A Pained Life: Who Benefits From the Opioid Crisis?

By Carol Levy, PNN Columnist

For the first time in almost 40 years, I have to fight to get my codeine prescription filled.

I understand intellectually what so many pain patients have said about the frustration, upset and upheaval they experience when a pharmacist refuses to fill their prescription or insurance refuses to pay for it. Or harder still, what they go through having their opioid medications cut down or stopped completely.

But I did not understand the emotional side of it until it happened to me.

The insurance company refused to pay for my codeine prescription. They had no problem filling it for the last many, many years but suddenly they need "authorization" from the doctor. How does that make sense? Writing the prescription was authorizing. Why do they need to add a second permission?

It is now over three weeks. The pharmacist tells me they have contacted the doctor's office three times: "You need to call them and find out why they haven't responded."

When I call the office, they tell me the pharmacy never sent over the forms they need.

So I call the pharmacy back. They recite a fax number for the doctor’s office. It is not the right number. I give them the number the doctor's office just gave me. “We'll try it again right now,” she says.

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I keep my fingers crossed and hope I don't run out of pills before it is resolved — if it is resolved.

The pharmacy clerk and I talked the day the prescription was refused by the insurance company. I was venting my frustration over not being able to get the prescription filled, especially because it is the same prescription I have had for years, one that was always covered by my insurance.

To my surprise she says: "It is not just narcotics. Many insurance companies are refusing to cover or making unwarranted demands, requiring many more hoops to jump through. They have refused to cover certain creams and hormones, other prescriptions, non-narcotics that are routinely given and, until now, paid for by the insurance companies."

This is appalling. And makes no sense.  

But then I start thinking about it and was struck by a thought: Yes, there is an opioid crisis. And we’ve all heard the reasons they blamed patients for the “crisis.”  But I think there may be another factor at play: the profit margin.

After all, if we pay insurance premiums but they refuse to pay for our medication -- forcing some folks to pay cash rather than wait for all the rigamarole to be completed -- then the insurance company comes out way ahead. They get our monthly fees and work to make sure we get as little as possible in return. 

I hope I am merely being paranoid. But somehow, I doubt it.

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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.

What It’s Like to Be Forcibly Tapered Off Fentanyl

By Emily Ullrich, Guest Columnist

Although I have been on this chronic intractable pain, illness and medical refugee train for nearly a decade, I’ve been lucky to have the love and support my husband, family and wonderful people around the world that I've met through this shared anguish. They lift me up and allow me to lift them, when I can.

Right now, I'm holding onto them in utter panic, because they’re all that I have left.

About four years ago, I met a palliative care doctor, who had taken the time to read my 3-page health history. I take that paperwork with me to every visit to the ER or new doctor, so they can fully understand the things that I have tried, what worked, and what made things worse. No doctor had ever looked at it, until she did.

She approached me with zero judgment, and 100% sympathy and empathy. She actually cared about what I'd been through. I broke down sobbing, because I could finally let my guard down. I told her how my husband had to take a day off from work every month to drive me five hours and three states away, to see the only doctor I could find who was willing to treat my complicated needs. She told me I could see her instead. That was a tremendous gift.

Last year I began to sense that there was growing pressure on her about prescribing high doses of opioids, so I asked if I should worry about her cutting my meds or passing me off to another doctor. She reassured me that she would do no such thing.

Then came my visit one month later. I knew something was awry, because there was a case worker present for my appointment. My suspicions were confirmed when I was told the dose of my fentanyl patch would be tapered significantly lower. I was thrown into a tailspin.

With my doctor’s help and willingness to prescribe the meds and dosages that I needed, I had been able to achieve about a 4/10 on the pain scale, daily. I was able to participate in life again and do things that I love, like cooking, getting dressed up to go on a date with my husband, and other things that healthy people take for granted.

I was furious and traumatized that I was going to have to give up living my life. I still am.

On my next visit to see my doctor, she dropped another bomb. She told me that I had to choose between anti-anxiety meds and pain meds. Ironically, she was the one who put me on a higher dose of Xanax to help me cope with anxiety and insomnia. I felt betrayed.

I would not wish the hell of abruptly and simultaneously tapering off fentanyl and Xanax on anyone.  Even when I had a higher dosage, I still had pain flares that were not properly controlled. But since the taper began, I now have them daily.

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I want this to be very clear: Fentanyl is a necessary medicine for many people with high pain levels. I have tried every other extended release medication known and none even touched my pain.

Fentanyl has gotten a bad reputation and patients who take it live with heavy stigma because the media usually report on fentanyl overdoses without distinguishing between illicit fentanyl and properly prescribed legal fentanyl.  

I would like to make a plea to the media: Stop the ignorant reporting and do your due diligence. By not distinguishing between legal and illicit fentanyl, you are causing even more strife for those of us who need the relief that only fentanyl medication brings.

I have still not gotten a clear reason for my doctor's decision to force a taper on me. I fear if I prod too much, she will totally cut me off or advise me to see someone else. This is making the struggle even worse, because even though we still have a pleasant relationship, I'm hurt and confused about this. I suspect it is being forced upon her.

As I wrote this, I had to take breaks for hours, sometimes days, because my pain is escalating to such a level that anxiety and insomnia are ravaging my mind and body. I have been in withdrawal (which, by the way, does not mean I am addicted to my medication, it means I'm physically dependent on it) for about four months.

As my medicine has been tapered, my life has crumbled. I get about two hours of sleep every five days. At times I get uncontrollable head shaking, leg kicking, arm flailing and vocal ticks. My pain gets so bad that I develop a full-body rash and migraines that last for days.

I don't know what is real and what my brain has concocted. I hold nonsensical conversations, like my grandparents did when they developed dementia. It is embarrassing and terrifying.

One night, while counting down the minutes until I could take my next dose of meds, I passed out from pain and anxiety, which scared my husband so bad that he called 911.

I hope that insurers, pharmacies and especially government officials who are infringing on doctors' ability to treat their patients, might read this and see that forcing tapers on patients is dangerous. There have already been many suicides because of them.

A gap is growing between many doctors and their patients. We know this is not “What's best for us.” It is actually a twisted way to make more money off the sick and vulnerable, forcing us to replace a medicine that is effective and safe when used responsibly with drugs that are ineffective, expensive and dangerous.

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Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), chronic pancreatitis, endometriosis,  interstitial cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, depression, and other chronic illnesses. She is also a writer, filmmaker, activist, advocate, philanthropist and comic. As she is able, Emily devotes her time and energy fighting for pain patients’ rights.

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

A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

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Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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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.

A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

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I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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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.

Should You Record Your Medical Appointments?

By Barby Ingle, Columnist

My memory troubles started soon after developing Reflex Sympathetic Dystrophy in 2002. “Brain fog” or “pain brain” is a common symptom of RSD, fibromyalgia and other chronic pain conditions. Our brains have trouble focusing on short term memories and storing them for easy recall.

Even now, in a semi-state of remission, I have trouble saying the right words at the right time or remembering if I have seen a movie before. To help my memory and keep appointments, I started keeping a “to do” list and using a color-coded calendar and a medication dispensing system. I also made a habit of recording phone calls and conversations with my healthcare providers.

I’m not alone. According to a recent JAMA article, about 15% of patients in the UK secretly record their medical visits, often using their smartphones. I have been recording since 2003, after I realized that my memory was weak and that I needed assistance to better comply with my care between appointments.

How many times have you hung up the phone and your spouse asked, “Who was that? What did they need?” Or they came home from work and asked, “What did the doctor say?” or “What did you do today?”

And you can’t answer.

Before you think, “Oh, Barby must have been high on her pain medication,” that for me is a big fat NOPE. It happened to me when I was not on any medications. It is a symptom of my medical condition, not a symptom of the medications I take. For some patients on other medications that may be a problem, but it only adds to the already challenged mind of someone with chronic pain or traumatic brain injuries. The worse the pain gets, the worse their memory gets.

While you're talking, you think, “Oh, this is important, I will remember this.” Yet, you don’t. You can’t recall what you had for breakfast or when you last took your medication, let alone the intricacies of a doctor appointment.

Studies show that recording medical appointments reduces malpractice claims and leads to better understanding from patients on what their care is and why. This leads to better patient compliance and engagement in their own health outcomes.

The University of Texas Medical Branch is promoting patient recording of their visits. They tell patients it is an open policy that is there to protect them and their providers. Check out the video they created: 

Is It Legal?

I live in a state where recording a conversation only has to be known by one party. But if you are in New York or California, you have to inform and get permission from all those who may be recorded in advance.

Sometimes I record in secrecy, but most times I have my husband or sister record the appointment -- and it is quite clear what they are doing. In 15 years of doing this, I have only had one doctor ever ask me to erase the recording. That was because he had other providers in the room examining me and he talked about proprietary information that didn’t have to do with my medical condition.

I know that when I am under stress or have high pain levels, I need to record or have someone take notes at the appointment or both. It’s hard to remember if you’re supposed to take a new medication twice a day before meals, on an empty stomach, or once in the morning and once at night. Appointment times are also getting shorter and more filled with new medical terms and information that is important for us to remember.

In general, a healthy person only remembers about 25% of a conversation as soon as it is over. If you have a stressful chronic condition, even remembering that much is almost impossible. So why not record for your own safety? With most smartphones, all you have to do is press record at the start of the appointment and then hit stop at the end.

You’ll be better engaged, have an accurate account of the appointment, and be able to refer back to it when you get home and someone asks, "What did the doctor say?"

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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

An Open Letter to All the Doctors Who Missed My EDS

By Crystal Lindell, Columnist

I hate you. I actually hate you.

Well, maybe not all of you.

But most of you, yes I hate. Actually, hate is too nice word. I detest you. I loathe you. I have venom in my heart for you. I hope your favorite show gets cancelled after a cliff hanger. I hope your air conditioner breaks in your car in July. I hope your crush never likes any of your Instagram photos. I hope every single time you go through the Taco Bell drive thru, they mess up your order. And I hope your phone screen cracks, your laptop crashes and you lose everything you ever saved.

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome (hEDS), a connective tissue disorder that not only explains why my ribs always feel broken, but also why I’m always covered in unexplained bruises, why I sprain my ankles too often, why my vision changed for no reason, why my skin is baby soft, and why I crave salt.

And so many doctors missed it. And I can’t get it out of my head.

Like the doctor at Loyola who told me to stop coming to see him because there was nothing else he could do about my pain.

And the other doctor at Loyola who looked right at me while I was sitting on the exam table in just a paper-thin gown and said, “Well there are two options. You either woke up with a completely unexplainable pain, or you’re a great actress.”

I was so caught off guard that I didn’t even realize he was accusing me of trying to get drugs for like a full 30 seconds.

I also hate literally every single doctor at the Mayo Clinic that missed this crap. You know how easy it is to do an initial test for hEDS?

Doctor: "Can you bend your thumb to your wrist?"

Patient: "Yes."

Doctor: "Yeah, you probably have it. Let’s do a full evaluation."

IT’S THAT EASY!!!

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The Mayo Clinic missed it because they were obsessed with me going to their rehab clinic and getting off opioids, despite the fact that it wasn’t covered by my insurance and that they required a $35,000 upfront payment.

So yes, I hate all of you.

I also hate every single chiropractor I ever saw. Seriously, all you guys do is see people in pain, and it never crosses your mind to evaluate for EDS? Why are you not asking every single patient who walks through your doors if they can touch their thumb to their wrist? What is wrong with you?

Not to mention the fact that chiropractors have to be super careful with EDS patients, if they treat them at all, because things can dislocate and all that. It’s irresponsible of you not to be evaluating every single patient for EDS.

I also hate the pain specialist who berated me for not wanting a spinal cord stimulator. If he had evaluated me for EDS, he would have known that a spinal cord stimulator would have probably been a horrible idea for me. Like chiropractors, all pain specialists do is see people in pain. They should be evaluating every single patient they see for EDS too! 

The whole thing is so infuriating and frustrating. I sincerely wish I could go back to every single doctor I have seen over the last five years and personally tell all of them how much I hate them. And then I wish I could tell all of them to freaking check people for EDS. But I can’t do that. All I can do is write this letter and then try to move forward with my new life and my new diagnosis.

But if you’re a pain patient and you can touch your thumb to your wrist, get checked for EDS. Seriously.

And if you’re a doctor, do better.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

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.

A Pained Life: Tough Luck

By Carol Levy, Columnist

For the first time in almost 40 years, two doctors said the same words to me, the words I have always dreaded: “Tough luck.”

Their words were meant to be kind, but the meaning was the same: There is no cure.

That is the last thing I want to hear.  The last thing most of us want to hear.

I am a new patient of both doctors. They do not realize I am like a woman who fell overboard, clinging desperately to the side of the ship. I cling desperately to hope – the hope that someday, someone, something, will end the pain. It is what keeps me fighting.

It is that little sliver of hope, even after all this time, that there is an answer. And then I could work again. Do anything I want to do. And do it without pain.

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For all intents and purposes, I have been mostly housebound for the last 39 years, except for 3 months in 1977 when I had my first and only completely successful surgery.  I got a job as soon as I was permitted. I made wonderful new friends. We went out every weekend and during the week too. It was glorious. And then, one day while at my desk, a trigeminal neuralgia pain tore into my temple. And my life was lost again to the demon pain.

I do get out of my apartment. I take a class 2 times a week at my local Y. I am active in politics and try to get to the  monthly meeting and other events. I go to the grocery, the bank and doctor's appointments. All of these make the eye usage and eye movement pain much worse, but I do them and get through them (sometimes with a little narcotic helper). But absent those times, I am home.

The pain comes even when I am doing nothing. Staying home does not give me control over it. But by staying in, I reduce the number of times I am actively inviting the pain to get worse. Little by little, unconsciously, I am miniaturizing my life, doing as few things as possible so I don't exacerbate the pain.

This is no way to live, so I still search.

My pain management doctor tries new medications. They have not helped so far. It does not stop me from continuing to up the doses, as prescribed, just in case. As he writes out the prescription he is clear: “Maybe one of these will reduce the pain but you can't expect more than that.”  

In other words, tough luck.

Meanwhile, my neurosurgeon has given me two last and final options. He can redo a procedure I had in 1980 that helped with the spontaneous pain (that could be triggered with the touch of a hair), until it failed 5 years later. Unfortunately, while doing the operation they removed bone in my neck. They took out way too much and my neck “fell down.” It is now held up with clamps in the front and back of the cervical spine, which are held in place by 12 pins.

Because of this, my new surgeon can’t go in where or the way he wants. It makes the outcome and risks much more unknown. There is only a 45% to 55% chance it will work, with a risk of paralysis among others. Almost equal odds.

The other option is worse, the odds are even: 50–50. Worse still, the operation is essentially psychosurgery. He would place a lesion in the frontal cortex of my brain. “You will still have pain, you'll just not perceive it as pain,” he explained.

So, what do I do? What do we do when faced with equally awful choices?

I honestly don't know.

I do know that learning to live with pain, what so many of us are told, is of no help when no one tells us how to do that. If they would, maybe “tough luck” would be an acceptable option.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of  “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

How to Prepare for a Scheduled Hospitalization

By Ellen Lenox Smith, Columnist

No one enjoys the experience of being admitted to the hospital. Indeed, hospitalization can provoke extreme anxiety, which does not contribute to successful outcomes in any medical procedure.

Proper preparation before you go to the hospital not only reduces stress, but enhances the probability of a successful medical experience and helps promote a smoother healing process – all of which lead to considerable benefits to the patient.

For example, while recently preparing for a revised neck fusion, I realized that eating would become an immediate issue because nutrition is so important for healing. I don’t want to rely solely on hospital food, so I am preparing meals that I puree and freeze for my husband to bring to the hospital that I can sip through a straw.

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Here is a list of other things I plan on doing:

  • I plan to arrive with all of my compounded medications in their labeled containers, along with my regular pharmaceutical drugs, so I will not miss any scheduled doses.
  • I will bring my entire medical folder, which includes my name, address, insurance coverage, contact information for my primary care doctor, pharmacy and nurse case manager, a list of medications and dosages, a list of medications I am sensitive to, previous surgeries, and my diagnoses.
  • I will also include a list of Do’s and Don’ts to help keep the staff educated about Ehlers Danlos Syndrome and keep me safe when I might not be able to advocate for myself.
  • I will pack my supplements that I will take after the surgery, so my body is allowed to quickly return to the routine it is used to.
  • I will bring a special pillow that I sleep with that keeps my head in the correct position all night long (I use the Therapeutica Sleeping Pillow).
  • I will give to the staff my list of food sensitivities and request to meet with the hospital dietician in hopes of getting food delivered that I can metabolize.
  • I will pack t-shirts, loose flannel pants and warm socks so I can walk around the halls comfortably, instead of having to wear those lovely gowns you wake up from surgery in!
  • I will bring a small bag of toiletries I prefer to use, along with a comb, brush and a toothbrush since what they provide always seems to be so skimpy.
  • I will prepare a list of friends and family phone numbers for my husband/caregiver to contact after the surgery is completed.
  • I will bring my Living Will and any needed directives.
  • I will wear my medical alert bracelet and will ask that they please read what is on it!
  • I will bring my own BiPAP breathing machine, so I know I am sleeping with the correct readings. I’ll also have the doctor write down the exact setting in case the hospital decides to use their own machine.
  • I’ll bring things to do that are simple and peaceful that will help calm me, as well as items that will help re-stimulate the mind, such as Sudoku puzzles, adult coloring books and quiet music to listen to.
  • I will pack enough food for my service dog to cover a few weeks, in case we stay longer than expected. I will also make sure I have her list of shots and credentials proving she is a legal service dog.
  • With serious food sensitivities, I always pack snacks.
  • I will bring paper and pen to jot down things I want to remember to ask the doctor when he arrives in the room. It is not a time to count on one’s memory!
  • I will bring my cellphone and charger to keep connected to the world when back in a room.
  • I will bring a list of my passwords in case I need to use the internet.
  • I will contact my case manager nurse to alert her of the upcoming surgery, so she is able to help assist with in any snags that might come up and arrange for home healthcare when I’m discharged from the hospital.
  • Many of my surgeries are out-of-state, so I make sure my primary care provider clears me for surgery in writing and sends a copy to the hospital. I’ll also bring a hard copy with me, in case they don’t get it or it is misplaced.

Anything a patient can do to simplify the hospitalization is worthwhile! For those of us with complicated and rare medical conditions, we must be prepared to advocate for ourselves. I have found that, for the most part, hospital staff does appreciate enlightened input from patients on best practices and how to keep us safe from harm.

As effective patient advocates, we need to educate others not only for our own safety, but to benefit future patients with our condition.

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Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart 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.

No, I Don’t Want a Spinal Cord Stimulator

By Crystal Lindell, Columnist

There’s a word that my best friend came up with that we now use when someone is being obscenely awful: J-hole.

It’s a mix between a jack [redacted] and an [redacted] hole. Get it? J-hole. You’d be surprised how useful it is. Especially around kids.

And can I just tell you something? The pain specialist I saw yesterday? He was a real J-hole.

I used to think I just had a string of bad luck when it came to doctors and it was some weird coincidence that most of the ones I met were J-holes.

But now I’m starting to wonder if there’s something about the medical profession that has a way of attracting an above average number of J-holes.

Yes, there are good ones. I think I’ve met two of them — in six years with chronic pain. But most of the doctors I see? Well, they’re J-holes. And this guy was one of the ones that prove the rule.

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He is obsessed with me getting a spinal cord stimulator. But I do not want to get a spinal cord stimulator. It’s created some friction.

This was only my second time meeting with him. He oversees a local pain clinic where I now get my weekly lidocaine infusions. It’s been great, because before I found this place, I had to drive two hours each way to the closest university hospital for the infusions. And I am too sick to drive afterward, so I was always begging people for rides. This place is about a half hour from my house, and right by my mom’s work, so it’s super convenient.

But every single time I go in, they try to sell me on this spinal cord stimulator thing. And I’m just not interested.

I usually see another doctor, a woman. Technically, I think she’s a nurse practitioner. And she at least has the ability to read a room. She presents the spinal cord stimulator every week like one of those cashiers at Kohl’s who is required by corporate law to ask if you want to sign up for a credit card, but who knows just as well as you do that you’re never going to be interested. And then we both move on. 

She’s in Mexico for Christmas though, so yesterday I had to see the J-hole guy. And he’s not someone who likes to hear the word no.

He asked me if I was interested in the stimulator, and I told him I wasn’t. Then he asked why not, so I told him I talked to my primary care doctor and he didn’t recommend it, which was true.

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My PCP, who is an internal specialist at a university hospital — so you know, qualified — said I probably wouldn’t get much more relief than I get from the infusions, and that I would probably still need to take hydrocodone.

He also told me that a fair number of the patients he knows who got a stimulator ended up getting infections from it. And so for now, he recommends that I stick with the lidocaine infusions.

I trust this guy. He’s been my PCP for like five years and he has always taken my pain seriously. He’s one of the two doctors I’ve met who is not a J-hole.

And you know what this pain specialist said when I told him what my PCP said?

“Well that guy doesn’t know what he’s talking about.”

Ok. Cool.

So then I told him that I write for a pain site online and I’m pretty connected to the pain community and I have heard nothing but bad things about these stimulators. They’re hard to remove. The batteries die. They don’t work that well.

His response to that was, “You can’t believe everything you read online.”

Always a good thing to say to someone who just told you they write for an online publication, am I right? My sister was in the room and told me later she wanted to laugh in his face when he said that.

Then he tried to lecture me about getting weekly infusions and said insurance wasn’t going to be willing to cover those forever, and in my head I was like, OK, did my insurance tell you that? Or are you just annoyed that I come in here every single week and give you hundreds of dollars in revenue for what is basically a simple IV, and you would prefer that I stop? Because I can always go back to the hospital for infusions, where they at least offered me graham crackers every week.

His main selling point was that the stimulator would free up my life, so that I wouldn’t have to deal with the weekly infusions. It’s an argument that makes sense to healthy people, but what he doesn’t understand is that the infusions are what have freed up my life.

Before the lidocaine, I was lucky to get one good day a year. Now I spend one day each week dealing with an IV drug that makes me nauseous and tired and then I get the whole rest of the week to live my best life. It’s amazing! Plus, I get the added benefit of not having to have surgery on my spine.

Look, at the end of the day, the idea of getting something implanted into my spine just doesn’t sit well with me, even if complications are rare. Especially since I have a bad habit of having rare medical issues.

And it’s hard to take a doctor seriously when you know he stands to make thousands of dollars if I get the stimulator. But for now, I’m stuck going to this pain clinic for my infusions because everyone else in town says they are too risky to do.

But no, I’m not going to be getting a spinal cord stimulator. Maybe I’ll change my mind though. After all, you can’t believe everything you read online.

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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.

Feds Bust Operators of Bogus Medical Clinics

By Pat Anson, Editor

Hardly a day goes by without the U.S. Drug Enforcement Administration announcing a new drug bust or the sentencing of someone for drug trafficking. The announcements have become so routine they’re often ignored by the news media.

But a drug bust in Los Angeles this week is worth sharing, if only because it shows that the underground market for prescription painkillers is booming and criminals are eager to take advantage of it.

The DEA announced the indictment of 14 defendants and released details of a brazen scheme that involved a string of sham medical clinics, fake prescriptions and kickbacks to doctors who were paid “for sitting at home.”

The feds estimate that at least two million prescription pills – most of them painkillers – were diverted and sold to customers looking for pain relief or to get high.

Indictments by a federal grand jury allege the suspects established seven bogus medical clinics in the Los Angeles area. The clinics would periodically open and then close, after illegally obtaining large quantities of oxycodone, hydrocodone, alprazolam (Xanax) and other prescription drugs from pharmacies using fake prescriptions. The drugs were then sold to street level drug dealers.

Prosecutors say the ringleader of the scheme -- Minas Matosyan, aka “Maserati Mike” -- hired corrupt doctors to write fraudulent prescriptions under their names in exchange for kickbacks.

“This investigation targeted a financially motivated racket that diverted deadly and addictive prescription painkillers to the black market,” said David Downing, DEA Special Agent in Charge of the Los Angeles Division.

“The two indictments charge 14 defendants who allegedly participated in an elaborate scheme they mistakenly hoped would conceal a high-volume drug trafficking operation,” said Acting U.S. Attorney Sandra R. Brown.

The indictments describe how Matosyan would “rent out recruited doctors to sham clinics.”  In one example described in court documents, Matosyan provided a corrupt doctor to a clinic owner in exchange for $120,000. When the clinic owner failed to pay the money and suggested that Matosyan “take back” the corrupt doctor, Matosyan demanded his money and said, “Doctors are like underwear to me. I don’t take back used things.”

In a recorded conversation, Matosyan also discussed how one doctor was paid “for sitting at home,” while thousands of narcotic pills were prescribed in that doctor’s name and Medicare was fraudulently billed more than $500,000 for the drugs.

Prosecutors say the identities of doctors who refused to participate in the scheme were sometimes stolen. In an intercepted telephone conversation, Matosyan offered one doctor a deal to “sit home making $20,000 a month doing nothing.” When the doctor refused the offer, the defendants allegedly created prescription pads in the doctor’s name and began selling fraudulent prescriptions for oxycodone without the doctor’s knowledge or consent. 

The conspirators also issued fake prescriptions and submitted fraudulent billings in the name of a doctor who was deceased.

The indictment alleges that criminal defense attorney Fred Minassian tried to deter the investigation. After a load of Vicodin was seized from one customer, Matosyan and Minassian allegedly conspired to create fake medical records to throw investigators off track.

Matosyan, Minassian and 10 other defendants were arrested and arraigned in federal court. Authorities are still looking for the two remaining fugitives.

While the DEA continues to bust drug dealers and unscrupulous doctors, the diversion of opioid medication by patients is actually quite rare. A DEA report last year found that less than one percent of legally prescribed painkillers are diverted. The agency also said the prescribing and abuse of opioid medication is also dropping, along with the number of admissions to treatment centers for painkiller addiction.