I have an eating disorder, but not the one you are thinking of. It is not the one where I am obsessed with being thin and wasting away to nothing. Been there, done that. I slayed that demon when I was in my twenties. No, I have a different kind of eating disorder. You see, for about one week every month, every time I eat I have pain in my chest and upper abdominal area as well as severe nausea and sometimes vomiting. My doctor has already eliminated any gastrointestinal problems as the cause, meaning I have to endure more tests to solve this conundrum.
Meanwhile, I am left with episodes of pain and nausea. Now I am scared to eat. I see the numbers dropping on the scale. I have to admit that at first I was thrilled. My old demons tried to tell me this was good. But I knew better. Now I am scared of the numbers falling. I am scared when my clothes simply hang on me. I am scared of eating.
The way the healthcare process works in the US means it could take months if not years to find an answer to my health problems. You know what I mean: initial appointment with specialist takes a few months to get, then it takes another month to get first tests done, then another month or two to get appointment to see the specialist again. This can repeat over and over again. I first saw my current GI doctor back in January. In that time, I have had two tests completed plus bloodwork. Now I am waiting another month to have another test done with a two-month wait until the doctor has another appointment opening. My biggest fear is that my weight will drop down to critical level or malnutrition will force me to the ER. I cannot imagine going through this delayed process if I had cancer. Americans like to make fun of social medicine in Canada and the UK for their long service wait times. But, HELLO PEOPLE! We are just as bad in the good US of A!
There is nothing scarier than knowing your health is going downhill and being at the mercy of a slow system of care. It is crazy that in this day and age with the level of technology we have that healthcare has not moved out of the 20th century.
According to the Substance Abuse and Mental Health Services Administration, there were 2.1 million people addicted to prescription opioid drugs and 467,000 people addicted to heroin in the United States as of 2012. Why are so many people taking these drugs illegally? Are they all bored teenagers wanting to experiment with drugs? Are they down-on-their-luck adults looking to escape their depressing realities? Maybe. However, I want to present another type of drug addict. It is the addict that looks like your average American – going to school, working hard, raising a family, following their dreams. And then one day pain enters their life, a pain that does not go away. A pain that refuses to heal after the injury that caused it has healed. I am talking about chronic pain.
There is a lot of debate regarding how many Americans suffer from chronic pain. The Institutes of Health’s 2012 study estimated that around 100 million people suffer from chronic pain (defined as anyone with moderate to severe pain occurring within the past four weeks). The 2011 Journal of Pain study estimated a more conservative number of 39 million people (defined as anyone with frequent or constant pain experienced most days within the preceding three months).
If we leave behind the semantics of defining chronic pain, we still face a staggering number of people with this condition. According to an article published by the National Institutes of Health, only about 5% of pain patients who take opioid painkillers as directed actually abuse them. So what does that mean? It sounds like the DEA and FDA want to throw the baby out with the bath water by decreasing access to pain medications for chronic pain sufferers. Why are we willing to punish 95% of chronic pain patients to a lower quality of life simply because the other 5% has a problem? Should we not do a better job of weeding out those 5% and getting them treatment options that do not include pain medications? It is great that health insurance plans cover pain medications and drug addiction programs. But why do they not cover more options in between these two extremes?
If pain patients had more evidence-based treatment options covered by their health insurance plans… If the National Institutes of Health allocated a greater percentage of funding to pain research… If we, as a society, did not label people in pain asking for help as drug seekers… If we would only show a little compassion to those in pain…
Once upon a time in America, pharmaceutical companies decided to get richer off of patients’ pain. They had some good intentions -like relieving pain-and they had some nefarious ones -like wanting to make stakeholders richer. They created a huge ad campaign targeting both doctors and patients to use their opioid medications. As a result, pain was better managed. However, since doctors were rarely shown the big picture of what opioids can do, millions of people became addicted to them, eventually turning to heroin after their doctors cutting off their legal supply.
Big Pharma encouraged doctors to over-prescribe opioid pain medications because the manufacturers only revealed data that supported the safety of these medications. Doctors were encouraged to treat chronic pain liberally with opioids, never knowing the very real costs to patients. Doctors treated pain patients with opioids as a first step instead of trying other pain medications and/or alternative methods (e.g., physical therapy).
In 2012, 259 million prescriptions for opioid medications were written; and since 2000, a 200% increase in overdoses by opioid medications has occurred. This may appear cut and dry on paper. If we limit the supply of opioid medication available in the U.S., then overdoses will decrease. Whenever there has been a decrease in opioid pain medications both in terms of prescription and overdose, heroin has simply moved into its place. In fact, according to Time magazine:
This rise in cheaper, purer and more readily available heroin has coincided with a law enforcement crack down on illegal prescription pill providers.
According to the American Society of Addiction Medicine, the rate of overdose deaths and the sales of opioid pain medications both grew in tandem to each other from 1999 to 2008. They also state that one in four heroin abusers started with opioid prescription pain medications. These gloomy statistics would be enough to make me jump to the conclusion that opioid medications are bad for us as a society. However, research has shown that when the supply of opioid medications decrease, abuse of its illegal counter-drug increases. See this:
The marketplace for abused substances tends to balance itself when the availability of one decreases.
… to be continued.
In recent months, the FDA/DEA has enacted new rules and regulations regarding the scheduling of certain pain medications. The main change was bumping up hydrocodone to Schedule II. This change may appear minor on the surface but it is having a ripple effect throughout the healthcare community. Doctors are more leery of prescribing the medication due to fear of being investigated for improper prescribing practices. Pharmacists are scared to fill valid prescriptions due to fear of going against company policies and losing their jobs. Pharmacies are writing company policies that deter their employees from filling prescriptions. And what happens to a patient who relies on these medications every day? They end up in the Emergency Room going through withdrawal which gets them labelled as addicts.
Another medication that was also rescheduled this year and which has not received a lot of press is Tramadol. It went from being unscheduled to now being a Schedule IV. This also appears to be a fairly innocuous decision. However, it was not enacted without its own headaches. Most patients were surprised to have their prescriptions voided as soon as the new rule went into effect. Pharmacies were told it was to their discretion to fill refills on prescriptions written prior to the change. Most pharmacies saw this as an opportunity to void all refills. The scheduling change happened under the radar, overshadowed by the Hydrocodone issue. Therefore, many doctors who regularly prescribe Tramadol missed or forgot about the change and wrote new scripts on the wrong prescription pads (and yes, doctors have different pads for scheduled versus non-scheduled medications). Regardless, even with a new prescription in hand, many patients were turned away by their pharmacies. From my own experience, my pharmacy went out of its way to NOT talk to my doctor. They persisted in calling my doctor’s office after hours day after day. They even had the gall to tell me they were leaving messages for the doctor to call them back, which is not an option if you call my doctor’s office after hours. After a week of playing phone tag with the pharmacy, I finally had to take matters into my own hands. I was truly appalled at the level of either incompetence or desire to not fill my prescription that was expressed by my pharmacy. Needless to say, I am happily switching pharmacies as soon as my health insurance changes on January 1st.
Now I don’t rely on traditional pain medications every day, something I am eternally grateful for. But my heart goes out to those who do. If I am having this much trouble getting Tramadol filled, I can’t imagine the heartache and pain they are. Doctors and pharmacists are taking the oath “first, do no harm” to literally and are erring on the side of doing nothing with the mistaken belief that that is was good healthcare is.
On March 26th, 2014, after yet another snow storm, the FDA held a public hearing for patients, their advocates, and others with interest in the treatment of fibromyalgia. For four hours the doctors who work in the Division of Anesthesia, Analgesia and Addiction Products. They were attentive and asked pointed questions. The discussion focused on the multitude of symptoms patients experience, how well (or not well) medications have helped patients, the non-drug treatment options (including holistic and alternative treatments), the side effects and withdrawal symptoms of medications, and what an ideal medication would look like.
Attendees came from all over the country and even from other countries, like Mexico. Patients opened up their souls to the FDA panel, hoping that our desperation for treatments that actually help will be developed. I heard such heartbreaking stories. We all appear to be in the same boat – even though we can manage our symptoms to a certain degree, it does not mean we are living at a higher quality of life. We are treading water and getting nowhere. Fibromyalgia patients have to change their entire lifestyle in order to cope with the limitations of this illness, and that does not even include all the co-morbid conditions we have. The only people I know who do not have another chronic illness with fibromyalgia are those that doctors simply have not diagnosed yet. Fibromyalgia is an opportunistic illness.
In a few months (after additional comments have been submitted), the FDA will release its report on fibromyalgia based on everyone’s comments and concerns. I have high hopes for this document. It can help doctors understand the illness better. It can help pharmaceutical firms fine tune their research. It can help university researchers conducting their smaller research. It can help medical students learn about this illness. It can help politicians understand the illness so they can pass effective bills. It has the potential to improve the status quo like nothing before it.
Hello to one and all! The purpose of this blog is to express my not-so-unique perspective as a person living with fibromyalgia, one of the many misunderstood and invisible disabilities in our ironic world. The fact that most people with this illness were originally extremely active, workaholic, Type-A personality individuals is one of the Powers That Be’s biggest jokes. There is nothing like a huge slice of humble pie to steal the wind from our superhero capes.