“America is one of the few advanced nations that allow direct advertising of prescription drugs, Robert Reich
BigPharma makes huge profits from those of us suffering from chronic pain, fatigue, depression, anxiety, itching, digestive issues- to name a few of the common symptoms of fibromyalgia. Every day we are inundated with advertisements about prescription drugs that would alleviate these symptoms. Equally as rich is the vitamin industry which advocates specific supplements for the treatment of fibromyalgia, few of which are science based. Generally we take them willy nilly without any idea if they are helpful or not.
There is hope with a slow movement to de-prescribe medications, which is especially relevant for those of us with several painful and chronic conditions. However, for those of us living with fibromyalgia we are used to not being listened to by health care providers . Many would prefer to prescribe a ‘pill’ (or several pills) to help with our ailments in spite of the fact that we are often over medicated and highly sensitive to medications. Dr. Jaye Cohen advocates “go low, go slow” , and I am a big advocate of that philosophy. Taking medications on a daily basis when they are necessary for life saving measures is crucial, but even then, what if the quality of life is compromised? What if, like in the case of fibromyalgia, the condition is not life threatening? The answers to these questions are one we have to grapple with constantly as we are the final decision makers. Many of us have sometimes two or three serious health conditions and the medications for each conflict with one another in spite of the good will of pharmacists checking on their interactions. The experiences of people with fibromyalgia are unique and even more so among the community of fibro sufferers. One size does not fit all.
A review of the hundreds of comments I have posted over the years could be a rich source of data. I can attest to the vast amount of anecdotal accounts of medications prescribed that have resulted in what can be deemed over-prescribing and a prescribing cascade. The latter is when a new medication is prescribed to counteract the bad effects of another drug. Fibromyalgia is not a disease, but a dis-ease of the central nervous system. Medications have been found to have only limited positive results. Lyrica and Gabapentin are heralded as the medication for fibromyalgia. The TV ads are plentiful and daily about Lyrica. I have taken both in the past, but the serious weight gain has been a side effect and I found that I needed to constantly increase the dosage for the medication to have any results, often with more side effects. But, we are a desperate and frustrated group of people. We are willing to try most anything, hoping for relief. For some the above mentioned drugs are beneficial; for many, not much works. The above picture is what I had been taking every day, some more than once a day. I worry about the impact on my liver and kidneys. I have decided to come off Gabapentin and in fact, there is not much change to my pain level. Hopefully it will help with my weight issue. As far as my heart medications I adhere to those prescriptions since to this point in science they are, for the most part, evidence based. While I worry constantly about a statin, I am searching for one that does not have side effects like the one prescribed for me in the hospital. But as far as fibromyalgia medications there are none that are effective for me, even though I thought for a time that Gabapentin was doing the job! Now, in hindsight I believe that for me it was the placebo effect. Many though have found it to be helpful and I don’t want to discount their positive experiences.
The books warning of the dangers of polypharmacy are plentiful and many of us want to take control of the chemicals we are taking into their bodies.
But these cascading effects result in multiple prescriptions- one for anxiety, another for sleep, one for depression, another for pain, while still another for digestive complaints and so on. Please read some of the older blogs’ comments ( there are 110 blogs!) and you will probably be aghast, like me, about the ways in which we have abused our bodies with these chemicals. Do not misunderstand me- many prescriptions are absolutely necessary as life saving measures, but those for fibromyalgia are not. I am not blaming the victim. We do what we have to do to find relief.
I have tried it all, homeopathy (which has been shown to be merely water!), acupuncture, herbs, vitamins, supplements- I believe I have partaken of all of the alternative/complementary therapies. None have worked. Much money was spent, time wasted, hopes dashed. What is to be done? We must be advocates of our own health, pay attention to science based prescriptions, watch for side effects, concentrate on other non medicinal or supplemental remedies such as light exercise, watching our diet, mindfulness meditation practice, and avoiding stress. In the end there is not much else we can do other than train our brains (read: central nervous system) and stop thinking we have a disease, but rather a dis-ease. I have heart disease. I have fibromyalgia which is a dis-ease. There is a big difference, but both of which cause worry, pain, and multiple symptoms, oftentimes I cannot differentiate between the two, which is very frustrating. Many of you dear readers, have other chronic conditions alongside of fibromyalgia. It isn’t easy living with them all. But, I do have a lighthearted quote I will enjoy sharing with you:
“I believe gelato is meant to be treated as medicine and taken daily as a prescription”, Betty Brandt.
The following birthday card may be somewhat funny, but there is a sad element of truth in it: