Caught in the Crossfire: You Don’t Look Sick

Caught in the Crossfire: You Don’t Look Sick

Jeanne Hyatt is 56-years old and lives in Florida. On the outside, she looks like any other normal, healthy person. She could be your aunt, your next door neighbor or one of the ladies in the garden club.

Things are not always what they seem however; Jeanne is not healthy. She has an extensive medical history which includes fibromyalgia, chronic fatigue syndrome and chronic bursitis in both of her hips, which requires the use of a cane when she walks. Jeanne also suffered a severe case of endometriosis, which resulted in infertility and four laparoscopy surgeries. She was hospitalized with her neck in traction for a week due to an automobile accident, and was stung on her left foot by a sting ray two years ago and still experiences pain in that foot.

Jeanne also has a condition called neurally mediated hypotension, which is known as “the fainting reflex.” It occurs when there is a miscommunication between the heart and the brain that causes an abnormally low blood volume in the heart’s ventricle. This causes a sudden drop in blood pressure which drains the body and the brain of energy. Because of this, Jeanne suffers with frequent dizziness, sometimes passing out, and this condition affects her vision and causes extreme fatigue. She has severe insomnia too.

Jeanne Hyatt

“I wake up every morning in pain. It feels like I was just run over by a steam roller or like someone beat me up,” Jeanne told me. “It’s not in any one area, but over my entire body. Everything hurts.

“It’s mostly muscle-type aches but it is also joint aches and sharp pains over my whole body;  like little lasers are attacking me, sometimes in my shoulders, sometimes in my hands, my legs, my arms, neck, every place imaginable on the body, constantly throughout the day. It never stops or goes away. It’s relentless.”

Even menial tasks such as folding a load of laundry or going to the grocery store leaves Jeanne’s muscles aching and forces her to be bedridden, sometimes for several days. She has to do simple things like bathing and getting dressed in increments, resting after each task is complete before attempting another one. Vacuuming her small apartment puts her in bed for a week. Everyday things that most take for granted are torturous for her.

Florida’s Pharmacy Crawl

Some would say Jeanne has endured a long streak of bad luck. Since the state of Florida initiated a war on drugs, that streak continues to plague her every single month.

Earlier this year the pain management and internal medicine doctor Jeanne had been seeing for six years sent her a letter stating that he had decided to stop seeing all chronic pain patients and would no longer be prescribing pain relievers because of increased pressure on doctors in the state.

Jeanne started going into withdrawal and had to quickly find another physician willing to treat her. One doctor gave her a 7-day supply of medication to buy her some time. She had to go back for an additional 3-day supply in order to make it to her appointment with a new pain management doctor.

A few months ago, the local CVS that she had used for two years stopped stocking her medication, forcing her to do the “pharmacy crawl” each month. Some CVS stores in Florida have gone so far as to blacklist certain doctors, making it against company policy to fill any prescription for pain medications from these doctors, although the criteria they are using to determine which doctors to include is not clear.

Every month Jeanne has to travel to five or more pharmacies to find one willing to fill her prescription. She says she gets conflicting information, strange and disparaging looks from pharmacy staff, and feels like she’s being looked at as a drug abuser.

Legitimate Prescriptions Not Being Filled

There is no doubt that pharmacies have to be more cautious than ever before, because of the way things have escalated, and they now feel they have to police every prescription that comes through the door. What they don’t take into consideration however, is that while they are stopping addicts from obtaining these medications, the pendulum has swung too far and they are now preventing legitimate patients from receiving the medications too.

Many patients are being forced into withdrawal, having to endure brutal symptoms, sometimes for months at a time. There is no balance.

I was led to a website recently, where pharmacists discuss the “proper verbiage when refusing to fill a C2 (Schedule II narcotic) medication.” On this website, it is clear that some pharmacists are uncomfortable with the situation they’ve been put in, and seem to be concerned about the patients’ well-being. Others seem to have an antagonistic attitude toward patients, based solely on what medication is written on their prescription and nothing else. Several of them admit to lying to patients to avoid having to fill their prescriptions.

While pharmacists do have the right, and a duty to refuse to fill any prescription they deem questionable, one has to wonder how they can justify the number of prescriptions they are refusing to fill on a daily basis as ethical.

The state of Florida started a program in 2009 called the Florida Online Reporting of Controlled Substances Evaluation program or E-FORCSE. The purpose of the program is to prevent doctor and pharmacy shopping. What is happening instead, just as Jeanne Hyatt explained, is that pharmacies are causing pharmacy shopping by refusing to fill legitimate prescriptions. In some cases, pharmacists aren’t even checking the database. I’ve seen it firsthand. I’ve had several pharmacists look at what is written on my prescription and hand it back to me, saying they can’t fill it, without going anywhere near a computer. Other patients report the same kind of treatment.

Jeanne expressed her frustration recently when she was interviewed by the ABC affiliate in Tampa and asked, “What state, what country do I need to move to in order to have pain relief?”

That is a question that many Floridians are asking.

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 others in chronic pain.

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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Cynthia C

I was diagnosed in 2005 with Fibromyalgia, first I’d like to say that I was happy to know that it was not life-threatening disease or condition even though sometimes I felt I’d be better off if I died, at least I wouldn’t be in all this pain I have had several doctors since the diagnosis and after a couple of years each one gave me that same look as if I were lying about the way I felt. It’s very uncomfortable to have a doctor look in your face like I’m concealing a lie to obtain pain medication for reasons other than pain. I’m fed up with the looks and I would never think about selling any of the medication I have been prescribed for pain. I know what it feels like to be treated like an addict and if a person has smoked pot or used illegal drugs they have to be scrutinized worse and really prove that their pain is real and not from withdrawals of illegal street drugs, even though Marijuana is known to help relieve some of the chronic pain people experience. I say allow medicinal marijuana in ALL states, it will also prevent the stress that is related to using marijuana therefore causing “less” pain.

linda

Wallgreens did this to me and refused to give my prescription back even. Many pain doctors offices are near a pharmacy and so patients go there for convience and then the blackball the pain doctor calling him a pill pusher

Keyanna

I completely empathize with Jeanne for I suffer with Chronic Pain Disease also. And with the “New Laws Of The Land” enforced, Jeanne and 1000′,s upon 1,000,s more in Chronic Pain are being forced to endure even greater suffering … Pharmacist’s refusing to fill “Needed” Prescriptions for Pain Medications and/or refusing to even stock Narcotic Medications … Doctor’s either fearful or simply unwilling to “Treat” the Chronic Pain Patient. It is difficult enough as it when a person suffers with unrelenting pain to perform what for most people are ‘ simple ‘ activities of daily living… without Government Control over Medications to provide some Quality Of Life. Everyone needs to be gravely concerned with The State Of Affairs, which has been mandated … those who do not suffer never know ‘universe forbid’ … when they may take a slip-n-fall, car accident, etc., and, be in need of relief. My heart cries for you Jeanne. Blessed Be!

christine madsen

I deeply empathize with Jeanne. I ,too, have lived in chronic pain for many,many years-in my case back pain,unrelieved by surgery or physical therapies. after years of managing the pain with HOURS of bed rest,ice and heat-I have begun to take pain medicine.
I recently had another surgery and was shocked and confused and humiliated when i was refused my pain medication on the schedule prescrribed by my own doctor. it was a nightmare,it was bad medicine-
I do understand the predicament -I am well aware of the abuse that takes place-but to victimize pain patients by not giving us necessary medication is the wrong , cruel and potentially life threatening choice. shame on cvs,shame on the state of florida!! let’s get some letters out to our legislators!!!

beloved

my daughter has stage IV breast cancer w/ mets including liver n bone. she has been treated like a drug addict by pharmacist and a doctor filling in for her physician who was on travel. doctor lowered her pain meds which upset her pain management and the pharmacist lied and told her she did not have any refills left. the cancer center had to to call the pharmacist and he then filled the prescript. so maddening. besides the pain meds are helpful but have a host of side effects that patients have to live with as well as the pain. i am for the legalization of cannabis since the goverment/FDA is bogus in this regard. if ppl cannot get their meds and even if they can cannabis is an natural alternative. but the FDA n big pharmacy doesn’t want cannabis legal because they cannot control mother nature. thank you.

beloved

all the more reason to legalize cannabis.

Barb Conn

I live in Ohio and in January they were going to start cracking down on our medical doctors who prescribe medicine too. I wasn’t aware of the “Drug Mill Bill” that had been passed. I have had a back injury on the job in 2006 that had been treated with various non-invasive procedures that were not effective and in 2010 I underwent a lumbar fusion which also was not effective. After the last procedure I had done before the surgery, I began having issues with my bladder. I wasn’t able to urinate properly. I was sent to a uro gynocologist who said my muscles inside my body were so spasmed that she had never in her career felt anything like it. She said it was supposed to be soft and it felt like cords inside my body. I also had muscle spasms everywhere. I was sent to Physical Therapy. The Therapist copied the entire book of muscle execises. She said there was not a muscle in my body that was not affected. They first thought it was fibromyalgia but now they are saying no it is an auto immune disease. I too woke up in horrid pain like the lady. But this is my story of how it was handled before I went to the uro/gyno. In November, after an appt with my family md had been with this practice for 17 years, mind you. Went to the pharmacy and the pharmacist says I hear your doctor is leaving. So, next week I have my son in and ask him if he is leaving. He says yes and gives me a card with the new practice in a nearby city and tells me that he will be there after January 1st to make an appt then. He gives me all my meds till 12/25 and I think well if I run out he isn’t leaving till Jan 1st I will be fine. Then, Around mid December I call the new office so I can make an appt for Early January. They ask me are you on pain meds I say yes. I tell them what I am on and they say He can’t see you. So, now I am faced with having to find a new doctor. I try to get an appt with another doctor in the practice after talking with my pharmacist about who might be most likely to prescribe in the group. I get an appt and this guy is going on about how he can treat me medically but he can’t help me with my pain and he says I have too many pain patients already. I have other issues a genetic blood clotting disorder, diabetes and high blood pressure so he says the kidney dr wants you off the ibuprofen and just pick up my coat and calmly walk out the door and I said I would rather be dead than to live like this another day in pain. And he says well I would… Read more »

Julie

Very well written Mary! Thank you for writing on this subject! I am what appears to be a young healthy fit mother of five wonderful girls (3 of ours and 2 step children). On the inside I suffer, I suffer physically and now mentally because of what my disease is doing to me. I wish more people like you understood what people who are sick go through! Tennessee also has patients doing the “pharmacy” crawl”, I don’t understand the pharmacists positions on filling and not, if you go in wearing sweats and your hairs a mess they won’t fill saying your in withdrawals, if you go in dressed nicely they won’t fill because evidently in Tennessee if you dress nicely you don’t take pain medicine, you sell it. Real pain patients don’t sell their meds because they need them. I grow an unbelievable amount of kidney stones because of a rare congenital kidney disease, I would love one of these people who do nothing but judge to spend a day in my shoes! I’m smiling on the outside and dying on the inside!

Thank you Mary!

Art Hanscum

Excellent, informative article. This scoop sheds light on one of the little known but most challenging human rights issues of our time.

Cary

I am entirely fed up with this countries systems… Its time to make serious changes. This is ludicrous, that a person in this type of condition is forced to endure further pain and suffering. There is a Better Way Which Must Be Found!

Barb

This is a crime! I feel blessed that I do not require these meds, but any of us could be put in a position at any time to need them (chronic illness, car accident, etc). What a shame that the very people these drugs were made to help are now made to feel guilty about taking them. How awful to be in pain and be denied relief when it is available.

Chris

Interesting how the Virginia Medical Board used this so-called war on pain-killers to put a Lyme physician out of business, just as protective legislation for Lyme treatment was hitting the state capitol floor.

Another curse about controlled substances is how each state’s prescription laws can differ. Don’t assume that you’re set with a bottle stamped refill when crossing state lines. Mississippi, a real freak case, turned my refill down and said I needed an original doctor’s note, even though I was in the pharmacy’s computer records; I had to go back to Louisiana to get my meds. Call ahead to a pharmacy in the state you’re going to be in. And don’t think that in these situations, your doctor’s staff will be flexible or empathetic. Your pain, and your withdrawl symptoms, no matter how endangering, are your responsibility/problem.

I love the title of this article! To look at me, you wouldn’t think that there was anything wrong with me. In fact, most chronic pain patients are regular looking folks, our impairments not apparent. But we are different. For reasons most of us still strive to understand, our lives were changed in an instant; a car accident, violence, a fall or even a surgery gone bad… We all have our stories. One thing we all have in common, is the reality we now live. That reality is that we are labeled. There are the medical labels such as Chronic Pain, De-habilitating Illness, Disabled…or by the more common society labels; Lazy, Whiners, Depressed, Drug Seeking, Dependent…Crazy. I was diagnosed with a form of Trigeminal Neuralgia, Trigeminal Neuropathic Pain, (TNP): facial nerve pain resulting from unintentional injury to the trigeminal system from facial trauma, as in my case. It is a VERY PAINFUL condition. It affects the left side of my face (2nd branch of the Trigeminal Nerve). TNP is dreaded complication of facial surgery and is commonly known as the “suicide disease” as a result of the higher than normal rate of suicide from its sufferers. While the disease itself is not a terminal condition, the intense, unending pain inflicted upon those who suffer from it can cause it to be. We have all lost things because of our chronic pain: Our quality of life, our independence (financial, emotional and physical independence), and in many cases, our dignity. Most of us have spent years looking for cures, medical breakthroughs and actual miracles. Unfortunately, even with all the technology and medical advances, we are the ones that cannot be ‘cured’. We are left to continue our life, but continuing a life in daily, agonizing pain, doesn’t really seem appealing to most of us. Our quality of life has severely and permanently been damaged. The purpose of Pain Management is to improve our quality of life. But, more and more, our quality of life is at risk from societal fear and ignorance. Unless one is truly afflicted with Chronic Pain or an Illness, it is impossible for a Well person to comprehend the magnitude of what two little words can mean. It isn’t about self-pity. It is about dignity, respect and compassion. When asked, most Well people will attest to their good nature and understanding of those with medical issues. But, fortunately for them they cannot begin feel our actual pain or the daily struggles trying to manage our pain which sometimes can be worse. We are being penalized when in actuality most of us are responsible, law-abiding individuals that want the same things as anyone else. We are not addicts. We are dependent on our medications, but we are not addicts. There is a difference. Pain management does work for us. It works, because we make it work. We have to if we want any quality of life. Thank you Mary, and American News Report. E11/Jennifer

Hollie Navarre

What a shame to be so sick and have to travel from pharmacy to pharmacy to get it filled! I just can’t even comprehend that! SOMETHING has to change! I live in Michigan and I also have chronic pain from kidney stones and I LIVE IN FEAR that I will not have my medication that helps me live in pain. There should be laws that protect patient’s that have to live on medication. It’s horrible that we are at the mercy of our doctor’s and pharmacy’s now!

Nancy

I live in Florida too and I have the same story, except my respected urologist still prescribes for me. My pharmacy of 20 years is suddenly “out of stock”. When I go to get it filled other places, as soon as the clerk sees what it is, they walk it to the pharmacist, who shakes their head, and they come back and say they are “out of stock”. If you do find somewhere to fill it, they want all your other Rx’s too, before they will fill the opioid. Then next month, they are out of stock and it goes on and on. Thanks for fighting for legitimate pain patients.

Dawn

This article was eye-opening and heartbreaking to think people are treated this way. In my opinion this is not the solution to the problem this country is facing regarding prescription pills. Why are legitamate patients being punished? They did nothing wrong! They don’t want to be in pain and only take pain pills to function. Many pain patients have tried alternate therapies (diet, physical theraphy, counciling) for pain management. As a chronic pain sufferer I am thankful I don’t have these issues getting my pain medication. Who wants to drive all over creation while IN PAIN? Isn’t it enough we are in constant, debilitating pain? We shouldn’t have to fight the system too…this is very sad!

Unhinged

What an utter disgrace….. I can identify with this story, unfortunately. I have a rare, genetic, connective tissue disorder called, Ehlers-Danlos syndrome. My body produces faulty collagen, and the results are devastating. I have severe, painful joint dislocations in my spine, Hips, sacroiliiac joints, knee caps, both shoulders, foot bones, jaw, pelvis & wrist. my cervical spine dislocates frequently & compresses my spinal cord. I’ve had multiple joint surgeries & constant disabling pain for years. If not for the daily use of Schedule ll opioid pain medications, I would never leave my bed. Fortunately (& unfortunately), I look perfectly healthy. It is a blessing not to look the way I feel, but a burden to feel as though I have to “PROOVE” the torture & pain I go through. Thankfully, I have a brilliant, compassionate doctor who treats my pain, and a pharmacy that treats me with respect, & is aware of my condition. That hasn’t always been the case! I have been talked down to, belittled, accused, and even laughed at by both pharmacy staff & Pharmacists when trying to fill a prescription for pain medication. It is abuse, pure and simple. What they don’t know, is that it takes every ounce of energy some days, just to get to the pharmacy & get home in one piece. The way this country treats people with serious pain conditions is a complete disgrace. Often times, it is coming straight from the top….doctors (who call themselves “responsible”), pharmacists, medical students, and nurses too. People think if you take pain medication, you are somehow “less than human”, a liar, a faker, a “drug seeker”, a scammer, a junkie. Most of us are NONE of those things. We live with daily, debilitating pain, that requires the use of strong pain medications, just to walk, function, dress, bath, eat, sit, work (if lucky), care for our families, get to our numerous doctor’s appointments. We deserve respect, compassion, and kindness. We treat pets in pain, better than people in pain, and it needs to STOP. Most people I know, couldn’t live ONE day dealing with what I go through. Despite the myths out there right now, along with the “war on people in pain”, these medications DO relieve a significant portion of our pain, even longterm, they ARE safe when taken as directed and not mixed with contraindicated substances, and the benefits DO outweigh any risks associated with them. Until you have lived with serious, relentless, severe, pain, you have NO clue how hard life can be. More and more people will start killing themselves if they don’t have access to adequate pain relief. It’s THAT simple. The PAIN crisis in this country is far bigger than any drug abuse crisis that exists. Pain patients are being tortured by lack of access to medications, pharmacy crawls, doctors hiding behind their fear of scrutiny by the DEA, and misinformation that is being spread about the use of opioid medication. For many of us, it is the… Read more »