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?  

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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.

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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.

Opioids Saved My Life

By Rebecca “Becky” McCandless, Guest Columnist

My new life of chronic pain started in May of 2005. After being diagnosed with degenerative disc disease, I was given a series of 3 epidural steroid injections with a corticosteroid made by Pfizer called Depo-Medrol.

I had no relief from the first two injections, but my doctor insisted that I try a third one. He struggled to get the needle into the epidural space, probably because of scar tissue in my back caused by a prior back surgery, a laminectomy.

After the 3rd steroid injection, I had a severe, instant headache, which was relieved somewhat when I laid down. The doctor had punctured my dura, the outer lining of the spinal cord, which caused a spinal leak.

He was defensive when I told him about my headache pain, saying, “No way, there was no fluid in my syringe.”

After an unsuccessful blood patch, I ended up in the ER a week later with the worst, throbbing headache I ever suffered. Every time I lifted my head I vomited violently.

The doctor ordered numerous tests and he finally diagnosed me with too much STRESS! I knew something had gone wrong during the epidural steroid injection, yet my doctor blamed me for the harm he did to my spine. My pain worsened over time and it became so intense that I thought about suicide.

Luckily, I found a doctor who prescribed opioids for my intractable pain or I would not be here. Opioids saved my life.

rebecca roberts

I tried many other drugs, including Lyrica, which is much more expensive, made me tired and affected my thinking abilities.  Opioids allow me to do my grocery shopping and care for myself.  If I don't have access to my pain meds, I have no quality of life. Opioids keep my pain at tolerable levels. It does not get rid of my pain totally, nothing ever will.

Opioids are often blamed for accidental overdoses, but I know better as I have arachnoiditis friends who committed suicide because their pain was so bad.  Some families deny it was suicide because insurance companies will not pay if a family member commits suicide.

Eventually I found a doctor who diagnosed me with arachnoiditis. There is no cure for this pain condition. It is mainly iatrogenic, which means it is caused by a medical procedure.

I also found out arachnoiditis is caused by Depo-Medrol. Pfizer warns against the use of this drug in epidurals in Australia and New Zealand. The New Zealand datasheet states that Depo-Medrol must not be used in epidurals and on page 18 it says it can cause arachnoiditis.  Patients need to read the datasheet for themselves before they agree to allow a doctor to do an injection near their spinal cord.

Three months after my epidurals, I could no longer work and had to leave my quality control job at a manufacturing plant, making transmission parts for Honda, which I had done successfully for four years. I loved my job and worked 60 to 70 hours per week.  Now I rely on Social Security disability. 

Luckily, my disability was quickly approved. Many of my arachnoiditis friends struggled for years to get their diagnosis.  Some never do.  According to one estimate, there are 11,000 new cases of arachnoiditis each year, but I think it is much more than that because doctors will not admit to harm.

My medical injury was 10 years ago.  I have been on a high stable dose of opioids with no increases. Now there is so much talk with the Centers for Disease Control Prevention creating guidelines to control opioid prescribing.

The CDC is clueless because they are recommending a cap on the daily dosages. How can they estimate a person’s pain levels? Everyone is different, and there are genetic differences and high metabolizers who need higher doses to control their pain. If that happens, my pain will be uncontrolled again, and I worry about my future. 

Is this fair to the thousands or even millions of pain patients who may suffer from arachnoiditis, who have been harmed by the medical community and incompetence of the Food and Drug Administration? Even though the FDA issued a warning on steroids used for back pain, doctors are ignoring it and not telling their patients. We were harmed and now we suffer because doctors are turning us away.

Thank you to producer Gerri Constant and KCBS-TV in Los Angeles for reporting on the dangers of epidural injections.  We agree with Dr. Forest Tennant that this pain condition is no longer rare.

Rebecca Roberts lives in Indiana. She is a member and supporter of the Arachnoiditis Society for Awareness and Prevention (ASAP)  and the Facebook group Arachnoiditis Together We Fight.

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.

A Pained Life: We Are Survivors

By Carol Levy, Columnist

So many shows on TV celebrate "survivors" -- survivors of cancer and abuse are the most recent examples I have seen.

But those of us with chronic pain are never celebrated. Instead we are ignored, or worse, excoriated as being the cause of the "painkiller epidemic.”

60 Minutes recently did a story entitled "Heroin in the Heartland." In it, those who are prescribed opioid pain medications and their doctors are portrayed as pied pipers to the world of heroin.

The story was not about those who legitimately need, are prescribed, and sensibly use narcotic medications to tame their pain. Even a cursory sentence to negate the stereotype would have been gladly received.

We who live in chronic pain most often seem to be the “fall guy” for the ills of the world, at least when it comes to the use of opiates, both legal and illegal. To the media and maybe the world, we are not survivors, not under their definition: someone who overcomes a serious illness or situation.

After all, we have not “overcome.” We can't overcome, because our struggle is ongoing, every day, for some of us, every minute, every hour; fighting pain and often disability. Even on a good day, for many of us the fight is ever present; the fear of when it will return being in the forefront of all we do and think.

This is how the Merriam-Webster dictionary defines survivor:

1:  to remain alive after the death of : <he is survived by his wife>

2:  to continue to exist or live after : <survived the earthquake>

3:  to continue to function or prosper despite :  <they survived many hardships>

How does that not define us?

We continue every single day, doggedly putting one foot in front of the other. The more able among us continue to work, raise a family, and be an integral part of the community, despite being in severe pain. The amount of stamina, perseverance and strength that takes would take many an ordinary person down and out.

Others of us have pain so severe, so debilitating, that merely being able to go outside, to get to the store, for some even being able to get out of bed, is a Herculean task. And yet, we do it.

It can be hard for us to see and acknowledge this monumental task we succeed at each and every day, merely by getting through each day. We work so hard at the struggle and it becomes so second nature, that it is often invisible to us, just as our pain is invisible to the world. After all, if no one sees the pain, how can they see or understand the struggle?

So how do you define a survivor?

It is easy. Just look in the mirror.

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.

Surviving the Hurricane of Chronic Pain

By Crystal Lindell, Columnist

I have recently started feeling better these last few months — a string of good days, I like to say — and it’s given me a chance to catch my breath and reflect on some of the crap I’ve endured over the last couple years.

For me, waking up one day with stabbing rib pain was like swimming along the river of life, only to be picked up by a hurricane, hurled back about 100 miles, and left to fight the raging current in water that was barely above freezing.

And yeah, it made about as much as sense as a hurricane in a river.

It was like everything I had accomplished had been taken from me, and instead of swimming forward, or swimming at all, I was literally gasping for air, about to drown every single day.

And people would come along and say, “Oh, I’ll pray for you!” And I’d be like, “Umm, I’m literally drowning! And there’s a hurricane! In a river! HELP ME!”

And they would say, “Well, if you really want to survive, you’ll give up gluten.” And I’d be like, “Umm, I just need a life raft! Giving up gluten isn’t going to help me!”

And they would say, “Well, if you were a horse, we would have let you drown by now.” And then they would laugh. And I’d be in the river, trying to survive the winds and waves and the rain.

And then someone with the best of intentions would come up to me and say, “Well, everything happens for a reason. I’m sure there’s some larger reason why you’re drowning.” And then they would walk away. On the land.

I spent almost six months on the verge of drowning. And eventually I just got so tired that I wanted nothing more than to close my eyes, fall back into the water, and let it all go. Let the pain go. Let the depression go. Let the daily battle to stay above water, go.

I spent every day wanting to let go. Planning ways to let go. Convincing myself that if my family really loved me, they would just let me go.

I also started stripping away everything I could so that I could stay above water. I got rid of my part-time job as a church youth leader. I threw my independence over board and moved in with my mom. And eventually, heartbreakingly, I even let go of my boyfriend’s hand. I let it all slip away so I could focus all of my energy, every day, on breathing in air instead of filling my lungs with water.

And I tried to see every doctor I could find, looking for a lifeguard. But they would say things like, “Well, you don’t look like you’re drowning.” Or, “Well, I mean, you’re drowning. But we can’t see the hurricane, so there’s not really anything we can do about it.”

And then, finally, a rescuer came along. We will call him, Dr. M, for Miracle. I literally tear up when I think about meeting Dr. M. 

He couldn’t see the hurricane either, but he believed me when I said there was one. And he understood the one thing I needed more than anything was a life raft. So he threw me one. Dr. M put me on a large dose of opioids, and it was the best thing that could have ever happened to me. It was like someone calmed the winds and the storm started dying down. The water finally got still for the first time in a long time.

He was the first doctor to actually take my pain seriously. I imagine that he’s either had chronic pain himself, or loves someone who had it because that’s the only way I can explain how compassionate he was — how amazing he was about believing that I was truly drowning.

It’s true that the best thing you can say to someone who is sick is, “I believe you.”

It was because of Dr. M that I finally got on a drug regimen that allowed me to float in the water every once in a while and rest my arms. To let the life raft do some of the work. And when I told him that the medication wasn’t lasting me all month — that, near the end of the 30 days, I was starting to drown again — he believed me, and gave me enough to get through all four weeks.

But even with the drugs, the only thing I could really do was float. I couldn’t swim forward or even get to shore. I just stayed still, trying to survive all the times the winds picked up, or the water got below freezing, or the waves got too big. I did my best to endure the side effects from the medication, the pain flares, and the ER visits.

There’s a saying, “You’ve got what it takes, but it will take everything you’ve got.” And surviving this has taken everything I ever had in my soul.

For the last two years though, I’ve just been happy to still be alive. Happy that I had a life raft and some calmer waters. I started planning how to live my life where I was. It was 100 miles behind where I’d been, but I started to realize that the trees in that area were actually kind of pretty. And that there were some other people floating around that I would have never met if there had never been a hurricane. I started to think that perhaps I could set up a life there.

But then, something happened. Something I never thought would ever happen, actually happened. I started swimming forward again.

I had tried every day that I could to swim forward, only to be pushed back. I would wake up and try to shower, go for a walk, drive, or do anything that would help me go forward again. But every time, I ended being tossed right back to where I was — sometimes even further back.

One day though, I swam forward and I stayed there. And then the next day, I swam forward a little more, and I stayed there too. And then again, again and again.

I had started taking vitamin D, after realizing that I was tragically deficient in what should more accurately be referred to as hormone D. When I started getting my levels back up it was like I suddenly had the strength to move forward again. My whole body could swim again.

And for the first time in a long time, I experienced things I had almost forgotten existed. The perfect pleasure of going for a long walk on a crisp fall day. The heart-stopping independence of being able to get in car, drive myself to the mall, and do the one thing I used to love most of all — shop. The joy of being able to take a shower and immediately blow dry my hair without needing an hour-long break in between the two.

There were so many things that I couldn’t do because I couldn’t swim forward for so long. So many things I had to give up. Like folding my own towels in my own special way. And waking up to the sunrise and being happy to see the morning light without having to worry about the pull of fatigue from my medications.

And even, especially, turning over and laying on my right side. I had not laid on my right side in over two years.

So now, here I am, finally swimming forward again for the first time in a long time. For now, it feels like maybe the hurricane has finally passed. But I still wake up every day worried that there will be another storm. I worry that the winds will pick up and I’ll be hurled backward, and I won’t have a life raft and I’ll start to drown again.

But now, at least, I know that if that does happen, I have it in me to survive.

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.

Miss Understood: Vibrant Trial

(Editor’s note:  Several weeks ago we were contacted by a sales representative for Neurovative Technologies, a Canadian manufacturer of medical devices that use vibration to relieve chronic pain. These “Vibrant” devices sell for about $300 each and, we were told, “have been able to decrease pain and stiffness and increase range of motion in 95% of our OA, RA and Fibromyalgia patients.” The company was invited and agreed to provide a Vibrant device for back pain at no cost to PNN columnist Arlene Grau for a test run. Arlene suffers from fibromylagia and rheumatoid arthritis.)

By Arlene Grau, Columnist

There are many people who suffer the same pain day in and day out with little to no relief from medication, acupuncture, medical devices, etc. My pain begins in my back and spreads throughout my body. Recently, I was asked to give a drug free and non-invasive device called Vibrant a try to see if it helped with some of the pain I was suffering from. I received the device that is designed for back pain management.

During my time using the device, which was about two weeks, I have found that there is no change in my pain level or relief for my back pain.

The device is recommended for use in 16 minute sessions.  It can be used as many times as you'd like during the day, however it is not recommended that anyone use it for an extended period of time all at once.

It is extremely easy to use. You just push the “on” button and it does all the work. It also comes with a charger and backpack for storing or carrying, which I thought was pretty neat.

The Vibrant device reminded me of a massage chair, but I kept wanting to raise the level of intensity and couldn't because it doesn't come with that feature.

It did however help relieve minor aches and pains related to everyday life. My husband even tried it and said that he found it to be relaxing.

I also have a TENS unit which was prescribed by my pain management doctor and I feel like I get a lot more relief from that than the Vibrant device. As far as being able to target my pain and getting deep down into the problem areas, I feel like the Vibrant device fell short.

It's possible that it's meant for smaller aches and pains, but as far as rheumatoid arthritis and fibromyalgia patients go, there really are no minor pains related to our diseases.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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

How I Use Exercise to Manage Chronic Pain

By Fred Kaeser, Guest Columnist

My dilemma may not be yours. I can only speak for myself. But when my intermittent severe pain became everyday severe pain, I felt I had a choice to make. Find a doctor that would prescribe me enough opioids everyday so that my horrible pain could be reduced considerably… or…decide that the risks of using opioids on a regular, constant basis outweigh the benefits.

When making this risk-benefit analysis, I needed to explore as best I could the empirical evidence on both sides of the opioid debate. Just as important, I needed to look at the evidence concerning alternative pain management strategies such as exercise, physical therapy, nutrition, yoga, mindfulness visualizations, and the like.

I am 63 years old and am in severe pain on an everyday basis. I have severe cervical spinal stenosis, multiple osteophytes impinging on my thecal cord, severe spondylosis, and multiple discs that have been severely compromised. I have osteoarthritis throughout my body. My hips have been replaced and one will need revision surgery fairly soon. My knees are shot. My lumbar spine is not as bad as my cervical, but multiple discs are herniated, the stenosis is in the moderate range.

I have crawled around on the floor many times for days and even weeks at a time since I was 25. I also have intermittent, but infrequent bouts of intercostal neuralgia, where it feels like the left side of my ribs are on fire. But without question, my cervical spine is the worst of them all.

      fred kaeser

I was determined to be an educated consumer in my quest to relieve pain, but time was of the essence. It’s brutal being in constant severe pain. It not only hurts, it’s exhausting. Fighting the hurt, trying to stay positive, trying to do your daily stuff, trying to be friendly, just trying to smile becomes harder and harder. .

I had done enough periodic trials of opioids to know several things. They work. But then at a certain point they don’t work as well. Even upping the dosage works for only so long. I can take an opioid for breakthrough pain or an extended release opioid, but the weird haze I’d get, the strange cloudy, foggy feelings I have, I never felt normal doing them.

I mean, is that what I want to feel like for years to come? I hate the pain, but the opioid cloud from any extended use I hate also. And the risks: tolerance, dependence, respiratory distress, sexual disruption, and constipation. That last one can be a bitch. I didn’t want to live in pain. but I didn’t want the risks and that overall crap feeling that opioids presented me. So the search for alternative pain therapies was on.

Let me first say I had to have the right attitude. “Stinkin-thinkin” is out, or as my meditation expert friend says, “If you “awful-ize” regularly you will feel awful.” I cannot emphasize enough the benefit of staying upbeat. I’m not stupid, I get it. You feel horrible, you feel like crap, you want to crawl out of your skin. But I have a choice; get swallowed up in negative thoughts and that is where I’ll stay, or stay as positive as I can and that is where I’ll stay. Not easy by any means, but it is the only means for me.

I was always athletic but I smoked. Smoked from 24 years of age to 56. That had to stop. When I had my second hip replacement I said I would quit right as I entered the hospital. I did and I could write a book on that fun trip.

I knew my diet would have to change. Didn’t want anymore extra weight and I knew I needed to increase my intake of foods that reduce inflammation. I love hot peppers, love those oily fish, those greens like spinach, kale, collard greens, those whole grains, and those almonds (but gotta watch the calories).

It took hard work to stop smoking and change my diet. And there was still a whole bunch more to come. I wanted to exercise more, I wanted to do my physical therapy exercises and stretches regularly, I wanted to give basic yoga posturing a try, I wanted to do some sort of meditation/positive visualizing practice.

I had read about all the benefits these could offer and I also knew it wouldn’t come quick. THIS IS THE HARD PART. I knew I would have to stick with it. I know too many people who say they’re going to make changes in their health status and do not stick with it. They’re in abundance after all those New Year’s resolutions every January, right? I’ve been one of them any number of times! It’s much easier to stop all the hard work and a whole lot easier to just take the pills.

But not this time. I knew that if my chosen alternative pain strategies were to work, I would have to be loyal to them and I would have to give them time. A lot of time, like 3-6 months of everyday, regular time. I have a family, I was working, I had all the stuff that comes with life, and now I had to fit a bunch more things in. I had to get up earlier than before, I had to spend an hour and half to two hours at night after work doing things I hadn’t before, and I had to fit these things into my weekends as well.

My Exercise Regimen

I had a YMCA membership and it’s amazing how many free or very low cost add-ons they provide. Yoga was free. Fairly low cost trainer sessions. My insurance covered a certain amount of physical therapy. A colleague-friend at work was a meditation expert. I get a lot of free senior citizen exercise and healthy activity benefits from the town I live in.

I started an exercise regimen that included cardiopulmonary exercise, weight training, and core exercise. I do an hour and half a day, 6 days a week. The myriad PT exercises and stretches I learned had to be done every day, 7 days a week as well. I don’t do all I know every time, but I usually spend about 20 minutes to a half hour on these.

The meditation/visualization I do is a form of guided imagery. Real easy to learn and real calming to do. I conjure peaceful, beautiful images for a 15 minute period in the morning and before bed I do 15 minutes of a mindfulness type experience where I am aware of positive thoughts, feelings, and images. I try to put my pain into a corner and focus on just the other things.

The yoga may give me the most benefits. I just do poses and stretches. I incorporate most of them in my daily workout routine and at times combine them with my PT work. All nothing real fancy, or too in-depth, but just enough of the basics to really help.

I lost count how many times I would bitch and complain in the beginning. How many times did I feel all this stuff was a waste? How many times would I curse them? How many times my pain hurt when I did them? How many times was my pain worse right after them? How many times did I want to give up? How many times did I want to just take the opioids? The answers: MANY!

A month went by…two months…three months…and I started to actually feel better. My pain was being mitigated. Six months and they worked even better. And now, almost 7 years later, they work better than ever. And my opioids? I am prescribed oxycodone, but I only take it every other day or every two days. I try to allocate myself no more than 10 pills a week.

Do I still have pain? Yep. Do the opioids help? Yep. In fact, when I take them they work as effectively as the first day I started taking them. I know I could easily do more and, considering the level of pain I have, they are easily warranted. But my pain is mitigated by my alternative pain management and my opioid use is minimized.

Just as important, there has been another benefit. The cervical spine surgery that I should be eligible for I don’t have to do because my functioning is normal. You don’t do this surgery unless your functionality suffers considerably.  Removing 2-3 discs, shaving down multiple osteophytes, and fusing 3-4 vertebras pose considerable post-op risks and perhaps even more pain. I’ve been told that my function is so good because of all the exercises I do, so no surgery for now.

Like I said, I can only speak for myself. But I have found a very effective balance to mitigating my pain through alternative pain management and the limited use of opioids. I still have pain every day but I manage it with a lot of hard work.

I know there are many people out there that must take opioids every day. And they should be provided with them. But I felt that I would be cheating myself if I didn’t do my best to mitigate my pain through alternative means.

I always have to be honest with myself. Am I doing all I can to ease my pain other than by taking opioid medication?

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He 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." Fred enjoys exercising, perennial gardens, and fishing.

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.

CDC: We Need Safer, More Effective Pain Relief

(Editor’s Note: Debra Houry is director of the CDC's National Center for Injury Prevention and Control, which is developing new opioid prescribing guidelines that the agency plans to adopt in January 2016. We have many questions about the guidelines and the manner in which they are being drafted, and asked for an interview with Dr. Houry. She declined, as did CDC Director Tom Frieden. Dr. Houry did offer to write a column about the guidelines for our readers and we agreed to publish it.)

By Debra Houry, MD, Guest Columnist

At CDC I see the numbers.  The numbers of people dying from an overdose of opioid pain medications.  And, many of these unintentional deaths were in patients taking medications for chronic pain.

But to me, it’s not about numbers.  It’s about the people.  I’m concerned about stories we’ve heard at CDC from people like Vanessa and Carl, who were both prescribed opioid pain medications after car crashes. Vanessa was 17 years old when she was prescribed opioids the first time, and within several years, she was abusing IV drugs and was afraid she was going to die with a needle sticking out of her arm. Carl became addicted quickly and suffered from withdrawal when he tried to stop. He became a drug dealer to get access to the drugs that would prevent the unbearable withdrawal symptoms caused by his opioid addiction. Thankfully both Vanessa and Carl got into treatment and have been in recovery for several years now.

As an ER doctor I’ve cared for people like Carl and Vanessa suffering from traumatic injuries or in chronic pain. I’ve also had to be the one to tell families that they lost a loved one to an overdose of prescription opioids.  I see the risks. It worries me when patients return because their opioid medications are no longer effective at relieving their pain, and they need larger and larger doses.  Although opioids are powerful drugs that are important to manage pain, they have serious risks, with multiple side effects and potential complications, some of which are deadly.

But I want patients for whom the benefits outweigh the risks, to be able to get these important pain medications. And, I need to be able to treat pain more safely and effectively so that people can have relief without the risk of abuse, overdose or death.

Since 1999, we’ve seen a dramatic increase in the amount of opioid pain medications prescribed in the U.S. and at the same time overdose deaths from these medications have quadrupled.  The evidence is becoming clearer that overprescribing these medications leads to more abuse and more overdose deaths. Guidelines that help doctors and other health care providers work with their patients to determine if and when opioid medications should be given as part of their overall pain management strategy need to be updated.  

Most of the existing guidelines have focused safety precautions on high-risk patients, and have recommended use of screening tools to identity patients who are at low risk for opioid abuse. However, opioids pose a risk to all patients, and currently available tools cannot rule out risk for abuse or other serious harm outside of end-of-life settings.  

We must find a better way to treat pain so that diseases, injuries or pain treatments themselves don’t stop people from leading full and active lives. That is why CDC is working with doctors, other health care providers, partners, and patients on urgently needed guidelines based on the most current facts about safer and effective pain treatment. In a national health crisis like this one, our priorities are clear. First, take swift action to protect and save lives. Second, use world class science and proven processes to determine further improvements. And third, use the facts to prevent this situation from happening in the future.

The upcoming CDC guidelines will provide recommendations on providing safer care for all patients, not just high-risk patients. The guidelines will also incorporate recent evidence about risks related to medication dose and encourage use of recent technological advances, such as state prescription drug monitoring programs.

The guidelines are intended to help providers choose the most effective treatment options for their patients and improve their patients’ quality of life. Currently, 44 Americans die each day as a result of prescription opioid overdose. By providing the tools to help physicians make informed prescribing decisions, we can improve prescribing and help prevent deaths from prescription opioid overdose.

Thank you to the many Pain News Network readers who took the time to share your thoughts with us.  As we move forward, we will continue to look for opportunities to work with you on the critical issue of safer, effective pain management.

Debra Houry, MD, is a former emergency room physician and professor at Emory University School of Medicine in Atlanta. In 2014, she was named director of the National Center for Injury Prevention and Control at the Centers for Disease Control and Prevention.

Dr. Houry can be emailed at vjz7@cdc.gov and reached on Twitter at @DebHouryCDC.

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.

For a look at the first draft of the CDC’s opioid prescribing guidelines, click here.