The Magic Combination for Pain Relief

Barby Ingle, Columnist

There is no cure for most chronic pain disease, but progress is being made in finding the underlying process that causes it. If we can understand that process, then options to cure chronic pain may come about more rapidly.

The earlier we catch and properly treat what is causing the pain, the better the chances for controlling the pain or putting it into remission. If the symptoms progress and are incorrectly treated or not treated at all, then issues become more complex and invasive.

It is important to learn about the types of treatments available to you, either through insurance coverage or cash pay. Treatment options include physical therapy, medication, orthopedic surgery, invasive surgery, non-invasive procedures, naprapathy, stem cell therapy, infusion therapy, and literally hundreds of other options.

Patients should look for ways to control and minimize their pain and discomfort to the greatest extent possible. Coping skills will develop out of necessity. However, sometimes we need to speak to someone outside of our circle for a different view. Psychological counseling may become necessary. It is okay to ask for help when needed.  

Goal creation and treatment plans should also include drug management, family/social adjustment, improvement of the patient's quality of life and psychosocial functioning, and increasing mobilization or range of motion through physical therapy.  

Many chronic pain patients consider these milestones for a successful treatment plan:

• Ability to achieve a full night’s sleep repeatedly
• Ability to perform physical therapy with improved muscle strength
• Decreased need for opioids
• Diminished depression
• Diminished swelling
• Improved thinking
• Increased stamina
• Lowered pain levels

It is important to treat the underlying symptoms, even if it means turning to surgical intervention in some cases. Depending on how well you respond to the various options, a progression of treatments may be used by your providers and yourself as an engaged and empowered patient. Setting goals and a timetable that is reasonable can be done with your providers.  But remember, you as the patient need to play an important and vocal role in creating the plan.

Treating your chronic pain begins with patient awareness. On my good days, I try a few new activities and increase the amount of physical activity, as I am able. By doing this, I have seen an increase in my body functioning, range of motion, muscle strength, improved balance and posture. I’ve also found that if an activity just takes the edge off my pain, it helps restore cognitive and physical function.

When my pain increases, I find myself slouching more. Becoming aware of yourself and your environment increases your chances of successful treatment and a better quality of life. Get involved in movement training. This can include walking for two minutes at a time or, if you’re ambitious, a mile.

Do what you can do at your level. It will be different for all of us. Moving will improve your health, the function of your body, and also helps with constipation and gastrointestinal issues. Movement increases your blood circulation, which helps with atrophy and can decrease hypersensitivity.

When most people think of physical therapy they think of machines, weights and treadmills. However, I’ve learned that there are many types of physical therapies that are more in line with what we can handle. They include biofeedback, hot compresses, elevation, massage, range of motion exercises, and hydrotherapy.

There is some thought that physical therapy is painful and does not help. But if you find the right combination of medication, counseling and physical therapy, you’ll have a better chance for pain relief and staying on track with your treatment plan. Again, it comes back to surrounding yourself with a team of doctors, caretakers, friends and family supporters that have the willingness and education to support you.

The good news is that no matter how long you have had chronic pain, you can be helped in some way -- if you stay active, avoid unnecessary surgical procedures, can change medication when appropriate, and improve your nutrition and posture habits.

There are hundreds of treatments you can use to help lower and control your pain. What the magic combination is will be different for each of us and we must find what works for us individually.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International 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 Surprise Gift Chronic Pain Gave to Me

By Jean Price, Guest Columnist

When illness or injury causes long term consequences and persistent pain, we often grieve for what we used to be and do before the pain. That's natural, because we've lost that particular "design" of ourselves that we knew and liked, even though we usually took it for granted.

Chronic pain sufferers don’t take anything for granted anymore, not with pain invading and diminishing our functioning, ability to work, care for ourselves, and be an active part of our families and friendships.  We want what we most likely won't have again. 

In life, natural aging is a lot like this too, only there is more time to adjust and it feels more like a natural process, not like something that has been ripped out of our hands.

At first, we spend a lot of time waiting to get well and wanting to be healed. To get better, get back on our feet, and rise above where we are. To be whole again. 

In the past, we usually recovered from ailments and injuries. But not when we cross that bridge into daily and life-limiting pain. In a sense, we aren't really "sick." We've just reached a new normal. There's no cure or any way to change us back.

I remember a long ago evening when my daughter was too slow to get up and help me set the table and get dinner ready. So I told her rather abruptly I didn't feel like doing it and really needed her help. She replied that she had a headache and didn't feel like it either, adding something that stopped me in my tracks.

"Mom, I'm sick tonight and you're not!" she said.

JEAN PRICE

It wasn't until later that night that I realized what she had meant with those few words. I had been to the doctor the day before and had a bruise the size of a dinner plate on my hip from an injection. I was starting into the second year of severe pain after a failed back surgery.  A surgery with devastating complications that resulted in a second surgery two weeks later; ending with multiple doctors’ appointments and a dozen courses of steroid treatments over the next year. It made me even sicker and still unable to lift my leg.

I really felt sick, yet this had gone on so long that my daughter didn’t see me as sick anymore. I was just being me, and my pain and disability was normal. For her, the old mom was already history.  For me, I truly expected that if I just worked harder, found the right doctor, and suffered through the right treatment, I'd get back to my old idea of normal.

And of course I haven't. Instead, I've been through many new normals, all of them feeling like a downward spiral.

Until I found there is actually a big upside to all of this:  I have become a better person.

It's taken a lot of work. Grief is a verb and requires work! And it has taken good support from others and much learning. Yet the current "new me" has some really special attributes.  She is more patient, more compassionate, more at peace with change, more generous to herself and others, has a much stronger and tested faith, and has more joy in the little things of life.

She is less angry, less judgmental, less serious, less hyper-responsible, more loving, less co-dependent, more forgiving, more trusting of herself, more self-affirming, gives better support to others, and basically is way more whole. Less functional, certainly, but more whole.

Odd, but it's true. When our bodies fail us, we can choose to keep growing our minds and spirits, and we can find important things in life that are still easy, even when we can't do much. We find that love and joy come in little, surprising packages just waiting to be seen. And we find that there is more to life than what we do. We aren't human doings, but rather human beings.

Even with pain, we can chose to be kind, loving, at peace, and better than we were. We are not our pain. We are worthy and wonderful creations, and still enhance this world.

Yes, I do miss what I used to be able to do, but I really don't miss the person I was. Not at all! Because I like the person I am now so much better. Probably because I have been tempered by all that I’ve been through, and enriched by all the people and blessings in my life.

Life is full of changes and each change brings loss; even the chosen changes or the more positive changes still have losses. Yet we don't have to lose ourselves in the process of pain.  We can become more and better.

It's a choice. One of the few things we do have control of. How we feel emotionally, how we react, and how we think of ourselves and the world.

Pain doesn't stop us from being ourselves, only we can do that to ourselves. And if we do, then we've really lost, because the special person we each are deserves to be part of this world, and can still contribute and find joy, despite pain.  

I think I'm living, breathing proof of this.  And I'm glad I don't really have the choice of giving up pain or giving up who I have become. Because as odd as it may sound, that would be a really tough choice.  

Jean Price and her family live in North Carolina. Her chronic back pain began with a herniated disk and escalated after major complications from surgery. Jean also suffers from rheumatoid arthritis and osteoarthritis, and is a breast cancer survivor.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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

Living With Chronic Pain in an Opioid Hostile World

By Robert Hale, Guest Columnist

I am 50 years old and suffer from late-stage Ankylosing Spondylitis.  My entire spine has fused, along with my entire neck.  I cannot look left or right, nor up and down.  My shoulders are in the process of fusing.

I have a broken clavicle – broken in two places – that refuses to heal. I also suffer from peripheral neuropathy in my legs, which makes walking feel like treading on broken glass. 

My disease is degenerative, progressive and incurable. The only relief I can get is with opioids.  Taking long acting morphine and hydromorphone as a breakthrough medication, has literally saved my life.  I do not get any joy or “high” from these medications -- only relief from pain -- which is as close to a miracle as could be hoped for, for someone in my situation.

ROBert HALE

For the last 10 years, I have been seeing doctors, both in the field of palliative care and pain management. Early on, we managed to find a dose of opoid medication that was appropriate for me, and I began my life anew.

No longer bed-bound and useless, but able to function again, and become a productive member of my family and society.  I opened up a guitar shop and began working again – albeit at a gentle pace – and I really felt that my life was worth living again. 

I wasn’t happy to be taking pills every day to achieve this feeling of well-being, but it beat the alternative.  I asked my doctor, a wonderful, empathetic and kind doctor, how long I would have to be on these medications.  He told me, “Probably for the rest of your life”. 

Sadly, my awesome doctor left the palliative care clinic I was attending, and I was forced to move to a pain clinic in Overland Park, Kansas.  It is run by a highly respected pain management doctor, who took one look at me, asked me to walk down the hall and back, and knew immediately that I was a good candidate for the medications I had been taking.

For several years more, everything was fine – the doctors and nurses were great. Of course I had to sign a patient contract, agreeing to take my medications as prescribed (which I always do), not to take anything else, including illegal drugs, and not to share my medications with anyone.  I also was subjected to frequent urinalysis to prove that I was complying with my treatment plan. 

I never strayed from that plan, nor did I ever have a drug test showing anything but what it should.  I was, in the words of one of my nurse practitioners, the “perfect patient.”  I took the meds I was prescribed, exactly as they were meant to be used.

I am not an addictive personality, so I never was tempted to use my medications to try to get high, nor do I think I am addicted to my pain medications. I do have a tolerance to them, which is unavoidable in my situation.  I have been on large doses of morphine and hydromorphone for over 10 years. I’ve learned to respect these powerful drugs, and to treat them with great care.

The "New Cruelty"

Unfortunately, ever since the CDC opioid prescribing guidelines were released, stating that the maximum dose for any one person should be no more than 90 mg of morphine equivalent opioids per day, my pain care has changed for the worst.

The guidelines clearly state that they are meant for general practitioners, not doctors who specialize in pain management. However every pain doctor I have contacted see the guidelines as rules, and they have begun a relentless campaign of reduced opioid prescribing.  All of the pain clinics in my area have followed suit.  My pain doctor even went so far as to sell his practice to one of his partners.  I suspect this is so he couldn’t be blamed for the “new cruelty,” as I like to put it. 

It is very disturbing to talk to him these days – it’s like he is a completely different person. Gone is the compassion, the empathetic “do no harm” doctor that I had gotten to know over the last several years.  He now claims that the reason he no longer prescribes the meds we need is because of the danger of overdose.

If a doctor like him can be swayed by this propaganda, there are at least a thousand more around the country acting the same way. 

Some chronic pain patients have it worse than me, although it is difficult for me to imagine that, as my increase in pain levels has literally left me all but crippled.  I have told the pain clinic this, but they just look at me and say, “Oh, I’m sorry.  You’ll get through this somehow.”  But they know better. 

I have already had my medications reduced drastically, to about a tenth of the dose I have been safely taking for years, and I am absolutely miserable.  My days are once again filled with unrelenting pain, and on top of that, I am suffering from opioid withdrawal. I constantly feel like I have the flu, and can only sleep 2 to 4 hours every night.  I am back to being bed-bound most of the time, and it is physical torture to do the simplest things like dressing and showering. 

I cannot help around the house, to help my father who is 77-years old.  He just lost his wife, and my mother, to Alzheimer’s disease, and he needs me.  And I need him.  I can no longer play with my dog, Aya.  This breaks my heart – she deserves so much better.  

The worst part is, I’ll be back in the pain clinic next month, to have my dosage cut down again, because I have not agreed to have an intrathecal morphine pump installed in my body – an option that is not available to me, due to the fusion of my spine.  Other doctors have warned me not to have this procedure done, so it’s back to the clinic to get my meds cut down again.  Pretty soon, I’m going to be at a level of pain that the tiny amount of morphine they will allow won’t even touch.  What am I to do?

Here is a link to an excellent article on PNN, headlined “Pain Care Shouldn’t Be Political Theater” by Dr. Richard Oberg, a man whose disease is in the same family as mine.  

“The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice,” Oberg wrote.

Something is going to have to change, and fast, or a large percentage of the chronic pain patients in this country are going to die by their own hands, or be forced to find their medicines through illegal means, or switch to drugs like heroin and become statistics themselves.  I am just one voice, but I speak for thousands. There are so many of us who are unable to even summon the energy needed to type a column such as this. 

I just read an article stating that since the CDC guidelines were put in place, the rate of suicides among pain patients may be rising. I’m not surprised at all.  I think about it all the time now. The only thing keeping me here is the fact that I have people who depend on me, and the fact that I think suicide is a sin. I don’t want to wind up having to learn all these life lessons again. 

Please, for the love of God, listen to my words: Most of us are too weak and too sick to even make a plea, so I’m doing this on behalf of all those who are too weak to even type a letter to their congressmen or the people who can make a difference.  Stop treating chronic pain patients like drug addicts! 

We don’t even like the damned pills, but without them, we are in a living hell – an evil downhill spiral that can only end in madness, addiction to illegal drugs, or death.

Robert Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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

A Pained Life: Too Many Pain Pills

By Carol Levy, Columnist

I have a confession to make. I watch a number of the court TV shows. Sometimes they can actually teach me something, sometimes they are laughable. Sometimes they are cringe worthy. Sometimes they are simply infuriating.

The judge on one show uses his program as a platform to vilify “pain pills.”

A plaintiff or defendant is invited to tell their story. More often than not, it is a hard luck story. Within a few minutes, many of them blame much of their life struggles on substance abuse problems. Sometimes it is a happier story. They have kicked their drug addiction.

Either way, the judge is curious. “How did you get started using these drugs?” he asks.

The most common answer is that they had a bad back, toothache, neck pain, etc.

“I started to take pain medication for it, and next thing I knew I was addicted and my life spiraled out of control,” they often say.

The judge nods sagaciously and pronounces his sentence on opioids: “Oh yes. It is easy to get addicted to them.”

Never mentioned, and I do understand the issue of time and editing, is the benefit of these medications for those in legitimate pain. Or that those with chronic pain rarely become addicted to them. Instead, the false narrative continues to stand: Pain pills are given for specious reasons and quickly lead to addiction.

Also omitted is the question: “Where do these pills come from?”

The Centers for Disease Control and Prevention states: “Since 1999, the amount of prescription opioids sold in the U.S. nearly quadrupled, yet there has not been an overall change in the amount of pain that Americans report.“

The CDC reported last week that 17,536 Americans died in 2015 from overdoses of prescription pain medication, a 4 percent increase from the year before.

Patients don't write these prescriptions, yet the CDC’s opioid guidelines and other government regulations seem intended to punish them. As a result, we need to go to the doctor more often. That means more money, more trips, and more waiting. As I write that, I can see folks without pain saying, “So what?”

The “what” is that having to make these extra trips usually translates into more pain, which may necessitate taking even more pain meds. The guidelines meant to “help” may actually increase the need for opioids.

But the CDC itself has let on where the problem lies.

It is not with the patient. It is with the doctors and prescribers who give out these prescriptions like candy. A dentist giving a 30-day supply for a tooth extraction, or a primary care doctor prescribing narcotics to a patient with lower back pain or other issues that could well respond to physical therapy, aspirin, and changing their behavior.  They are the culprits.

The source of the problem is clear. Too many prescriptions are being written by too many doctors.

The CDC guidelines let them off the hook. And puts the patient on it.

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.

7 Tips for Peace and Calm in the Busy Holiday Season

By Ellen Lenox Smith, Columnist

When the holidays are upon us, we tend to go into overload. Our minds are filled with all the things that have to get done. Maybe it’s presents to buy or make, meals to plan, company to prepare for, or packing for travel away from home.

We get so busy wrapping, cooking, cleaning and planning that, before you know it, your mind is spinning. If we aren’t careful, we get so wound up and tired that we can easily slip away from enjoying and experiencing the meaning these times with family and friends should have for us.

For those of us living with chronic pain and illness, it can also unintentionally cause a setback with our health. Life is difficult enough already without adding holiday stress to it.

Take the time to protect your health and learn to make it a priority among all the other things you need to take care of.

Here are seven tips to put peace and calm back into your life, while still enjoying the holiday season:

1)  Do your best to stick to your normal routine. Be honest with yourself and your body. If you are too tired or have too much pain, do what is best for you. There is nothing wrong with “not feeling up to it.” Give yourself permission to cut yourself that break.

2)  If you have chronic pain or illness, share with people that really want to know the truth. Many friends and family really don’t understand what you are coping with, possibly due to distance. Maybe you have had little contact, they don’t know how to approach what is happening with your life, or maybe they have chosen to ignore and not support you. 

It is a painful thing to experience when family and friends slip away. But in time, you will find others living with pain and illness that are more understanding and compassionate. Try to find that network, and learn how to live with and someday forgive those that don’t know how to be around the “new you.”  It will someday be their regret for their lack of compassion. Remember, there are many people out there that could use your friendship. Consider reaching out to others in need.

3)  Attempt to simplify your life to prevent the exhaustion many of us experience. One way our family has accomplished this is to no longer buy presents for each family member. A few years ago, we began selecting the name of one person and buying a present for them and no one else, except the children in the family. This had to be the most relaxing decision added to the holiday! The pressure is gone, and we now get to gather and just enjoy being together. 

This year, we have decided to take this idea one step further. We're donating the money that we would have spent on that one person to some person or cause that we want to help support.  We will share, when we all gather together, what we chose to do with our donation. We are all looking forward to hearing each others' choices. 

4)  Being with family and friends can be both wonderful and stressful. Try to make sure the conversations stay on a positive track.  When the topic appears to be getting into testy waters, try to sway the conversation away from negative topics. 

We have all had to calm down and regroup from the stress of the election, so try to steer away from anymore negative talk, blame and judgement. The Today Show even suggested that if you are the host, to set the rules and explain that this is a calm gathering. Consider designating a separate room if someone needs to talk politics. 

We have all experienced finding out that people we love and respect did not vote as we did. It can be a trial to hold onto these relationships, when there are dramatic differences of opinion we didn’t necessarily expect to find out about. We need to accept those differences and still appreciate the good in each other.

5)  If you don’t have a lot of space for overnight company, then be honest and provide them with suggestions nearby where they can stay. You want to enjoy your company and not end up resenting their presence. They could still join you for meals and activities, but provide you some much needed rest and quiet when they step away.

Share the responsibilities. There is no reason why each person can’t help bring part of the meal. Don’t take on so much that by the time your company arrives, you are really too exhausted to enjoy them. Maybe you could consider making some dishes in advance and thaw them out before they arrive. That can be your secret!

6)  Try to create calm in your home. Consider playing soft music to fill the air. That can be very relaxing, along with scented candles. Consider asking guests to put their electronic devices away or even collect them, so you can focus on each other and not those screens. There is plenty of time to catch up on messages and postings later. Let this be the time to truly be together.

7)  Make a list of things that come into your mind, in advance of the gathering, of things that need to be done that can help make things go more smoothly. Many of us living with pain get “brain fog” and can easily forget. I find this simple task takes the stress off me, knowing that I will read that list and remember all the things I need to keep me safe, medicated and protected.

Being with family and friends can leave us with wonderful memories. But exhaustion, caused by pushing and pushing yourself, ends up deleting the fun. Those of us living with chronic pain and illness can’t afford to set our health back by pretending all is just fine.

Rest, make simple plans, share the responsibility, and learn how to relax and enjoy. You won’t regret it.

 Happy holidays!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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

Abuse Deterrent Pain Medications Deserve Support

Barby Ingle, Columnist

It's no secret that the abuse of pain medication and illegal opioids has led to a growing public health problem across the country. The numbers are alarming and they are growing.

Also alarming is the number of people who suffer with chronic pain. According to the Institute of Medicine, one in three Americans – about 100 million people – have been affected with a condition that causes pain.

Since 2002, I have been battling Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. The worst symptom for me is the constant burning fire pain. It feels like someone put lighter fluid in me, lit it, and I can’t put the fire out. I know firsthand how difficult the journey for pain relief can be, particularly the sidelong glances and disbelief from medical professionals.

The challenges are complex and multi-layered, and I always applaud solutions that help to balance pain management with the cost that prescription drug abuse has on society. Promising technological advancements in recent years are proving to be an important part of the battle.

Among these are so-called "abuse deterrent formulas" (ADFs) of commonly prescribed opioid pain medications that are being developed to prevent some of the deadliest forms of opioid abuse. The formulas generally make it harder to crush or liquefy pills for snorting or injecting.

These tamper deterring formulas of pain medications provide patients with the same pain relief as conventional opioids, but incorporate breakthrough technology designed to protect against tampering and abuse.

Since Purdue Pharma introduced a reformulated abuse deterrent version of OxyContin (oxycodone ER) in 2010, the “nonmedical” or recreational use of OxyContin has fallen dramatically.  

source: radars system

Several states are considering legislation in 2017 to improve patient access to these new abuse deterrent formulas of painkillers. As bills are introduced and updated, the International Pain Foundation and other pain organizations track them on our websites, put out action alerts and ask for the pain patient community to get involved by sharing their stories.

ADFs have received widespread support as part of a comprehensive effort to combat prescription drug abuse and promote appropriate pain management, including from the Office of National Drug Control Policy, the Community Anti-Drug Coalitions of America, members of Congress, and the National Association of Attorneys General — including California Attorney General Kamala Harris, who was recently elected to the U.S. Senate.

Abuse of pain medications has led to a growing public health problem nationwide. Each year approximately 4.5 million Americans use prescription pain medications for non-medical purposes, contributing to more than 14,000 overdose deaths annually.

To date, the Food and Drug Administration has approved abuse-deterrent labeling for seven drugs (OxyContin, Targiniq, Embeda, Hysingla, Morphabond, Xtampaza, and Troxyca), with two other abuse-deterrent opioids under review.

This technology is only part of the solution, but it is a solution nonetheless. Patients that have struggled with addiction or substance abuse in the past, those who live with others who are current or recovering addicts, and those who live with teens or young adults who may seek opioids for recreational use can all benefit from ADFs.

For the sake of those with legitimate, life-altering pain and for the safety of those prone to abuse these medications, I urge our lawmakers to stand up for policies that preserve and improve patient access to ADF technology.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International 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.

Don’t Let Them Stop the Stem Cell Movement

By A. Rahman Ford, Columnist

Somewhat lost in Donald Trump’s presidential victory was the resounding statement made by voters that medical marijuana is here to stay.  Those people-driven victories were monumental for millions suffering from painful and debilitating illnesses -- people who could achieve a life-saving benefit from marijuana or its derivatives. 

It’s only a matter of time before the DEA changes its ridiculous classification of marijuana as a Schedule I controlled substance. 

I believe that one of the next challenges in the wellness movement is the FDA’s control over your own stem cells, or as I call them, personal stem cells.  Quite frankly, the DEA’s position on marijuana is about as misplaced as the FDA’s position on you using the cells God gave you to heal yourself. 

Some scientists have been pushing quite a bit of manufactured controversy around the issue.  Those same scientists tried the same thing with marijuana.  But now the people know the truth.

Personal stem cells are simple to understand.  I’m not talking about embryos, umbilical cords or artificial cells grown by some scientist in a lab.  When I talk about personal stem cells, I’m talking about master cells cultivated from your own bone marrow or fat. 

Yes, you have stem cells in your own body that can heal you.  

In marijuana terms, it’s like you’re your own stem cell “grow house.”  Your own cells can be used to heal any number of physical ailments, including orthopedic issues.  Orthopedists have been using the procedure for years, and there is also evidence that stem cells can be used to heal autoimmune diseases. 

Like marijuana, we really have no idea how many ailments can be improved or even cured with personal stem cells.

If you’re wondering whether personal stem cells can actually heal, look no further than professional sports.  Recently, Bartolo Colon, currently the oldest major league baseball player at 43 years of age, signed a $12.5 million pitching contract with the Atlanta Braves.  How in the world is he able to be so productive at an age where most players are long retired?  You guessed it – his own stem cells.

What about NFL Hall of Famer and two-time Super Bowl winner Peyton Manning, who literally broke his neck playing the game he loved?  Yes, his own stem cells.  International athletes like tennis champion Rafael Nadal have benefitted as well.  In fact, hundreds of professional athletes have healed from serious injuries by using their own stem cells. 

Personal stem cells can work.

Unfortunately, many athletes have to go overseas to use their own God-given healing potential, because the FDA doesn’t allow certain techniques to expand your really strong (mesenchymal) stem cells.  But these wealthy, well-connected athletes who earn their living by being fit -- often enduring severe injuries and pain -- know the truth.  Your own stem cells can heal you.

Just think how many wounded combat veterans could benefit from their own cells!  A 2014 University of Michigan study found that 60 percent of U.S. Army soldiers who were unable to return to a military career after an Iraq deployment couldn’t do so because of a muscle, bone or joint injury. The strongest predictors of inability to serve were fractures and chronic knee, shoulder, spine and back pain. 

But it’s not just musculoskeletal conditions.  Our troops also have crippling brain injuries from IED and other bomb blasts.  According to the Pittsburgh Tribune Review, tens of thousands of combat veterans returning from Iraq and Afghanistan with undiagnosed brain injuries “often were ‘thrown into a canyon’ – falling deeper into despair and sometimes flirting with suicide or addiction.”

It gets worse.  To cope with the pain and depression of injury, many wounded warriors turn to addictive pharmaceutical painkillers or illegal street drugs.  A 2011 American Public Health Association report found that the overdose rate for veterans on opioid painkillers was twice the national average, and that they are more likely to become addicted to heroin. 

Opioid abuse is such an epidemic that, in a recent letter to physicians, the Surgeon General called it a crisis and launched the “Turn the Tide” campaign to raise awareness about the issue. 

Fortunately, many wounded warriors have already begun turning the tide by replacing their toxic pills with medical marijuana.  Now, we owe it to our troops to help them turn the tide even further, by giving them another option – personal stem cells.

We celebrate our troops with parades and salutes on Veteran’s Day, Memorial Day and during just about every major sporting event, and justifiably so.  But maybe the best way to celebrate them is to allow them to heal themselves with their own cells so that they can once again be the parents, siblings and children we love.  Our government has a moral and ethical obligation to do so, and we the people have an ethical and moral obligation to make them do it.

Stem Cell Therapy Not FDA Approved

I want to be clear: clinical use of adult, embryonic and umbilical cord stem cells are not FDA approved, and any determination as to their safety or efficacy requires further research (although, in the interest of full disclosure, I have had umbilical cord stem cells in China and the therapy helped me greatly with no negative effects). These stem cells are properly under the domain of the FDA because they are biological agents that are taken from one person and injected into another person and intended to treat a disease. 

What I’m talking about are cells that go from YOU into YOU.  Personal stem cells are as natural as marijuana, and the federal government should acknowledge that your use of your own cells should be a transaction between you and a licensed physician, and regulated at the state level.

States like Colorado and Washington have already proven how safe and healing – not to mention lucrative – marijuana can be, despite what all of the “experts” were saying.  Your own stem cells are no different.

Right now, personal stem cells are technically legal, but the future regulatory landscape is so uncertain that few physicians offer it and few Americans can afford it.  Rather than expanding access to personal stem cells, the FDA has recently tried to restrict their use.

The proposed action by the FDA is wrong.  Unfortunately, it seems like the agency is refusing to hear the cries of persons with disabilities (like myself) and wounded warriors who come home crippled after serving abroad -- so that the children of federal agency bureaucrats can be safe here at home.

I believe marijuana legalization gives personal stem cell advocates hope.  The legalization movement succeeded despite federal intransigence because of the success of direct democracy. People voted at the state level in referendums, without elected officials operating as self-interested intermediaries. 

Given the important nature of this issue, and the apparent ineffectiveness of federal government lobbying and litigation alone, the personal stem cell movement may need to add a referendum component as well.  It may be difficult, but it can be done. 

Educate yourself, and then educate others.  Human beings are not drugs.  We need to keep it that way.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor in Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Dr. Ford is not affiliated with any stem cell treatment provider. He suffers from chronic inflammation in his digestive tract and is unable to eat solid food.

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.

I Miss the Person I Used to Be

By Deanna Singleton, Guest Columnist

I'm not the same person I was 8 years ago. It's not because I went through a tragic life experience or that I finally figured out the point of life.

It was that one day, all of a sudden, I opened my eyes in the morning and both my legs were in pain. And over the course of the last 8 years it keeps getting worse. I have advanced spinal stenosis, three bulging discs and degenerative disc disease.

It’s now to the point that at the age of 36, it takes everything I have to get in the shower or to just make a dinner for my kids and hubby. And if I actually do take a shower or do dishes, I'm usually in tears from the pain. I can't move the rest of the day from that small activity. Some days, just the water hitting or running over my skin is enough to make the average person want to die.

I want my life back. I didn't ask for this daily pain.

The first thing I think about when I open my eyes in the morning is where are my medications. I have to take pain medication just to walk through my house or to play with my children.

DEANNA SINGLETON

I used to have a very clean home. Now, not so much. Now it’s normal to walk into my home and see a mountain of clothes filling one whole couch. I loved to clean my house and make it a beautiful home for my family. I used to be out in my garden or flower beds, because that's my happy place. But I can no longer go there.

I used to be able to take my three girls on a walk to the park. Or walk the mall. Now I'm just lucky to be able to walk the grocery store, using the cart as a walker just long enough to get stuff for dinner.

Last but not least, I used to be a great wife. Smiling, happy and at the door to greet my husband after working a long hard day, with makeup and hair done. To make sure he remembers why he comes home every day. 

It's hard to feel pretty when you hurt so bad. Now I'm probably on the couch or in bed with my pajamas still on. With no makeup and hair in a messy bun. No more greetings at the door. And a smile no where to be found.

I used to be a great partner who was loving and affectionate. Who made sure my husband was happy in every way. Now it hurts so bad that we both just feel terrible afterwards.  Me because of the pain level, and him because he feels bad and that it's his fault now.

I used to work at two jobs, until I lost my pain meds due to my doctor not being comfortable any longer prescribing opioids because of the CDC guidelines and our local DEA. I was told by the doctor that he could no longer prescribe my medication.  And just like that, I went from 190 mg of oxycodone a day down to zero. No tapering.  My body then went into massive withdrawal.  I thought I was going to die. And since then I can no longer work.

In the state of Oregon we find no relief or sympathetic doctors who are willing to prescribe these life saving opiates that have been proven to give me my life back. And it's all because doctors are too scared of the CDC and the DEA to treat us patients, who rely on these meds to have any function or quality of life.

I have never wanted someone to cut into my body so bad. But no surgeon will do my surgery till I turn 40. My primary care provider will barely give me tramadol.  I've been to every specialist possible. And gone through countless medications, physical therapies and injections.

I'm just asking our medical doctors to do the job they once probably loved and not be so afraid to treat their patients as they know best. And let me be the mom and wife I used to be, and know I can be once again.

I just want my life back. For my kids, my marriage and for a somewhat active life.  I will start my life at 40.  I will probably be the happiest woman ever to return 40.

Deanna Singleton lives in Oregon with her family.  She is a proud supporter of #PatientsNotAddicts on Facebook and on Twitter.

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.

Choose the Green Door

By Barby Ingle, Columnist 

When there is a hallway full of doors and you don’t know which one contains the cure, where do you start? Which door do you choose?

I go with the green one. The one that makes the most sense to me personally. The door is a place to start finding answers and access to care. If what we need is not behind that door, remember there are other doors down each corridor of life.  

Patients all over America have been struggling to get good healthcare for chronic conditions since I can remember. These patients, along with their loved ones, healthcare providers, and millions of taxpayers, are suffering the pitfalls of a healthcare system that too often doesn’t work.  

In most chronic care situations, we are not taught self-advocacy skills. As a result, we often don’t know our rights or responsibilities as patients. 

For this terrible situation to stop, it is going to take a combined effort on the part of many people. But it starts with us becoming better informed, proactive, and organized as patients.  

Better organization, prevention programs, access to care, and learning the tools to take care of ourselves between appointments will go a long way towards ending this crisis in our society.

I talk a lot about being prepared and organized as a patient to receive the best healthcare possible (see “What to do Before Seeing a Doctor”). Starting a journal and keeping a checklist of things to talk about with your doctor will help guide you through the minefield of the healthcare system. It takes work in the beginning, but gets easier as you go. You’ll save yourself more pain and challenges in the future.

Finding the Right Fit

When it comes to living the best life you can, every person has choices. There are even more choices for those who have chronic pain or illness. It is important to find the right fit for you. Patients can either let the disease run them or sort through the system and take control of their disease.

Your first goal should be getting a correct diagnosis. If you need to go to multiple doctors, take the time to do it now to prevent your health from deteriorating further.

Each doctor has their specialty and treatment options that they are comfortable with. This does not always mean that they are the right doctor for you or that another treatment will not work. If you are not comfortable with the treatment offered by your current provider, find a doctor who you trust to try different options. 

It can be very aggravating to deal with a kidney stone or torn ligament, but at least there is an end in sight. You can get back to a “normal life” once the stone passes or the bone break heals. Other conditions such as high blood pressure, heart failure, diabetes, Lyme disease, multiple sclerosis, RSD, arthritis, osteoporosis, neuropathy and other chronic conditions can be more of a challenge for patients and usually last a lifetime.

Coping with a chronic condition takes hope and self-awareness. Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family will say, “Just live with it” or “Get used to it.” But you are the one who lives with a chronic condition. You can learn to live with it and how to manage life around the symptoms and problems without losing yourself. 

Staying Positive

Being positive and hopeful in what you can make of your future is a big factor in determining whether you have a successful outcome. We need positive attitudes to make lifestyle changes. Some will be easier, such as changing your diet or beginning a physical therapy routine. Others will be more difficult, like having to sever ties with a family member or friend who is hindering your recovery. We also need the support from our healthcare providers.

Most of all, we need to recognize that we are responsible for ourselves and that a successful treatment may require changes that only we can provide to ourselves.

We all deserve to have our pain taken seriously. To have the pain managed well instead of under-treated, untreated, or over-treated is important. Pain must be managed effectively and in a timely manner, with the underlying condition being addressed while the pain is being managed.

Do not assume that your doctor knows how to treat your pain. Every patient is different and doctors only know what they have been exposed to in their practices, schooling and continuing education classes. We must keep going until we find the door that is right for us. 

Don’t forget your lifelines. There are prescription programs to help cover co-pays, ways to appeal insurance decisions, and ways to negotiate with your providers to get the care needed. The goal is to receive effective relief and be able to organize and manage all aspects of life.

Finding good healthcare and support systems will lower the number of hospital visits, time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments. All of which contribute to the high costs of healthcare. On average, living with chronic pain costs $32,000 per patient per year.

Staying organized, keeping good records, and communicating with your pain care team will help you get access to proper and timely care.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International 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 Addict is Not Our Enemy

By Fred Kaeser, Guest Columnist

A number of people in chronic pain support the plight of those with addiction. Yet, over the past year and a half, I have read any number of derogatory statements and comments here on Pain News Network and on its corresponding Facebook page about people who are dealing and struggling with addiction.

Even a cursory review of the comment section on different articles will reveal rather quickly any number of folks who are dismissive of those dealing with addiction. Some express a real hatred.

One person actually suggested letting “all the druggies overdose, one by one.”

Another laments that “addicts can't die quick enough for me.”

Some express a sort of jealousy over addicts getting better treatment than they: “It's good to be an addict" and "Maybe I'd be better off being an addict.”

And then there are those who got all shook up over Prince's overdose, not so much from his death, but because it was linked to an opioid and that it might make it harder for them to obtain their own opioid medications.

And to think these comments come from the same people who beg others to better understand and accept their own need for better pain care!

It wasn't very long ago that the "drug addict" was scorned and forgotten: the druggie on the dark-lit street corner or the drunk in the back-alley. Pretty much neglected and left to fend for themselves.

But that started to change in the '70s and '80s, and nowadays the person suffering from addiction is recognized as someone who suffers from a very complex disease, is quite sick, and struggles to access the necessary care in order to recover. Societal attitudes towards those with an addiction now reflect empathy and a desire to help, as opposed to denunciation and dismissiveness.

We chronic pain patients are looking for the same acceptance and understanding that addicts were desperately seeking just a few short years ago. And that struggle took many, many decades, one might say centuries, to achieve. Our struggle is similar, and my guess is if we keep our eyes and focus on reasonable and rational argument, we too will achieve success in our struggle to obtain acceptable pain care and understanding.

But if some of us continue to see the enemy as the person who has an addiction, our fight for justice will suffer and be delayed.

Why? Because the addict is not very different from us.  Irrespective of the reason why a drug or substance user becomes addicted, the addict just wants to feel better, just like us. The addict is sick, just like us. The addict wants relief from pain, just like us. Perhaps not from physical pain, but emotional and psychic pain. The addict wants proper medication, just like us. The addict needs help and assistance, just like us.

And sometimes the pain patient is the addict. Sometimes we are one in the same. A recent review of 38 research reports pegs the addiction rate among chronic pain patients at 10 percent. From a genetic predisposition standpoint, we must presume that some addicts have become addicted just because of their genes, just like some of us.

No one with an addiction started out wanting to become addicted, just like none of us wanted chronic pain. And while our government is trying to figure out how to minimize the spread of opioid addiction, it is not the addict's fault as to how it has decided to that.

In many ways those suffering from addiction are not very different from us who suffer from chronic pain. We both struggle for acceptance, we both require empathy and understanding from the world around us, and we both require treatment and proper care to lead better and more productive lives.

But, I firmly believe that as long as there are those of us in chronic pain who feel compelled to ridicule and demean those who are addicted, that we will only delay our own quest to receive the empathy we so justly deserve in our journey towards adequate pain care.

Empathy breeds empathy, and if we expect it for ourselves, we must be willing to extend it to others. And that includes the addict. 

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He suffers from osteoarthritis, stenosis, spondylosis and other chronic spinal problems.

Fred taught at New York University and is the author of What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents.

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 Give Back on #GivingTuesday

Pat Anson, Editor

Most of us know all about Black Friday – the annual post-Thanksgiving shopping frenzy – that marks the day many retailers finally begin to turn a profit for the year. There’s also Small Business Saturday and Cyber Monday – also aimed at getting us to shop, shop, and shop some more.

But are you ready for Giving Tuesday on November 29?

That’s the day that kicks off the charitable giving season, when many people begin to focus on their holiday and year-end donations to charity. Now in its fifth year, #GivingTuesday relies primarily on social media (note the Twitter hashtag) to spread the word about giving and philanthropy – as opposed to the constant drumbeat about holiday shopping.

This year Pain News Network is partnering with other non-profits, civic organizations and charities to promote #GivingTuesday and other small acts of kindness.

I know kindness is something that pain sufferers could use more of. Many of you are no longer able to obtain pain medication or have seen your doses cutback.  Others are struggling to find new doctors and treatments, or pay rising insurance premiums and deductibles. It’s been a difficult year, and there’s a lot of uncertainty about what 2017 will bring to the pain community when a new administration takes office.

Whatever happens, I want you to know that Pain News Network will be there to cover it and keep you informed. So far this year, we’ve reached well over a million people around the world with PNN's unique blend of news, investigative reporting and commentary on issues affecting the pain community. We provide an independent voice – and go out of our way to include the patient perspective -- which you just don’t see in the mainstream media. This reader-supported journalism is only possible through donations from people like you.  

Please consider a donation to PNN today by clicking here. We’ve partnered with PayPal to provide a safe and secure environment for donations by credit or debit card.

If you prefer donating to another pain organization or advocacy group, please consider one of our affiliates – a list of which can be found by clicking here.  Non-profits such as For Grace and the International Pain Foundation do a remarkable job spreading awareness about chronic pain and are deserving of your support.

If you prefer an organization in your own community, #GivingTuesday has a web page that can help you connect with a local non-profit or school near you. If money is an issue, many charities are in need of volunteers willing to donate their time, goods or services.

As the name implies, #GivingTuesday is all about “giving back.”

How will you give back this Tuesday? 

Wear, Tear & Care: Needling Away Pain

By Jennifer Kain Kilgore, Columnist

One would think that encouraging inflammation is a bad idea, right?

“Let’s stick you with needles, inject a dextrose solution, and create some new tissue. It’ll be great!”

That’s what my dad has been saying since 2004. He had prolotherapy done for his low back in college, and it did wonders for him. I was extremely dubious. It sounded far too strange – injecting a sugar solution? Into my neck?

I have very extensive injuries from two separate car accidents. To sum it up quickly, I have badly-healed thoracic fractures, bulging lumbar discs hitting nerves, and two cervical fusions that cause a lot of post-surgical pain. The idea of purposefully creating more inflammation sounded insane. But after my second fusion, when the pain started increasing no matter how dutifully it was treated, I decided to give it a try.

Prolotherapy, or sclerosing injections, is still considered a bit radical, even though it’s been around since the 1930’s. The reason for the mystery is because there haven’t been enough double-blind studies conducted yet.

It’s a non-surgical ligament and tendon reconstruction injection designed to stimulate the body’s natural healing processes. By creating inflammation, you prod the body to create new collagen tissue and help weak connective tissue become stronger.

Because I live in the Boston area, that meant the drive to the doctor’s office was an hour each way. Most people do each area (lumbar, thoracic, cervical) separately, and each area takes approximately five rounds of shots. For me, that would’ve meant an eternity of needles.

I chose the insane route: five weeks of intense pain, meaning five weeks of all three areas at the same time.

It’s not supposed to hurt that much – people can take an aspirin and go to work after the appointment, grumbling about their aching knee. My pain response has become far more sensitive in my back and neck since the accidents, so what’s like a bee sting for other people is like thick surgical needles for me.

As such, it was hellishly difficult. Each appointment was on a Wednesday and took about fifteen minutes. The doctor injected my low back and then let me rest with an ice pack down the back of my pants. Then he injected my neck, loading me with more ice packs. Then, very gingerly, he approached the mid-back, which was the most damaged of all. He had to consult my MRIs for that one because the bones are not quite where they’re supposed to be.

For me, it took about an hour for the real pain to kick in, which gave me just enough time to drive home. The doctor numbed me with a topical anesthetic as well, so I sat on five ice packs and made the drive back to my house, where I collected all the ice packs in the freezer and arranged them on the recliner. Then I wouldn’t move for about two days. Sleeping was almost impossible without ice packs stuffed into my pajamas; I still can’t sleep on my back, two months later. Sitting like a normal human being was out of the question.

For five weeks, I spent the two or three days after shots recovering from absurd amounts of pain, and then by the time I’d recovered, it was almost time for the next round. My level of pain was far more than what other people online have reported. I also did a lot more shots at once than other people do. My experience was very much abnormal. But, most importantly: Did it work?

Well, yes. It did. Amazingly so. I’d told myself at the beginning that if this procedure controlled even 25 percent of the pain, that would be worth it. That would be worth the driving, the pain, and the out-of-pocket cost that isn’t covered by insurance.

My cervical fusions caused my arms not to work a lot of the time. Typing, writing, and using my hands for general tasks was very difficult and tiring. Additionally, my shoulder blades had what felt like black holes filled with electric fire. Nothing helped it. Nothing worked.

Two weeks into the prolotherapy regimen, my arms were fine and the black holes had disappeared.

I still have a lot of my daily low-grade, all-body pain. I still have massive headaches and neck pain. But my sciatica is also better, I’ve noticed – I was able to go to a rock park called Purgatory Chasm and clamber all over humongous boulders, and afterward I was only sore, not in agony.

So do I think it works? Absolutely. The other great part is that it’s supposed to last for at least a few years. Steroid injections only last a few months. I very much prefer this schedule.

If you can get past the “alternative therapy” label and can scrounge up the money to pay for it, I’d highly recommend prolotherapy. It worked for me, and I’m still waiting to see more of its effects. I hope that it works as well for you.

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

You can read more about Jennifer 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.

Why I'm Thankful to Be Alive

By Crystal Lindell, Columnist

There were lots of times over the last year where I was not at all thankful to be alive. Where just the idea of being alive made me want to die.

Like that time almost exactly a year ago now when I was sitting on the toilet, sweating, with my elbows on my knees and my face in my hands, barely about to endure the physical withdrawal of morphine that I was going through.

I would have given anything to die right in that moment.

And there was the time back in the spring when I had a really bad reaction to a medication called Buspar (buspirone) that led to a days-long anxiety attack and the most vivid suicidal thoughts I’ve ever experienced.

I really wanted to die then as well.

But despite my pleas, I did not get to die. I kept living. And now, this year on Thanksgiving, I have the perspective to see why that’s a good thing.

Because during the past 12 months I’ve also gotten to go to Ecuador and France for work. I’ve met my friend’s new baby and watched her toddler learn to walk. I saw my sister’s basketball team win a state championship, dyed my hair blue, and had the best escargot and creme brulee in a French town just 30 minutes from the German border.

I got a promotion at work, and saw the sunset from the top of the Eiffel Tower. I saw the impossible become possible when the Cubs won the World Series, and I ate seafood while overlooking an infinity pool in Guayaquil, Ecuador.

There so many good things I would have missed. 

The episode with the Buspar was especially traumatizing. I had started taking it because of the intense, daily anxiety I was having after going off opioids. But I was one of the rare people who had an inverse reaction to it, leading to unbearable anxiety and suicidal ideation.

If you have never had a medication cause suicidal ideation, the best way to describe it is that your inner voice suddenly changes. And all you can think is, “Just do it. Just kill yourself. Nobody would miss you anyway. You don’t have to be in pain anymore. Your heart doesn’t have to break anymore. Just do it.”

I was wearing my favorite blue dress that day, and I can’t even look at it now without flashing back to the moment I had locked myself in the bathroom stall at work and decided to take all the pills in my purse.

Suicide isn’t very logical, so on some level it makes sense that I didn’t really come up with a logical reason to not do it. In the moment, I wasn’t able to convince myself that there were better days ahead or that anyone would miss me.

In the end, what stopped me was the very thing that has saved me so many times: My writing. I realized that if I killed myself in that moment I wouldn’t be leaving behind a suicide note. And I couldn’t very well die without a goodbye letter. So I stopped what I was doing, and found the strength in my wobbly legs to get myself out to my car and drive home.

Looking back and knowing how serious it was, I realize now that I should have gone the ER right then, but it would be days before I went in for a psych evaluation. In the meantime, I took lots of deep breaths and a hot bath and convinced myself to give this whole life thing a go again the next day.

That happened on May 17, and not a month goes by where I don’t mark that day. Where I don’t give myself permission to be a little more loving to my soul than I usually am. And where I don’t think back about all the things I could have so easily missed.

It’s been a long year, and most of what I’ve endured can be traced back to my physical pain and my attempts to break free from opioids. I did not see any of it coming, and was woefully unprepared to endure it.

But endure it I did. And it turns out, there were so many lights at the end of the tunnel. So many things I would have missed.

If you’re struggling, please don’t hesitate to get professional help. I promise, with my whole heart, there are so many lights at the end of your tunnel too.

For help, call the National Suicide Prevention Lifeline, 800-273-8255.

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.

Pain Companion: How to Survive the Holidays

By Sarah Anne Shockley, Columnist

The holiday season is upon us. For many it’s a time meant for joyful festivities, but for those of us in chronic pain, planning and participating in gatherings with coworkers, friends and family can pose significant challenges and stresses.
 
The demands on our energy, time and patience are likely going to become much higher than normal, and we’ll need to make wise choices about what we can and can’t do.

How do we find ways to participate enjoyably and not send our pain levels skyrocketing?

You Don't Have To Do It All

Learn to say no. Nicely, kindly, but firmly.

You don't have to be the person you were before you were struggling with pain, and you shouldn't try to be.

Yes, people have expectations of you and they forget that you're in pain. It's no fun, but you're going to have to gently remind others that you can't be everywhere and do everything they expect of you this holiday season.

Tell them that it's also hard on you, not be able to be as involved as you have been in the past, but that it is very necessary for your healing.

Let them know that the best way they can support your healing is to allow you to make the choices you need to make -- the choices that may keep you home a little more and out a little (or a lot) less often.

Give yourself permission to ask others to do more than usual so you can attend gatherings without wearing yourself out, and give yourself permission to stay home if you need to.

Let coworkers, friends, and family know that it's nothing personal about them. It's personal about you. You're taking care of yourself.

Give Yourself a Free Pass

Give yourself a free pass to say yes or no at the last minute, and decide you’re going to be okay with that. That means that you're going to reply with a firm "maybe" when you're invited anywhere. It means that you can leave the decision about whether you're up for something or not right up to the moment you're heading out the door. And it means preparing others to accept that.

Tell friends and family that you may need to cancel your attendance at the last minute, or that you may need to leave early, and ask for their understanding ahead of time. Let them know that you really want to be able to be with them, and your absence has nothing to do with how much you care about them. It has everything to do with taking care of yourself.

Then do what you need to do in that regard, and do it without guilt. Your priority is to find a way to take care of your need for rest and low stress, even in the midst of this demanding season.

Don't Cut Yourself Off

With that said, don't completely cut yourself off from friends and family either. Being with loved ones for special occasions can be one of the most joyful aspects of being alive, so you don't want to miss out entirely if you can help it.

So, here's my formula: Choose a small number, say 3 to 5 celebrations for the wholeholiday season that you feel are the most important to you personally. I don't mean the ones you used to think were important based on obligations to work, family and friends. I mean the ones you truly enjoy, the ones that feed your spirit, the ones you would really miss if you couldn't go.

If at all possible, find a way to get to those and only those. Go for only a brief period, if need be. Attend without contributing to food or preparations. Again, give yourself a guilt-free pass.

Let yourself have the times that are important to YOU, and say no to the rest.

This may sound selfish, but if you're in pain, you need to be a little more selfish. It isn't doing anyone any good for you to wear yourself out trying to do everything you used to do and go everywhere you used to go, if you will be raising your pain levels and not enjoying yourself.

So, instead of being exhausted and grumpy at too many functions, pick a few choice ones you can attend with enjoyment. Above all, be kind to yourself and take care of yourself first.

Find an Ally

Recruit a holiday ally -- a friend or family member who understands your situation -- who will do the explaining for you, drive you over to functions, pick up the slack in terms of bringing food or making arrangements, and agree to leave early with you if it's necessary.

You might find someone for the whole season or you might want to ask a different person for each function. Remind yourself: You need more help. You need to do less.

Don’t hide away this holiday season if you can help it, but also give yourself the gift of attending fewer functions, say yes only to the ones you really enjoy, find an ally or two who will support you, and giving yourself a free pass to say no so that you can fully enjoy the celebrations you do attend.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.

Time to Fight for Our Rights as Pain Patients

By Carol Levy, Columnist

Where exactly do the Drug Enforcement Administration and the Centers for Disease Control and Prevention stand on working with and helping those with chronic pain, as opposed to ignoring our voices and pleas?

At the Rally Against Pain in Washington, DC on October 22, the CDC was invited to come but no representatives attended.

The DEA notifies all that they will be banning kratom because it is “an imminent public health hazard.” But after a major hue and cry from the kratom community, a decision was made to conduct a new analysis of the herbal supplement and have a public comment period.

Why is it that kratom and medical marijuana, which many patients say are effective in relieving chronic pain, are poison to the powers that be in Washington?

Is it just the result of lobbying by the pharmaceutical industry in an effort to protect profits?

Is it another jab at us because they can't see our “invisible” illnesses and disorders?

Is it a result of the media and the public not knowing or caring about our plight?

October 7 was Trigeminal Neuralgia Awareness Day. Many of us tweeted and posted on Facebook about it, but the news media for the most part gave it a ho-hum. Do they have a policy of not reporting on a disorder if they don’t think enough people have it?  

Instead, the media seems content to repeat the hysteria laden stories and recycle articles about opioid medication abuse, while mostly ignoring those who may benefit from opioids or have them as their only treatment option.

While it is scary to see headlines about banning kratom and other substances many of us use for pain relief, it is worth remembering that an FDA advisory panel in 2009 voted to ban Vicodin and Percocet, because of their effects on the liver. No such ban was adopted, but they did change the amount permitted and how you can get them.

We need to be concerned about the “slippery slope” that comes with threatened bans. Instead of reacting with fear and wasting our emotional energy, we need to respond proactively. Better to get out paper and pen, and start sending letters and emails to your representatives in Congress and the FDA, DEA and CDC.

Kratom supporters won their battle, at least temporarily. Why can’t we?

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.