A Pained Life: Time for a New Direction

By Carol Levy, Columnist

I keep reading comments and articles from those who live with chronic pain, or care for a pain sufferer, decrying the lack of treatment for chronic pain, and what is going on in the academic and regulating communities regarding opioid prescriptions.

It seems to me there is a major component missing: the term “chronic pain,” even if it is a disease unto itself, is a disputed theory and possibly a term in search of a meaning.

I am not a doctor or medical person. I am merely someone who has lived for decades with chronic disabling pain.

Some surgery worked, but most did not. Medications, including opioids, worked somewhat, slightly, or not at all. One reaction to the drug that worked best, a precipitous rise in my white blood count, was so potentially harmful I was told never, ever to take it again. So where does that leave me?

Where does that leave any of us when all the various medications do not work or we are unable to take them?

More importantly, where does it leave the pharmaceutical industry, particularly in terms of research and development?

Why do we keep seeing newer forms of opioids at the same time they are being denounced as evil and the cause of the "painkiller epidemic"?

Why condemn opioids when it appears no other drugs, with different forms of action against pain, are being created or brought to market?

There are drugs for the various miseries that cause pain, such as multiple sclerosis, lupus, trigeminal neuralgia, rheumatoid arthritis and so on. The one commonality is they all cause chronic pain, but the pain is not a common ancestor, if you will, that links them altogether.

So why should all of us benefit from one specific drug?

Is there ongoing research to try and isolate a pathway, a chemical release, or a biological, neurological, and anatomical mechanism that may be specific to all the disorders that cause chronic pain? I don't know. I do know that if there was, I’ve never heard about it.

Craziness is defined as doing the same thing over and over again and expecting a different result.

We keep banging our heads against a wall, crying out: stop regulating, stop calling us addicts, stop saying that opioids are crutches and of no real help.

I think it would help our cause much more if we did not focus on opioids or the problems we have getting prescriptions written and filled.

Instead, I think we need to redirect our energies and demand that research be devoted to finding non-narcotic pain relievers that have the same level of benefit that many opioids offer in reducing the pain.

Opioids cannot be the only answer.

Our voices are ignored when many of us say we hate the feeling of being narcotized. We need and want drug options that do not leave us feeling cloudy, cotton mouthed, and detached.

Only the pharmaceutical industry can change this. I believe that is where we need to direct our energies.

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.

How to Survive the Holidays Without Burning Out

By Elizabeth Katherine, Guest Columnist

My husband and I are very social and we love just about any reason to get the people we love together in a room, and the holiday season is great for that. But it can also be really hectic.

The thing I hear more than anything else this time of year is “I have so much to do.” As a chronic pain sufferer, I know daily life can be overwhelming, and when you throw in all the extras of the holiday season it can get real sticky real quick.

As a mom of three kids and an exceptionally busy husband, I often take on the household responsibilities as well as the additional tasks of holiday prep.

When my pain got to be an all-day everyday thing, I was heartbroken at the thought that these kinds of events wouldn’t be able to happen anymore, or that I wouldn’t be able to produce the kind of holiday that my kids were used to and I was used to.

Pelvic Congestion Syndrome causes me to have constant pain in my pelvis as well as my low back that gets worse the longer I am upright. As I have gotten to know my body and my limitations, I have been able to tailor the way I navigate the holiday season without burning myself out too much. I’d like to share some of my ideas with you all.  

The biggest piece of advice I can give you is to start with lists. Lists are the best thing that ever happened to those of us with brain fog and fatigue. Make a list of all the things you’d like to have done in order to prepare for the holidays. Create gift lists that layout who you’re buying for, and what’d you like to get them.

You can also avoid having to run out for that extra carton of eggs by making a list of the things you’d like to make for holiday meals and the ingredients you will need to make them.

Once you’ve laid out the what, it’s time to plan out the when. This is huge for us Spoonies because we have limited resources when it comes to getting things done. Sit down with your calendar and look at when you have free time. Schedule time to do your baking, household decorating, any parties you’d like to attend, and of course, time for gifts.

Make sure to schedule your rest time too. If you schedule in a 1-2 hour shopping trip, be sure that you also schedule yourself for some time on the couch or a movie afterwards.

Gifts are one of the biggest time sucks this time of year for anyone, but for those of us in the pain community it’s even worse because it involves so much shopping. If you haven’t yet, become familiar with online shopping, consider a membership to websites that offer discounts and free shipping such as Amazon Prime or Overstock.com. Utilizing this will cut down on the amount of time you need to spend out, plus, it’s a nice way to feel productive when you’re stuck on the couch.

If you enjoy the activity of shopping like I do, make sure you schedule a few different trips for that as well. Instead of running from one store to the next, map your plan out ahead of time. Make a list of the things you know you can get at each store you want to go to so you don’t waste your energy bouncing all around for one or two items. Consider pre-shopping online to see what colors and sizes the stores you are going to have in stock so you’re not disappointed when you get there.

Once you’ve got your gifts, you can use some of your resting time to wrap them. If you need help with this project, make it a social activity and invite a friend over to help with tape or scissors. This is also a good way to get any holiday crafting or homemade gifts done. Just don’t invite the person you’re making the gifts for!

Another way to get your to-do list done for the holidays is to delegate like a champ. Ask your spouse to move the decorations out from storage, and put the kids to work decorating the tree. You can curl up on your couch and watch it all while sipping hot cocoa and still feel involved. Or, if you prefer to do it all yourself, break it up into small bursts so that you don’t get too drained doing it all in one sitting.

My last piece of advice is to remember the reason for the season. It’s easy to get caught up in the craziness of it all, and even more so to look at all the things you can no longer do and feel frustrated.

At the core of it all, the holidays are about spending time with loved ones, and the intentions behind your choices are what matter the most. The people who love you aren’t going to care if you didn’t bring fruit cake to the party, even though it was your turn. The people you spend your time with during the holidays are the people who love you, chronic illness and all.

Elizabeth Katherine lives in Minnesota with her family. She writes about Pelvic Pain Syndrome and other topics on her blog, These Next 6 Months.

Elizabeth also enjoys the Facebook support group Spoonies for Life.

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: The ActiPatch

By Jennifer Kain Kilgore, Columnist

Loyal readers, I have returned.

It’s been a tumultuous month of bad days and flares, so while I was absent from my writing duties, I was trying out a hodgepodge of products designed to offer pain relief.

Naturally, none of them worked. Let’s discuss.

A while ago it was suggested that I try the ActiPatch. I was originally introduced to this new form of pain product by Lil’ Bub, the celebrity cat.

I should probably explain that.

Lil’ Bub, full name Lillian Bubbles, is a perma-kitten, meaning that she will retain her kitten-like characteristics for her entire lifespan.

She also has an extreme case of dwarfism and a rare bone condition called osteopetrosis (the only cat in recorded history to have it), which causes her bones to become incredibly dense as she grows older. This causes pain and difficulty when she tries to go from Point A to Point B.

Her person, called the Dude (like Jeff Bridges in “The Big Lebowski”), discovered the Assisi Loop, which is designed to treat pain and inflammation in pets. The device uses targeted PEMF technology (or pulsed electromagnetic fields) to induce healing within the area of the plastic “loop.”

IMAGE COURTESY LILBUB.COM

Before starting her treatment, Lil’ Bub was becoming stiffer and less mobile.  But two years of therapy later, she's running, jumping, and acting like any other cat.

Fast forward to the present day and the explanation as to why I am talking about a cat. ActiPatch is the version of this for humans. I received a letter and package from the president of BioElectronics that contained a thick wad of research and loops for my back, knees, and muscles/joints. I tossed the ones aimed for knees to my husband and kept the rest for myself. Because I’m selfish.

The ActiPatch loops manipulate the body by means of electrical signals, much like TENS devices. The field created within the loop “induces an electrical field in the target tissue,” as  Andrew Whelan stated in his letter to me. These fields affect nerve fibers and cellular function by increasing blood flow and decreasing inflammation, thereby reducing pain.

Additionally, as Mr. Whelan said, the field is “periodically amplified by the background energy within the target tissue, a process called stochastic resonance.” This is when unpredictable fluctuations, or “random energy,” cause an increase in the signal transmission.

During their “Try and Tell” rollout campaign in the U.K. and Ireland, more than 5,000 responded to a survey of trial devices that were sent to interested individuals for only the cost of postage. The company claims there was a “consistent response” of 52 percent reporting sustained pain relief.

Back in my world, I encountered a few problems when trying out the ActiPatch. My pain, as I have mentioned before, is both widespread and diffuse. There are specific areas of genesis, but the pain is by no means contained to just my spine. I have injuries to my cervical, thoracic, and lumbar spine, but the sections with the “loudest” pain tend to be my shoulders, the sides of my neck, my ribs, and my low back. These loops, which are only about the size of a small plate, could not possibly reach all these spots. I’d look like a rubber band ball.

During my trial run, I decided to place the loops both in the “genesis areas” (IE, over my spine directly) and on my shoulder blades. Getting the loop to fit over the curve of my trapezius muscles was difficult. The loops came with a box of Band-Aid-like stickers to hold the loops in place, and I made quite the mess attaching all of them to my skin. Once the loops are placed, however, you simply press a button on the little magnet, a green light comes on, and off you go.

I pulled my shirt on over everything and encountered another issue: the green lights of the loop batteries showed through my shirt, as did the loops themselves. I looked like an undercover informant with poorly-hidden wires. The mafia would surely figure me for a rat. The solution: many layers!

The day I chose for my test run was a normal weekend day. I hadn’t planned anything strenuous and no activities were going to be out of the ordinary. I didn’t wear my Quell, and I also left off the roll-on Stopain that I usually slather on every day. I wanted a day where I could control the variables in order to test the efficacy of the device. My husband and I ran our weekend errands and then decided to take a short walk out in nature. 

My first observation: I did not feel anything from the devices themselves. Others who have used the ActiPatch have told me they felt the sensation of heat within the area of the loops. I didn’t feel anything. I have decreased sensitivity in many areas of my body anyway, so that was not surprising. Additionally, the ActiPatch website states that there will be no sensations.

My second observation: The areas outside of the loops hurt more than normal. I don’t know how good the devices are at affecting areas other than what is in the confine of the loop. The space within those circles felt like a black hole, which is better than pain. While something was definitely going on in the loops -- when I took them off at the end of the day, those areas were red, appearing almost sunburned -- I don’t feel like it helped my widespread pain to any significant degree.

My third observation: I ended up crashing far earlier than normal. By early afternoon I was in my recliner and taking heavier medication.

My hypothesis: The ActiPatch device is probably great for somebody with an injury that is clearly restricted to a certain area. For instance, my husband hurt his knee while running. The loop would be able to focus on that since the pain does not radiate out all over the body.

For somebody like me (an anthropomorphic bruised banana), the loops are far too small. I would need a hula-hoop-sized device in order to make a dent in my daily pain.

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.

5 Lessons About Finding a ‘New Normal’

By Pat Akerberg, Columnist

Once chronic pain and/or illness invade your life, any sense of normal that you once knew is shattered.

“Normal” implies that there’s some accepted standard or pattern that equals a widely adopted way of living or being.  It’s a consensus reality considered culturally acceptable or reliable.

Good health is one often taken-for-granted aspect of normal.  But what if your medical circumstances become anything but normal overnight? When that happened to me, I resembled a nomad who lost her way. I set out on a search for my next acceptable, reliable state.      

Feeling suddenly disenfranchised, without hope and alone, I longed for where I might fit again.  No wonder it was an appealing elixir to read books and articles that suggested a “new normal,” a reliable replacement for my previous one, could be found.   

How many of us have spent untold energy (that we pay for later) trying to find, construct, and mimic something resembling another version of normal when our lives fell apart?

It took me years, a lot of effort, and self doubt before I finally realized that the concept of “new normal” didn’t apply for me. 

After losing my health, a hazy cloud of guilt and embarrassment lingered over my perceived failure to meet others and my own expectations of normal. I was already questioning how a neurological disorder (trigeminal neuralgia) could run a swath of career and personal destruction through the middle of my life in record time.    

Family and friends kept slowly nudging me to get to a more predictable state.  Because I looked okay, they couldn’t appreciate my inability to keep plans on any given day.  Or understand why a multitude of doctor appointments, medications, or brain surgery didn’t make me “get better.”

Unless you live with a chronic illness or debilitating pain, it’s hard to fathom that they trump plans at will. 

Why couldn’t I find the place that the books/articles talked about?

Because pain has a life of its own that dictates yours despite your good intentions.

I finally let go of the unrealistic expectations swirling around me, realizing that constant change laughs in the face of pat answers that pose to corral it!

The kind of life altering changes that happened when I became medically compromised explain why chasing a “new normal” isn’t the journey its’ cracked up to be.

We know that change is a process that involves opportunity and stress (crisis) – even if the change involved is chosen, like changing jobs, buying a new house, changing a hairstyle, or dieting.  These kinds of changes are happening in your life and don’t really alter your life as a whole.  They are small, easy to digest changes.

Then there are the kinds of unfortunate changes that can happen to your life that carry more gravity.  They alter your life altogether.  Some can be temporary, like a divorce or job loss. Others, like losing a loved one, physical impairments, disabilities, or scary medical diagnoses that involve painful, progressive, or rare disorders transform your life overnight.

The very option of fitting into “normality” or consensus reality is taken away when those happen, despite our best efforts.  That’s a bell that rang true for me.

Sometimes ideas about finding a reliable substitute for normal can be motivational, if they’re realistic. But there are other times when expectations can set us out on a journey that disappoints if we’re not careful.  Elusive expectations can carry the potential to set you up for an emotional roller coaster ride.

Just because someone wrote about a concept doesn’t make it applicable or possible for all.  In some cases, expecting to find some steady state that’s reliable or trustworthy enough to call your “new normal” isn’t realistic.

If your condition is anything like mine, one that is progressive and creates other complications, continuous functional losses, or involves treatments that carry further risk, chasing some steady state becomes counterproductive.

What’s realistic instead is recognizing the state of constant change before you.  It’s an overwhelming kind of chaos. That means what’s predictable for me now is that my pain decides everything, not me.

I came to realize that the best way forward for me was to stop expecting myself to find and conform to the self help version of a “new normal” as the answer to feeling displaced. 

Here are five lessons I’ve learned about chasing normal and acceptance:

1)  When your circumstances are ever changing, your responses will too.  It’s all situational.

2)  Changes that happen to our lives present much tougher challenges, such as coming to grips with irreplaceable   losses. 

3)  Letting go of unrealistic expectations can be freeing when the circumstances impacting your health are constantly progressing or shifting.

4)  A "new normal" needs to to match the realities of living with chronic pain/illness.  Change is the constant, predictable steady state.

5) Chasing normal means going beyond the touted answers that we strive to pursue (equanimity, acceptance, letting go, etc.) and redefining them to fit our fluid situations. 

That’s a realistic journey that can deliver.

I know now that expecting my condition to fit into a predictable state won’t help me. Try as I might, chasing some concept of normal everyday while trying to fit in is truly out of my control, just like the weather.

Yet knowing that the weather always changes is something that can be counted on. And that’s a tried and true pattern that I can fit into.   That’s acceptance.

Pat Akerberg suffers from trigeminal neuralgia. 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.

My Life with Fibromyalgia: An Open Letter to CDC

(Editor’s Note: The Centers for Disease Control and Prevention today reopened for public comment its proposed guidelines for opioid prescribing. Comments, which will accepted until January 13, 2016,  can be made by clicking here.)

By Emma Christensen, Guest Columnist

The over-regulation of opioid medications is so very wrong for pain patients. To withdraw their access to opioid medications is reckless and punitive.

Having lived with fibromyalgia for over 15 years, searching for credible medical help and treatment has been one of the most trying experiences of my life.

One physician I sought help from was so at a loss for treating the pain I was experiencing that he put me on heavy doses of morphine. When I learned more about the medication he put me on, I began to question if I truly needed that much in order to live. 

When another physician told me I was very young to be on that high of a dosage, I searched and found literature that supported using a low dosage of morphine to take the edge off of the pain. This method of pain reduction was done in order to allow patients to function using additional alternative solutions such as Tai Chi exercise, foam rolling and trigger point therapy to help reduce significant amounts of their pain. Eventually, I tried these methods and was able to step down to the lowest dose (15mg) that is available for doctors to prescribe.

emma christensen

This low dosage worked well. I felt like I was improving and having the first bits of success in pain reduction that did not require a pill or large amounts medication.  It was just enough to take the edge off the pain. This allowed me to begin to move, exercise, and use other alternative methods of pain relief.  However, it was not possible to do this without the opioid cutting into that first layer of pain. 

I describe pain as an onion -- I had just begun to peel it.  I could not do this without relying upon the small amounts of morphine I was prescribed.

I hate the fact that I have to take this medication. I hate the fact that there is not a better solution. However, all things considered, would you rather pay for a person to be on disability and all that goes with that? Or would you rather have them remain functional and working at a job supporting themselves? I chose to be functional and working, thereby keeping my self-respect and dignity.

The day someone wants to walk a day in my shoes with this painful condition, is the day that they can tell me how my doctor and I can treat my condition.  The pain is unbearable, horrific, and relentless. If I stop any of the methods I use to fight it, it can revert to the levels it was at before I began fighting it; as if I had never done anything to fight it at all.

The low dose morphine has helped me stay functional and keep my job all these years. It takes the edge off of the horrific pain that comes with having fibromyalgia. If anything, I have been more responsible than you have, as the “monitors of society” that wish to deprive me of the one thing that allows me to remain functional.

For years, I have taken only a 15 mg dose and not more, as was originally prescribed. I am prescribed two pills a day for 30 days. I have the extra burden of having to pick up the prescription in person and to sign for it, for each refill. For me, this means I must take time off from work to get the script (if my doctor’s office is not open on Saturday morning). This is another burden.  How much more difficult do you want to make my life?  Why can’t a quarterly prescription be available for someone like me who has a history of appropriate medication usage?

I am frightened to go without the medication because my pain is real. It hurts, fibromyalgia hurts, and it brings me to tears. Just moving my arms and legs is excruciating due to the myofascial knots and inflamed fascia that I endure with this condition.

If you want to question my need for this medication, go nose to nose with me and tell me why. Tell me what other solution you suggest that is just as good and will do what I need it to do, so I can work and keep my job. I have been out there trying every solution I can find for the last 15 years.

If you think you can solve the pain, solve it! Let me or any other person who lives with chronic pain be the judge of your solution, not you. It is very obvious to those of us living in chronic pain that the CDC’s opioid guidelines are being made by people who do not experience chronic pain themselves!

If I had a choice, I would not use this medication. I would not take morphine if I did not need it. I am against using illegal drugs.  In my lifetime, I have worked in two police departments, was married to a cop, and my father-in-law was a chief of police. Additionally, I hold a Master’s degree in Public Administration. I know full well what the abuse of drugs does to families and society.

However, that doesn’t give you the right to tell me and my doctors how to treat my condition.

Blanket mandates of restriction, without credible analysis of the situation, is not a substantial enough reason to deny a class of people who are suffering and in pain their medication.  Proposed regulations should not only solve an administrative problem; but, enhance the medical profession and the support the pain patient simultaneously. Any proposals that do not measure up to this standard are beneath consideration for good practices and reasonable implementation by professional public administrators. 

Like any other crime, incidences of abuse and misuse must be regulated and substantiated in a court of law following the principles of due process. To do otherwise is punitive and unjust towards people who are innocent of such allegations.

There is another reason I felt inspired to write this open letter to the CDC.  It is my education that requires me to respond. If I do not respond and say something now while I have a chance, I could be responsible for my own loss if they take away my medication. 

We all have to stand firm to let the CDC administrators know that they cannot make decisions in a vacuum.  If we allow them to get away with this, then we are less of a democracy and more dictatorship run by administrators who do not know the negative effect that they are having on our society.  My degree is all about building a "good society." Arbitrary rules against pain patients are not the solution to this problem.  You cannot solve a law enforcement issue by doing the minimum of public administration.

If you want to help chronic pain patients, such as myself, put your energies into finding a cure for the pain patients that require these medications to cope with their daily lives; remove the barriers to treatment. You can have my medical case files; my treatments are an open book, as far as I am concerned. I have never misused my medications and do not ever plan to. Please stop persecuting those of us who are ill and find a better way to spend your time.  I am one voice, but I speak for many people who are in pain.

This open letter to the CDC is intended to invite, stimulate and encourage further discussion and commentary on this most important issue of pain management and law enforcement of illegal drugs.

Emma Christensen lives in Illinois. She was diagnosed with fibromyalgia in 2000 after a whiplash injury from a vehicle accident. Emma is currently working to be certified as a fibromyalgia health coach and hopes to help others navigate their way through treatments in order to feel and be better.  She has a Facebook support group called Fibromyalgia Solutions.

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 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: How to Make Holidays Less Stressful

By Barby Ingle, Columnist                                               

Maintaining holiday traditions can be hectic and stressful -- even for healthy people. This should be an enjoyable time of year for everyone, but for people with chronic pain and physical limitations, they bring an extra element of challenges and stress. 

How do you cope with the holidays? Do you approach them in a hectic manner or do you break down the tasks into manageable ones? How do you get through the holiday season and enjoy it?

Here are a few tips I’ve learned about planning ahead, gift giving, and setting the expectation.

Start by prioritizing activities and only worry about things that are important to you and your family. Organize your schedule to include a time for each item to be completed by time frame and importance. Begin early with more complicated tasks and expect a “bad” day or two so they don’t cause stressful situations at the last minute.

It is important to avoid the last minute rush of gift buying and other holiday activities. Either cut out the nonessential steps, get help setting them up, or start early giving yourself plenty of time.

It is also good to work on your preventative health: nutrition, posture, and positive mental attitude.

When it comes to attending parties, I would suggest you attend others instead of hosting them yourself. That way you can make an appearance and leave before all of your energy is spent. You can let the host know that you can only stay for a limited time due to other commitments, and if you decide to stay longer, all the better. Once you explain your limitations to the event host, you’ll find your stress level will be reduced. Setting the expectation early is very important in group settings.

When it comes to gift giving, my best tip is to buy gifts online -- no walking or waiting! The items will arrive at your house or theirs, and you’ll save your energy for other tasks. Take advantage of free shipping when possible and online coupon codes to save money.

When it comes to making your gifts presentable, use gift bags. They’re easier than traditional wrapping, and save time and energy. Although decorations are beautiful, downsizing can still be festive and keep everyone in the holiday mood.

Communication is key to a successful season. It helps to talk to guests or party hosts ahead of time and explain your limitations as a chronic pain patient. When you are hosting an event, delegate duties as much as possible. The same goes when it comes to decorating. It is okay to ask for help and accept your limitations without guilt or blame. It is not your fault that you live with chronic pain. Help others understand your limits by sharing with them ahead of time what they are and telling them what they can do to help make it easier for you and other guests.

For the guests that “will never understand,” realize that you are not there for them. You are there for yourself first and others at the holiday event who love and support you. You can have a great time no matter who else is there or if they understand your pain or not.

It doesn’t matter what anyone else thinks about your health and protecting your body and mind. It is okay to take care of yourself first, especially during the holidays.

Let go of the stress, guilt and excess. Trim down the excess and turn the hustle and bustle of the holidays into a fun enjoyable time to be thankful for, with great memories to hold onto for years to come.

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.

The Importance of Treating Chronic Pain

By Emily Ulrich, Columnist

If you are a chronic pain sufferer, by now you may have read about the proposed opioid guidelines by the Centers for Disease Control and Prevention (CDC), and a recent article about opioids in the New England Journal of Medicine. In the latter, Jane Ballantyne, MD, and Mark Sullivan, MD, wrote that reducing pain intensity – pain relief – should not be the primary goal of doctors who treat pain patients. They suggest that patients should learn to accept their pain and move on with their lives.

This statement is nothing short of infuriating to me and I imagine to anyone who has to live with chronic pain. Many of us have already heard a doctor say, “I don't prescribe pain medicine. Pain won't kill you.”

There are so many things wrong with that ideology, and the “facts” that are being used to support it in the anti-opioid movement, that it's difficult to know where to begin. There are years of research that show that pain left untreated or under-treated does in fact kill. It may not happen right away, but it greatly affects our quality of life and kills us slowly in a variety of ways.

Most of us know that chronic pain causes depression, anxiety, and even suicidal thoughts. There is also a very long list of comorbidities that often come with chronic pain, including hormonal and metabolic imbalance, impaired immune function, skin rashes, ulcers, incontinence, high blood pressure, and much more -- all of which ultimately lead to a decline in quality of life and overall health.

Unrelieved pain can also permanently change the brain and nervous system, preventing the brain from fully resting and developing new cells to repair brain damage. Research shows that the brains of pain patients can deteriorate over the course of a year at a rate which would take a healthy person's brain one to two decades. Cerebral atrophy causes seizures and dementia, both of which can lead to death, and both of which are preventable in pain patients when given adequate pain care.

Staggeringly, none of this seems to have been taken into consideration by the CDC or the doctors who have written this recommended “treatment” approach. One is perplexed by the “sweep it under the rug” mentality of these doctors, and the many who will be influenced by the CDC and the anti-opioid suggestions published in the New England Journal of Medicine.

The facts are this: Opioid misuse is not epidemic in the U.S. (opioid overdose is not even in the top 20 causes of death), but chronic pain is pandemic.

The overwhelming majority of pain patients who use opioids do not abuse or divert them. Yet the majority of patients are under-treated or even untreated for chronic pain. The roots of this mistreatment are myriad, and some are steeped in socio-economic factors such as gender, race, and disability. Minorities are more likely to have their pain minimized or ignored.

In addition, doctors have an exaggerated fear of addiction. Many fear repercussions from the DEA or their state medical board if they prescribe too many opioids, and there is a general lack of pain education on the part of many doctors.

Most of all, money is running the show. It seems that the American healthcare system sees us as useless members of society, who can either be eliminated or turned into eternal consumers. Treating us only with drugs that have dangerous side effects requires a whole new set of medications to treat the host of new ailments that their drugs have given us.

Another cog in the “Big Pharma” takeover of chronic pain (where we are offered treatments such as Lyrica, Neurontin, antidepressants, NSAIDs, biologics, etc., instead of inexpensive and proven opioid therapy) is that the CDC consulted with addiction treatment specialists, as well as insurance and drug company influenced “researchers” who have a conflict of interest.

Dr. Ballantyne, who is a member of the CDC's "Core Expert Group," reports receiving grants from Pfizer and being president of Physicians for Responsible Opioid Prescribing (PROP). She also served as a consultant to a law firm that litigates against opioid drug makers. Dr. Sullivan reports receiving grants from drug makers developing abuse deterrent products and personal fees from Janssen and Relievant.

We have to speak up. We have to educate ourselves and sometimes our doctors. Many of us don't realize (and some doctors don't want us to realize) that we have a basic human right to pain care. According to the Journal of American Society of Anesthesiology, “the unreasonable failure to treat pain is poor medicine, unethical practice, and is an abrogation of a fundamental human right.”

Doctors and patients must acknowledge that chronic pain is deadly. It can cause countless fatal conditions, not the least of which are heart attack, stroke and brain damage. And while opioids are not the only route to reduced pain, they are very important players in the path to pain relief. For most of us, opioids are part of a multi-modal treatment to lessen our pain, as well as a treatment of last resort.

The “alternative treatments” suggested by the CDC, Ballantyne and Sullivan include therapies most of us have either tried or had fail; or they are already part of our overall pain therapy.

In their article Ballantyne and Sullivan write, “Nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient's experiences and offer empathy, encouragement, mentorship, and hope.”

I agree with them on this one point. However, they left out one essential element, the treatment plan that the patient and doctor come up with. For most of us, a main component of treatment is opioids.

Now is the time to speak up, before we have brain damage or die. Join me in creating a #PainedLivesMatter movement.

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

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

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

My Life and the War on Pain Patients

By Suzanne Stewart, Guest Columnist

One of the arguments against gun control is that the "bad guys" will always have access and the “good guys” will die because their weapons are taken away.

That’s what’s happening now to chronic pain patients! We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not "pain free," but with less pain and more living.

Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS.  They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.  

On the other side of the spectrum are those who don't follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take anti-depressants away from the hopeless, or insulin from a diabetic?  

suzanne stewart

The CDC’s new opioid prescribing guidelines could make things a lot worse next year. Many physicians are already  refusing to give medicine for pain when it is truly needed. But those who who are true addicts always find a way to get what they need, while law abiding citizens, suffering daily, have no means other than self advocating. We need to rally and try to do something about this travesty.

Remember, we are not addicts! We are patients with chronic pain, who’s bodies are dependent on medications that help us live. Without proper pain control, there's nothing left.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to "do no harm" will do surgery,  instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

I say pick on the real criminals, not the chronic pain sufferers. I went through an awful experience last year, when my doctor of 12 years unexpectedly left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank!  I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me.

I've read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they've experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

These lay people and agencies are trying to tell us that  exercise and healthy eating habits, along with physical therapy and "behavioral therapy," are alternatives to pain medication. They say that the goal is to stop the overdoses and prescription drug abuse.

The “addiction specialists” scream "HYPERALGESIA" to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted!  We are all individuals whose bodies may become physically dependent,  but that's very different from addiction. If it is working, then how can it be hyperalgesia?

In all honesty, if the doctor  is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief?  The innocents should not suffer for the crimes of a few.

Many patient advocacy groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams to make up these new rules and guidelines. They didn't listen to the voices of the doctors and patients who live in the pain world. Many of the people who put these new rules together have a monetary gain.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who've been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not mangaged well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard. We need to form advocacy groups that will work together for the common good. Let’s stick together and not allow ourselves to be treated so inhumanely.

Suzanne Stewart lives in Michigan. She suffers from CRPS and several other chronic pain conditions caused by a car accident.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Going Off Morphine is Hell

By Crystal Lindell, Columnist

This past weekend, as I tried to get off morphine once and for all, one thought kept going through my mind — if the devil is any good at his job, hell will just be eternal opioid withdrawal.

It’s like, have you ever had the flu, and also food poisoning, and also been hit by a train, and also had the fight or flight anxiety that comes from being chased by a bear for a week straight — all the same time? Well it’s worse than that.

It’s effing hell.

And it’s all made even worse by the fact that I had the cure the whole time. Every single minute that went by, I knew that I all had to do to make it all go away was pop one of those little blue pills in my purse.

I made it to the 72 hour mark last night at midnight. That’s 72 hours without morphine or a hydrocodone. I haven’t gone a full 72 hours without an opioid in almost two and a half years.

I spent all of November tapering down my dose. Going so effing slow. Like three pills, then two pills, then three pills, then two pills. Then after a week, I’d do one pill then two pills, then one pill.

I was down to one pill every other day, of the lowest dose, and I knew the next step was going through withdrawal. I thought maybe it wouldn’t be that bad since I had been going so slowly with the tapering. I was wrong.

Honestly, the first 24 hours weren’t so bad. My body was just chilling, expecting another dose in a day or so. But then, at midnight, exactly 24 hours in, the involuntary leg movements started. I was lying in bed, in the middle of the night, and my right leg would just move. Also, my anxiety started skyrocketing so high you’d have thought I was in a war zone.

By the morning, about 31 hours in, the muscle aches had set in, and everything I had ever eaten over the last two years had started to come out. Diarrhea doesn’t sound like the worst thing in the world, until you literally spend so much time on the toilet that your legs go numb. And then when you do get up, you are so dehydrated that you can’t even walk without holding on to the wall.

There’s other stuff too, the kind of stuff that maybe sounds minor until it happens to you. Like, my nose was randomly running, and I was sneezing like there was a secret cat hidden in the bathtub. And I could not sleep. At all. And if somehow I did get a couple minutes of shut eye, I would wake up drenched in sweat. Also, everything made cry. Seeing the sun? Tears. Facebook posts about makeup? I’d start weeping. Basically the fact that I was alive was enough of a reason.

Again, all these things don’t sound so horrible, but when they are all happening at once, it is literally hell on earth. 

I spent most of the 72 hours watching Breaking Bad — which is either the worst show to watch during withdrawal because it’s all about drugs, or the best because it’s all about the horrible things drugs lead to.

I also spent most of the 72 hours trying to process how I got to this point. Morphine has been so good to me over the last two years. And I stand by the fact that it literally saved my life. If it wasn’t for the pain relief I got from the drug, I don’t know if I would have been able to endure. And I am thankful to morphine for that.

But I wouldn’t wish the morphine withdrawal on Hitler.

And I thought about everyone who has ever had to endure this for whatever reason. And my heart filled with compassion and love for them. Some people like to say that drug addicts are just weak, or lack self-control. Those people are a**holes.

I also thought a lot about how much I wanted to just pop a morphine and make everything better. I thought about it so hard. Vividly picturing the little blue pill in my head and fantasizing about how good it would feel to take just one.

And I thought about how going through withdrawal was a good thing because I wouldn’t even be going off morphine if I wasn’t feeling better. (See Crystal's last column: "Is Vitamin D Making Me Feel Better?")

I felt like this was a final step. A last stand by my pain to suck me in. I had to get off this drug to move on with my life. But it was so incredibly hard.

And I kept thinking about how, I am a good person. I am a strong person. I should be able to get through this. Why am I struggling so much?

My best friend was extremely supportive during the whole thing, constantly checking on me, praying for me, and sending me encouragement. And at one point she sent me a text that said, “I think the last two years were the toughest times of each of our lives (in different ways). Glad I get to see you on the other end.”

The other end. Wow. I honestly never thought I would ever get to see the other end. For a long time, I didn’t even think there was an “other end” to get to.

The idea that I could get to this proverbial “other end” though, it was enough to keep me going.

Honestly, I still feel like I was jumped, and then tossed in front of a train. But I’m doing a lot better than I was doing on day two. From what I can tell, the withdrawal symptoms can last anywhere from a week to months, but it’s those first 72 hours that are the most horrible. And I have made it through those.

I also discovered that there’s a cocktail of over-the-counter drugs that help. Specifically, I have been popping handfuls of Advil, Imodium and Benadryl.

I saw my brother this morning. And as I walked toward him, I felt like I was just regaining my footing after being in a plane crash. Still shaken up, disoriented and feeling like hell, I said, “Well, I’m finally feeling a little better. I made it to 72 hours.”

“Great. Now you have to make it a week,” he said.

Crap, I thought. He’s right.

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.

My Life and the DEA

By Jaymie Reed, Guest Columnist

After going through eight years of a medical maze, I was finally diagnosed with a rare disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). 

It is a horrible disease with the myelin sheath being eaten away from my peripheral nervous system. I live with shooting, burning, cramping feverish pain in my legs every day. On most days I have difficulty walking, so I use a cane or walker just to try and not lose what muscle I have left, as CIDP eats away and kills the nerves that feed the muscle.

I am writing because each month I face being treated like a child or a drug seeking addict by all the healthcare providers around me. It isn’t because I have some bad history of being hooked on drugs -- it is simply because the doctors are concerned about writing prescriptions for opioid pain medications and what the DEA might do to them.

60 Minutes did a story on the heroin and opioid epidemic in our country, but it was on the side of the DEA and there was no mention of the patients that suffer.  The humiliation some patients experience merely trying to pick up their prescriptions each month is horrific. I hear stories every day about patients being treated like hardened criminals -- completely and utterly humiliated by pharmacists in front of people waiting for their prescriptions to be filled.

My local neurologist actually brought in his own pain management physician. At most pain management clinics, both you and Medicare pay top dollar for appointments and urine drug tests. In some cases, people are turned away from pain clinics if they refuse steroid injections, which are often done whether you actually need them or not.  These injections don’t last and for some can cause further damage, leaving behind scar tissue where the injections are made. 

jaymie reed

I was referred by my neurologist to see the pain management doctor. He wrote me a prescription for a drug that cost $587 for 28 pills (there was no way I could afford that) and then ignored my calls for a replacement prescription before offering the same medication that I had previously taken, that I had told him no longer worked for me. When I tried to contact him about this, my attempts were ignored. I was fortunate, as my neurologist decided to treat my pain himself.

Because of the fear the DEA has put into these doctors for prescribing pain medication, they are simply turning away some patients, which only ends up shifting them to pill mills. They throw gabapentin (Neurontin) at us like it is candy, along with any other anti-anxiety meds, but some of those drugs turn you into a drooling idiot! 

What I go through each month to get these prescriptions is nothing short of a nightmare, causing extreme stress which definitely worsens my disease.  The pain medication I am now works about 70% of the time and I live in pain for the other 30% because my neurologist will only prescribe one pain medication for me. He says the DEA will scrutinize him if he does more. He even shared with me that his office gets a magazine once a week with 70 pages of doctors being reprimanded by the DEA.

Our government has decided to take control of the healthcare system and be Big Brother to the very physicians that once took an oath to help people. They constructed a massive control system for ALL patients needing pain medications.  There is a huge difference in the patients that have legitimate illnesses struggling with pain versus the abusive doctor shopping drug seekers. No one has managed to separate or even see a difference between the two.

Because of what I endure at my neurologist’s office, I asked my primary care physician if he would consider managing my pain meds. He informed that he would not because he was moving away from prescribing any opioids at all because he was concerned about the DEA.  I am continually told this.  Seeking a second opinion on my progression, I am told -- without even asking -- that they don’t prescribe pain medications. I am told to seek care at a pain management center because they don’t want to maintain the control systems and record requirements. They are concerned about the risk of being reprimanded by the DEA.

Having once owned my own business, I wanted to feel useful and still contribute to society, so I started a Facebook group for people who have what we call invisible illnesses and have no support system.  We grew to about 500 people in 4 months. People would not believe the stories told about going through withdrawal alone, because their doctor just stopped prescribing pain medication. Or the countless visits to emergency rooms and being turned away because God forbid they treat them for one of the very purposes ER’s exist.

This has been nothing but a disaster for people who suffer with real pain on a daily basis.  This situation is causing extreme harm to those who have valid needs for pain management and no one cares enough to help us because of the 16,000 deaths last year from overdosing.  Not to take away from those deaths, but that number isn’t even in the top 10 causes of death in America.

This is being blown so out of proportion in the media, as most things are, and anyone with any amount of intelligence can see that this nothing more than some witch hunt. People are paying dearly for the mistakes some have made at the hands of a few irresponsible doctors and it hasn’t stopped them at all. There must be something illegal about physicians not treating patients because they are afraid of the DEA. 

I am not writing just for myself but for all of us that suffer with legitimate documented medical need.  The DEA has its database for flagging addictive behavior, so why not let the DEA flag patients and take some of the fear away from the physician?

I am tired of fighting and, like many, am almost to the point of giving up all treatment and letting nature take its course. No one that is ill should have to fight for any kind of treatment. Those of us on disability already have to fight the medical bill/co-pay nightmare. We fight to just make it to the grocery store or pick up our Rx’s. We shouldn’t have to fight with the physicians we put our trust in to help us.   

The big rig that the DEA and now the CDC are plowing down the political healthcare road is going at such a fast speed that no one can stop them, even to take a look at their license.

One of the biggest problems we face is that the very people who are suffering are the ones that need to speak out, but won’t. They won’t sign petitions because they are afraid the pain medication they need will be taken from them.  We have to find a way to get these people to speak out. We have to give them a voice, because if we don’t none of this is going to change.

I will gladly stand up and speak out. And if the DEA takes my meds from me, then so be it. God will take care of the rest!

Jaymie Reed lives in Texas.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Life is Not My Own

By Michell Freeman, Guest Columnist

A little over two years ago I was in an automobile accident that involved a fatality. I was hit by a car that ran a red light.

I was unable to walk without great pain. When I arrived at the hospital, my legs felt very cold and I had lost feeling in my saddle area and later down my left leg. The doctor came in and told my family that I had a sequestered disc fragment in my spine.

The doctor told my husband that I was to lie flat on my back and only to get up to use the restroom. If I lost control of my bowel or bladder, I was to call 911. I was released the same day with a follow up appointment with a neurosurgeon.

I was able to see the neurosurgeon the next day, and was instructed to take a steroid for seven days and given opiate pain medication. He wanted to get the inflammation down. About a week later, I returned to his office unable to walk. The pain had me screaming for help.

I was told that I needed to undergo an emergency laminectomy and discectomy to remove the damaged disc. On my follow up, I let my surgeon know something wasn't right. I was leaking and having sudden urges to urinate. I was also having electric sensations go down my back and legs. I was burning. I had another MRI and was told I had a lot of inflammation involving the nerve roots.

michell freeman

I was referred to a pain management doctor for a series of selective nerve root injections. On my first appointment I was nervous and was given a Valium. I laid flat face down and the nurse said that she was going to walk me through it. The doctor didn’t speak, only to say who he was.

As the procedure began, the pain was terrible. The nurse said he was about to inject Depo-Medrol steroid. I felt a shock of electricity go down my leg and I began to cry. The nurse assured me this was normal and the doctor cleaned my back and walked out the room. I had no feeling in my leg and was placed in a wheelchair.

My pain was not better but increased and my head would hurt so bad I would put an ice pack on it. For a while my body ached. Two weeks later in I went for a second injection. On my third injection while on the table my doctor started the procedure and inserted the catheter. It was very painful. He moved the table up higher with the needle inserted to get a better view using fluoroscopy.

Tears were falling and the nurse said it was almost over. Just as she said that I screamed out loud as my back jerked. The pain was excruciating. The doctor finished and walked out the room without speaking.

The following summer, I went back to the neurosurgeon and he told me my pain may possibly be permanent. He said he was out of options and my primary care physician would need to take over; either helping with pain medication or a referral to another pain management specialist because I refused to get anymore injections. The neurosurgeon, imaging and pain management were all in the same complex.

Last February, I was finally diagnosed with Adhesive Arachnoiditis. I had sent my MRI scans to be reviewed, and the scan taken two months after my surgery confirmed that the Arachnoiditis had already advanced to the adhesive stage.

I have since developed colitis, bradycardia with syncope, and fluctuating blood pressure. I no longer can go to activities with my children at home nor play the same with my four grandchildren. I break plans often due to unrelenting pain.

I have days of not being able to get out of bed. My life is no longer my own. I have lost control of deciding what I am able to do each day. I have to take opiate medications in order to have some life, relief and function. Before finding the correct dosage and keeping it as low as possible, I would constantly cry out and beg to die.

Pain altered my brain and I had thoughts of suicide daily. I lost the life I once knew as an employee with USPS, an active wife, mother, and grandmother. I now live a life of having to learn how to adapt, improvise and overcome.

Michell Freeman lives in South Carolina. She is a member of the Facebook support groups Arachnoiditis Together We Fight and Arachnoiditis Everyday.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

12 Tips to Ensure Access to Healthcare This Winter

By Celeste Cooper, Guest Columnist

When we think of winter, we think of chilly days, getting cozy under a soft fluffy blanket, or curling up with a warm drink and a good book. We think of holiday festivities, and time with family and friends.

And as we prepare for winter, maybe we should also consider a safety plan that will assure access to the healthcare we need.

Those of us who live with chronic pain or illness have learned to expect the unexpected. We know that our symptoms can escalate without warning. Some of us experience a worsening of symptoms during the cold and dry winter months.  We may need additional medications to manage our symptoms or make more frequent visits to the doctor than usual. We need to do something to make sure our needs are met.

The following are some suggestions to make the winter months less intimidating:

1. Know what’s in your medicine cabinet. Take an inventory of medications, including prescriptions and over-the-counter drugs.

2. Dispose of outdated prescriptions, vitamins or supplements by following the Food and Drug Administration's guide on “How to Dispose of Unused Medicines."

3. If a replacement prescription is needed, ask your doctor or pharmacy for a refill now.

4. Know your insurance company’s policies on early refills before a winter storm hits.

5. If transportation or road conditions interfere with your ability to obtain a prescription, a substitute medication may be needed. Be sure to clarify with your pharmacist any differences in the medications or things to watch for.  

6. Most medical practices have a cancellation policy, sometimes imposing a fee if you don’t give 24-hour notice. Ask your doctor’s staff about their policy when a winter storm prevents you from keeping an appointment.

7. Identify your support network in case someone needs to pick up a prescription for you or provide transportation to the doctor.

8. Get to know your pharmacist so they can help you anticipate your needs. Ask for their business card and keep it where it is readily available, especially if you are not the one picking up your prescription.

9. Check to see if a pharmacy in your area delivers. If it’s not in your insurance network, check to see if your insurance carrier will make an exception under special circumstances.

10. Have information on an alternate pharmacy handy in case yours does not have the medication you need. Pharmacy inventories can also be affected by winter weather.

11. Consider using a mail order prescription plan. Paperwork from your physician may be required.

12. If you already use mail delivery for your medications, contact the supplier. Ask them how they protect your medications from extreme temperatures during shipment. Frigid temperatures can alter the potency and stability of certain medications. Even if you live in a temperate area, your medications may travel through areas that are not.

Let your doctor and pharmacist know you have an action plan and ask them for any suggestions that will assure your access to medication this winter.

As you get ready for winter and make plans for the holidays, also consider how you will manage your healthcare needs. If you are prepared, you can enjoy a healthier and safer winter.

Celeste Cooper, RN, is an advocate, freelance writer and author. She is also a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain, and the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain book series.

Celeste enjoys spending time with her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Life with Migraines

By Sara Batchelder, Guest Columnist

I have had migraine disease since I was 22. My first migraine was in 1992, the year I graduated from college. 

I am now 45, and my migraines have become chronic and daily.  I have lost two jobs, many friendships, my social life, and my relationship of eleven years.  This year, I also lost my ability to work full-time at a regular job.  The only reason I can still work part-time is that my ex employs me and allows me to work whenever I am able.  Thank goodness for that. Working gives me a purpose and makes me feel like a productive member of society.  It is an extreme struggle to work twenty hours a week though. 

I also have thyroid disease (my thyroid gland was removed when I was 29), celiac disease (I have been 100% gluten free for a year), depression, anxiety, infertility, and extreme allergies to many things, such as food, pollen, dust, cats, you name it. 

I now have a multi-pronged approach to my treatment.  For migraine, I have botox injections every three months, I see a “natural MD” for various treatments, and I take Relpax (a triptan) and opioids (Norco and morphine). 

I am still learning a lot about celiac disease, but I stay ever vigilant that I do not ingest any gluten whatsoever, even one molecule.  It’s a learning experience and constantly challenging.  For instance, I will visit a restaurant that I consider safe, get “glutened” and cross that restaurant off the list.  I am down to four restaurants that I can eat at. 

Since I am too sick to cook for myself most of the time, I graze on various packaged food - some good, some not so good.  I eat protein bars when traveling, although I do not travel often anymore.  It’s a lot of work to make sure all the food I eat is gluten-free and free of all of my other food allergies. 

sara met with sen. barbara boxer while advocating for migraine research

I’ve been dealing with allergies for all of my 45 years.  My “natural MD” (my voodoo doctor, as I jokingly call him) gives me small doses of LDA shots, which are helping a bit.  He also believes that I have a lyme-like disease called Bartonella, which he is treating me for.  I am on so many vitamins that I won’t even go there. I take Wellbutrin for depression, nothing for anxiety, and since I am now 45, the infertility has played itself out. 

Deep breath. That’s a lot of illness and treatment.

Even with all of this, my scariest problem today is the government’s war on pain patients who take opioids.  After the DEA stormed one of my doctors’ offices in bulletproof vests with guns drawn (to request appointments with two doctors -- couldn't that have been done by phone?), all of my doctors, but one, have withdrawn ALL narcotic treatments for ALL migraineurs. 

It baffles me why this policy exists.  This is discrimination plain and simple.  I want to sue, but no lawyer will take the case.  I know that many addicts lie and tell doctors that they are migraine patients, since migraine is an invisible disease that cannot be diagnosed with blood tests, MRI’s, or anything else, but these are doctors whom I have a 10 year relationship with! 

They are either petrified of the DEA or always thought that I was an addict, and didn’t care enough to deal with that.  Either way, what the heck I am supposed to do?  Without my weekly pain shots, I can no longer work full-time.  If I still didn’t have one doctor on my side, I’m pretty sure I would have committed suicide. 

My private disability was denied due to some technicality.  SSI pays less than I can make part-time and SSI doesn’t allow the disabled to work part-time anyway (don’t get me started on that). 

I am very, very fortunate to work in California, where I have been on part-time disability.  But it will only last for one year, so I will be on my own again soon anyway.  I don’t know about other people, but there is no way I can survive in California on half-pay.  I was barely making ends meet while working full-time.  Now that I am single again, I cannot rely on someone else to support me. It is terrifying!!!

I have met and will soon meet again with members of Congress to discuss more funding for migraine and headache research through an organization called Headache on the Hill. That organization does not support opioid treatment for migraine at this time, but I still want to address the opioid issue with other pain patients.  Who will join me?
 

Sara Batchelder lives in California, where she received an MBA with honors from the University of San Francisco and works as a controller for small architecture firm. Sara volunteers at her local credit union and tries to advocate for migraineurs as much as she can.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

8 Tips for Patients Newly Diagnosed with Ehlers-Danlos

By Ellen Lenox Smith, Columnist

Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with deformed connective tissue, the “glue” that holds the body together. At this time, there is still no cure to correct this problem, so living life with this condition means a accepting a certain level of chronic pain.

There are simple things to learn to live your life with EDS more safely. For instance,  learning how to properly strengthen the muscles that are on overload doing their job, along with that of the useless ligament and tendons. Or understanding how certain twists and turns bring on other slippage of the body.

Living with Ehlers-Danlos Syndrome means, at times, a long, lonely and difficult journey burdened with a constant search for direction on how to try to create something resembling   a normal life. I am 65, but it wasn’t until eleven years ago that I was finally given the correct diagnoses of something I was actually born with!

There have been times that I felt guilty for almost wishing I had been given a diagnosis of cancer -- for then the doors of hope, direction, plans and medical interest would have been with me at all times. Instead, as many other EDS patients have learned, we cope with the unknown, judgment from friends and even family, isolation, confusion, and the lack of consistent knowledgeable  help.

All I ever wanted, when first diagnosed, was for someone to reach a hand out and guide me. That hand has never been there. So, instead, I have spent the past eleven years attempting  to help prevent others from having to replicate my experience. I simply wish to assist other EDS patients avoid some of the uncertainty and stress that I was forced to experience.

The task is often overwhelming and difficult, but you have no choice. This is the life you have been given.

With that in mind, I would like to make suggestions to the newly diagnosed, in hopes that your journey will begin safely by addressing these issues:

1) Confirm with a knowledgeable geneticist that you have EDS. If you get the feeling they do not understand or believe you have EDS, then go to another geneticist. I met with three before I was convinced and accepted the diagnosis.

2) Mourn your losses. It’s okay and necessary to allow yourself to mourn the loss of your past life -- it will never again be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on.

3) Address pain control. Accept that you cannot take this journey on your own. You need to address your pain to have a chance of living as normal a life as you can. You might be like many of us and have trouble metabolizing certain medications. In that case, DNA drug sensitivity testing would help you to identify a compatible pain medication.

Many respond beautifully to medical marijuana instead of opiates. It can be taken in a simple dose of oil at night, that not only allows you to sleep but also carries pain relief to the body even into the next day.

4) Be evaluated by a neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck . This is a very important. Every patient should have this evaluation and have a neurologist monitor you. Many of us need to have the tethered cord released to end issues with the bladder, kidneys, pressure in the chest, and issues with legs. If you test positive, get it done and then you will feel so much better and be able to progress onto physical therapy more successfully.

Instability of the neck will cause havoc with your body if strengthening does not succeed. Chiari I Malformation must also be addressed. Any or all of these may be an issue for you in time, but please know that correcting them when the time is right will make the difference in moving forward again.

5) Find a good manual sacral physical therapist. This is your chance to take better control of your life by learning, through the guidance of a manual therapist. “Living Life to the Fullest With Ehlers-Danlos Syndrome” is a new book written by my therapist, Kevin Muldowney. He learned by taking on many EDS patients at his clinic, that there are safe ways to strengthen our muscles. I have been through the protocols and have found they work for me.

You’ll need to stay loyal to the daily workouts. But believe me, I love being proactive and so appreciate the good that is now showing -- like having the sacrum hold!

6) Develop a network of doctors that understand EDS or are willing get educated.  Feel free to visit my website to see if a doctor is listed near you. Also feel free to contact us if you have a good doctor that we can add to the list.

Remember, we are complicated and never get all better. That is a lot for a doctor to want to take on. Be patient and look for compatible personalities and let them learn through you.

7) Be sure to have a cardiologist.  You should have an echocardiogram (echo test) done yearly. The test uses sound waves to produce images of the heart and allows the cardiologist to see if your heart is beating and pumping blood correctly.

8) Determine drug and food allergies. I wish years ago I had a clue that there was testing out there to see why I had bad reactions to some medications and foods since birth. A simple DNA drug sensitivity test can help you find a safe drug to be able to put into your body. The same goes for food sensitivity testing. You will learn what foods are causing issues or what drugs are not metabolizing.

Both these issues are VERY important to address. If you keep taking medication or eating foods that are not compatible to your body, then you are adding to the inflammation in your system. More inflammation means more pain due to the increase of subluxations.

It's also important to remember that you are not alone. Find a local EDS support group and learn as much as you can to live more safely with this condition.

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.

Should Johns Hopkins be Policing the Nanny State?

By Terri Lewis, Guest Columnist

I was copied a response to the recently issued document, "The Prescription Opioid Epidemic: An Evidence-Based Approach" published by Johns Hopkins Bloomberg School of Public Health. 

The 46-page document is full of pronouncements about what the proper course of action should be to rein in the abuse of opioids by people who experience unrelenting chronic pain on a daily basis.  The document is replete with terms like addict, addiction, surveillance, monitoring,  intervention, adherence, and conformance distributed across seven topical areas, all claiming to address the current evidence for the need to ramp up the nanny state:

#1: Prescribing Guidelines
#2: Prescription Drug Monitoring Programs
#3: Pharmacy Benefit Managers and Pharmacies
#4: Engineering Strategies
#5: Overdose Education and Naloxone Distribution
#6: Addiction Treatment
#7: Community-Based Prevention

Nowhere, does this document even remotely address the fact that the onset of chronic pain is often an iatrogenic event that occurs as the result of medical harm or insufficiently delivered medical care. 

Nowhere, does this document address the financial and practical impact of these pronouncements on the ability of persons who have lost everything to illness to conform to protocols that turn healthcare delivery into a policing activity.

Everywhere, these protocols engender the further victimization, the institutionalization of marginalization, and stigmatization of the chronically ill as unworthy, incapable of protecting themselves, and potentially harmful to themselves and others because of the characteristics of their illness imposed disabilities. 

Every dollar that is proposed for expenditure in this document should be going to research designed to prevent and minimize the impact of chronic pain -- not punish it.  But this document, from a major public health training institution, completely fails to address the prevention and reduction of chronic pain as a public health issue of significant importance, and is focused instead on counting adherence, conformance and compliance activities that will (a) not lead to improved personal outcomes for consumers who live with chronic pain and (b) rob consumers of precious resources with which to live. 

These pronouncements reflect an ignorance of astounding proportion in understanding who persons with chronic pain actually are and the conditions under which they are forced to live.  Who does this document serve?  Who are we trying to protect?  

I am outraged.

And then this.  Into my email came a response to this smug, sanctimonious document from a woman in California who suffers from interstitial cystitis -- acquired through medications she received after treatment for shoulder and spinal injuries at the hands of her medical provider.  It's too good not to share:

To the misguided folk at Johns Hopkins Bloomberg School of Public Health:

This is my contribution to your little Town Hall hand-wringing session.

So, I guess you are jumping on the anti-opiate frenzy bandwagon.  Just another organization that feels compelled to point at anyone who takes opiates, and call us all "addicts" and not even considering those of us who suffer from severe CHRONIC PAIN (the kind That Never Ends) due to circumstances totally beyond our control.  My pain is not caused by any flaw in my character.  People like myself who see our doctors religiously and always take our medication responsibly.  What, are you being financially rewarded by punishing us?  What did we ever do to you?  Or are you just trying to Thin the Herd?  I guess Chronic Pain Patients' Lives DON'T Matter.

I'm talking to you.  I'm one of those people, who suffer from illnesses and or injuries that have already stolen our quality of life away from us, and pain that causes as much, and sometimes more, pain than cancer.  People who suffer from pain that only opiate prescription medication can dull.  And people like you, whom I will never meet, want to take that away from me.  A patient who has NEVER EVER ABUSED HER MEDICATION.  Not ONCE.  I am a 60 year old lady who worked her entire adult life and never once did anything to invite nor cause the condition that causes me terrible TERRIBLE pain.

My pain saga started with chronic tears to both my rotator cuffs, and a herniated cervical spine.  All from a desk job involving typing and mousing and staring at a computer monitor for years and years and years.  This activity has destroyed the tendons in both my shoulders and neck and herniated my spine.  And while that pain was bad enough, I figured it would eventually end.  I never envisioned that the pain would remain after my shoulders were carved up and stitched back together.  It was during my recovery from this surgery, that I began to experience the horrors of an incurable illness known as Interstitial Cystitis.

On bad days it feels like someone is taking a blowtorch to my genitalia.   In fact, Interstitial Cystitis is considered the Third Worst Pain in all of medicine.  Imagine, if you will, the sensation of hot lava being blasted through your bladder, vagina, colon and pelvic parts.  All the time.  Having the urge to urinate every 15 minutes -- or more often than that -- on bad days.  I am basically chained to a toilet.  And because the pain is ALWAYS much worse at night, I suffer from severe insomnia.  It is impossible to fall asleep or stay asleep with pain this bad.  My urologist opined that I would be better off if I suffered from Bladder Cancer, because there is at least a chance of recovery from that illness.

The only FDA authorized treatment for this condition is Elmiron, and it doesn't work on every patient.  In fact, it only works on maybe 25% of patients who suffer from this horrible condition.  It did nothing to help me with any of my symptoms but cause my hair to fall out and raise my liver enzymes to a dangerous level.  That's all our modern medical machine could do for me medically.  They sure as hell cannot cure this illness yet.  The only thing that medicine CAN offer is pain relief.  The only chance in hell I have of ever having a life without this horrible, searing, burning, aching, stabbing pain is if The Good Lord decides to send me into remission.  All a doctor can really do for me to help me is provide me with pain relief.

The only medication I take that takes the edge off of this pain is Norco.  I tried the Fentanyl patch, but it caused me to develop an intestinal blockage.  For obvious reasons, I had to discontinue that medication.  And while I intensely dislike taking ANY medication, I dislike the awful pain worse.  I have NEVER abused my medication.  I never take more than I am prescribed.  I do everything and anything that is asked of me, whether it involves blood tests and/or pissing into a cup.

So why am I going to be punished?  Answer me that question.  I just found out that my pain medication is going to be cut drastically OR terminated at my next visit to my pain doctor, which is this Friday.  It is not being taken away because I have ever abused my medication, or lied, or deceived, or stolen, or sold it.  I can only assume that my pain doctor is just too afraid of the DEA and the paperwork headache.  It will be easier for him to just dump me as a patient, and limit his practice to injections which make him more money anyway.  Well, guess what?  Injections have never done a thing to help my pain, and I have had quite a few.  I have had TENS units, Physical Therapy, Massage and Ultrasound.  I have tried just about everything that exists to reduce the horrendous pain I experience 24/7.  The only medicine with the fewest side effects that helps reduce pain is Norco.

We are a vulnerable part of the population who are being deprived of compassionate and adequate care to help us live our lives with a semblance of normalcy.  We are being punished for the irresponsible actions of people who would be addicted whether or not it was via opioids or anything else.  All of this noise is just that:  NOISE.  Mark my words:  all this brouhaha will not make one iota of difference in the epidemic you speak of.  People who are addicts will always find a way to get high.  That is what addicts do.  However, what your actions WILL do is cause an increase in suicides of people suffering from terrible TERRIBLE pain, who can no longer get medication that enables them to have something resembling a quality of life, and be semi-productive citizens. 

Yes.  The pain of illnesses like mine can and does drive good people to commit suicide if they can't get pain relief.  Or maybe these same people turn to other drugs they would never EVER consider if they received the compassionate care we are all entitled to.  That is what you will see start to happen.  I am sure that some of this surge in heroin use is by people who are in such terrible pain that they are desperate, and their doctors will not help them because of fear of the DEA and organizations like yours.  And then what will happen?  More "meetings" and "studies" and "head-scratching" about the spike in suicides?  How can you be so obtuse?

No one is speaking up about us. No one is helping us.  Chronic pain patients are being marginalized and treated like addicts, when we are not.  We can barely function because pain robs us of the ability to function, and we are already exhausted from this daily fight.  I guess we are easy targets.  Few of us possess the strength to march on numbers in Washington or anywhere else.  I know I couldn't.  I am so ill that I can barely leave my house.

I know what happens to me when I don't take my pain medication:  I experience much more severe pain.  I don't drool, or hallucinate, or stumble, or vomit, or shiver, or do anything but just cry buckets and buckets of tears, and huddle in a corner of my bed in the fetal position with bags of ice stuffed into my underwear to try and numb the horrible, searing pain of this illness.  And I guarantee that if any of you people making these horribly unjust decisions suffered from the condition I suffer from, that you would be begging for drugs to take the pain away.  I'm willing to stake what few dollars I still possess on that fact, because guess what?  This illness has also rendered me destitute and incapable of working at my job.  I can't even sit in a chair very long because of the pain.

So, in summary, what you are doing is KILLING US.  You, and 60 Minutes, and the CDC and the DEA and every other soulless agency that is carping about this.  If I weren't so sick from this horrible illness, and what it has done to my life, I would be laughing because of the incredible stupidity being displayed by a bunch of suits I will never meet.  Dumping every single person who takes opiates into a category you call "addiction" and shoving us off in the same leaky boat.  Yes.  You are killing us.

Name withheld to protect her privacy

For the record, this person also found out last week that her beloved husband of 20 years is in the throes of stage 4 kidney failure as a result of 5 years of treatment from a physician for arthritis -- resulting in an unidentified drug-drug interaction that has, unbeknownst to the physician, destroyed his patient's kidneys because he failed to monitor his patient or pay attention to known drug-drug interactions.

So who needs to be monitoring and surveilling here?  Who?  Does the public really need protection from persons with chronic pain who can barely leave their homes?  Or do persons in pain need protection from the public purveyors of unsound, impractical, and misguided policies? 

God spare us from the nanny state.

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

This column was reprinted with permission from the author.

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.