily worse and spread down my right arm. At the end of the first week I went into a local clinic where the doctor knew right away that I had blown out a disc in my neck. He prescribed Percocet for my pain.

After I returned home, the pain continued to worsen and I ran out of Percocet; so I went to the ER in Sandpoint, Idaho. They refused to give me narcotics for pain and gave me Neurontin instead, which did nothing for pain relief.

The pain continued to increase and it was more than I could handle. It was an 11 on a 10 scale so I walked into my doctor’s office in tears and showed him I was unable to lift my arm. He set me up for an MRI, which showed I had a herniated disc and two bulging discs.

Ron Angel

I had submitted a claim to the Department of Labor’s Office of Workers’ Compensation (OWCP) immediately after returning from Alaska. I tried to get OWCP to help me, but was mostly unable to contact them. When I did get a hold of someone, they had no sympathy and were extremely adversarial. 

I consulted with a neurosurgeon and he said I needed surgery immediately. I called my health insurance, but they said it was work related so they would not cover it. I still had no response from federal OWCP. 

After not being able to sleep for nine days due to the pain, I could no longer take it. I got my pistol and had it on my lap. I called Blue Cross Blue Shield and told them that if they didn't help me I was going to kill myself immediately. They begged me not to and said they would cover the costs and deal with Federal OWCP. I had my lifesaving neck surgery on August 9, 2001.

I finally received a letter from OWCP dated Oct. 16, 2001 telling me they decided to accept my claim. I would have been dead had I not had the surgery to relieve my neck and arm pain. 

Federal OWCP does not accept back injuries, brain injuries or heart injuries for a settlement, but if an injury of one of them affects an accepted body part they will pay a settlement for the loss of use. Due to the loss of strength, mobility and the continuing pain, they rated my right arm a 23% loss.

During a follow up with the surgeon in 2004 he noticed that I had some movement of an adjacent disc that was causing me some discomfort. He said this is common with fusion patients and that we should just monitor it. If it started to cause me more problems he would have to go back in and fuse the next segment. This is called adjacent segment disease and it occurs in about 25 percent of fusion patients.

I am now retired and a couple of months ago I began to lose strength in my right arm, which I can't raise above my shoulder.  Pain is now radiating from my shoulder down to my elbow. I would rate my pain at a level of 4 today.  I contacted OWCP for authorization to get a new MRI, but they informed me that due to the lack of activity they had closed my case in 2013.

I explained they should have provided notification because my surgeon had said that eventually I would need another fusion. They told me that since they closed it, I will have to file another work comp claim for a re-occurrence of the injury. 

In order to re-open my claim, OWCP requires a narrative from the doctor that states the new symptoms are connected to my original injury in 2001. They also require all of my medical records since 2001, five other requirements for the doctor, and three pages of questions that I have to answer. 

My surgeon says the bulge in my disc is severe and another fusion is necessary, but he won’t provide a statement to OWCP because he is tired of dealing with them. He said he has another patient who has been trying for approximately two years to get his claim reopened, unsuccessfully. He doesn't have time to play their games. 

Since my doctor will not give me a statement, the only way I can get it fixed is if my health insurance will cover it. I'll be responsible for 20% of the cost!  This could have been avoided if OWCP had contacted me before arbitrarily closing my case. 

Now it looks like I get to go through the same trials to fight for my next fusion, which OWCP claims was not caused by the original injury. It looks like my bureaucratic nightmare with federal work comp is starting all over again.    

Ron Angel 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.

Mourning the Loss of a Life Once Had

By Jennifer Martin, PsyD, Columnist

Being diagnosed with a chronic condition is a loss.  In fact, it is comprised of many losses. 

It may be a loss of the person we used to be.

It may mean a loss of independence.

It may mean a loss of dreams and goals.

It may mean a loss of some of the people in our lives who we thought were close.

It is the loss of the life we once had.

For many of us with chronic conditions, living with pain or illness means daily medications, injections, surgery, physical therapy, and weekly or monthly doctor appointments.  Not to mention living with constant pain. 

These are things we could never have dreamed of before our diagnosis. We are forced into a life-long journey that is strange, painful and full of new challenges.

We now need to try to figure out how to help our family and friends understand what we are going through, while we ourselves try to decipher what it means for our future.  We need to figure out how to balance work, family, kids, taking care of a home, and hobbies – all now with pain, fatigue and frustration. 

Often times, depression and anxiety step in when we realize that the life we once had is now gone and that our future is filled with the unknown.  The mourning process begins.

It is important at this point to allow ourselves to experience the mourning process.  There is no one-size-fits-all when it comes to grief and mourning.  Cry, scream, and yell if you have to.  Talk to a friend or therapist if it would help.  Start journaling.  Write a letter to your pain and rip it up or burn it.  It doesn’t matter what you do -- just do something!  And then, at some point, it is important to try and live a new normal.

Finding a new normal means weaving our way, however slowly, through the new challenges we face daily.  Do some research and find a great doctor who you trust.  Research the medications you are being prescribed.  Find what works for you, whether it’s hot/cold packs, a heating pad, medications, rest, a support group, yoga, acupuncture, meditation, or light exercise.

Plan for the future as best you can:  Set new goals and make a plan to reach them.  Do what you can each day.  Talk with your family and friends about what you need from them and work on being comfortable accepting help.

Having a chronic condition, however painful, uncomfortable, horrible, scary and unfair, doesn’t mean you can’t be happy again.  But in order to be happy it is important to mourn the loss of who you were and slowly put the pieces of your puzzle back together.

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.

Chronic Pain Lessons: Paying It Forward

By Pat Akerberg, Columnist

Millions of us have gone through an exhaustive search involving multiple physicians and tests -- and then waiting and worrying to understand what causes our pain.

When first hearing our diagnosis, there’s relief in finding a name for our suffering.  We reason that if our condition has a name, then it must have a cure or treatment.  Sometimes things do fall into place that way. 

But if they don’t, the uncertain path ahead creates a fear of the unknown and raises many worrisome questions that beg for answers.  That was my case. 

Here are some lessons that I’ve learned along the way to tame the fear and provide some proactive direction:    

Don’t allow fear to take over.  It has been shown that stress can aggravate an already painful condition.  Worse, underlying anxiety has a way of undermining our judgement and clouding our decisions, just when clarity is most needed.  Some medications can even have that effect.

Find an advocate.  You may be off-kilter, so it’s wise to enlist a friend or family member to accompany you to appointments.  He/she can be an invaluable resource who can take notes, help with recall, and remind you what to ask.

Join a support group.  There’s an irreplaceable strength gained from others’ sharing their similar experiences, support, and friendship.  Giving help and receiving it offers a two-way chance to find meaning and purpose along the way.  My facial pain support group – www.fpa-support.org – is often a lifeline for me.

Slow down.  Many of you may be working, have families to raise/support, live alone, etc., and have a heightened sense of urgency to get your pain under control quickly.  Speed can cause hasty choices that can’t be undone before the risks of all options are considered. 

Become informed.  Take an active role in your health care by doing a solid amount of research (see PNN's patient resource section here), networking, and physician interviews.  Prepare questions beforehand and don’t hold back. If your questions aren’t received well, that’s a red light. 

The decisions you make will impact your life going forward.  I assumed there would be responsible, committed after-care with my brain surgery.  When serious complications happened, I learned (too late) that was not the case.  Had I clarified upfront, my choice in surgeons would have been different.

Learn how to describe your pain.  Assist those treating you by using specific pain terms that describe yours, such as: stabbing, shocking, burning, tingling, pins and needles, numb, intermittent, constant and describe where.  It helps to keep a daily log of your pain patterns.

Current medical practice relies on the 1 to 10 scale for pain with frowning and neutral faces.  Many of us feel pain way beyond a 10 and need to explain that respectfully. 

Looks can work against you.  If you make the mistake I did (holding onto some vestige of control) by wearing make-up and fixing my hair – beware.  Unfortunately, many doctors judge us by visual appearance and if they think we look “good,” disbelief or downgrading of our pain and need for medications may follow.  This can apply to some family members and friends too.

Don’t act without a clear diagnosis.  Different treatments or medications have varying degrees of success, depending on your diagnosis.  Specific protocols for your particular diagnosis need to be followed. 

All too often I’ve observed individuals with trigeminal neuralgia who aren’t clear about their diagnosis, anatomy or specific pain, but who still prematurely consider having surgery or other destructive nerve procedures done that they regret later.

Get more than one opinion.  Research the experts nationwide who have proven track records.  Many surgeons or physicians will consider phone consults.  So don’t limit yourself solely to local resources.  If I had a do-over, I would have gone out of state.

Don’t wait to do this until you are at the end of your rope.  You will also need to investigate what your insurance will and won’t cover. Pay attention to the odds of those things that research indicates are more successful and ask others about their experiences and any complications involved.

One size does not fit all.  You can’t automatically apply someone else’s experience to your situation and assume it will be the same.  We each have different genetics and medical histories.  Results vary individually. 

Consider complementary and alternative medicine.  If initial medications don’t work, don’t assume surgery is next.  There are many combinations to try along with other alternative options.  Alternatives can involve upper cervical chiropractic (a unique specialty), acupuncture, cranial-sacral therapy, massage, supplements, and nutritional approaches.

The downside may be some out of pocket costs.  The upside holds potential benefits with very low risk. 

Trust your instincts.  This is the trusty combination of your intuition and innate instincts (or gut feeling) known as the mind-body connection.  You know yourself better than anyone.  If in doubt, wait until you reach an inner peace or something else emerges.

Begin with the least invasive, low risk options first and invasive last.

Adjust your expectations.  Chronic pain alters our lives and that of our loved ones.  Some people will have empathy, some may not believe you entirely, others will be amazingly supportive, and others may be pretty disappointing.

It’s not your fault!  When you can’t work, get out, drive, or suffer other limitations, it can be very isolating.  We can become be our worst critics adding insult to injury.  Find healthy distractions, one of mine is coloring books for adults.   

Express yourself.  To counter blue moods, reach out even when you don’t feel like it.  Learn to ask for help.  Holding it all in undermines our psychological and emotional well being.  A few close mutual relationships with people who care and try to understand are good medicine. 

Thankfully, our friends and family help us to cope one day at a time, believe that something better is possible, and know that we are not alone in this learn-as-you-go journey.

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.

7 Things You Should Tell Congress About Pain

By Janice Reynolds, Guest Columnist

With all the shock, discussion, and fear the CDC’s so-called “guidelines” have raised, another threat has slipped past us.  That threat is legislative involvement in pain medication, as well as the belief that addiction to prescription medication is out of control and the Food and Drug Administration is derelict in its duties.

For some politicians, pain is not bad enough to need opioids unless you are dying of terminal cancer.

A group of U.S. Senators wants to investigate the FDA for approving OxyContin for children. Recently, presidential candidate Hillary Clinton was quoted as saying, “We have got to take another look at the ease with which the opioids are being prescribed.  I am very concerned that the FDA has approved a form of opioids for children. And I find that absolutely incomprehensible." 

I gather they would rather sick children be left to suffer.

What is going on?  Addiction to prescription medications is declining due to costs and abuse deterrent formulas.  The approval of OxyContin for children should not have raised concerns.  Remember all the panic and hysteria with the approval of Zohydro?  It has been over a year without problems, not that anyone who cried “wolf” about Zohydro has followed up on that.

I believe it is imperative that providers who understand good pain management join with pain sufferers and write to our Senators, Representatives, and Hillary Clinton -- not only to dispute the CDC, but to tell our stories.  We are a significant number and understand the truth.

People in pain are millions strong and should be having a bigger impact.   Everyone needs to recognize that chronic pain covers hundreds of pain syndromes, and one treatment does not work for everyone.

There has been quite a lot in the last year belittling people with pain and spreading misinformation – including one horrible article with the headline “Commentary: Exaggerating our pain.”

The myth that there is no evidence to support the safe use of opioids is being constantly reinforced. It is so very important we speak up and educate those in government who could potentially make our lives even worse.  I believe it is imperative that people with pain and providers (who haven’t sipped the Kool-Aid) write and tell our Congressmen and women what the truth actually is.

Here are seven talking points: 

1) Children recovering from surgery were already being prescribed OxyContin off label.   There is no evidence to support claims that the FDA’s approval for pediatric use increases addiction.  Do they believe that children should suffer with pain?

2) With abuse deterrent opioids and higher costs, a rapid shift to heroin and other street drugs is taking place. So where does the prescription drug “epidemic” come from and where is the evidence?

3). The CDC’s alarmist attitude and claims that addiction is caused by prescription opioids is based on the opinions of addiction treatment experts and others with no experience in pain management.

4) 100 million people living with pain should have evoked some type of compassion from the CDC. After all, addiction and obesity are treated as “epidemics.”  One would have to believe the CDC is reacting with prejudice. I can’t recall the CDC ever saying anything about people with pain except in regards to addiction.

5) Those in leadership as well as others need to hear the stories of people with pain; what has caused your pain, what has happened to you individually, and how it affects  your family.  They need to know how hard it is get medication, difficulties with pharmacies, problems finding a provider, the harmful consequences of failed urine drugs tests that are often inaccurate, and the providers who stop caring for patients because they’re worried about the DEA and prosecution. 

6) They need to understand that financial issues are frequently a block to good pain management. Insurance often doesn’t pay or pays inadequately for medication and non-pharmacological therapies that actually work for patients.

7) They need to be asked why they are listening only to the CDC and advocacy groups like Physicians for Responsible Opioid Prescribing (PROP) instead of experts in pain management.

Please take the time to write. We need for these stories to be told – not by getting angry – but by presenting the facts of how living with pain affects you and how the myths about taking opioids for pain affects you.

When you write an aide may call you, so have a brief list of talking points handy. It drives them crazy when you know what you are talking about and can refute their point of view.

As a pain management nurse, it infuriates me that wrong information is being given priority. As someone who has persistent pain and has a good pain plan that includes opioids, I am frightened every day that politicians and regulators will destroy my life.  Without opioids my pain would be unbearable.

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

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

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

CDC Should Listen to Pain Patients

By Shaina Smith, Guest Columnist

In the wake of the release of the Centers for Disease Control and Prevention's opioid prescriber guidelines, patient advocacy groups and chronic pain patients have been anything but silent. For U.S. Pain Foundation, the process by which the guidelines were crafted seems to have left out a significant part of the equation: chronic pain patients.

When it comes to patient care, we are not alone in this battle to advocate on behalf of those who cannot speak. There are like-minded organizations working diligently to ensure the basic rights of the chronically ill. What we are finding within the nonprofit realm, however, is that higher commanding entities, formed to support the health and well-being of patients, are creating additional hurdles for those they should be helping.

Closed door conversations without consideration of the impact such discussions and decisions can have do not create improved methods that will be embraced by pain warriors. On the contrary, they work against the patient and will cause potential harm.

Working alongside U.S. Pain Foundation volunteers known as Pain Ambassadors, I hear too often chilling and heart-wrenching stories about insurance companies bickering over who will cover what prescription (if they have insurance at all), along with state laws that create additional roadblocks to fair treatment and access.

When I learned of these guidelines, I immediately thought of all those individuals who have already messaged me, begging that we come up with a plan to provide fair access to the treatment they were seeking. After reading the survey results generated by Pain News Network and the Power of Pain Foundation, it is clear that the window for providing fair access and treatment for chronic pain patients is closing.

But there is always hope and ways we can unite our voices to gain back a sense of balance in the way patients are treated by healthcare providers, regulators and lawmakers.

Perhaps the most alarming statement made by over 2,000 participants who completed the survey was that the vast majority feel the CDC guidelines would be more harmful to patients than helpful. This statement is supported throughout the survey results; many fear there will be a rise in pain patients committing suicide, and believe the guidelines will not resolve the misuse and abuse issue at all.

The results are not surprising. While the war on drugs has taken the media’s attention by the horns, patient advocacy organizations like U.S. Pain Foundation have been fighting their own battles on behalf of the brave pain survivor; seeking fair and timely treatment, access to integrative and prescription therapies (not exclusive to opioids) and fighting societal stigmas.

Although we are grateful for lawmakers taking a stance to promote easier access to treatment through the elimination of unjust practices such as step therapy and specialty tiers; there are still many proposals written with good intentions that will potentially cause negative impacts to the 100 million Americans living with chronic pain.

Sadly, the CDC guideline for opioid prescribers is one such proposal. It aims to alleviate misuse and abuse, and attempts to be an educational tool for healthcare providers, but also attempts to take the place of a patient’s treatment plan crafted by that patient and their doctor.

U.S. Pain Foundation has for years prided itself in becoming involved in proposed legislation to ensure the patient-doctor relationship is not hindered by regulations that second-guess the doctor’s initial findings, diagnosis and treatment plan for each patient. We will champion for similar models as the CDC continues revising its prescriber guidelines.

In reading the survey results, it is clear that there are many variables which were not considered in the guidelines. One such variable would include insurance coverage for additional treatments if a patient’s doctor follows the guidelines and decides to no longer prescribe opioid medications.

When asked if their health insurance covered non-pharmacological treatments such as acupuncture, massage and chiropractic therapy, 54% of survey participants stated their insurance did not cover such treatment. I shake my head while reading these answers as I find it hard to believe that in this day and age we are still fighting for basic patient rights to access modalities that may lessen a person’s suffering.

Patients Worried What Their Doctors Will Do

Where are pain patients to turn if these guidelines are put in place and they are not even given alternative means to offset their discomfort?

It is inevitable that many primary care physicians or pain specialists will become fearful if they decided to continue prescribing opioids once the guidelines are in full effect. The survey results clearly reflect a large group of worried pain sufferers whose gut reaction is telling them that their doctors will prescribe opioids less often or not at all if the guidelines are implemented.

Moving forward, the nation can learn from the failed attempt at including the voices of those who would be directly impacted by guidelines. When I say failed, I am speaking of the lack of communication between the CDC and organizations that are fighting access issues on a daily basis. I am speaking of the pain patient who was not privy to join in the CDC’s webinar and has not been given a clear understanding of the CDC’s intent.

The CDC should see the concerns spelled out in the survey and the impact the prescriber guidelines could have on patients. Had the chronic pain community been more involved with the development of the guidelines, less concern would be shared among advocacy groups and patient-centered organizations within the United States.

How each proposed guideline may impact a person’s mother, father, chronically ill child, grandmother, sister, husband or friend should have been expressed and explored further. The CDC should have included patient advocates and pain survivors to lend their expertise during the development stages of the prescriber guidelines.

After reviewing the survey results, U.S. Pain Foundation’s National Director of Policy and Advocacy Cindy Steinberg said, “The overwhelming feeling of survey respondents appears to be that the CDC is discriminating against people with pain.”

“Chronic pain sufferers are very worried that if these CDC guidelines go forward, they will not be able to access a treatment that they can rely on,” she added. “They are concerned that these guidelines will be very harmful for them and that they will lead to a lot more suffering for people with pain.”

U.S. Pain Foundation supports all treatment options that will lessen a person’s suffering. Reducing options, which will be the case as healthcare professionals will likely follow guidelines implemented by the CDC, only exacerbates an already existing battle for chronic pain patients.

Pain warriors are unfortunately made to feel that their pain is not real, their attempt at finding relief makes them drug seekers, and they should fail first at other options before receiving the care agreed upon by their doctors. Everyday obstacles faced by chronic pain patients, including me, cause added stress and hardships.

The CDC should consider the already struggling pain survivors before moving forward with guidelines that would impose additional adversity on the pain patient.

Shaina Smith is Director of State Policy & Advocacy and Director of Alliance Development for U.S. Pain Foundation Inc.

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.

Wear, Tear & Care: Aroga Yoga

By Jennifer Kain Kilgore, Columnist

One of the most popular remedies that pain management doctors like to recommend for patients is yoga. Not only has yoga created a revolution in the fitness and apparel worlds, but it also is touted as a great way for chronic pain patients to exercise.

This generally leaves us patients in a strange spiral of “I hurt too much to work out” and then feeling worse because we aren’t moving.

Physical activity is necessary in whatever form we can manage. I have several instructional DVDs, but only a few of them are actually tailored to people with illness and pain. I decided to go hunting for the Big Kahuna.

My search was not in vain: I discovered Kayla Kurin, creator of Aroga Yoga. “Aroga,” which I thought was just a great rhyme, actually means “healthy, well, or free from disease.” Ms. Kurin is a yoga teacher based in London who focuses exclusively on chronic pain and illness, as she uses it to manage her own chronic fatigue syndrome.

“I had tried some naturopathic remedies and supplements, but didn’t find any relief from them,” she said. “For many years I was on strong sleep medication that helped me get some semblance of a night’s sleep and get through the day, but I became resistant to all of the medications and eventually stopped those as well.”

It was around then that she decided to try yoga, as she wandered into a bookstore and saw an instructional DVD for sale. 

“This was a huge turning point for me,” she said. “Once I started feeling better from yoga and meditation, I made a lot of dietary and lifestyle changes that helped me heal.”

Ms. Kurin has now been practicing for eight years and teaching for almost two, focusing on vinyasa flow and restorative methods with Yoga London. She relies on her own chronic illness in order to find the most effective poses for others, as even though yoga therapy is beginning to get more popular, there is currently only limited information about it. She has had to combine several schools and theories -- mostly vinyasa flow, restorative yoga, and iyengar -- to create her own chronic pain/illness program.

image courtesy of kayla kurin

It didn’t take long for her to realize that yoga was beneficial, as she left her first session feeling “very relaxed, but also alert. It was a unique feeling and led me to believe that there might be something behind this whole yoga trend.”

Even then, it took about two to three months of regular practice before she could see lasting effects. There were days she was too exhausted to get on the mat, and when asked how she managed to keep a daily practice, she said at first she could only make herself do five minutes. Five minutes would turn into ten, and so on. As she said, “I think that for both yoga and meditation, the longer you practice consistently, the more results you will see.”

She recommends that patients start with a few different types of yoga to see what works best, such as restorative, iyengar, and gentle hatha classes. “For example, some people with CFS swear by hot yoga; others found it was much too intense,” she said.

Even patients who are bed-bound or recovering from severe injuries can find a way to participate in their recovery. Ms. Kurin encourages them to first check with their doctors before even trying deep breathing exercises or a bed yoga program.

Every class is adaptable. In the chronic pain/illness yoga program, the first few classes are entirely sitting or prone positions. They can be done from a bed or chair, the latter of which Ms. Kurin is going to implement into future online courses.

“For example, if a patient is not able to stand or has trouble switching positions, we can work together to make adjustments to the class so it works for them,” she says.

Her online chronic illness class runs for six weeks with hour-long videos, and costs about $100. It focuses on breathing exercises and relaxation techniques to lessen pain and stress, improve sleep, and increase energy. Students of any level will find benefits. While each chronic pain/illness series shares the same core lessons, there are enough tweaks that even repeat students will learn something new (as I am sure I will, since I took the previous class and adored it; my only complaints were technical in nature, as the microphone hookup had some reverb in the first two sessions).

While online videos don’t offer the immediate feedback from teachers that a live class does, Ms. Kurin likes this format because nobody has to miss a class because of pain or illness. Everything is at the individual student’s pace.

“If a student is struggling with any of the poses, I can make them a video showing them adjustments for their body,” Ms. Kurin said. She is planning live workshops for later this year, having just taught one on sleep and creativity in Greece; her next idea is a chronic pain workshop in Edinburgh, Scotland. She also wants to offer live classes over Skype, which excites me to no end.

I loved the flexibility of the class, how I didn’t have to push myself through sessions when I felt physically terrible. Instead of feeling like exercise, it felt like a day at the spa for my battered body. Ms. Kurin understands her students on a fundamental level; she knows that there are just some days you can’t do it.

But five minutes a day… We can handle that!

The Takeaway: Aroga Yoga, Yoga for Chronic Illness.

For £65 (or $100.38), you get six one-hour videos of yoga, meditation, and breathing exercises; one-on-one unlimited email support for the duration of the course and three months afterward; and two group chat sessions. The next course begins October 19 and ends November 30, and students have lifetime access to the videos.

I will be taking the course again. I hope to “see” you there!

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

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

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

CDC’s Prescribing Guidelines and the ‘Cone of Silence’

By Stephen Ziegler, PhD, Guest Columnist

A recent effort by the Centers for Disease Control and Prevention (CDC) to reduce prescription drug overdose may actually lead to increases in pain, injury, and death from opioids by over-relying on the use of dosage levels in prescribing policies.  

Last month, in a webinar that reminded me of Get Smart’s "Cone of Silence", the CDC introduced draft guidelines for the prescribing of opioid pain medication.

The actual guidelines themselves were not made available in advance, nor do they appear on the CDC website.

However, attendees fortunate enough to successfully log into the webinar could hear the guidelines read to them by the CDC (and perhaps see the guidelines if the technology was working).

While the secrecy associated with the release of the draft guidelines raises several concerns, so do the guidelines themselves, especially the guideline relating to dosage which states: “Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.”

Although dosage is a legitimate concern, there are a myriad of problems associated with the adoption of arbitrary dosage thresholds in prescribing guidelines. In fact, the CDC is not alone; many states throughout the U.S. continue to adopt a variety of dosage thresholds that, once reached, will trigger specific actions or recommendations.

And while those subsequent recommendations or actions may be consistent with good medical practice, the use of arbitrary dosage triggers are problematic because:  1) there may be good reasons for not waiting until a daily dose is reached before taking certain actions; 2) there is no direct cause and effect relationship between dosage and overdose in legitimate pain treatment; 3) converting to morphine equivalency is an error-prone process that can lead to over-dosing, under-dosing, and even under-treated pain; 4) arbitrary dosage thresholds fail to consider individual patient characteristics; 5) many prescribers may consider the threshold a ceiling and will seek to avoid approaching it to avoid regulatory scrutiny and thereby under-medicate and under-treat pain; and, 6) poly-pharmacy and poly-substance abuse, not dosage standing alone, plays a far more significant role in unintentional overdose.

In the October issue of Pain Medicine, I discuss these and other concerns regarding the proliferation of dosage thresholds across the United States and their potential to increase pain and opioid-related mortality.

Prescription drug overdose is a local and national problem, but so too is the under-treatment of pain. While the CDC has paid a lot of attention to preventing prescription drug overdose, they also need to start paying attention to the other epidemic: the 100 million Americans who are impacted by chronic, long-term pain. What we need are balanced approaches, and any prescribing guideline that is veiled in secrecy, or fails to consider the unintended consequences on the treatment of pain, has no place in clinical practice or public policy.

Stephen J. Ziegler, PhD, is an Associate Professor of Public Policy at Indiana University-Purdue University in Fort Wayne, Indiana. Dr. Ziegler conducts research, provides continuing medical education, and consults on the topics of opioid risk management and the impact of drug regulation and enforcement on the treatment of pain. He has been published in several peer reviewed journals and serves as a reviewer for several journals such as the Journal of Opioid Management, Pain Medicine, Cancer, and the Journal of Medical Ethics.

Prior to obtaining his law degree, Dr. Ziegler worked as a police detective and as a Task Force Officer for the U.S. Drug Enforcement Administration.

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 Should Consider Marijuana as Alternative to Opioids

By Ellen Lenox Smith, Columnist

Presently in our country, those that are successfully using opioids for pain relief are feeling dirty and lost -- largely due to fears about addiction and  overdoses. Pain patients often have to cope with physicians who are reluctant to prescribe opioids and pharmacies that are sometimes unwilling to fill their prescriptions.

The Centers for Disease Prevention and Control (CDC) is considering new guidelines that would encourage doctors to shift even further away from prescribing opioids, leaving the patient with little effective medication to turn to.

Why is the CDC not even considering the use of medical marijuana to help these people in need?

The Boston Herald recently reported that hundreds of opioid addicts are being treated successfully in Massachusetts with medical marijuana.

“We have a statewide epidemic of opioid deaths,” said Dr. Gary Witman of Canna Care Docs, which issues medical marijuana cards in seven states. “As soon as we can get people off opioids to a non-addicting substance — and medicinal marijuana is non addicting — I think it would dramatically impact the amount of opioid deaths.”

Witman is treating about 80 patients at a Canna Care clinic who are addicted to opioids, muscle relaxants or anti-anxiety medications. After enrolling them in a one-month tapering program and treating them with cannabis, Witman says more than 75 percent of the patients have stopped taking the harder drugs. Medical marijuana gave them relief from pain and anxiety — and far more safely than opioids.

Patients across the country are also learning they can use cannabis for pain relief, decreasing or even eliminating their use of opioids.  Marijuana works far better than other substitutes since it is not synthetic and does not cause organ damage or deaths like opioids can in some circumstances.

Medical marijuana works naturally on what is known as the “endocannabinoid system,” binding to neurological receptors in the brain that control appetite, pain sensation, mood and memory.

Here in Rhode Island, my husband and I have witnessed the amazing transition of pain patients on opioids that chose to transition to medical marijuana.  Most that turn to cannabis do so to eliminate the side effects of opioids and concerns about their long term use. They still achieve pain relief but know they are gaining that relief in a safer manner -- no organ damage, no teeth getting destroyed, no concerns of addiction and no deaths.

Marijuana may still be illegal at the federal level, but it is legal in 23 states and the District of Columbia, and millions of people are discovering its therapeutic benefits. The CDC should consider adding medical marijuana to the list of “non-opioid” therapies in its guidelines.

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.

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.

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.