My Story: A Pharmacist Who Suffers From Chronic Pain Speaks Out

My Story: A Pharmacist Who Suffers From Chronic Pain Speaks Out

By Frank Schiraldi

This column is the text of a letter sent to the CDC on January 13 by Frank Schiraldi, who also contributes to the National Pain Report.

This note is regarding the use of narcotics for chronic pain.  My journey in chronic pain began about four years ago when I experienced an adverse drug event when taking Victoza for diabetes.  It caused pancreatitis, which is listed as a potential problem in the drug labeling.  Although that was quickly resolved, I began to experience the same problem about 10 months later.  The pancreatitis had returned, and expanded to cause problems with other organs in the area.  I was now diagnosed with chronic pancreatitis and groove pancreatitis.  I was prescribed pain medication, and it helped.  At the time, I was told that treating me could involve a radical surgery called a Whipple procedure, or a nerve lock, or just continuing the pain medicine.

Since then, I have had a Celiac Plexus nerve block and two surgical consults regarding a Whipple procedure.  The nerve block didn’t help very much, and my two surgical consults were of opposing positions.  One in Boston suggested the surgery, while a prominent surgeon in Philadelphia said I should not have the surgery, and in fact said he would not do it.  Quite clearly, in the practice of Medicine, two surgeons are allowed to have different opinions to guide the care of their patients.

I have continued with the pain medicine with great relief, allowing me to have a normal life and continue to work, until July of last year when I began pain management, and the tapering began.  As the medication was tapered, my pain increased steadily.  I was shocked that we had a drug that worked, yet it was being removed.  I am aware of the risks associated with pain medication, much the same as I accepted the risks associated with taking Victoza when I did, along with many of the other medications I have been prescribed.  Over the past four years while on these medications, I always took them as prescribed, never saw more than one doctor at a time, never asked for an early refill, and never “lost” my medicine or claimed that my dog ate the bottle.  I use only one pharmacy.

I was also diagnosed with Myasthenia Gravis this past summer.  Stress is a very prominent trigger to worsen MG symptoms, and I have found that the stress from pain has left me in a bad situation with my MG.  I am convinced that a return to the pain medicine I had before would lead to a reduction in the MG symptoms I am experiencing.  Unfortunately I was just scheduled to be admitted to the hospital for a round of Plasmapheresis tomorrow.

I understand how critical an issue pain medication overdose is, and without a doubt there has been an over-use of pain medications across the country.  My main point is that I believe we can tackle that issue without absolutist measures that take an option away from people suffering with chronic pain.  There are going to be cases where these drugs can be used safely and effectively.  I have been reading of case after case where better judgment should be used to take care of suffering patients.  Yet the actions I am witnessing are not what I would consider to be compassionate care, nor in the best interests of positive patient outcomes, which we all strive for.

Please include a provision for continued care for the chronic pain patient, without penalty to the caregiving provider.

Editor’s Note: Frank Schiraldi is a 59 year old Pennsylvania pharmacist working in managed care at a PBM.  He developed pancreatitis in 2011.  He since had a diagnosis of chronic pancreatitis, groove pancreatitis, avoided a Whipple Surgery, and did have Celiac Plexus nerve block.  He recently learned he also has generalized Myasthenia Gravis, not yet controlled.

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Authored by: Frank Schiraldi

There are 18 comments for this article
  1. Richard Oberg M.D. at 5:36 pm

    Dr. Dan – I know you probably know but the only reason they continue to drug test you is $$$$. I learned a long time ago that the ‘follow the money’ approach will get you to the correct answer 99% of the time. The LAST thing we needed in medicine was allowing ‘pain management specialists’ to get set up as yet another bona fide specialty adding very little value from a patient perspective and further increasing medical costs that are already exorbitant. When exactly did so called medical professionals become masters of everyone’s universe? They’re supposed to exist for ‘we the patients’ and not themselves but that’s not the case and everything’s upside down. I personally get tired of hearing all the excuses for why quality patient care is a problem for many of these individuals and how everyone’s out to get them (way too many people seem to buy into that one). If, nationwide, these so-called ‘experts’ are too incompetent to separate patients like you, me, and so many others posting here from drug addicts then why aren’t they held accountable?

  2. Jean Price at 4:10 pm

    For Krissy…and Dr, Dan Carpenter: Krissy, well, you made my day! It was so sweet of you to give some feedback on my comments and your remarks are very special to me. Thanks, dear lady! (I’m a little bit of a thwarted writer, I suppose…since I can’t seem to keep any of my comments brief!) That you’ve found some of them helpful is such a powerful gift to me. I started nursing in 1969 and started life with chronic pain 20 years later. This has given me experiences with both sides of some of the problems we all face today. And I have an overwhelming sadness that both areas are losing so much ground in giving and getting good care in today’s world! All anyone need do is read these stories and comments to see the horrendous impact it is making on people’s lives. If we share our thoughts and stories and experiences and ideas…perhaps we can feel not so alone and not so abandoned by those who could be helping us. I know unless you’ve lived with pain you can’t really understand…yet surely they could do better than they are doing now!! My six year old granddaughter does better when she says, “Grandma, even though you have lots of owies and you don’t feel good, you’re still a beautiful woman and I think you’re a super hero! I know you can’t always do things because you hurt, but you try.” Wouldn’t it be great if our doctors saw us like that and helped us more?? (I’m not expecting the beautiful part from them, truly!!). How can her assessment be more on target than our doctors? Krissy, anyone with chronic pain is a hero to me, too. And that includes you….you keep going against the odds and you make a difference in people’s lives (like you did for me today…even though you were in pain!).. My husband hasn’t shown an interest in reading these articles, either. When I offered them to him he just said later, and so far later hasn’t come yet. So, I’ll just read them for ME, and be sad he can’t share that. Families have a hard time with support sometimes. But truly, very few people know HOW to give appropriate support anyway! Most would like to see us better so they’ll feel better…and when we aren’t….well then, we must have a problem! I think they are mostly innocently guilty, but it still hurts. I guess we have to give each other support and give ourselves support too, until family and friends and the government and health care see us for who we are…good, law abiding people who want to have help with their pain so they can live life, possibly work, have social outings, raise children, and the hundreds of things people without chronic pain do! I agree that frustration is definitely part of living with pain.

    And Dr. Dan Carpenter…I’d like to share what a wise friend said to me once when I was downplaying my pain and all the humiliation involved. I was playing the “it could be worse/others have it so much worse” card and she said…”Stop right there, Jean! So what if others have it worse? You’re not others! Is this the worst thing (pain) you’ve ever gone through, for the longest? And you hurt right now too? Well, then…you rate my top compassion! There is no sliding scale when it comes to pain and pain is not a competition. You don’t need to count your blessings when you are hurting. Count them later when you get a few moments that aren’t so difficult. And I don’t need to compare you to others worse off to decide if you need or deserve my support…you need support because you hurt. Period.” This was and still is something that rings true with me and a lot of us. And she was right…your pain is just as bad as mine or any one else who has commented…because it’s yours. Doesn’t mean you don’t have compassion for others in pain, doesn’t mean you aren’t blessed more or less than others, but it means your pain is important, too. I hope that helps you as much as it did me. It freed me from a struggle I didn’t even know I had! As for the urine testing, I so agree with you about it being an unnecessary expense and humiliating, especially when you have a long term compliant history with the physician. And the horror stories of skewed test results which ended with losing your doctor are awful. Did you get to see the whole article from the foundation recently and the multiple comments on it? A lot of people feel the same as you. Hope to see more comments from you. Thanks for sharing your views.

  3. Kristine (Krissy) at 12:11 pm

    Jean, you hit the nail on the head. I am plagued and awed everyday about how little my family cares. I once sent the first article I had published to my brother; he sent back some information on addiction for me! I have NO support from family or friends. My boyfriend (about to be NOT my boyfriend) has always said how much he supports me, then I find out he hasn’t read anything I’ve ever sent him. He was faking it! It makes a person feel very much alone, and I have never asked or expected anyone to do anything for me. When my sister got cancer the entire family helped her every single day. I don’t exist.

    And I don’t understand why more doctors refuse do engage with us outside of the practice. I don’t mean they should engage with their own patients, but at least engage with large issues that are going on around them. Some doctors comment here on NPR, which is so appreciated. And you, as a nurse, are also so appreciated because you understand both sides of any story. I always like to read your comments and I always come away with something from them.

    Frustration: a symptom of chronic pain.

  4. Jean Price at 9:53 pm

    Several day ago and again tonight when reading this post and the comments again, I was struck with a thought about what our approach to this needs to be to achieve the recognition and change we so badly need. I look over these stories which are so very sad, and all the other stories on recent posts and my own life situation and I am overwhelmed with the amount of needless suffering that is taking place. Truly overwhelmed! We obviously have no credibity, and our plights elicit judgements and ridicule rather than compassion. All of this negative flack when all any of us want is to function in our daily care needs a little better, with a little less pain…and be able to function in our families and communities more productively. This is a worthy goal! So what’s the problem. Maybe I’ve already defined it…WE HAVE NO CREDIBILITY. Why is that? We take a medication that is commonly referred to as a drug. Therefore, we are seen as drug users who just want their drugs to feel better! Could this possibly be the their core issue, their mindset that time and time again denies a medication lifeline to people with chronic pain? Does any other reason make as much sense? So what happens now? Drug abusers are considered worthy of treatment. How do we become worthy of treatment because we have chronic pain? Drug abusers don’t champion themselves! No, their loved ones and the ones concerned with about them speak out….and they’re heard! The clinics who treat them and are paid for their care get heard. Politicians who may know a family member of someone, or have a family member of their own who is abusing drugs get heard. I think we need these kinds of champions! Family members, doctors who treat the underlying causes of what started the pain, doctors who treat only pain, politicians who know someone affected or have someone in their own life who can’t get appropriate care including opioids. Friends who see us being appropriate and trying to take part in life, yet restrained by pain. Counsellors who don’t see us as people with mental health issues who need their expertise, but rather see us as people with pain who were sent to them by physicians who were reluctant to treat them with opioids….or saw patients at their wits end because the pain was escalating and they had been abandoned by the physicians. We need these people to be our voice. They stand a much greater chance of being heard. I’m not suggesting we stop trying to be heard. I m suggesting we join them where needed, to present our stories. Like Sargent Friday used to say…”Just the facts, ma’am.” We tell our pain stories, our family impact and financial impact stories. And let the people who will be heard do the battle part for us. When we do battle, I think we are viewed like the old saying regarding someone who is exaggerating or lying…”you do protest too much”. Maybe this is the answer, or part of one. We need help folks, literally! it may take some asking and looking and educating them…but I believe they’re out there, and they care.

  5. Dr. Dan Carpenter at 6:35 pm

    My story of chronic back pain pales in comparison to many here, but I did want to weigh in on getting my urine tested EACH time I go to my pain specialist. I am a 63 year old retired psychologist. I have taught many groups related to addiction. I’ve never used illicit drugs and my pain doctors in the past have been surprised at how FEW PRN medications I get by with. Yet, I am subject to the same monitoring, and additional costs on a fixed income, that the abusing patients receive. Shouldn’t physicians be able to give a “pass” on this monitoring for those who don’t require it? I feel criminalized by the unnecessary monitoring and hope that a common sense solution can be negotiated for the bulk of pain sufferers who take their treatment plans and prescriptions seriously.

  6. Carrie at 2:28 pm

    I am heartened and saddened to read this. My pain management doctor left the state and his replacement decided to take me off medication I had been on for 3 years following a horrible injury. At the same time I was diagnosed with 2 debilitating, painful diseases. My primary told me I needed to have pain medication and to find another pain management doctor. So, I consulted with another doctor to see if this was “proper” and the other one not only fired me but then informed the second doctor that I was drug seeking. I finally found a third, more empathetic doctor but he keeps me very limited in my pain medication which I need to function. My entire life seems to revolve around how many pain meds I have at any given time. I am very low on dosages (I used to take 6 15-mg oxycodone and now with MORE pain and more diagnoses, I am taking 3 10 mg Percocet a day.) If I have a bad day where I need to function, I go over 3 and then I have to suffer the next day with less than 3 (or at the end of the month). Despite my pain and my legitimate illnesses,I have been treated like a criminal by doctors and pharmacists. I have had pharmacists ask me what I’m trying to pull when I bring the script in early – I’m not trying to PULL anything…I don’t want to bring it home and possibly lose it. I just go to the pharmacy from the doctor’s office and who is the pharmacist to question me like that? I asked my doctor to increase me once during a particular spell and he offered about 100 other solutions, none of which worked (including a few expensive procedures and then yoga for goodness sake). I could go on and on and on. I have 3 debilitating diseases and so much pain I can barely move on some days. There is no relief that I can find since the most empathetic doctor in the world left and no one else seems to care. I don’t drink. I don’t do illegal drugs and up until these diagnoses, I never took so much as an aspirin and now I’m treated like a criminal. I would love to find a doctor who doesn’t think I need to be limited like an errant child. It is horrible how the world has gone crazy over pain medication and people who really need it are the ones who suffer. I want to work and I want to be a contributing member of society and I can’t when the pain level is out of control. One doctor said to me “What is more important, your job or your health?” He said if I was in so much pain, quit. Fine. But I do need the money Mr. Doctor. I’m not rich! Craziness.

  7. Kim Miller at 10:36 am

    Thank you for keeping us updated on your story, Frank. It means a great deal to have a medical professional describe their personal experiences with the unnecessary tapering of pain medication.

    I appreciate your willingness to tell your story to assist in helping with awareness of the benefits of opioids and the obvious negative impact of deprivation of pain relief.

    We need this type of clear explanation of the benefits of opioids versus the impact of removing them from the regimen of a patient clearly receiving great assistance from them, while tapering off them has physically diminished his life. I’m extremely sorry you are suffering needlessly, when these medications are available and relatively safe. My hope for you is that sanity will prevail and your medications will be restored. Best wishes to you and all undertreated chronic pain patients.

  8. Brooke at 3:37 pm

    Audrey,

    Your story saddened me. All I kept thinking was that if your original gastric bypass surgeon said your stomach tissue wasn’t normal then why did he move forward with a major surgery like that? Have you ever consulted with an attorney? It’s probably too late but all of that screamed malpractice to me and of course he was pissed you were 100 lbs. He’s libel for doing an operation he probably shouldn’t have done. My GI doc had to step in and prescribe temporarily when my primary and not a single pm doctor in our area would. CP is horrendous pain. Do they know what is causing your pancreatic flares and CP at this point or what may have triggered the acute episode? I had sphincter of oddi dysfunction and one episode of AP from an ERCP. They are known to cause AP. My pancreas was ok for years until I tapered off Lyrica, gabapentin, and klonopin. My pancreas went nuts and over time I proved time and again these meds made it worse as I tried a few times going back on them only to end up in a near AP flare. Now my triggers of course are foods because I have damage. Benzos are very bad for the biliary/pancreatic system I have found. Unless you are on a steady dose without half life breaks they can wreak havoc. I will never take on again for fear I will die of AP. Hope you find a good compassionate pm doctor.

    Brooke

  9. Audrey at 3:01 pm

    I’m in the same boat as so many others suffering from chronic pain. In May 2010, I had Gastric Bypass surgery. My mom was with me, and after the surgery th doctor came out to tell her that my surgery went well except that my stomach tissue wasn’t normal. He told her that it was stringy and stretchy, and he had to put extra staples in my pouch to get it to hold. Everything was going fine for 3 months when the pain started. It took me another 2-3 months to get into the GI Dr. He scoped me and found a large bleeding ucler. He stopped the bleeding. I called my surgeon and told him what was going on. Over the next 4 months I was scoped several times every time the dr had to stop the bleeding. After each scope I’d call the surgeon and talk to his nurse. I would report what was found, what my weight was, and how bad I was feeling. Finally the GI Dr. said that the ulcer had to be removed. I again called my surgeon talked to the nurse and reported everything. I finally got an appointment with the surgeon in March of 2011. At the time I weighed in at 102.5 lbs. He immediately got mad at me and said that it was my fault it got that bad. He put me in the hospital where I was there 5 days and was sent home with a PIC line and TPN and home health. Every day a nurse came out to change my TPN bag, check my vitals, and on Mondays do blood work. My surgeon said that I needed to be stronger for surgery. After 6 weeks, the nurse came out and checked my vitals and do my blood work. I know I had a fever, but know idea how high. When she checked it, it was 104. She said that she couldn’t do anything with me and off to the ER I went. I was admitted to the hospital for a staff infection. I received my first blood transfusions then. 5 days later I was released. The next day the hospital called me back and said that I had to come back. I was readmitted because my blood work came back positive for staff. I was there another 2 days. I refused another PIC line, so I spent the next 2 weeks going every day to to hospital for IV antibiotics. In June 2011, finally I was ready to get a revised gastric bypass at a 105 lbs. The ulcer had eaten through my pouch and my pouch and stomach adhered to each other. The Dr had to scape away my pouch from my stomach. I received my 2nd blood transfusions then. Within 3 months, again I was hurting again. I was scoped to find yet another ulcer. Again this ucler developed into a bleeding mess. This time my surgeon decided that maybe if they cut my vagus nerves to my stomach that will be a cure-all. The Dr decided to go through only one side instead of both. This would be easier for him, he would just flip my stomach to get the other side. I was only supposed to be in the hospital over night but I was there 4 days. I was released on Saturday and Sunday I was was back in the hospital for pancreatitis. I received my 3rd blood transfusions. The GI dr that’s been scoping me had to do an emergency scope to stop the bleeding. He wanted to remove my gallbladder, but the head of surgeons came to my room and told me no dr in that hospital will do surgery on me. He said that I had to go to the Dr that did my Gastric Bypass. 3 weeks after being released I had my gallbladder removed in an outpatient surgery. My PC Dr was not happy because I was a health risk. Now my ulcers are healed, but I suffer from chronic pancreatitis, IBS, and a burning in the middle of my back that keeps me from standing or sitting for any length of time. I also have severe TMJ and suffer with major headaches and a shoulder that I’ll probably end up with surgery on. In January 2015 my job suggested that I go on short term disability and let it roll over to long term disability and keep my benefits before I get fired and lose everything. Then my disability case manager wants me to get another 2 dr to examine me. She can’t find a Dr around here that will take me. The Dr she found me is over 100 miles away. I had a great dr that was very nice and listened to me. He tried to get me into specialist but was turned away by 6-7 dr. Including the pain management that took every junkie around. He finally agreed to be my pm Dr. I signed a contract, never failed a drug test and life was getting better. In May 2015 my dr died suddenly. I had a hard time finding another pm dr. The one I have found has changed my medicine and the last 5 months have been miserable. I’m just about bed bound with a heating pad on my stomach but now my stomach is burnt up and scared up. I have begged him to change my medicine but he says that because of it being abdominal pain it’s really hard to treat because it moves around. I have told him that mine doesn’t it hurts in the same place. Now he wants to send me to a GI dr and get a mental evaluation before he will consider anything. I agreed to everything he has asked of me. I don’t know what else to do.

  10. D flock at 8:03 am

    It’s so bad that I would rather stay home as I did this past summer instead of going to the hospital to be treated like dirt and believe me these hospitals are getting so bad. They send in PAs to begin with who know nothing about emergency medicine and then they treat you with no respect or dignity. I’m 62 and am being treated as a drug addict. So please I would rather suffer at home and not bother. And I would not have gone but my children made me go. Another thing no one is addressing is the dying people suffer as they die and I saw my mother have an easier time 3 years ago even though she had so much pain and then saw another family member die this past year screaming in pain and fearful. We all have to go through this so people thinking they will never need these drugs are most likely very wrong .

  11. Pam at 7:09 pm

    Thank you for standing up for the legitimate chronic intractable pain sufferers. I am sickened by the stigma that has been put on our backs as addicts. We are NEGLECTED, ABUSED, MISTREATED, UNDER MEDICATED AND DISCRIMINATED AGAINST! I have been suffering for ten years now, I did everything the medical community told me to do. Two FAILED spinal fusions that left me with severe nerve damage, plus several debilitating conditions there is no cure for. I had years of physical therapy, epidurals, nerve blocks, facet injections, massage, chiro, tens, nsaids that gave me horrible side effects. Opiod therapy was my last resort and i was finally given a quality of life up until last march when my dr cut my meds back more than half, I no longer have a quality of life, I can no longer shower daily, take walks, clean my home, cook a meal for my kid, the list goes on. I am homebound and honestly am sick and tired of paying the very high price with my health and overall well being because of those who CHOOSE to abuse! I follow the rules, signing pain contracts like some criminal. CHRONIC PAIN WHEN LEFT UNTREATED KILLS, . The government is FORCING us to exist in agony, denying us our life saving meds. It is INHUMANE what is being done, I beg God to take me every day, this is not living, its torture, and trying to find a dr willing to treat with opiods is like trying to find a needle in a haystack. They all are in fear of the DEA. Enough is enough and its time the chronic pain community ban together as one and fight back hard! Our rights are being stomped on every day. Where is my right to pursue happinness when i exist in excruciating pain every day, where is my right to medicine that helps to tolerate the pain and help me plant my feet on the ground!?!? Why is alcohol not being targeted whose deathrates FAR exceed that of the CDC’s FALSIFIED OVERDOSE DEATHRATES!! I honestly do not know how much more of this hell I can take!!

  12. Emily Ullrich at 8:16 pm

    Frank, on behalf of myself and the chronic pain community, thank you for this eloquent and accurate letter. Some of the points you made are spot-on. I’ve been concerned with and offended by the media and government’s repeated lumping together of legitimate pain patients, and addicts for years. I understand the need for addiction treatment availability and the stigma surrounding it. I also understand the need for chronic pain treatment availability and the stigma surrounding it. Even doctors and hospitals commonly group the two together. Drs need pain treatment education, and not just anti-opioid rhetoric and biased extremism. Patients deserve to have adequate pain treatment according to each individual case. Your attention to this in your letter is very important. What is considered a “high dose” of pain medicine for one person may be nothing to another patient. Again, thank you for this intelligent, detailed appeal. I just hope they listen. I fear our comments are too little too late, and to turn things around, we are going to have to suffer the loss of millions of lives due to suicides and desperate patients who resort to the streets to obtain pain relief. I hope I’m wrong.

  13. Jeremy Goodwin, MS, MD at 5:19 pm

    That was the most lucid and well written account of a patient’s pain and what these draconian measures can mean to a person who not only suffers horrendous pain but also serious diseases for which stress can be damaging. Not having access to proper oain care is a huge stress as is the pain itself.

  14. Brooke at 12:57 pm

    Thank you for representing chronic pain sufferers and those of us with chronic pancreatitis. We can’t give up and must band together! Coincidentally, I have a “My Story” on my chronic pancreatitis coming out soon. Pancreatic pain is by far one of the worst pain conditions known to man. It brought me to my knees and I’ve had several other painful conditions. These idiot doctors tried to tell me tylenol was enough! That is like saying a bandaid will help the person who just lost a limb. The problem we have is no one was researching various opioid pain meds’ effect on pancreatitis. It was always a no-brainer. They controlled the pain best. Now the medical profession is using that lack of research to say there is no proof opioids work on pancreatitis. That is because there aren’t studies about it! Well, there was one I saw that said fentanyl is the best over other opioids for relieving pancreatic pain but that was it. There are no studies that say opioids don’t work for pancreatitis. So, it’s tit for tat and they make up rules and theories as they go along. Regardless, WE know what works for us and this is getting out of hand. I too had the celiac plexus block, which didn’t work at all. Research on that is scant and inconclusive when it comes to pancreatitis. Apparently it works better for pancreatic cancer but not pancreatitis. But it not being evidence based doesn’t stop pain doctors from wanting to play guinea pig and make a quick buck. Also, doctors are mediocre here in Albany, NY and they don’t perform the blocks the way I here they are supposed to be performed. Isn’t it interesting that the medical profession gave you the medication that caused your pain condition but now they don’t want to treat it properly? I am sorry you have a secondary condition now. That is awful. Hang in there. You are certainly not alone.

  15. Richard Oberg M.D. at 12:18 pm

    Frank’s story is typical and essentially identical to my own only with a different disease. I’ve been treated with opioids (by the only internist with our hospital system who would do this) for a much longer period and they DO work long term. Ed mentioned in the hyperbolic TIME magazine article post I just read about how they’re concerned about the 2.1 million who are ‘hooked’?? Meaning Frank, me, and many others I presume because we had the misfortune of not contracting a disease that fits within the ‘acute’ guidelines?? This is the most successful campaign by some to play bait and switch – look at alcohol morbidity/mortality stats per year which dwarf this but what….. that’s been ‘voted’ as socially OK by the majority, prohibition didn’t work, so we’ll find something else to pick on?? The language of the TIME article betrays the bias and isn’t this pure discrimination? The media isn’t exactly into doing their homework before joining the ‘expert’ party line when they used to challenge it. Look at the number of people in the U.S., look at morbidity/mortality due to any dozen other things, and you have to come to the conclusion that chronic pain just isn’t taken seriously at all. My wife is a dermatologist disabled due to Ehlers-Danlos HM with chronic pain issues and, as bad as it is for one, imagine TWO in one family trying to get care. If physicians needing care were treated the way we have been the past two years there would be outrage – but since the majority are healthy and would prefer not to get involved or have to script for them there’s silence. It’s abhorrent to say the least.

  16. Heather at 10:57 am

    Love the reference to “kindergarten rules” Jean exactly how I feel reading through all of these CDC articles!!!

  17. Jean Price at 8:49 am

    Frank…thank you for this letter of advocacy for yourself and all of us with chronic pain who take opioids for relief. You have certainly been through so much and it’s difficult thinking you don’t have access to some of the medication that would make your pain and your life better! (As an aside, I have been to Mayo in Rochester, and had a very positive experience there. I would highly recommend them as a third opinion on the treatment of your pancreatitis. You can call and just make the appointment yourself and some of the area accommodation are right across the street from the clinic and hospitals. I met one of the GI doctors and also a doctor who specializes in pancreatic issues. They were both great.). Back to your issue of chronic pain, I too believe use of opioids and abuse of opioids are two different issues. And I fear they are being joined as one, which will most likely be detrimental to patients who have chronic pain and take opioids to be able to continue their minimum activities of daily living. I believe most of us have a healthy respect for all medications, including opioids, and follow our doctor’s orders. This should not mean having to phase out a pain medication because some people abuse them! I look at that as “kindergarten rules”… Johnny talks so we all are denied recess! Only this is a much bigger issue than recess! It can mean life enhancing care, depending on our physicians being able and willing to prescribe appropriate pain medication. Or life limiting when we are denied pain medication not based on our condition or severity of pain, but rather regulations geared toward those who abuse opioids and the system. I too follow all of my pain clinic rules, even though some of them are humiliating. And I have never abused my medications, including my pain meds. I am concerned about what the future will bring in the care of patients with chronic pain if the regulators don’t give us and the physicians the latitude we need for our care, including prescribing opioids for moderate to severe pain. I stand with you on this and I appreciate the opportunity to say so.

  18. Kristine (Krissy) at 7:26 am

    Good response to the CDC. Thank you, Frank.