What Pain Patients Can Learn from JFK

By Crystal Lindell, Columnist

I’ve recently become kind of obsessed with the fact John F. Kennedy had health issues. Like major health issues. Like Addison’s disease, ulcers, colitis, and back pain issues, among others.

It’s one of the few things most people don’t seem to know about JFK. He was sick. Really sick. And he was often dealing with his health while running the country.

The Atlantic detailed some of Kennedy’s health issues in “The Medical Ordeals of JFK” back in 2013. They talked about how while JFK was in the White House he routinely saw an allergist, an endocrinologist, a gastroenterologist, an orthopedist and an urologist. JFK also regularly took amphetamines and had painkillers injected into his back.

In other words, he went through the same things a lot of us with chronic pain go through. Except, you know, he managed to run the Free World between steroid injections.

There’s a part of me that wishes he hadn’t hid his aliments. The article details how his campaign flat-out denied he had Addison’s disease. The day after his election, in response to a reporter’s question, JFK “declared himself in ‘excellent’ shape and dismissed the rumors of Addison’s disease as false.”

Personally, I had no idea that JFK struggled with so many health issues until I stumbled upon the information while researching chronic pain. And from what I can tell, most people in America don’t realize just how sick he was either.

I can’t help but wonder what he may have been able to do for the stigma associated with chronic illness if he had ever admitted to his aliments publicly though. Imagine if the stereotype of someone with chronic illness was JFK.  Sure, it’s a lot to live up to, but it’s better than what we face now, which is usually something along the lines of, “a lazy, druggie who probably brought it on themselves.”

And maybe he could have even helped people understand that cancer isn’t the only bad thing that can happen to you. And that sometimes, you don’t get better and you don’t die — you just stay sick.

But, there’s probably a good chance he would have never been elected if the American public knew he was seeing Max Jacobson, an émigré doctor from Germany who had made a reputation treating celebrities with “pep pills” (amphetamines).

The thing that really strikes me though is just how much JFK was able to accomplish despite his health. Most days, I’m in too much pain to drive to the grocery store, much less run for president.

From what I’ve read, it seems as though JKF was totally cool with popping as many pills as he needed to in order to keep going. As The Atlantic details, “[He didn’t] believe that the many medications he took would reduce his ability to work effectively; on the contrary, he saw them as ensuring his competence to deal with the demands of the office.”

In other words, he was all for medication if it meant he would be able to endure a press conference.

And I’m also guessing he was the type of sick person who had access to any and all medications that he thought would help him. Something most of us can only dream of.

There was definitely a point in my life when I would have loved taking hundreds of Norco each month so that I could have kept pace with my previous lifestyle. I mean, I probably wouldn’t have a liver anymore, but at least I’d still have my own apartment.

Even on my current doses, my main reason for taking drugs is so that I can do as much as possible. Sometimes that means a work trip to Arizona, and other times it means having the strength to sit up on the couch and type out a column.

So I can completely understand why JFK felt like he did about the pills. But I don’t think most people would.

Heck, the number one comment I get from anyone who finds out how many drugs I take on the daily is, “You need to get off all those medications.” I usually explain that if I “got off all those medications” then I also wouldn’t be able to get off the couch. 

I also assume that when JFK said he was in pain, at least one of the like 23 specialists he was seeing believed him and responded accordingly. Again, something most of us can only dream of.

He also probably had no issues paying for his medications or getting to doctors’ appointments. And I’m sure he was able to see the very best doctors in the country whenever he wanted.

Even knowing that he had all sorts of advantages as a sick person though, there’s still a huge part of me that feels really inadequate thinking about how much JFK got done. I mean, I have literally had to scale back every aspect of my life since getting sick. I quit my side job as a youth leader, which I loved with all my heart. I moved in with my mom. I started working from home. And I even stopped going to the mall as much as I used to.

For me, a big part of being sick has been losing so many of the things I love, and then figuring out how to cope with those losses.

But then, there’s another part of me that thinks of JFK and is kind of inspired. Maybe there is hope for me yet. Maybe I can still live in Brazil one day, or become a best-selling author, or heck, run for office just like JFK did. 

I just need to find that German doctor and get some of those “pep pills.”

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.

Dealing with Fatigue, Frustration and Fear

By Jennifer Martin, Columnist

Sometimes it just gets to be too much; the pain, the fatigue, the frustration and the fear. 

Wondering if things are ever going to get better. 

Wondering if there will ever be a day without pain.

I have always thought of myself as a stubborn and determined person.  When I was four years old I had to wear a cast on my right leg to help stabilize my arthritic ankle.  Even at four, I didn’t let that stop me from keeping up with my twin brother on the playground.

While I was in the middle of my j-pouch surgeries I was determined to finish my doctorate degree.  I finished my dissertation and two weeks after my second surgery, while in pain and out of it because of the pain meds, my mom drove me to L.A. so I could defend my dissertation and get that “doctor” title that I had worked so hard for.

Three months ago I hurt my right knee.  After two rounds of prednisone, physical therapy, rest (sort of) and X-rays, my rheumatologist still doesn’t know what’s wrong and I still have pain every day.  Since the injury, and against the wishes of my husband to stay home and rest, I have continued to go to the gym so I can at least get a kick ass arm workout. 

Why have I done all of these things?  Because I’m stubborn.  And I’m determined.  I try my hardest not to let the pain stop me from doing the things I want to do.  I try to be as normal as possible, because I hate feeling like I can’t do something and I hate for others to think that I am weak, even though I know that I am not.  I also try to take advantage of each day as much as I can because I never know when or if I will be in the hospital again, when or if I will have to have another surgery, or if my arthritis will get worse.

But sometimes it just gets to be too much.  Dealing with pain every day is tiring!  And dealing with the fatigue that comes along with the pain is tiring!  In addition to that, the frustration and fear that things will never get better and that they could possibly get worse can be incredibly overwhelming.

So here is what I do when things get to be too much.  I hope some of these tips will help those of you reading this:

• I take a little time for myself, even if it’s just five minutes.  If I am at work, my favorite thing to do is close my office door, open YouTube on my computer and put on some yoga music.  Then I sit back, close my eyes and take deep breaths.  This does amazing things for my mind and my body.
• I try to remember what is good and positive in my life: my son, my husband, my family, my friends.  While I still have pain, there is still so much I can do.  It helps to focus on what I can do instead of what I can’t do.
• Get outside.  I love the beach.  It does something for me that no other place can.  But I can’t always get there, especially with family and work demands.  If I can, that’s my preference, but if I can’t, even just sitting in my backyard can do the trick.  Fresh air and vitamin D are proven mood elevators.
• I write.  Writing about the pain, the frustration and the fears can be very therapeutic.  Have you ever wanted to vent so badly about the way you are feeling but don’t want to bother anyone with it?  Writing down exactly what you would say to someone else is a great alternative.
• I focus on a goal and plan on how I am going to reach it.  This helps me to focus on something other than my pain and fears.  It can be a big goal (passing my final licensing exam) or a small one  (doing as much as I can this weekend with my son despite my knee pain).
• Sometimes I just have to take a rest and realize that it is okay.  This is really hard for me to do but sometimes it is necessary.  Those of us with chronic pain can’t be expected to do everything and we can’t expect ourselves to do everything. 

Balance in life is key and part of that is taking care of ourselves and letting go of the guilt that comes along with it.

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.

Media Coverage of Pain Meds Often Unfair

By Emily Ullrich, Guest Columnist

As a chronic pain patient, I see a number of damaging political and social obstacles being added to the already desperate, often isolated and depressed lives of chronic pain patients.

Those of us who live with constant pain are too often disregarded by friends and family, who become frustrated that we haven’t gotten better, and/or begin to suspect that we are feigning or exaggerating our illness. In addition, doctors often label chronic pain patients as “drug seekers” and “malingerers.” Patients who need their help the most are often thrown by the wayside.

On top of these devastating blows, chronic pain patients face political, medical, social, and media scrutiny, and are often shamed out of seeking or pressing for the help they so desperately need. Some glaring mistakes are being reported in the media about drug use, overdose, and abuse. These mistakes are being repeated on a national level, and have created a culture of misinformation and stigma.

There is no doubt that addiction and overdose are serious issues which deserve our attention, but the media is manipulating the minds of consumers about the origin and nature of these issues, beginning with the subtle engineering and general processing of words. By that I mean the simple diction and placement of words used in articles regarding pain medication and illegal drugs.

For example, while an article discussing diabetes or blood pressure medication will refer to them as “medicine,” an article about pain medications will often refer to them as “drugs.” That places a negative connotation on the reader's perception of ALL pain medications as being categorically the same as street drugs.

I also read articles on a daily basis which pair pain medications and illegal drugs together in broad general statements, implying that the two are synonymous. In addition, the terms and implications about the use and abuse of pain medications are being used interchangeably; again reiterating in the minds of readers that if one takes pain medications, he or she is an addict, and that by simply taking pain medications he or she is abusing them.

These implications are untrue, unfair, and misrepresent chronic pain patients, misinform the public, and create unnecessary fear and sensationalism.

Like thousands of other chronically ill, legitimate pain patients in Kentucky and throughout the United States, I have been taking pain medication for many years. Without it, I cannot get out of bed and function. I have never once been "high" on them, and I've NEVER considered heroin use.

The real correlation between the two is that pain patients are being forced to fend for themselves and find relief on the streets with drugs like heroin. The government has scared doctors out of doing their jobs when it comes to addressing pain, and because of the media's continued manipulation and sensationalism in regard to pain medication, society now shames pain patients out of seeking medications they need.

There is an essential truth being conveniently omitted from most current articles regarding pain medication, street drugs and overdose, and that is that there is a direct correlation to the increase in heroin use and the implementation of growing numbers of laws that restrict prescription pain medications.

People are suffering, but instead of being treated with compassion, they are being treated like criminals and worthless members of society. Legitimate pain patients deserve access to the medications which allow them to operate, and doctors should not be afraid to help them. Patients should also not be made to feel they are illicit members of society for seeking a remedy to their medical conditions.

It is time that the media clearly differentiate between addicts who abuse pain medication and legitimate pain patients who use their medications as directed. Also, lines between pain medication use and the use of street drugs must be drawn.

Most importantly, politicians across the country must accept their role in the influx of heroin usage, and its direct correlation to the “War on Drugs.” Laws that limit the availability of pain medication are not based on truth (according to the U.S. National Library of Medicine, the real rate of addiction among chronic pain patients is a mere 3.27%), but are adjusted to fit the motives of politicians and scare the public.

Lastly, as chronic pain patients we must ensure that our voices are heard. We must educate and inform others and, most of all, demand our human right to adequate pain control.

Emily Ullrich suffers from CRPS/RSD, Sphincter of Oddi Dysfunction/Papillary stenosis, carpal tunnel syndrome, endometriosis, chronic gastritis, Interstitial Cystitis, uterine fibroid tumors, migraines, fibromyalgia, osteoarthritis, Periodic Limb Movement Disorder (PLMD), Restless Leg Syndrome (RLS), Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and IBS.

Emily is a writer, artist, filmmaker, activist, and has even been an occasional stand-up comedian. She now focuses mainly on pain patient advocacy as a delegate for 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.

Power of Pain: Tools for Today and Tomorrow

By Barby Ingle, Columnist

Taking each challenge one step at a time can help you gain perspective on your future. There are multiple aspects to pain management to be considered, such as physical and mental health, trends in the healthcare industry, and personal injury liability. Learning about them and putting life into perspective can help us deal with behavioral changes, social isolation and spiritual concerns. 

Understanding that pain causes depression, not the other way around, can be a good place to start. Realize that you have control over your actions, and feeling bad is not a proper excuse for treating others poorly. Doing so can lead to social isolation.

You may not feel like having others around or it may make you self-conscious about losing the ability to do simple activities with them. But creating a support network and staying socially involved can increase your quality of life as a chronic pain patient, as well as increase the human connection that we all need.

Once again, I need to emphasize proper communication for better treatment, attitude, and comfort. Working with your social network, finding out about future trends, and what your doctor has learned can help you keep the pain perspective.

Have hope that a cure will develop. If a new procedure becomes available, you will be prepared and have the support of those around you. When you hear of positive news like a new treatment, ask your doctor about it and if they are willing to give it a try. Find out if it is just another gimmick or if there is real science behind it. Be sure to do your own research and be comfortable with your choices. 

With chronic pain diseases, you have to be your own advocate and motivate others to advocate for you. If you were injured through someone else’s negligence, find out the legal consequences and if any action can be taken. Speak with a personal injury attorney to find out if you have a case. If you do, he can instruct you on how to arrange payments for medical treatments and how the lawyer will be paid. Question if the defendant is responsible for your bills now or if you have to find a way to cover your medical bills and be paid back when and if you win your case.

It is also important to know what happens if you don’t win your case. Ask if you will have to pay charges your lawyer paid to prepare the case or if you have to pay liens. Liens are holds or rights to property or monetary gain on property. Many doctors’ offices will put liens on your case. This means that they get paid before you receive any awards.

Becoming prepared for these new life changes will keep the perspective to your new life on a positive track. Use your community resources such as food banks, church support groups, and non-profits to get the help you need. Help is there, you just have to be willing to take it and put in as much as you can to keep your life on track.

Because chronic pain and bad health in general weakens the immune system, your ability to heal and fight diseases is also compromised. I often can catch someone's cold by being near them through physical contact, such as hugs or sharing candy out of the same dish with a child who has dirty hands.

Often as a pain patient I do not want others to touch me, both for my health and because -- unless they really know me -- they don’t know where it hurts. So I usually ask people not to touch me without asking.

Be prepared to face the pain and have a plan.

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.

Success Stories of Real Medical Marijuana Patients

By Ellen Lenox Smith, Columnist

My husband and I have been licensed medical marijuana caregivers in the state of Rhode Island for over five years. Our lives have been touched by the many people who have been sent our way by doctors for education about medical marijuana. Some of the people below are either our present or past patients, along with some from other states we met and have kept in touch with.

We hope their stories will help you gain the courage to give this safe, non-invasive pain medication a try.

Bob - Paraplegic

Bob arrived at our house in his handicap equipped van and we met him in the driveway. It was difficult to understand Bob’s speech at first due to his intense level of pain. He seemed overwhelmed and lost.

The doctor who saved Bob’s life when he fell off a roof and was impaled and paralyzed, warned him when he awoke from surgery that he would experience intense pain for the rest of his life.  

However, things changed when Bob tried medical marijuana. He vaporized marijuana right there in the driveway, proceeded to tell us that he felt no change, and before he knew it was having a conversation with us. At times, the effects of marijuana are so gentle you don’t realize what is changing.

Bob became an advocate for medical marijuana and almost daily would call on the phone to make sure we were doing okay. He became a gentleman that was able to share, care and feel again.

Bob has since passed and is missed, but we know that his dignity was restored by cannabis relieving his pain. Vaporizing medical marijuana allowed Bob to have a peaceful ending.

image courtesy drug policy alliance

Scott -- Multiple Sclerosis

42-year old Scott, who has a severe case of multiple sclerosis, told me that turning to medical marijuana saved his life. The former customer service representative was thrilled when he found an alternative to using Avonex for his condition. He did not like using the drug because it caused flu like symptoms and a high fever.

By smoking cannabis, Scott is able to control his pain and is thrilled how he is able to move his stiff legs. He also says it relieves his neuropathic pain too.

School Teacher - Ehlers Danlos Syndrome

An elementary school teacher, who asked that we not use her name, was diagnosed with Ehlers Danlos Syndrome (EDS). She was not sleeping and had a terrible time functioning in her job. Then she decided to try medical marijuana. She began taking an indica oil at night before going to bed and a sativa tincture during the day after work. Just 10 minutes after each dose, her pain levels are diminished or completely relieved.  

She finds the night time dose carries into the following day, but doesn't hinder her either mentally or physically.  It allows her to function and be the teacher she was before --- vibrant and focused.

“Without this gift of oils, I would be in continuous pain 24 hours a day, 365 days out of the year,” she told me.  “This does not change who I am. It just changes how I am, functioning and living each day, which should be to its fullest.”

Lori - Spinal Injury

57-year old Lori had been employed as a medical coding technician at a local hospital. In 2007, she had an injury to her spine. Unfortunately, back surgery led to epidural fibrosis. After months of failed alternative treatments and medications, Lori's doctor suggested she try medical marijuana.

She found immense relief using a portable vaporizer (PAX) two to three times a day. Lori no longer has to rely on narcotics for pain relief and her entire lifestyle has changed.

“I have at least half of my life back,” she says. “I am not severely depressed, I get out alone more often, and the pain is there but not ruling my life!”

Stryder - Ehlers-Danlos Syndrome and Epilepsy

We met 5-year old Stryder at an EDS conference in 2013. A pain clinic doctor got in touch with us after meeting with his mother, Angela.

Our hearts broke to see a gorgeous young man crippled from the joys of life by severe medical issues. Stryder barely noticed us and was not conversing. He was pale and exhausted.

We talked with Angela, gave her a donation of our night indica oil (not made from any high CBD plants) and carefully gave directions on how to use it.

They were sharing a room with a woman, and Angela told us Stryder had driven the woman crazy with the seizures he had during the night. But, after the second night of trying the oil, she asked Angela in the morning what she had done differently. When she told her the truth, the woman was amazed with the changes.

Stryder was a different boy. He was talking and interacting like he hadn’t before. Angela believes this was caused by a combination of sleep and brain rest from the seizures. Stryder was alert, smiling, walking, and even went off to play with other children at the conference.

Today, Angela says Stryder is a legal marijuana patient in his state, takes his oil based medication in a dropper and sometime uses cannabis candy to suck on. He is sleeping better at night and is happier.

Angela advocates for medical marijuana to help others get educated with correct facts. When someone said they were against putting cannabis in candy, here is how she responded:

“Would you rather a child smoke it? The drugs that these kids are put on for seizures are devastating, have a lot of side effects and are addicting,” Angela said. “Children are often told to just suck it up when it comes to pain management and that's just not fair. Stryder's success has been unmatched and I will always be an advocate for something that is natural and less harmful as well as effective.”

Maureen - Postural Orthostatic Tachycardia Syndrome (POTS)

The day Maureen arrived to our house, we wondered how she even made it driving to us. Her POTS (a syndrome that causes an abnormally high blood pressure and heart rate) was so severe, she was shaky and extremely pale. Her cardiologist had wanted her try marijuana since he had observed other POTS patients get relief from it.

Maureen’s POTS was diagnosed at age 54, where she was working as an ER technician.  She chose to use the oil and the tincture as needed, until she was put into an experimental cardiac rehab program and began getting saline infusions.  After several months, she found that this helped to keep her blood pressure at a normal level and made her symptoms less severe.

“When you're sick every day for a long period of time, anything that helps is worth it; not just for the physical symptoms but for your mental state as well,” Maureen told me.  

Today, at age 57, she no longer has to use marijuana at all. She keeps her symptoms under control with exercise and saline infusions. However, if the need arrives again, Maureen says she wouldn’t hesitate to use marijuana again.   

Bonnie - Pudendal Neuralgia and Post-Fusion Pain

At 75, retired college professor Bonnie arrived at our home in severe pain. After much education and consideration, she decided to give medical marijuana a try.

In time, as she gained her confidence, Bonnie found that eating brownies with marijuana, along with taking indica oil at night, provided her relief from unrelenting pain.  It also provided some hope, thus improving her outlook on life.

"The only real relief I have had from my pain has been with medical marijuana.  My medicine allows me to enjoy life again," Bonnie says.

Elizabeth - Chronic Regional Pain Syndrome, EDS and Chiari Malformation

29-year old Elizabeth was sent to us by a pain clinic doctor. This beautiful, terribly thin, and discouraged young lady and her mother arrived at our home and it broke our heart. Elizabeth’s CRSP was so severe on her head that she was no longer able to touch it, let alone consider running a comb or brush through her hair.

Elizabeth was a former piano teacher and a recording artist, struggling to hold onto her career.  She clearly wanted to get back control of her life. While in our home, she started to rub our topical on her scalp and we were startled when she said she felt some immediate relief. So began her magical way to help get some quality of her life back.

Elizabeth now administers her medical marijuana in a variety of ways. She eats it with edibles, drinks it, massages her joints with it, vaporizes it, and occasionally smokes it.  She enjoys using a Magical Butter machine that it makes potent tinctures and oils, and appreciates the "no heat" option, which she uses to make CannaMilk.  

Elizabeth found she requires high doses of THC, because she doesn’t absorb it at a normal rate.  As a slow absorber, she doesn't get a big peak in relief, followed by a sharp drop-off. Instead it gives her a pretty consistent relief and doesn’t make her feel “stoned."

drug policy alliance

With medical marijuana, she feels her muscles are not as rigid. She can relax, sleep better, and can touch areas of her skin that used to be too sensitive to touch.

“It has changed my life for the better,” Elizabeth says.

Melvin - Renal Failure, Degenerative Lumbar Disc, PTSD, Headaches

43-year old Melvin is employed as an agricultural-inspector. We met this very intelligent, kind man at our home a few years ago and hoped that using medical marijuana would provide the relief he needed to be able to function better in life.

Melvin did a lot of research about how to use marijuana, what strains to consider, and in time found the best way for him to administer it was with vaporizing and using extracts.

He found that his PTSD was mostly relieved by using the higher CBD strains. Melvin’s PTSD causes unwanted and uncontrollable visions and thoughts. Marijuana slows them down, without triggering emotional responses. Its’ not a cure for his PTSD, but has made it more manageable.

There are two damaged discs causing nerve pain which radiate down Melvin’s legs – making them feel numb, burning and painful. He alleviates this pain using marijuana strains like Bubble Gum, Lucy and Pineapple Express. Without them, Melvin says his back would be in constant pain and he would have to lie in bed for most of the day. With marijuana, he is a functioning employed worker.

“With a huge help from my caregiver I was able to find the correct THC to CBD ratio that works for my PTSD and disc/nerve degeneration. Medical marijuana is my freedom!” Melvin says.

Bill - Cardiac Issues

We met Bill and his wife, Joan, a few years ago. Despite his failing health, the love and commitment between them was so clear. We hoped that medical marijuana would provide the relief needed to allow Bill dignity with the time left in his life.

A former firefighter for 30 years, Bill was diagnosed with just 20% cardiac output. This caused him severe pain while breathing.

Bill found that administering the marijuana in an oil night and using the tincture during the day gave him relief. He was able to sleep again for more than one or two hours. For the severe pain in the center of his ribcage, due to an unhealed fracture, the topical cream gave Bill relief that lasted for hours.

Bill used this form of medication for about a year and wished he had been able to use it even sooner, so that he could have had a better quality of life.  

Sadly, Bill recently passed away at the age of 73.

drug policy alliance

Diana - Ehlers-Danlos Syndrome

53-year old Diana was a national award-winning composer, pianist, singer, violinist, dancer, and actress. She had to turn down a Master's fellowship because of her recurrent back, shoulder, and elbow/wrist pain.  Instead, she worked as lab technician.

Cortisone shots and bed rest were the "treatment" for her pain. For five long years, she wore hard braces from her wrists to her elbows, yet also managed to perform lead roles in musicals (with braces hidden beneath costumes).  

After she was finally diagnosed with EDS, she turned to medical marijuana two years ago. Now, every night, Diana uses an indica oil. Without it, she would sweat throughout the night profusely.  Medical marijuana has also reduced her pain from EDS.

Sally - Stage IV Cancer

Courageous 71-year old Sally has been successfully using medical marijuana for over five years. She began using it after being diagnosed with Stage IV uterine cancer.

Sally has defied all odds by remaining active and engaged in life. She found that using the oil at night gave her much needed quality sleep and lowered her pain. For daytime relief, she found vaporizing controlled her nausea.

“Marijuana has few, if no side effects. It is benign in terms of overall functioning,” she says.

Sally, who was recently told by her doctors that she doesn’t have much time left.

Sally, who was recently told by her doctors that she doesn’t have much time left, is a role model to us all; determined, positive and caring. She touches lives in a positive way and will always be in the hearts of those that have had the honor to know her.

These are just a few of the amazing success stories that I have experienced with patients using medical marijuana. Most people that try marijuana are able to find relief from the different conditions they are striving to live a better life with. 

We look forward to the future when more research is allowed in our country.  This, in turn, would provide the needed support and education for those in the medical field, so they could understand and encourage their patients to try marijuana. Not as a last resort, but as the first choice.

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.

AMA Needs to Get Facts Right About Opioids

By Pat Anson, Editor

This week the American Medical Association launched a new effort to combat prescription drug abuse in the U.S. The AMA is working with over two dozen state and national medical organizations to address what it calls the “opioid public health epidemic.”

While the effort and its goals are laudable, it was disappointing to see the AMA – the nation’s largest medical group -- announce them in a news release full of cliches and half-truths. 

The news release began with this:

“With 44 people dying each day in the United States from an overdose of opioids, we physicians see people affected by this epidemic on a regular basis.”

The “44 people dying each day” figure comes from a CDC study of prescription drug overdoses, which found that in 2010 “opioid analgesics were involved in 16,651 deaths – far exceeding deaths from any other drug or drug class, licit or illicit.”

The CDC study is cited in virtually every press release, news conference and news story that relates to the issue of prescription drug abuse. Over 16,000 people dying from any cause is a serious problem and an attention getter. At face value, the numbers are frightening.

If only they were true.

As longtime patient advocate Janice Reynolds pointed out in a recent column for Pain News Network, the CDC’s numbers are seriously flawed.

“Unfortunately this study is quoted by many.  If you say a tale often enough, it becomes a version of the truth,” Janice wrote. “The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process.

“Did the patient die from lung cancer or opioid toxicity?  Sometimes the latter is entered as the cause of death when it is not the case.”

A close reading of the CDC study also turns up something else. Other medications, particularly anti-depressants, sedatives, anti-anxiety and other mental health drugs, often were involved in the overdoses -- not just opioids.

To quote from the study:  

“Opioids were frequently implicated in overdose deaths involving other pharmaceuticals. They were involved in the majority of deaths involving benzodiazepines (77.2%), anti-epileptic and anti-parkinsonism drugs (65.5%), anti-psychotic and neuroleptic drugs (58%), anti-depressants (57.6%), other analgesics, anti-pyretics, and anti-rheumatics (56.5%), and other psychotropic drugs (54.2%).

Why do we never hear about an “epidemic” of deaths from anti-depressants or sedatives? Because in all of the deaths involving multiple drugs, only opioids are singled out as the cause of death.

The CDC’s research is obviously flawed, yet --- like a bad zombie movie -- this five year old data has taken on a life of its own.

The Washington Post repeated the opioids “killed more than 16,000 people” mantra a few weeks ago. So did Drugwatch.com, The New York Times, Los Angeles Times and Forbes.   

What about the 44 people dying every day? That zombie factoid was easy to find online in Deadline Detroit, the Magnolia Reporter and the Livingston Daily.

Like Janice Reynolds says, “If you say a tale often enough, it becomes a version of the truth.”

The tale would go away rather quickly if the CDC and other government organizations stopped repeating it or simply conducted a new overdose study with a better methodology. But the CDC seems more interested in keeping the zombie story alive.

Dr. Lynn Webster, a prominent pain physician, pointed out in a column last week that the CDC continues to use “fuzzy reporting” about opioids – raising questions about the agency’s impartiality.

“Given the concerns with accuracy of scientific reporting, is it reasonable to increase federal funding to the CDC to battle prescription opioid abuse, as requested? Only with an understanding of the real reasons for the current opioid problem can we solve the problem. Perhaps more dollars should instead go to the National Institutes of Health, which is in desperate need of more funding for pain research and to develop safer alternatives to opioids,” Webster wrote.

Opioid abuse, overdoses and overprescribing are serious problems. So is underprescribing and making opioids unavailable to people who truly need them.

How far has opioid hysteria gone? In a recent survey of pharmacists and drug wholesalers by the General Accounting Office (GAO), over half said DEA enforcement actions had limited their ability to supply drugs to legitimate patients.  Many said they were fearful of being fined or having their licenses revoked. You won't see that story being reported in The New York Times or Los Angeles Times because the CDC and DEA aren't churning out press releases about it.

As Dr. Webster points out, if we’re truly going to address these complex problems, we better get our facts straight.

So should the American Medical Association.

A Pained Life: When There is No Cure

By Carol Levy, Columnist

There tends to be a misunderstanding in the minds of many, including doctors, that people who take opioids for their chronic pain believe it will “cure" their pain.

The idea behind a narcotic is the dulling of pain, or if you're lucky, stopping it in its tracks. It is not designed to “cure” anything.

Patients with kidney stones, as an example, are often given morphine, not because it will dissolve the stone, but because it will help reduce the pain.

When there is no cure, when the ultimate biological mechanism behind the pain is unknown, and when the patient is in pain, what is a doctor to do? What is a patient to do?

To me the answer is simple. They work together to find a drug(s) that will help relieve the pain. Often that means an opioid..

Trigeminal neuralgia (TN) is a good example.

Although theories abound as to the cause of TN, even the most long lived school of thought; that a blood vessel is pressing against the nerve, is not accepted by many in the neurosurgical community.

Some patients are helped by surgery, but a large portion do not and get little or no relief. In addition, many develop phantom pain -- called Anesthesia Dolorosa -- which is truly awful and life destroying in its own way. Does that mean a doctor should offer nothing to try and help? Or is this the time to offer an opioid?

Sometimes my Anesthesia Dolorosa pain is helped when I take my prescribed narcotic (codeine). On a really good day, which is very rare, it even helps my eye movement and usage pain.

Is it enough to make me "able"? No. The pain is still there.

Then how can I say it is helping?

It encases me in a layer of numbness, the pain somewhat outside of me.

Do I enjoy it? (A question asked by way too many) Absolutely not. The codeine swathes me in a net of sticky cotton, a sensation of suffocation and a loss of boundary. But the pain is farther away from me and I can breathe.

We have chronic pain. We know, for most of us, there is no cure.

But too many are trying to take away the one thing that helps some of us get freedom from the pain, even if only a fingertip full.

Please, those who say since there is no cure in a narcotic they should not be given; please, please understand. Even a soupcon of relief is acceptable when that is all there is.

And often, all there is is a narcotic.

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.

When Your Friends Disappear

By Pat Akerberg, Columnist

Has this happened to you?

You get a medical diagnosis that is upsetting and life altering.  Soon it becomes clear that you won’t likely return to your previous life or be your old self again.

Now, more than ever, you look to your closest friends or family to stand by you and catch you before you fall and break, like Humpty Dumpty.   

But like a “trust-fall” exercise gone wrong – right when you need their safety net the most – they aren’t there!  And you fall hard.

Painful, isn’t it?  The pain of betrayal cuts through you like a knife.  It’s a blindsiding blow that you never saw coming.

Since my chronic illness struck, I have been very hurt by the unpredictable disappearance of a number of friendships along the way that I truly thought were solid.

Initially, I reacted the way most who are rejected and took it personally, adding insult to my injury. 

There were also elusive questions, plagued with doubt and recrimination: 

Is it my fault somehow?

Was it something I did or said, or didn’t do or say?

How did I not see this coming?   

These trap questions never have any real answers and just kept me spinning in an unresolved circular loop.

That began to shift when I learned that these undeserved desertions were happening to my trigeminal neuralgia friends too.

We realized that many times the ones who left were the very people we believed we could count on the most.  Some of the neediest ones were also the first to flee.

I reasoned it was about some deficiency in them – a lack of compassion, willingness to be uncomfortable, depth of character, or sincere caring.

I once read that “expectations are resentments waiting to happen.”  Deep down, yes, I had unconsciously assumed they would “be there” for me too.

Instead they purposely made a choice to not be there (a choice I didn’t have).  And when they weren’t, those unmet expectations became a source of my resentment. 

Maybe they excused themselves by rationalizing that they are “too busy”?

Or, maybe for some, it’s because they are still able to hold onto the illusion that they maintain a level of control – something I had clearly lost.  No cold, hard reality had come along to shatter that for them yet.

Who really knows why they chose to leave?

Eventually my questions about them gave way to more pertinent ruminations about friendships. I wondered if it’s realistic to think we can really know or count on the staying power of our friends until we encounter and work through adversity together.   

Things that we believe are shared between us – unique connection, loyalty, understanding, tolerance, mutuality, honesty, trust, humor, etc. – are much easier when they aren’t put to any serious test.

Even a union like marriage filled with vows attesting to honor that sacred relationship may not always last through the toughest of times.

Since there are no friendship vows, I’ve had to get clear about my boundaries and the friendship qualities that matter the most.  

At my lowest point, a long term “friend” judged my condition as “karma” and actually told me, “Everyone is going to die; you’re ‘just’ going to do it sooner.”

The karma notion blames the person and the word “just” implies “no big deal.” 

We were talking about my life!    

The cruelty of her words formed a boundary against that kind of harmful friendship.

Learning Self Care

Once I got past the sting of some friendships fading into obscurity and those that needed to, I began to explore some of those friendships and myself.  I hadn’t really assessed what was or wasn’t there.   

I took relationships seriously and was quite prone to meeting others needs.  Focusing on helping them often trumped my inner voice that warned of my limits, nudged me to ask for what I needed too, and let me know when that was missing.

Unwittingly, I had lost touch with my own self care.

Like many of you, pain limits my energy, capacities, and resources; and Self Care 101 means spending them wisely. 

Holding on trying to make inadequate friendships work takes too much energy. As my illness progresses and my needs shift, I’ve had to learn to loosen my hold and let go of so much that was or might have been.  That applies to some friends too.

It’s easier and wiser to see those departures as a welcome favor now.

That’s okay, because the friends that are left fit better.  The loss makes way for something better to show up.   

Free from dwelling on having been unfriended, I can focus instead on ways to best befriend myself these days. I am also free to fully feel my gratitude for those who are present (vs. missing).

The good news is that so often when disappointments and adversity strike, and while some friends and family run from the problem post-haste, there are also others who show up unexpectedly, and in more authentic ways.

Seemingly out of nowhere, their entrance shifts the whole equation from an exercise in subtraction to one of addition.

And thankfully, there are those bonafide friends who have been there for us all along.  Like my spouse/partner, they are a healing balm that can renew my weary spirit.   

These wonderful souls in our lives show us that there are still many compassionate people out there who truly understand how to care. Finding ways to be there for them too is energy well spent.

Friendships lost are an experience that I didn’t ask for and didn’t want, yet it woke me up to myself again.  It has urged me to treat myself like my own best friend -- a win-win worth cultivating.

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.

Pain Patients Should Come First

By Janice Reynolds, Guest Columnist

In the media, the persistent pain patient should always come first -- before the stories of addiction, overdoses and the inferences of poorly done studies linking the two with pain treatment. 

Most important is the professional relationship between provider and pain patient.  There needs to be therapeutic discussion between the two as to the nature of the pain, how it affects the person’s life, as well as what’s been tried and worked, and what has not worked. The goal should be a multimodal pain plan which works for the patient as well as being affordable.

The risk of addiction should be a concern, but not at the forefront.  Those seeing addiction as an “epidemic” linked with pain management have no valid research on which to base their concerns, only the media and addiction specialist hysteria. 

Unfortunately, many professionals as well as the general public are not only influenced by the media but learn from it as well. The yellow press of today is comprised of articles full of lies, half-truths, and prejudice.  This behavior is seen in professional articles as well.  Many times the basis for an article is some piece of research which is interpreted by the authors to conform to their point of view.

Not all research gives us proof or even a good indication of the truth.  Some studies are flawed and others are inherently bad.  An example of this is the CDC’s opioid overdose study, which is often cited to make the claim that over 16,000 American die every year from opioid overdoses. 

The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process. Did the patient die from lung cancer or opioid toxicity?  Sometimes the latter is entered as the cause of death when it is not the case.  

Unfortunately this study is quoted by many.  If you say a tale often enough, it becomes a version of the truth.

Many times reporters get their information from questionable sources.  Their experts are frequently addiction doctors and occasionally others who are experts in their own minds.  Someone who is expert in pain management is seldom interviewed or quoted and when they are, their message is greatly outweighed by the others or taken out of context.  Selectively presenting “expert” testimony is at best a half truth. 

Reporters need to learn how to read and understand studies, especially if they are going to quote them. In order to know how valid a study is, the size, method, and strength of evidence all needs to be evaluated as well as any weaknesses.  Is this ever done by the media?

There are many fictions. Sometimes pharmaceutical companies are charged with trying to increase their sales by marketing pain medication.  One article said the Institute of Medicine’s report on chronic pain was influenced by the pharmaceutical companies. Another article claimed “our pain was greatly exaggerated” and severe pain really not that common. An article even stated hydromorphone was a long acting form of morphine, an outright untruth but never corrected. There are way too many fabrications to repeat.

One of the biggest challenges for people with persistent pain is the linking of addiction with treatment for pain. Not only the media does it, but even medical organizations geared towards pain such as PainWeek do it.  Yet a Cochrane Review on the available research shows only 4 to 5 percent of people taking opioids for pain become addicted, much less than the 17% in the general population who have addictive personalities. 

I realize there is an irrational fear of addiction (e.g. as a nurse, it was not unusual to have family members of a dying patient worried the patient would become addicted!), but the media should be educating more about pain, pain management, and the true reality of addiction rather than the dangers of addiction and the so-called “epidemic.”

In 1968 Margo McCaffery wrote, “Pain is what the person says it is, existing when he says it does.”  She was heavily ridiculed at the time.  Where Margo once said she would rather be fooled by ten people than let even one person suffer with pain, so many now would rather have 1,000 people suffer with pain than let one person fool them. 

In so many places now, the quality of pain care is measured by the number of prescriptions for opioids written (less is better). Compassion is a forgotten term. I heard a physician recently say only patients dying with cancer should be allowed opioids.

We need to see more accountability by providers and the media for understanding pain, learning about persistent pain syndromes, and about interventions both pharmaceutical and non-pharmaceutical.  There has to be education that not all interventions work the same for everyone; some work better, others may not work at all.

They need to learn if an intervention is affordable or doable. Some medications and many non-pharmacological interventions are not covered by insurance or covered minimally (6 physical therapy treatments a year won’t cut it), making effective therapies too expensive to pay out of pocket. 

Providers continue to get minimal education on persistent pain and treatment options in school.  But when it comes to continuing education they are required to get education on Risk Evaluation and Mitigation Strategies (REMS) for opioids, as well as identifying the addict, yet little about pain treatment.  This lack of edification hinders providers’ ability to care for patients and makes the provider more susceptible to the myths related to addiction.

Providers and the media need to realize the person with persistent pain “owns” their pain. They alone know what it is like, how severe it is, what it prevents them from doing, and most importantly, what works for them and what doesn’t. 

Ethics demand that persistent pain be treated. It is a human right.

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 Reports on Opioids Appear Biased

By Lynn Webster, MD, Guest Columnist

Like most people, I respect the opinion of the Centers for Disease Control and Prevention (CDC). It is our first and last line of defense against everything from chronic disease to full-fledged pandemics. That said, I am perplexed why the CDC would sound an alarm, while at the same time acknowledging that the fire doesn’t actually exist.

That’s more or less what the CDC did in a report finding that approximately a quarter of privately insured and a third of Medicaid-enrolled women of reproductive age (15-44 years) filled a prescription for an opioid each year from 2008 to 2012. The report went on to say that the trend of opioid prescriptions among childbearing women places unborn children at risk for birth defects. On this point, the report does not address how many of the women actually became pregnant and otherwise has a glaring absence of empirical data to support its claims.

If you are a clinician or scientist, the CDC report appears incomplete and biased against people in pain. If you are a patient or consumer of the news, the report is alarming. Neither of these outcomes advances medicine, nor do they help people who abuse prescription medication or those who experience chronic pain.

Without question, opioids must be replaced as a primary method of pain treatment in favor of safer and more effective therapies. It is clear that in many instances, the risks of opioid therapy far outweigh the benefits. However, many patients with pain have no other options, so until patients have access to effective alternatives, this type of reporting is counterproductive.

Because the report does not clarify the actual risks, nor compare them with the risks of continued pain in the absence of treatment, the CDC wades into dangerous territory of conjecture. Moreover, an overreliance on retrospective observational studies makes it difficult to evaluate the true impact of opioid use on the incidence of birth defects or whether other factors, such as the mother’s health status and co-occurring tobacco or alcohol use, were greater contributors. Although neonatal abstinence syndrome can definitely be traced to opioid use, the CDC investigators did not examine why the majority of infants born to opioid-consuming mothers do not develop it.

In addition to fuzzy reporting of the science, ethical issues are apparent in considering all women of childbearing age as fundamentally “prepregnant” when it comes to clinical decision making regarding opioid analgesia. These concerns were well delineated by Kristen Gwynne in an online article at RH Reality Check. Clinicians must always weigh potential benefits against potential harm before prescribing opioid therapy. But this has always been true of opioids and all medications, including nonsteroidal anti-inflammatory drugs, antidepressants and anticonvulsants.

The result of incomplete reporting could be the withholding of opioids from people based on gender and age, regardless of pregnancy status, even when strong pain-killing medications are indicated or when safer alternatives are not available. In fact, according to the American Congress of Obstetricians and Gynecologists, “Abrupt discontinuation of opioids in an opioid-dependent pregnant woman can result in preterm labor, fetal distress, or fetal demise.”

To be viable, alternatives to opioids must be effective and be covered by public and private insurance payers. Commentators who suggest opioids should not be prescribed often fail to present this important perspective and also imply that harm from opioids is inevitable, an error that contributes to the stigma and isolation felt by those whose lives would be crippled without their legally prescribed medications.

And yet, slanted reporting continues. In February, another CDC report appeared, endorsing scientifically vague opioid classifications of “stronger vs. weaker” than morphine. In analyzing the February report, June Dahl, PhD, properly pointed out the error in failing to consider the differing pharmacologic factors, mechanisms of action, formulations and the clinical relevance of relative effectiveness when comparing the medications.

Given the concerns with accuracy of scientific reporting, is it reasonable to increase federal funding to the CDC to battle prescription opioid abuse, as requested? Only with an understanding of the real reasons for the current opioid problem can we solve the problem. Perhaps more dollars should instead go to the National Institutes of Health, which is in desperate need of more funding for pain research and to develop safer alternatives to opioids.

Regardless, solutions cannot succeed in the absence of recognition that uncontrolled chronic pain is a major public health problem, worthy of focus similar to efforts to battle cancer, HIV/AIDS and other life-threatening diseases. Education of clinicians is good but cannot create treatment options or adequate insurance coverage where none exist. CDC officials and others must think about the problem differently and with less prejudice against people with chronic pain. Often the focus is on cutting supply alone; but in reality, this is difficult to accomplish without harming people with genuine pain when the payor system does not adequately cover evidence-based alternative therapies, including multidisciplinary integrative programs.

Instead payors, particularly government programs such as the Centers for Medicare & Medicaid Services and workers’ compensation, prefer the less costly opioid methadone, associated with more fatalities per prescription than any other.

Although a majority of opioid-prescribed patients do not abuse or become addicted, it is undoubtedly true that some people have contraindications for long-term prescribed opioids. These are potentially dangerous medications, which can be fatal. But effective solutions require a multifaceted approach and cannot ignore the needs of people in pain. Opioids formulated with abuse deterrents are needed as is greater funding and less stigmatization of people with the disease of addiction. Certainly, payors should cover safer and more effective therapies.

As I’ve said before, I hope opioids will one day not be needed, and commentaries like this one will be unnecessary. If the public health problem from opioids is too great, then it is the purview of the CDC to report on access to safer and more effective therapies in the interest of the other great public health problem: chronic pain. It is not an option to deny people in pain access to opioids if alternatives are nonexistent or unavailable.

Lynn Webster, MD, is Past President of the American Academy of Pain Medicine, and vice president of scientific affairs at PRA Health Sciences. He is a Pain Medicine News editorial board member and author of a forthcoming book, “The Painful Truth.”

This column is republished with permission from Pain Medicine News.

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

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

Wear, Tear & Care: The Quell Pain Relief Device

By Jennifer Kain Kilgore, Columnist

When presented with the Quell pain relief device, people make one of two assumptions about me: 1.) I injured my knee, or 2.) I am a paroled felon wearing a very forgiving Velcro GPS.

As I said in my recent guest column, I have made it my mission to test as many pain relief products and therapies as possible. Some of them might be familiar to you; others will be of the “new and bizarre” variety. Whatever they are, I will be your Friendly Neighborhood Guinea Pig and review them for your convenience. I only draw the line at “Made for TV” products that are out to swindle the desperate consumer.

Pain patients are certainly desperate. We have a constant refrain humming through our bodies that plays a different tune for each person. Doctors are the musicians taught to hear those tunes -- but how can they possibly learn all the music? How can they hear your specific song and have the knowledge necessary to fix it?

The problem is that sometimes they cannot. They are deaf to your pain, just like that one whale who sings higher than every other whale -- none of them can hear her.

Thus far, doctors have been unable to hear the song that thrills along my nerve endings. This leaves me with no choice but to fend for myself. I could take the route at which they have hinted: find some street drugs and wait for the undertow to take me (not that this is the problem the media makes it out to be). Or I could travel a different road and at the same time realize that this life of mine includes pain. If I can’t get rid of it, I can at least muffle it.

image courtesy of neurometrix

As I said recently in my blog -- Wear, Tear, & Care -- I have been trying the Quell pain relief device, which is made in the great state of Massachusetts (i.e., my backyard). I have been using it every day for more than a month. Here are my findings:

• It absolutely works. I have been wearing it for 35 days. I assume there was some psychosomatic effect at first because I was so excited to try the device after months of hype. Once the initial thrill wore off, I was left with the knowledge that, yes, I have reduced my number of Motrin from 16 a day to four, give or take. I am still on Cymbalta and Lyrica for pain control and situational depression, though I can now contemplate reducing the Lyrica entirely. Before, that was not even a possibility.
• Wearing any kind of medical device during the summer is difficult. I can make the Stride of Pride and show if off with a skirt or shorts; otherwise I have to find pants under which the device can comfortably fit. This means that a good portion of my wardrobe (leggings, skinny jeans, etc.) is not compatible with the Quell. This is a minor concern.
• The Quell is $249.00. Replacement electrodes cost $30 and last for two weeks. I have worn mine for longer than that because A.) I can, and B.) I’m cheap. The electrodes break down quickly, but as a whole they are more durable than traditional electrodes and do not irritate my skin. With the EMPI device, the electrodes left blisters on my back.
• The iPhone app is quite lovely. It has a countdown clock so you can see how long the therapy has lasted or how far away it is. I have become adept at the internal calculation of 60 minutes on, 60 minutes off.
• Unlike other TENS devices I have tried, the stimulation is not distracting, so wearing it at the office is fine.

This is all well and good. But how does the Quell work?

According to their research paper presented to the FDA, the Quell works not unlike other devices that latch onto a dense cluster of nerves in the upper calf. Generally it is best for lower-body pain (sciatica and the like), diabetic neuropathy, and fibromyalgia. I myself have fibromyalgia-ish symptoms, since my pain radiates all over my body. However, I apparently do not actually have the inflammation that is fibro’s hallmark. Doctors will only commit to “chronic pain syndrome.” Since the device works for me, I can say confidently that it treats more than those three conditions.

The Quell is twice as strong as conventional TENS units, does not irritate the skin like traditional electrodes, is less conspicuous, has a mobile app, and can be worn at night. (They say it can be worn at night; I personally found the stimulation too distracting.) It activates endogenous opioids in the body (natural opioids, to say it in English), a different system than the one on which prescription opiates work.

It is, simply put, a wearable intensive nerve stimulator that follows the Pain Gate Theory: The impulses generated by the Quell block pain signals from reaching the brain. As it was cleared to be sold over-the-counter, it is currently not covered by insurance.

I know you pain patients out there loathe the numbers system (What is your pain on a scale of 1 to 10?). I also despise it; this is the only one that has come close to working for me. That’s why I have created a new system. Instead of assigning an arbitrary number to my pain, I am going to tell you what I can do now that I couldn’t do before.

1. I can cut down my daily over-the-counter medication.

2. I can walk for longer periods of time (36 days ago I could walk about 10 minutes before starting to limp; now I can make it almost 30 minutes).

3. I can sit for longer periods of time during the work day (prior to the Quell I’d last 10 minutes before having to get up and move around; now I can make it to 30 before movement becomes necessary).

4. I can focus better on immediate tasks.

5. I have more energy during the daytime, which makes me more social. I have been hanging out with friends more. However, I still practice the chronic pain version of sundowning in the evenings (i.e., I crash).

6. I have been able to resume my almost-daily yoga practice. I even did a 55-minute video the other day (which was   Aroga Yoga’s yoga class for those with chronic illness).

7. I have been able to resume my aqua aerobics practice two to three times per week.

8. I wear my emergency back brace less frequently.

9. I have fewer flares.

FINAL DIAGNOSIS: The Quell device has worked brilliantly for me. While it doesn’t get rid of all the pain I feel, it dampens enough of it so that I can more fully live my life. I hope that it can bring others as much relief.

Jennifer Kain Kilgore 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.

Pain Maps: Raising Awareness About CRPS

By Jessica Mendes, Guest Columnist

There is no shortage of books, articles, research projects and other initiatives dedicated to raising awareness or finding treatments for chronic pain. And rightly so. According to the American Academy of Pain Medicine, a recent market research report indicated more than 1.5 billion people worldwide suffer from it.

What we are sorely lacking in is education about pain, and how “patient as agent” is critical to avoiding a lifetime of disability. By this I mean public discourse to promote initiative and understanding on the part of the person afflicted with pain; including their participation and engagement in their own healing process.

This is an assertion I am fully qualified to make. A year ago I stubbed my toe; now, I am fighting for my ability to walk. I have Complex Regional Pain Syndrome (CRPS), and if this condition was better understood, especially among health practitioners, I wouldn’t be where I am today.

Luckily, I am not lacking initiative. It didn’t take me long to realize that mainstream medicine had nothing to offer me, so I committed myself to research. The sheer complexity of CRPS and its highly individual nature makes it very difficult to define, let alone treat. But the frequency with which I am asked about it continues to remind me how poor awareness is of this troubling condition. I feel a responsibility to share my take on CRPS in the hopes of shining more light in it.

CRPS – also known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain. Its origins are in the brain’s maps or “pain maps.” The extent and nature of this dysfunction varies from person to person. In essence, CRPS causes a distortion or enlargement of these maps.

Brain maps responsible for pain also regulate other bodily functions such as temperature, pressure, vibration, sensation of movement and sympathetic control. Given that the nature of plasticity is competitive, if a map is taken over or “pirated” by pain, its other duties also suffer. This is a simplified interpretation of what I have learned.

As you can imagine, there is no exact science to how this manifests, so this is where individual symptomatology comes in. The way I see it, “hard" neuroscience defines a set group of symptoms and assigns them to a box called CRPS; but this disorder actually falls within the realm of “soft” neuroscience. It’s not western-medicine friendly.

Self-education and a multi-pronged approach are central to healing from CRPS. And that means understanding how your nervous system has gone off the rails, because it’s not going to be the same for everyone.

In my case, I have dysfunction in the sensory neurons that process temperature, pressure and vibration, but how I experience that changes from day to day. My lower leg often cannot tolerate the light breeze of a fan, the touch of cotton fabric or the pressure of a pillow beneath it, so nights are long as I struggle to find sleep. The vibration of a car’s motor, on a bad day, can immobilize me for a week. When I shower, I have to ensure the temperature of the water is precisely what my foot will allow. Slightly warm will inflame it, whereas cool will set off a firestorm of pain. Sometimes cool water feels warm and vice versa.

The nerve cells that process my sensation of movement aren’t working properly either. I cannot do yoga, and walking has to be rationed to gradually increase tolerance. Today, I may take the garbage out; tomorrow I might walk one block. I used to be able to do gentle swimming; now I do ankle rolls in bath water. The trick is to calm and balance your nervous system so that you can gradually “desensitize” and tolerate what is normally healthy, like movement and exercise. Reducing stress is paramount.

Many of the websites, articles or advocacy groups I have come across on CRPS parade images of fire or brain circuitry peppered with ominous red blotches. I get it. On an average day my foot feels ablaze or like it wants to explode. I might feel as if the skin is ripped off the sole or that I am walking on broken glass.

These sensations are real and part of the pathology for all who suffer from CRPS. The problem is that thinking about, focusing on, or agonizing over these sensations strengthens the connections in the brain that are feeding them, further enlarging the pain maps. And these images don’t help.

Another focus for a lot of these groups is the espousal of the mantra “there is no cure” in an effort to raise awareness and galvanize health practitioners to take action. But how do we define cure? Conventionally, this often refers to pharmacology in some form or another, if not surgical interventions. In this sense there truly is no cure. But if you spend any amount of time researching how CRPS develops, you realize how utterly impossible it is to find a one-size-fits-all solution.

And the term “cure,” as it is most commonly used, applies to a fix-it model that doesn’t really demand much from the patient. Not only does that framework lock us in as victims, it is pernicious for CRPS.

For these reasons I avoid the term “cure” and instead use “healing”, “treatment”, “regression” or “reversal”. All of these things are within reach for those with CRPS/RSD, the means of which can be found on a website I created called Pain Maps. But they demand our active participation in the healing process, and a deep-seated belief that a life without pain is possible.

Jessica Mendes is the founder of Pain Maps, an online resource center dedicated to neuroplastic approaches to healing pain and neurological dysfunction. It offers material, sources and ideas that enable non-invasive, drug-free options to reducing nerve pain while exploring new dimensions in the narrative of neuroscience.

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.

Miss Understood: Judged and Defeated

By Arlene Grau, Columnist

I like to think of myself as the type of person who always gets back up no matter how hard I get knocked down. It may not always be as quick as I'd like, but I find my courage and strength through every circumstance. Recently, I got hit with a big blow and I haven't figured out how to get back on my feet and keep fighting.

I had my disability case heard by a judge in May. I knew it could go either way, but I  felt like my lawyer had prepared a really good case and I had a chance.

My lawyer started to present my case to the judge, but as soon as he stated my disabilities the judge took one look at me and asked me how I knew I had Lupus and rheumatoid arthritis. I told him I had countless lab tests done, physical exams, two skin biopsies (I showed him the scars), x-rays, MRI's, and CAT scans.

The judge then asked my lawyer for “proof” showing that I do in fact have these diseases, because letters from my doctors won't do. People have been known to pay doctors to write them, he said.

I was amazed at what was happening. I understand why the judge was saying that, because there is so much fraud going on in disability cases. But I think it would be very hard to fake everything I have. I even showed him the scar I have on my wrist from surgery needed to repair the damage caused by arthritis. My lawyer showed him the file backing up my story, but he still looked like he didn't believe a word I said.

My lawyer was able to provide lab results showing that I am in fact positively diagnosed with rheumatoid arthritis and Lupus. But when he tried to explain them, the judge’s response was, "I'm not a doctor, I can't read these and confirm that."

In the end, the ruling was that my case would continue on another day --- when a rheumatologist provided by the state can either come in or phone in to confirm or deny that I am diagnosed with what I have.

It only took the judge about 10 minutes to decide he didn't want to hear my case. He didn't believe that I was sick, even with the proof documented right in front of him.  One was a lab summary with a footnote from one of the doctors where I was hospitalized, explaining that I was there because I was having an arthritis and Lupus flare.

All he had to do was read it, but he refused.

To date, I've been without disability benefits for 26 months and it has been the most stressful two years of my life. Even with the insurance that I'm paying for, I'm responsible for 10% of the cost of my health care.  My medical expenses are ridiculously high because I need infusions, biweekly blood work, MRI's, etc. -- along with weekly visits to my rheumatologist and monthly visits to see my pain specialist.

Right now I feel so defeated. No matter what I wanted to do or say, I had to sit there quietly and let that man judge me and rule over me with all his ignorant power.

I've come so far when it comes to dealing with people who refuse to understand my diseases or learn about them. But then my trial brought me back to a place where I don't want to be. Being judged by others is never fun. When you're being accused of such a big lie and your character is poked at, you can't help but get hurt and take it personal.

Someone once told me that they might deny me because I can't be 29 and disabled. My response to them was does a five year old child ask to be given leukemia? Does a 23 year old ask to be given breast cancer? Of course not. But sometimes those are the cards we're dealt.

I was two weeks shy of my 23rd birthday when I was diagnosed with RA and fibromyalgia. I was still able to work hard for another 5 years, until they started to take a toll on my body.

Just because the name isn't cancer doesn't mean it isn't a serious disease.

I wish this judge would hear the story of my journey with RA, Lupus and fibromyalgia so he could get a better understanding of just how advanced they're getting. But instead all he sees is the person delivering the information: A young, seemingly healthy, able body.

Frauds have ruined the system for those of us who truly need and deserve it.

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.

Power of Pain: Facing Insurance Challenges

By Barby Ingle, Columnist 

You may have heard about singer Avril Levine’s battle with Lyme disease, a tick-borne illness that left her bedridden for months with debilitating pain and fatigue.

It took a long time for Avril to be diagnosed correctly by doctors. She had to keep researching and advocating for herself before she was finally given proper treatment – a problem faced too often by people with chronic pain and illness.

Sometimes doctors cause these delays, but often insurance companies are responsible.

Americans receive their health care coverage from a variety of sources; through their employers, self-purchased policies, and public programs such as Medicare or the Affordable Care Act.

As the cost of healthcare rises, consumers have seen a significant hike in premiums and out-of-pocket expenses such as deductibles, copayments, and other cost sharing.

Insurance companies are also working to keep their costs down, through policies such as prior authorization, “step therapy” requirements, and specialty tier pricing on medications.

It can be a battle that is time consuming, frustrating, and depressing when an insurance company denies payments for a medication, procedure or medical device. Sometimes the issue is due to a provider entering the wrong code, but most often it is a cost savings issue. Insurance companies can make blanket denials and question whether a certain treatment is appropriate for you. 

What can be done to change this?

Step Therapy and Fail First

We need to abolish the unethical “Step Therapy” or “Fail First” practices by insurance companies – which require a patient to use a different (and usually cheaper) medication than the one prescribed by their physician.

There are patients from all over the United States reporting how they are being forced to switch from one drug to another. This has personally happened to me twice. Both times, I fought the ruling using my medical records and providers support, and the insurance company reversed the decision. However, others are not so lucky. In my case, I had already tried all of the medications that the insurance company was willing to pay for, and I had documented records stating my reaction to each of the medications.  

Usually, a patient can tell immediately whether a medication is working or not, and they should not be forced to stay on drugs that don’t relieve their symptoms. Applying step therapy protocols rigidly to a chronic care patient is not in their best interest and simply creates more challenges.

This practice is especially hard on pain patients who are women, minorities, and economically disadvantaged. Studies have shown these groups are most affected and are either disproportionately undertreated or untreated for pain. We must urge insurers to reduce health disparities in our communities.  

If you are faced with a step therapy situation, what can you do? I would suggest you appeal immediately. If you have already tried that medication, get copies of your providers’ records, and your journal entries, and submit them with your appeal.

You can use a journal to help the provider document how step therapy drugs fail to help or make things worse.  Note when complications and bad side effects occur, and report them to your doctor.

You should also have your provider fill out and submit a Medform 3500 to the Food and Drug Administration when you have a bad reaction to a medication or medical device. Send a copy to your insurance company. That documentation can increase the chances of a successful appeal  favorable to you.

Prior Authorization

There are many insurance plans that require prior authorization for expensive drugs or treatments and they may not provide coverage if you do not get prior approval. Once again, this tactic is used as a cost containment measure. Prior authorization covers the correctness, suitability, and coverage of a service or medication. 

The process differs with each plan, but is supposed to ensure that a patient will receive the appropriate level of care in the appropriate setting. This is actually a technique for minimizing costs, wherein benefits are only paid if the medical care has been pre-approved. It can delay care months to years, and can be life threatening and health deteriorating to the patient in many ways. 

Services that may require prior authorization include hospital admissions, back surgery, hysterectomies, maternity stays longer than 48 hours, observational stays, cosmetic procedures, experimental and investigational procedures, and some outpatient procedures.  

Specialty Tier

Insurance companies have divided medications and treatments into four main insurance tiers, based on type and price. The top and most expensive tier is known as the “specialty tier” or “tier 4 medications.”

Insurance companies classify the most innovative, expensive, and most essential to life medications as specialty tier.  These drugs can cost hundreds to thousands of dollars each month. Patients with chronic illnesses such as arthritis, Reflex Sympathetic Dystrophy, hemophilia, HIV/AIDS,  Crohn’s disease, Hepatitis C, multiple sclerosis, and many forms of cancer need these medications to help them function on a daily basis.  

According to the National Minority Quality Forum, 57 million Americans depend on specialty tier drugs that are often expensive and have no generic form yet available. 

With specialty tier pricing, a patient often pays a co-insurance instead of a co-pay, resulting in an out of pocket cost that can become astronomical. This often happens to patients who are  disabled, need catastrophic care, and have little or no income.

It is difficult to appeal specialty tier pricing decisions, as the medications are classified and a list is available to the insured at the time of coverage or when a medication is released to the market.

Many patients and providers give up when they get the first denial letter from an insurance company, but it’s important to keep fighting. An appeal can show a pattern that other patients with the same condition also need the same treatment. This can lead to an easier situation for other patients down the line, or if you need the procedure repeated.   

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.

A Pained Life: Speak Up, Speak Out

By Carol Levy, Columnist

I saw an advertisement on TV a few days ago. It was for some sort of a patch they were hawking for those with pain.

The testimonials were typical: "I use it and it's wonderful," said one man. "I recommend it highly," says a woman.

One testimonial really caught my attention: "I use it because I don't want to become addicted to pain medication."

So now the lie is even in TV commercials: Pain medication leads to addiction. And that should be your first thought and worry.

Never mind the reality that few people who use opioids for pain management become addicted. The lie has taken hold and is now part of the myth and stereotype; there is an epidemic of painkiller abuse and overdoses, and pain patients are on their way to addiction when they use these medications.

What bothers me about this, other than the spread of and belief in the lie, is the too many posts from members of chronic pain groups who have bought into the mythology and do not understand the difference between addiction and dependence.

They write they were on such and such a medication, often non-narcotic drugs like Lyrica, Cymbalta or anti-convulsants; drugs that do not have addictive properties.

"I have tried to get off it but I get sick when I do. Could I be addicted?"

No. Not from the poster's words. It may be physical dependence, which is nothing to be sneezed at. It is a bad problem and requires hard work to get off the medication. But that does not make it addiction.

The American Society of Addiction Medicine defines addiction behavior as an “inability to consistently abstain, impairment in behavioral control, craving, diminished recognition of significant problems with one’s behaviors and interpersonal relationships, and a dysfunctional emotional response.”

PainEDU.org defines dependence as a “state of adaptation that is manifested by a drug class-specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.”

I cannot recall every reading or talking with people in chronic pain who said liked the narcotics they were prescribed. No one has ever said to me, "Wow. I love the way this drug makes me feel."

They may write or say the opioid has helped reduce their pain and that makes them happy, but invariably this lament usually follows: "But I hate the way it make me feel. Foggy, dry mouthed, and slow."

I hate writing and saying this because we have so much on our plates already, just getting through a day with pain, but we have to be the advocates. We have to get out the word that we do not take these drugs for fun. For some of us they are truly life savers. And yet it is our voice that seems to be absent in the midst of all the media hoopla and sensationalism.  

It is past time for us to take up our pens and raise our voices. We are the ones who get hurt by the misinformation. It is up to us to change the conversation.

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.