Opinion: The Voice of the Chronic Pain Patient Is Not Being Heard

Opinion: The Voice of the Chronic Pain Patient Is Not Being Heard

Editor’s Note: Gary Snook lives in Lolo, Montana and is 100% disabled with lumbar adhesive arachnoiditis. He used to own a specialty contracting business that worked on commercial construction.

Gary SnookWe are amazed at the sheer ignorance of uncaring and uninformed health care providers who have never experienced intractable, unrelenting, 24/7 pain: Pain that shatters your life, steals your career sometimes along with spouses and family, pain that definitely alters, if not destroys hopes and dreams – and tragically for some who could no longer cope with the magnitude of loss and unimaginable pain – chose to end their very lives. The uninformed public often heaps all pain patients into one giant category, for which they are not qualified to assess.

Many intractable pain conditions do not respond to rehabilitation or further intervention. How can the general public, or even some uncaring physicians, possibly judge patients when there are limited tools to measure pain?

We continue to be amazed by ignorance which includes medical professionals. The foundational problem is that the methods to evaluate and measure pain are lacking, and the 1 to 10 pain scale rating (and smiley face pain scale) needs to be replaced with methods that are more meaningful, another discussion in itself.

The Institute of Medicine estimates that 100 million Americans are dealing with chronic pain, and we think it is time that pain is given federal and state resources as this is affecting families, communities – and the Nation.

The overwhelming majority of pain patients are NOT addicts/abusers. Instead, many are legitimate chronic pain patients “dependent” on medication, which is much different than addiction.

However, due to government bureaucracy intervening to weed out the small percentage of true addicts and abusers, serious harm is being done. As a result, we have a lack of reasonable approaches leaving chronic/intractable pain patients misunderstood and shunned. Practitioners who treat pain patients should focus on the ethical treatment of their patients, but unfortunately, treating pain patients without billing for procedures does not pay out too well.

Both patients and honorable doctors alike are operating in a constant state of fear and panic as patients fear for their lives, and physicians fear losing their licenses or being shut down by the DEA.

The distinguished Dr. Lynn Webster, Past President for the American Academy of Pain Medicine, writes in his article entitled, “DEA Inflicts Harm On Chronic Pain Patients”, “Controlling the abuse and overuse of pain killing drugs is necessary to keep patients safe, but the importance of decreasing drug abuse does not outweigh the needs of millions of people who suffer from chronic and depleting pain.”

Who’s ultimately suffering? Over 100 million chronic pain patients! In the meantime, many interventional pain physicians (IPPs) have capitalized on this windfall opportunity by utilizing every means available to take advantage of the current system of chaos and fear.  Many IPPs have successfully used their political influence to lobby Congress as well as bring about higher reimbursements for their procedures from Medicare/Medicaid (CMS), while implementing lucrative “alternative treatments” all under the guise of “treating the chronic pain patient”.

Courageous and compassionate doctors, like Dr. Mark Ibsen of Helena, expose themselves to more scrutiny as they continue to treat discarded pain patients who have been abandoned by their own doctors, especially “pain” physicians, many who often seek maximum reimbursement.

One study published in the Journal of Neurosurgery: Spine found the costs per patient for each Spinal Cord Stimulator (SCS) to be $32,882 under Medicare and $57,896 under Blue Cross Blue Shield, with annual maintenance per patient of $5,071- $21,390, depending on whether complications are present, which is often the case.

The “standard of care” for the treatment of pain is often established by CMS/Medicare reimbursement schedules, and currently there are over 9 million epidural steroid injections (ESI’s) administered each year and they typically cost approximately $2000 per injection. Federal Work Comp will usually pay top dollar around $2000 to $2500 per injection. When combined with SCSs, intrathecal pain pumps, and other procedures, interventional pain has become a lucrative multi-billion dollar industry capitalizing on desperate people.

Pain patients need to understand that interventional pain societies are powerful lobby organizations. They have influenced high levels of government (FDA, CMS) and manipulated the practice of medicine and the “standard of care” without appropriate clinical trials and studies founded on improper data collection and irresponsible, inaccurate analyses. To make matters worse, the adverse event reporting system with the FDA is broken.

What is the more unethical treatment? The doctor who comes up with multiple thousands of dollars in testing, invasive procedures and excessive, unreliable urine drug screens? In addition to holding their pain patients hostage after mandating that they sign a “contract” for treatment that stipulates they must agree to abide by ALL treatment recommendations or else be potentially dismissed from care for non-compliance when they question, ask for a second doctors opinion or have misgivings about a dangerous and or expensive procedure like an epidural steroid injection, pain pump or TENS unit  that has been “recommended”  as a part of their treatment plan? Or is it the local doctor who reasonably discusses treatment plans, goals and options with his/her patient based on what’s appropriate and affordable, guided by each patient’s specific disease or injury, financial situation, and actual concerns?

“To ensure patients have access to their necessary medicine”… In our experience, what is happening instead is a complete paradigm shift in treating the chronic pain patient that says in many IPPs clinics: no pain medicine if it is an opioid; We’ve decided FOR YOU that our “alternative treatments” are the best available options, regardless of whether they are affordable, have been proven effective, or are even safe – and lastly, regardless of whether they go against the “Gold Standard” treatment template for the last three decades by the World Health Organization (WHO).

As one of the foremost respected pain practitioners in our country having treated pain patients for over forty years, consulted for the FDA & DEA, Dr. Forest Tennant, MD, DrPH, writes in a recent article, “Editor’s Memo: The WHO Pain Treatment 3-Step Ladder Still The Gold Standard for Pain Management”… “To me, one development that has obscured good pain treatment perhaps more than anything else is the wide-scale promulgation of opioid treatment guidelines, laws, and regulations”….”The WHO 3-step ladder remains the pain treatment standard. It is not a specific opioid guideline but a template that provides a practical roadmap for pain treatment. Its essence has endured, simply because it makes practical, clinical sense, and provides effective, humanitarian care…” “A key element to the WHO 3-step ladder is that opioids are to be added to, not substituted for, an existing regimen of non-opioid pharmacologic agents and adjuvants.”

In this new era of pain management, the chronic pain patient has no rights in many states, and now it appears they have no recourse against discrimination. The DEA, FDA and CMS are influencing opioid prescribing, not based on decades of proven medicine. Pain patients are now subjected to coercion and abuse by “pain” physicians which results in increased pain, additional injuries from invasive procedures, mental anguish, and financial hardship. The Voice of the chronic pain patient continues to be misunderstood and misrepresented.

Authored by: Gary Snook

There are 27 comments for this article
  1. Celia at 6:46 pm

    I have chronic pain and am also running into the cvs issue of we can not fill until 2 days before rule. I have read many of the comments written by other chronic pain sufferers and I noticed that I hadn’t seen my particular problem addressed by any that I read. I am widowed and the sole provider of my household. I work,I have a mortgage and all of the other bills that have to be paid each month. My medication is in the form of a patch . Occasionally during the month, especially in the summer or if I have a job that requires hours of bending ,walking ,moving I will sweat. When this happens the patch will start to loosen and the medication is not absorbed properly. In the past when I could fill my prescription 5 days early I would be able to replace the unstuck one. I no longer have this option. I literally have to try to plan my jobs according to when I change the patch. I have had to cancel jobs. I have lost income due to this.I am not stockpiling my medication. I feel as though I am being held hostage every month or looked at and treated unkindly when I try to explain my reason for needing my prescription filled “early”.I also would like to add that my insurance company allows a 5 day before fill. It is cvs that doesn’t . Also the vacation
    / travel comments made by the pharmacists that seem to think there is a cvs or pharmacy around every corner. Not necessarily. I have a daughter who lives in South America I went to visit her 2 years ago it was a nightmare dealing with cvs to get my parscription filled to have an ample amount for the trip. Once again my doctor nor my insurance company was the problem. It was the pharmacy.Eventually I was able to get it done but it took numerous days and phone calls and letters. I have been on this prescription for several years and I almost had to cancel going to see my daughter over this. I also would like to add that I can’t change the type of work I do. I am 54 years old ,it is all I know and I worked very hard to build my own business and get to the level of income that I am at now. I just wish that people would realize that a lot of others that suffer as I do do not get ” high” off of our medication, that we take it to be able to function,to be able to work,provide for our families, and have some quality of life.

  2. Cathy Kooper at 10:12 am

    There are several reasons the “Voice of the Chronic Pain Patient is Not being Heard.” The most obvious is the “Big Money” in Health Care. This is evident in every aspect of Health care, not just the CP aspect. Another reason is the Media portrayal of Chronic Pain, Sick people, and people who don’t have money or resources. Chronic Pain Patients are an easy target. The “Drug War” has justified the continued intrusion into the lives and Doctor relationships for CP patients. People generally want and easy target or explanation for complex Social problems like Drug Addiction. The idea of chronic pain is unthinkable for many people, it is just easier to believe they are “Mentally Ill” Malingerers or Criminals. Instead of understanding the complex nature of things people like simple answers. People that have been through major physical trauma, are “fixed up” in the current Health care System, should be “Better”. The physical damage is evident in some people, but the pain is invisible. So it is easy to dismiss.
    Much of the Health Care Industry does not on “Evidence Based” medicine, much of it is Trial and Error,, there is no Data on many issues, it is just not collected. Once again it is not in the interest of profit to have real Data. When there is Data is often skewed, misinterpreted, and ignored. Medicine is a field open to opinion. The public is often mislead by the Media interpretation of Chronic Pain, we only read about it in conjunction with sensationalized stories of “Drug Addiction”, Hillbilly Heroin, and the failed “Drug War.
    The inclusion of Chronic Pain in the DSMV, the Manual for Mental Disorders, gives another dismiss, and undermine the chronic Pain patient, it is now a “Mental Disorder.” Somehow this justifies ignoring and undermining people with Chronic Pain. This gives a justification for denying treatment, it is now a vague “Mental Disorder”. The Media only reports on the death and devastation brought about by drugs, so now denying chronic pain patients medications is now morally justified, and it is also financially advantageous for the Medical and Insurance Industry. It is now “for their own good.” They never report on how people are able to function due to their medications, only the negative stories. Pain is not easily quantified, so allowing the Medical Industry to ignore it give them another easy out and insulates against Malpractice.
    Chronic Pain patients have been effectively silenced. There is easy dismissal of Mentally Ill, the drug addicts, or just “negative’ people. If we speak up we are labeled. Too many people just label us. Apparently just speaking up is enough to be targeted. To many of us, just allowing others to know we are dealing with these issues, discredits us and make us look crazy. It would affect our jobs and relationships, if we have any left. We are living in the world of “Orwellian Doublespeak”. The public looks for an easy scapegoat. The money behind the Medical Industry gives them a much better and well funded voice than any of us.

  3. john s at 2:12 pm

    This is a question that I hope someone can answer.

    We have in this country 100 million people that suffer from chronic pain ( about 30% ) of that 30% how many patients require opiates on a daily basis to keep their pain manageable ?

    To. Mr. Snook, thank you for sharing your ” life ” with us. A lot of know how you feel and yet none of us know how you feel. We are all different and what we have in common is ” pain ” and the stories are each in their own way a window that allows us to view how pain has changed your world.

    Thank you,

    John S

  4. john s at 8:38 pm

    100 million people that suffer from chronic pain / how can our voice not be heard ? Lets just say that they do hear us and our doctors but the topic is TOXIC and our government has made up its mind: opiates are bad and people die when they take a toxic amount so lets get rid of them.

    A few months ago there was a petition to ban Oxycontin on the internet. it was started by a mother after her son died from an accidental overdose of the medication. After Phillip Seymour Hoffman died from his accidental overdose the push to rid the U.S. of pain meds was put into high gear by the media and the government. The V.A was told they were prescribing too many pain meds, so in true bureaucratic fashion they just stopped and as a result the suicide rate has jumped dramatically. Accidental Overdose is a term created just recently to shift the blame from the person back to the medication or drug. A doctor at the VA told me ” it only takes 1 pill to kill a person – referring to pain medication.

    Opiate pain medication gave me my life back and now my fear is they will soon take the medication away. The CDC recently made public that they want opiate use tabled and used for non cancer patients or in rare cases only a small amount can be prescribed for severe pain.

    In 8 years my dose has not increased but my condition is much worse. At 57 I’m looking at bowel and bladder problems due to the nerve damage at several levels. Last week I fell 3 times in one day due to the atrophy in my legs – the pain is acute, chronic and progressive. According to my doctor I have cancer like pain without the cancer, making my dose very high but for me its less harmful than a steady dose of NSAIDS.

    100 MILLION of us / the question now is: how do we make them hear us ? With our numbers they couldn’t ignore us if we all had a say and we do.

    Thank you,

    John S

  5. cry baby at 9:16 pm

    How can this problem be fixed ? Isn’t it always about the money ? and better yet it’s about elections so why aren’t we forming a lobby group to go after whomever it is that can change this problem?

  6. Cynthia Oeser at 10:32 pm

    Mr.Snook, thank you so much for your writing…and for writing it. I saw it mentioned in “pain pathways” magazine and i looked it up. it’s a wonderful article. thanks, cindy – chronic pain sufferer, 7 years. age 68

  7. Renee M at 10:49 am

    I have been in pain with Central Pain Syndrome which is in both my legs. Any movement like sitting or walking or standing worsens my pain. I had a wonderful caring Pain Doctor here in WA, who tried every kind of injection, vitamins, new research, prolotheraphy, naturepaths as well as having me see numerous other doctors for their intake on helping me with this disabling, throbbing, burning pain, to no avail….The only thing we found to help my chronic pain of over 14 years, is cymbalta, vitamin D3, and of course pain medications. I am allergic to lyrica, codine, and morphine, so that takes off a lot of different kinds of medications to use on me. He was harassed by a person with no medical back round until he retired from his pain management office. What a shame! I have talked to many of his patients who all told me that he gave them back their lives. I am in a lot of pain since the new pain medication law here in WA with no more than 120mgs of any kind of pain medication. Then I go see pain doctors who tell me to just get off the meds and go swimming and walking and get my life back!!!!!!! I guess here in WA they do not hear their patients… So far no luck for me, my blood pressure even with taking blood pressure medications seems to be at a 167/94 for my normal, and I just don’t want to know how high it gets when my pain is on the pain scale of 9, which by the way is several times a day. I am sorry about my spelling but as you all know that when you are in pain, it is so hard to concentrate. So again Gary, thank you for speaking up for us and you have my permission to use my name to all the idiots out their who think they are helping us.

  8. Roy at 10:08 am

    I’ve been a chronic pain patient for almost 30 years. During the last 15 I was treated by pain manager doctors prescribing opiates.

    I’ve always been to legitimate, respected pain doctors, including Dr Tennant for a few years. I’ve had one of my doctors go to jail; one die suddenly; and all of the others received state or federal harassment to the point where all but one stopped treating pain patients.

    It pains and angers me to write this but it’s over. Done. The federal government has essentially criminalized prescribing opiates. The way that U.S. DOJ attorneys are able to successfully prosecute pain doctors defies explanation. To me it’s like being in the Twilight Zone. If a pain doctor has 300 patients, all it takes is ONE bad apple who diverts some or all of his or her meds to result in the doctors career, family and life being destroyed. And that doesn’t include the health care crisis that is caused when 299 opiate dependent pain patients suddenly lose their doctor. How is the doctor supposed to police each and every one of his patients? The doctor has no way of knowing what any of his patients are doing once they leave the doctors office. All the doctor can do is due diligence and test to make sure the patient is taking his prescribed meds. But that’s not enough. And then you have angry family members of pain patients – who are ignorant of the good uses of opiates and who don’t know the diff between dependence and addiction – calling state medical boards and reporting their family members doctors. It’s absurd.

    So right now the Feds are mopping up the remaining pain doctors to help stop the source of a few hillbillies’ addictions. But what happens after that? I think they look at their lists of opiate prescribers and start taking out the next highest prescribers. Probably primary care doctors. Orthopedics. Neurologists. And it will go on and on.

    Someone in a comment mentioned we all have to stand up. Well I’ve stood up. I’ve written more letters to presidents, senators and representatives than I can count. I even went to Washington and met with my representative and senator. The problem is unless they are on the right committees they can and will do nothing. And lots of these politicians have kids or wives who had surgery or a broken bone and subsequently abused rx pain meds. They don’t understand that people like me never once abused my meds. To some of them these drugs are evil. And they can’t face that something’s broken in their family members brain that made them abuse these meds.

    I don’t see this ever getting better. The DEA is a machine. It’s an agency that’s failed its primary mission in stopping drugs being smuggled into our country. So it’s redefined its mission. So much easier to find your next target by looking in the phone book for pain doctor than it is to infiltrate the drug cartels.

    So I hate to say it but I recommend that all of you have a fall back plan. Start tapering now. Do research for other legitimate pain doctors too. So you have someone else’s name in case a helicopter with DEA commandos lands in your pain doctors parking lot and makes all the pain patients lie on the ground at gunpoint.

    Good luck to you all.

  9. Susan Fantini at 3:49 am

    Gary, excellent article. I’ve been an RN for 40 years. I worked in a Neurosurgical unit. After severe cervical stenosis involving C2 through C6. I had immediate surgery with about eight lbs. of hardware inserted. After a couple of months I was involved in a MVA in which I was the passenger (as of course I wasn’t driving yet) and was T-boned on my side. I had been planning to return to work six months after initial surgery. This happened month two. Well, career ruined, my life was severely effected forever. Another surgery to try to correct what was done to my neck from the accident was unsuccessful. After several months of attempted pain control, I was put on Methadone. This was five years ago. Up until two weeks ago I was taking 150 mg. of Methadone daily. Two weeks ago my PCP decided to send me to a pain clinic which was expected and the first visit they took me off my Methadone-cold turkey. “There won’t be any withdraw because we’re replacing an opioid with another opioid.” They put me on 25mcg Fentanyl patch. No withdraw? This is now day 14 of withdraw. I am suffering from severe anxiety, severe restless leg syndrome, vomiting, diarrhea, and of course severe pain. They have decided for me because they must know me better than I know myself. This is pure mismanagement. I now am back to being dependent on my husband after four years of independence. They won’t even listen to me when I describe my now level 10 pain. Why did they do this to me? I sometimes think death would be better than this. No, I’m no way suicidal. Too much to live for. I wish someone would listen to me and hear what I’m saying. I need help with the pain. The withdraw symptoms I can live with as I know it will be over someday, but my pain will last forever. Thank you Gary for this well-written article.

  10. Lotacats at 9:31 pm

    That is so scary. I went thru the nightmare trying to find out why the pain and why my life was coming unglued. Some of the clinic docs tried to diagnose and some in my book were criminal. I was ignorant of these things then but after I got my first computer discovered forums and found I was not alone. I won my disability and finally got my old doc back who has done nothing but work hand in hand with me and we made real progress.. I ended up in urgent care for what turned out to be “Under treated pain”….dangerously high blood pressure and pvc’s -cardiac irregularity….felt like break dancing in my chest. I was surprised that pain cause that heart thing…my normal baby blood pressure was now over 200/120….I had no idea the body could react like that. To those whoever say…”pain never killed anyone.” Punch their lights out. I’ve had time to talk to docs and about chronic pain killing folks like me.. They agree 100%….pain kills. I thank God for my understanding doctor. That urgent care that I had to see because of awful symptoms diagnosed me with under treated pain and gave me oxy-like Percoset and then to see my doc again. I took two and the blood pressure and cardiac irregularities were back to normal within about 90 minutes. We were using Tylenol with codeine at the time so we put our heads together and started MSContin to go with the t3’s…my miracle drug. It’s only opiates can help. Something to do with an opiate receptor that killed the “Beast” by blocking the nerve signal.

    Nothing else will. Since then I’ve been diagnosed with fibromyalgia and spinal stenosis Osteo….all tests and imaging verified all of my complaints. If I had not my caring doctor to turn to after getting the medicare I may well not be writing this. The attacks from the “Beast” produced pain so intense for 24 hours duration was a complete nightmare. It put me on disability.

    Sorry for going on like this but patients written off as drug seekers may well end up dead. I have no choice that opiate meds must be used. I am soooo responsible with my meds…my doc knows it and I’m so grateful to him. The war on legal opiates will kill people….those with pain levels impossible to live with and literally screwing with your whole body. I’m scared to death of these people who make rules about something they simply don’t understand. Some people that need to feed an opiate receptor….bless that effective and side effect free MSContin. No more beast attacks…None of these so called pain med alternatives would save me…the rule makers would not get it.

    They flinch and see only the maligned drug as evil and think it must be stomped out…driving honest good living victims of pain to illegal drugs.

    Leave our meds alone. You people who jump to wrong conclusions and make dangerous rules with our health and very lives. About opiates not working after a time and causing more pain….BS! I’ve been a long time on these meds and they do well. Who thought that crap up has some kind of agenda. They work. It’s between me and my doc.

    This is more the war on some unsuspecting pain person looking for help only to be treated like a criminal, I never ever asked for pain meds. Not once.

  11. Mark Ibsen at 9:01 pm

    Well we saw over 40 patients today. And six of those patients were from out of town. They are struggling: with Pain, dysfunction, humiliation.
    From towns that have pain clinics.
    Where they believe that there’s no proof that ongoing treatment of pain with opiate pain relievers is justified or proven. Like a policy.
    Of course patients have been on pain pills for 10 or 15 years are now being told they can’t have any-and there’s no evidence in favor of taking people off of opiates either!
    What a crazy rabbit hole we have created.

  12. John S at 6:28 pm

    With today’s political climate / anti opiate / there isn’t now or in the near future a candidate willing to risk going against the current mindset.

    Voting a pro opiate person into office could take too long and in the end it’s just not the answer.

    Only when the truth is heard will things change. When each one of us is willing speak out and speak up about how we are treated only then will any change be possible.

    Thanks,

    John S

  13. Jon M at 3:50 pm

    Dear Gary,
    You get an “attaboy” for the article!! Very well done! Many thanks for the countless hours of research and writing you do on OUR BEHALF.

    I am “Chronic Pain” patient for almost 10 years now with Adhesive Arachnoiditis, and Rheumatoid Arthritis. I have had to many back surgeries in every attempt to get better and back to work. My last ESI injection for pain control left me with Chemically Induced Spinal Meningitis (a near death experience). These conditions combined with the initial spinal injury have left me opioid dependent. I am blessed to have competent physicians monitoring my care.

    There is no way I could survive for very long without the continuation of the long-term opioid care I am receiving. My heart goes out to those who have to continually struggle to receive HUMANE treatment for chronic pain. Thanks Again Gary Snook!!

    Jon McHann
    Co-Founder
    LWA http://www.lifewitharachnoiditis.com

  14. One Ofem at 2:27 pm

    One answer seems obvious but was not included. If 100 million people voted for almost anything, it would pass or the candidate would be elected by a landslide… barely 20% of eligible voters vote which falls way short of the 100 million.

    You say ” The DEA, FDA and CMS are influencing opioid prescribing, not based on decades of proven medicine. Pain patients are now subjected to coercion and abuse by “pain” physicians which results in increased pain, additional injuries from invasive procedures, mental anguish, and financial hardship. The Voice of the chronic pain patient continues to be misunderstood and misrepresented.”

    If that’s the source of the problem, vote for candidates that will fix the problem?

  15. Terri Anderson at 10:40 am

    Big pharmaceutical companies thrive off of repeat business and epidural steroid injections are the biggest scam going. The FDA is one of the most corrupt government agencies, and their advisory panel members are mostly represented by industry reps or doctors who profit from drugs and procedures. The 2014 warning on corticosteroids used for back pain does not mention arachnoiditis as a risk of complication, because no one would in their right mind would risk life-long intractable pain for a temporary benefit. Here is the information on the FDA website for patients, and it is missing the big bad Aword: http://www.fda.gov/Drugs/DrugSafety/ucm394280.htm Even Pfizer acknowledges the potential complication of arachnoiditis in their NZ datasheet.

    I was thinking about the Declaration of Independence this weekend and the part about the long train of abuses. We have reached that point again in our history and the FDA is one of those powerful and corrupted institutions that needs to be overhauled from top to bottom. Thanks Gary for your dedication to warn and help those who suffer this terrible affliction.

  16. Ingrid H. at 9:28 am

    Dear Gary,
    This is so well stated!!! It is my personal belief that IPP medicine will be viewed in the future as the 21st century equivalent to blood letting. Just as barbaric and dangerous. This article needs to get out to the media! People are being damaged daily and when they are , they are dumped from these doctor’s practices.
    My son almost died from severe pain after one of these doctors hit a nerve in his thoracic spine during an injection, and then dropped him as a patient. The next “pain specialist” did more injections and then told him he would just have to “live with the pain”. Within three months his adrenals and pituitary had crashed and he was at death’s door.
    Thankfully we found a wonderful Intractable Pain specialist who along with hormone testing , prescribed the proper analgesics and saved his life.
    Thank you for writing this, and again, it needs to be in the media!

  17. Donna Corley at 8:39 am

    In 2009, I had a bad fall, and landed hard on my tailbone. Two weeks later, the pain had become unbearable in my thoracic and lumbar area that I could not stand, sit, or walk without massive pain. I made an appointment to see my Primary Physician in which she ordered an MRI. A few day’s later the nurse called and told me I had Tarlov Cyst Disease. I continued to work, but the pain progressed, and so did my symptoms.

    As my symptoms increased, I began to research for the symptoms I was having like, burning down my spine, down through my hips, all the way down both legs into feet, the sensation of bugs crawling on my legs, and walking on broken glass when I would try to walk. In 2011, I was forced to quit my job, and file for disability, because the pain had became so bad that I could no longer work. In 2013, a good friend suggested I send my MRI’s to a well renowned doctor who has researched Arachnoiditis for over 20 years, because my symptoms were closer to Arachnoiditis than Tarlov Cyst Disease. I sent him my MRI’s, and 5 day’s later I received the call confirming I indeed have Adhesive Arachnoiditis. The cause was from a car wreck in 1989, when I broke 3 vertebrates in mid thoracic. I was in the hospital for 8 day’s, and was never told this had happened. Not only was it in my thoracic, but also in my lumbar, from two epidurals in 1992 & 1995 with the birth of my 2 boys. Again, I was never notified that my spinal cord had been punctured during both injections.

    I was diagnosed in March 2015, with Chronic Regional Pain Syndrome (CRPS/RSD).

    My life will never be the same again. I can not drive anymore because I can not sit for long. I sleep 3-4 hours a night because the pain. Most of my days are spent laying down, or in my wheel chair. I have to lay down every 2-3 hours to help CSF (cerebral spinal fluid) better flow to my brain because of the scar tissue inside my spinal cord canal that hinders the circulation of CSF flow in my spine.

    I have lived 26 years with Adhesive Arachnoiditis, and it has taken me 24 years to be diagnosed with Adhesive Arachnoiditis.

  18. DRMINDY at 7:49 am

    Excellent article Gary! With 100 million chronic pain patients, which is nearly 1/3 of the entire American population, it would seem that nearly every family must be affected by pain in some way? Either someone in the their family own family is suffering, they care for someone, or they have a relative who is! Chronic pain is larger than cancer, heart disease and diabetes combined! It is way past time that medical and now also judicial and legislative professionals collaborate with the chronic pain patients so their voices ARE heard as it is very clear the current system is NOT working but causing further harm to the patients and causing serious stress to an already overburdening Medicare/Medicaid system on the brink of collapse with the baby boomers continuing to enter the system in never before seen record numbers. This problem will only continue to grow out of control in the next decade. Invasive procedures by the “IPP’s” are obviously not the answer as they do not offer long-term success rates and cost more than the average insurer, CMS, and patient can possibly afford – not to mention, in the research I’ve seen, they do not prove effective for the overwhelming majority of pain patients, and have shown numerous complications over their long history. It’s long past time for an open dialogue with realistic goals and credible evidence-based solutions without the fear of recrimination from government agencies. Thank you Gary for your efforts in getting this information out to the public!

  19. ginbug at 4:34 am

    FINALLY someone sees & is speaking about what I have been trying to make people aware of for years!! I am working hard to get an awareness campaign going for this very reason that I am calling, “suffering of silence” #sos on twitter. Our voices will only ever be heard if we come together & combine our voices into 1 loud & booming roar that they will not be able to ignore!!! I also have a facebook page called criminally inpain that I made to help not only all chronic pain patients come together, but to encourage people from all sides of this major problems in hope of finding a REAL solution!
    We need patients, docs, pharms, law enforcement, & anyone else that have been effected by chronic pain, mistreatment, addiction, etc..
    REMEMBER ALL CHANGE BEGINS W/ 1 PERSON STANDING UP & SAYING< "ENOUGH"!!!
    THANK YOU Gary for this very well worded piece & please keeping writing & sharing!! Would LOVE to have you post on criminally inpain and/or tweet using #sos
    Actually everyone is welcome!!

  20. marty at 4:33 am

    I worked for many years with back and hip pain. What was I to do. My husband died and I had to raise the kids alone. 3 years ago when i lost my job I decided , ok maybe it’s time for a hip injection. Mistake. When I went to get off the table I could barely stand and for the next year and a half I cried every day from the pain that left me unable to walk. I was shuffled between doctors all of the saying there was nothing wrong and had MRI’s that each one said something different. By this time I had very few options with doctors as you mention medicare and they run. Finally in one of my back in forth between doctors I ended up with a new doctor in town and after an X-Ray she said I needed a total hip replacement immediately which I had done and thank the Lord that pain in my hip joint in my groin that kept me bed ridden was finally gone. Only problem was that my back was still so bad from the OA that I still have to use a walker and very rarely am able to get out of the house. I gave up on seeing my pain doctor as the only thing he ever did was give me injections that did nothing and kept prescribing more and more drugs that I knew I couldn’t take. I am only seeing my primary now who has much more compassion than any of the pain doctors who thinks patches are the miracles. I am still taking Vicodin every 4 hours just to dull the pain enough to be able to make it around my own home. On a good day my son will take me out to lunch. The vicodin may not take the pain away but it makes it semi bearable some days. I am not a addict but I am dependent on it. I read some of the stories about people being taken off them or not being able to get them from the pharmacies and it makes me cringe. I am to the point that if this happened to me I would probably end up killing myself because if you had any idea of the pain I have gone thru you would understand. You can not do that to people that need them so bad. I am 63 years old and have worked my ass off my whole life and I don’t feel like I deserve to have to suffer needlessly any more. I hate taking them but what else am I to do when I have been told will have to suck it up because there is nothing more they can do for me

  21. denise at 12:08 am

    THANK YOU THANK YOU THANK YOU!!! everything you said i have thought many many times…i have suffered for more than 12yrs with going to different pain management clinics..I find that they are just givin me shot after shot ater shot….those seems to bering in good money …i have had the tens machine…i had the spinal stimulator implant but had it removed 8yrs later due to it hurt the way they had it in..NO ONE wiill give me a pain pump those appearently are only for cancer patients…and when i have went for 2nd opinions i had to carefully tell the dr because they act like i did something wrong…i wanted an MRI so i could sent ti to the spinal center for possible spine surgery to rid me of my issues…but my dr wont do that..appearanty my insurance is only for what they want! ugh i am nearing the end of my rope seriously..these doctors dont know that they are making my life so much harder than it was and every dayum day i think of ending it…everyday….and then i dont i dont k now wy but one day i will end it…mostly because i simply hurt soooo bad i just cant stand it anymore!

  22. John S at 9:50 pm

    This article gets to the meat of the problem, money and government.

    Yes many people do become addicts that abuse their medication but 90% of us don’t and that’s a strong number.

    After a work injury to my back and eleven operations my pain is no longer treatable with the basic office modalities. So I rely on strong opiate pain medicine that works great. Take the meds away and I will surely wither and die very quickly.

    As with most chronic pain sufferers I have tried everything. It’s only natural to seek out anything that might work; we have nothing to lose. In my case it’s the medication that has given life back to me.

    I don’t drink alcohol and I take my medicine as directed. My doctor has now been treating me for over 13 years so he has no problem giving me what I need and that need has not increased since 2008 or 09 even though my condition is much worse and will continue to get more severe.

    So Mr DEA- FDA and insurance companies; let my doctor do his job and stay out of my doctors way.

    The WAR ON DRUGS does not apply to pain patients so take your troops and put them back where they belong – sniffing bags at the airport. Soon, the day will come when we will have had enough abuse and 100 Million of us will take a stand and put a stop to this madness.

    Thank you,

    John S

    ps – the media and government has done a great job convincing people that pain meds are no longer of any value and only cause more pain. What a sad and harmful situation.

  23. Dustin Parker at 9:30 pm

    Hello Gary,
    I met you a while back at Dr’s office and you gave me your email which I responded to. I hope to hear from you soon. Just want to say that you have done a great job on this aritical.

    Thanks for advocating for suffering pain patients,
    Dustin

  24. David S. at 5:14 pm

    Your reference to growth in the industry of alternative pain care is spot on. Here in Washington State I think that politicians and pain clinic doctors together passed House Bill 2876 in 2011 in a misguided effort to reduce opioid drug abuse and increase pain clinic profits. Oftentimes, just look at where the money goes when a law is passed especially in a quick manic fashion. Pain patience who have tried everything but to no avail often only get relief from opioids. Hydrocodone has practically been outlawed here for chronic pain. Now pain clinics can get insurance companies to pay for more expensive alternative treatments since that is the only thing available. Also, I believe that this was also the reason why they legalized medical marijuana since abuse of Marijuana is not tracked and published like opioids are. Marijuana does not work to reduce pain for everyone however. Thanks for fighting the good fight for us!

  25. Lauri at 4:07 pm

    Thank you, Gary, for all of your words! Thank you for speaking the truth for all of us. I have shared this on facebook and will continue to do so.

  26. Steve M at 12:47 pm

    Thanks to the author for so clearly and concisely articulating the problem.