Chronic Pain Health — 01 August 2012

I am a chronic pain patient. As a child, never in my wildest dreams did I envision life leading me down this path. I had other plans; things I was going to do that would make a dramatic impact in the world.

I had no idea that I was born with a debilitating disease that would completely take over my life.

And I had no idea I was going to end up advocating for others like myself.

Once I was diagnosed with Medullary Sponge Kidney, or MSK, I sought out others that were also diagnosed with disease, which causes kidney and bladder infections, calcification of the kidneys, and repeated episodes of extremely painful kidney stones. I heard stories from other patients who are having the same difficulties as me — including the way we are treated, not only by medical professionals, but sometimes by our own families,

Initially, I did not plan to advocate for chronic pain patients. Not because of the stigma that’s involved, or the decision of the government and DEA to launch a full blown assault on this particular group of people, but because most people are not familiar with MSK and I wanted to spread awareness about the disease.

Since starting my mission, I find myself advocating for chronic pain patients in general. We don’t have anything to hide or be ashamed of, because we’ve done nothing wrong, and many of our stories are horrifying and gut-wrenching, and need to be told.

According to the Institute of Medicine, around about 100 million Americans suffer with chronic pain. The IOM also states on its website, “Pain is a major driver for visits to physicians, a major reason for taking medications, a major cause of disability, and a key factor in quality of life and productivity. Given the burden of pain in human lives, dollars, and social consequences, relieving pain should be a national priority.”

I couldn’t agree more with that statement.

The statistics, goals, and accomplishments that some states and media outlets are reporting in this war on drugs are staggering to say the least. The state of Florida is winning the war hands down, there is no denying that.

The problem is though, the stories that I’m getting from actual patients aren’t jiving with what is being reported. For instance, according to Florida’s Prescription Drug Monitoring website, the very first goal they list is to “Support access to legitimate medical use of controlled substances.”

However, according to an online petition signed by over a thousand patients and healthcare providers, that goal is not being met. Patients with prescriptions for opioid pain relievers are repeatedly being denied access to their medications. In some cases, they’ve missed work because they end up driving around for hours trying to find a pharmacy that will fill their legitimate prescriptions. I have personally experienced this.

What benefit is it to patients for doctors to write prescriptions if they are unable to get them filled? Something is very wrong here.

I plan on bringing some of these stories to you in upcoming columns. Stories about people who are being hurt the most by this war on drugs; with no viable options to take care of themselves, let alone their families. Stories of hardship, suffering, persecution and discrimination. These stories infuriate me and make me cry, and at times make me question just how free our nation really is.

I will show you the human element to all of this, and that the casualties of this war are far greater than you may realize. Somewhere along the way, humanity and compassion were lost in favor of personal agendas and witch hunts. I believe it’s time for us to make them priorities again.

A public rally in support of chronic pain patients will be held in the courtyard of the Florida State Capitol in Tallahassee on Wednesday, September 12th at 9 am. This rally is being organized by Donna Ratliff, a chronic pain patient advocate. Patients, family members, caretakers and health care providers are encouraged to attend. More information on the rally can be found at the Fight For Pain Care Action Network, a Facebook group.

Mary Maston

Editor’s Note: Mary Maston suffers from a rare, congenital kidney disease called Medullary Sponge Kidney or MSK. She is an advocate for other MSK patients and a contributor to

The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. American News Report makes no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

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About Author

Mary Maston, Columnist

Mary suffers from a rare, congenital kidney disease called Medullary Sponge Kidney or MSK. She is an advocate for other MSK patients and others in chronic pain.

(12) Readers Comments

  1. I have been a pain management patient for 13 years. Broke back at 14yrs and now degenerative disc disease, run over on bicycle when pickup runs stop sign, crushed leg, has 16 pieces of titanium holding ankle together and eight dis-articulated bones in foot and toes. CVS and Walgreens are “out of stock” while small independant pharmacy across the street has plenty in stock at 8 or 9 dollars each compared to 1 dollar price at CVS, when in stock. This is price gouging to the level making them legal drug dealers. This needs to be exposed.

  2. Mary. All i can say is WOW! You said it all. And god bless you and all of us fighting for our 1st. Amendment Rights. I know were not all bad people, but when leaving the Pharmacist feeling lower than low, it almost brainwashes you after so long dealing with it. Thank you so, so much for your stories, i wish i could write like that. Ms. Shannon Howey. Pain. Management patient 10 years.

  3. Mary, I spoke to soon. I was just denied my prescription for oxycodone here in Brandon, FL at my regular family pharmacy because their inability to order this month due to government “regulation”. I am new to political activism, am looking into what I can do within my means so email me if you have any suggestions or need help to try and make a difference for chronic pain sufferers. God bless,

  4. Hi Mary. I am 38, male and suffer with chronic pain to the point of becoming disabled, which took years to get the government to recognize. In that time I have lost my home, my transportation, and cannot pay college loans that have swelled due to penalties and interest. I can accept all of that, but what I cannot accept is that I am fighting tooth and nail just to have some hope of a more normal life as a legitimate chronic pain sufferer. I arrived at your article today because on my visit to my pain management doctor today my doctor is going to stop giving prescriptions for oxycodone (probably other opitates as well) I live in Florida which recently implemented the Prescritption Drug Monitoring Program. I am in favor of a preventative measures that target the abuse of prescription drugs, but not to the point of violating what you rightly pointed out that the first goal of the PDMP website is to “Support access to legitimate medical use of controlled substances.”. I cannot fathom having to suffer more than is necessary when there are medicines that improve the quality of my life. Currently I have the meds I need, but apparently I won’t next month. Why? “The doctor says there are other things I can take… ” I wish that were true. I pleaded with my doctor to look at my records as she was over looking the fact that I am allergic to NSAIDS(non-steroidal anti-inflamitories and blood tests prove I cannot take Tylenol (acetaminophen) with out damaging my liver. These are common meds mixed with pain medicines, oxycodone is one exception… I do nothing (like drinking) that should cause liver damage. If I stop the tylenol, my liver goes back to normal if I start, it starts going bad again. I cannot take morhpine due to severe side effects. I know of nothing else I can take nor has the doctor given me any other options. Though this is all in my medical records my doctor says, “I just have to stop prescribing oxycodone.” Why? Well I’m sure it is pressure from the government who is targeting people like me in an effort to dry up the supply of the bad guys who abuse drugs and push them on the street. I am not one of them! SO very frustrating as you know. I am literally being forced to choose between liver disease and horrendous out of control pain all over my body when there remains a viable option that improves the quality of my life. This is the second pain doctor I have had to go to, because the first stop prescribing oxycodone too… Is it because they don’t want to spend time entering the information into the required PDMP database or because they feel bullied by law makers and that their livelihood could be at risk? The later is the obvious conclusion, therefore they choose to be “safe rather than sorry”. I think the current legal approach is causing a major problem that is violating the very first goal of the PDMP is being violated daily. If you get the prescription then there is the pharmacy issue which I have not had a problem with as of yet, but I signed the petition you mentioned a few of weeks ago. I am at the mercy of the government and family until I can figure out how to create an income again and I ned access to meds that won’t kill me. I am unable to attend the rally on 9/12…What can I do to help ? Thank you for being a voice for liberty on this issue.

  5. As a mother of a grown daughter who has suffered many years with chronic pain and the constant frustration she has to go through everyday just to get her pain medications is heart wrenching. It is my prayer that those who make policy would stop, meditate, and consider the possibility that tomorrow, they could become the chronic pain patient. Or, their child or grandchild could be stricken with an incurable disease that leaves them screaming in pain for the rest of their lives. God forbid that should happen. But, nobody knows what a day may bring to each of us. May God open minds and hearts to mercy and compassion on all those who are forced to suffer chronic pain needlessly.

  6. As the sister of a chronic pain patient I have watched this horror story play over and over again. I hope that Tallahassee begins to recognize that discrimination is not an option, and people like my sister and other patients are treated like human beings again.

  7. Only legitimate, law-abiding patients will be hurt by these new laws. Drug addicts will always find a way around the law. Patients who are in pain will have neither the time nor the energy nor the ability to circumvent the system. And they will suffer needlessly. How will officials differentiate between doctor shopping and multiple visits to the ER for uncontrolled pain? How will they know that you are seeing another doctor in the same practice because your regular doctor is not able to see you? ER doctors rarely give more than a few days worth of pain medication, which requires a follow up visit within days to your primary care provider or specialist. Again, multiple visits to more than one physician within a few days for pain control. Uncontrolled pain will lead to death through patient suicides and complications that result from the uncontrolled pain. Imagine having open heart surgery and being given only a few days worth of pain medicine and a follow up appointment weeks out. If the patient’s pain is not under control, he will not be able to breathe deeply, leading to serious complications including pneumonia. Imagine passing a kidney stone and being told they don’t want to give you adequate pain control for fear that you might become addicted. There is an enormous difference between addiction and dependence! Addiction includes behaviors such as lying, stealing and other illegal activity to get a fix. People become dependent on medications and other substances all the time. Many people are dependent on caffeine. They do not lie, cheat or steal to gain their caffeine fix. But they certainly will experience withdrawal symptoms if they stop using caffeine cold turkey. Individuals taking antidepressants are dependent on their medication and will experience serious consequences if they stop their medication suddenly, yet we do not worry about them becoming addicted. Why do we worry about pain patients becoming addicted? Is their suffering more desirable than the possibility that they might become dependent on pain medication? Ten years ago 40% of pain patients reported not receiving adequate treatment for their pain. I doubt that that statistic has improved. Pain is the primary reason patients seek medical treatment, yet doctors are becoming increasingly fearful of treating patients. Very few people become addicted to their pain medication, and research has shown that rather than building a tolerance to the medication, those patients who need more medication to control their pain actually experience disease progression not increased tolerance. Finally, I am amazed that HIPAA laws do not prevent this kind of sharing of personal information between doctors, pharmacists, and others without a patient’s permission. Who actually has access to this data? And how will it be used? Pharmacists can now refuse to fill legitimate prescriptions because they suspect the patient might be addicted? Where is due process? Pain patients are being tried and convicted by a few people with little evidence and no legal protections. And only the sick and hurting and dying will suffer.

  8. Aww. Mary. That was a great article once again. It is horrible that people with chronic pain in Florida are having to go through this witch hunt as you say.. but I sincerely think that if we all stand together on the day of our peaceful rally that we can get this changed around. God willing we deserve it. Pain patients having to go so far away from home to stand out side and talk with media at our state capital to be heard and seen by our own states officials. We shouldn’t have go this far but they are forcing us to go through more pain to do this. I surely hope that our efforts are appreciated by the others that couldn’t make trip because they are at home in pain and can’t get out of bed. We will do this for ourselves and for others in pain. Please.. anyone that lives Florida? Come out with us on this day on Sept 12 2012 and show the compassion that Americans should have one another. Thank you Mary for sharing the hard work that we are doing to help all Americans that live with pain everyday.

  9. I have never in my life thought I would not be able to get my legal prescription filled at my local, longtime pharmacy! For years that same pharmacy would make sure they had enough supply to fill my prescription and I never had to worry if they would suddenly, without warning, turn me down with a disparaging look and a “Please don’t bother me with this” look on their face. It used to be if they didn’t have it in stock, they would gladly offer to call the nearest pharmacy in their chain and assure me I would find it there. Why should this be any different from any other prescription, thousands upon thousands, filled in pharmacies all over the country every day? How would you feel if suddenly you went in to pick up your regular heart medication and were told they didn’t have it in stock by pharmacy after pharmacy after pharmacy? And after traipsing around town for hours and days, finally find it but then have to do the same thing the next month and the next? Pain medications such as these cannot be just stopped! You will go into withdrawal. So, every month the chronic pain patient is left to worry if they will, in addition to having no pain relief, go into horrible withdrawal at the end of every 30 days. And the next 30 days and the next. People outside of Florida who have not [yet] had to deal with this insane inhumanity can’t understand it. Of course they can’t because it is so hard to believe! This is not right! Legitimate patients should have every right to have their legal prescriptions, prescribed by their legitimate doctors, filled without fail! But this is exactly what is happening in the State of Florida right now. I am sorry that people have died from abusing these medications but that was their choice. We are given NO choice and NO voice. All because of fear. The doctors fear for their licenses and the pharmacists fear for their licenses. So, the legitimate pain patient is the one who suffers. It’s not right and the DEA and the state officials know it’s not right. The only thing we can do is to make the public aware that this is happening and to fight for our right to adequate pain care. Ironic, isn’t it, that the very ones who are the least able to fight this fight – the sick, the infirm, those left in pain through no fault of their own are the ones who have to stand up and demand what is right? Just to be able to live without pain. Thank you, Mary Maston and American News Report for standing up for what is right.

  10. Thank you Mary for your thoughtful analysis; obviously, what we are being told from our ‘elected leaders’ (numerous form letter responses that all basically say the same thing), that these new laws and procedures are not in any way intended to affect chronic pain patients, but how can they say that when A) They KNOW and ENCOURAGE the DEA scare/bully tactics to health care providers/pharmacist (as well as patients) with the threat of their license, B) Closing down a MAJOR medication distributor in Florida, C) NOT using or enforcing really, any safe-guards, such as the Florida Database, to separate the abuser and those that divert their medication from actual legitimate pain patients.

    They in reality created a free market AT THE PHARMACY by limiting such a small amount into our state, resulting in the highest bidder can have the medication at whatever set price (cash) the pharmacy wants? And who can afford to pay these ridiculous amounts of money, in cash, OTHER, then actual DRUG DEALERS?

    The other pharmacies, just don’t want the hassle from the state (DEA), so do not order, or order such a small supply so they won’t get a not so friendly visit from the DEA.

    They (state officials) are hiding behind these inflated numbers, which oddly seems to have stayed the same for the last few years at least (7 people a day die from OD blah blah blah)…and will have a new batch of numbers shortly before election to imply these ‘tactics’ were successful. I cannot believe people still believe the media hype over these medications. YES, they can be dangerous, in the wrong hands. But, they are equally if not MORE so dangerous NOT having them in the RIGHT Hands!

    A drug dealer/addict will always have choices, but a legitimate pain patients have NO choices available to them. They cannot just ‘take whatever’ without breaking their pain mgmt contract and losing pain care altogether, so it is either hope you can get your medication filled, or NOTHING, because MOST pain patients have to take a drug test EVERY visit (like a criminal, to prove they ‘haven’t broken the law’), so they have no choices–just can’t take whatever is available.

    Makes me SICK the way the same form letters ‘acknowledge’ the problem…six months and the responses are the same, tactics, and results. And they still sit there and pat themselves on the back like they actually accomplished something. Wake up, you only made quite a few shady pharmacies really wealthy, and raised street prices to abusers who are then more at risk to buying whatever else and taking the added risk with that.

    I am ashamed of our politicians and LE/DEA officials for tackling a problem, with NO REGARD or fail safe for those caught in the crossfire.

  11. Thank you Mary for advocating for better treatment for Medullary Sponge Kidney. I never in my life thought that my life would have taken such a turn when I was diagnosed. I want whatever it is that can lead me to a more normal life. It would be THE ANSWER IF SPECIALISTS figured out HOW to treat us without medication or repeated surgeries as a bandaid. It’s been 10 years and I have tried it all and I still have daily pain and I still have a family to take care of. There has to be more hope for us other than to be left with finding a doctor that is even willing to take us on OR keep us as patients. MY doctor said he would rather I change primary’s because he doesn’t know what to do for me. I have kidney stones!! It blows my mind that is not enough to get proper medication!

  12. Thank you for this informative column. It is heart breaking to know that people with real pain are treated this way. The fact that it is being made difficult for pain patients to get their medication is disgusting. I would like one of those descision makers to walk in a chronic pain patients shoes for a day or better have them WATCH one of their loved ones suffering unnecessarily…maybe that would help them understand. Thank you Mary, I look forward to your articles.