Fibromyalgia: the overmedicated ‘patient’

“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.

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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. medications 001Fibromyalgia 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.9781451608403_p0_v3_s260x420 51ZSZqIhLZL._SY344_BO1,204,203,200_

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:

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11 comments

  1. Lois Roelofs says:

    Thanks, Barbara, for the cautionary tale regarding medication. Thought of you recently as we took Via Rail across Canada and I tried to picture my Canadian blogging acquaintances. Lois

  2. Gail Lauricella says:

    I

    I have had fibromyalgia for over 40 years I feel as a result of a virus. In the beginning it was not a recognized illness.
    I often say I have been extremely blessed to have never been given heavy duty meds. I have taken soma and amitryptiline at bedtime for over 25 years and have a very active life. I have tried every modality out there and mostly I do well just adjusting my lifestyle and expectations of myself. I eat healthy and gluten free with also eliminating any foods that seem to cause issues at the time. I find exercise on a limited basis and yoga are very helpful. My heart does break for all those that find health elusive. May
    God give you each the strength each day to cope.

    .
    ……..0…

  3. Barbara Keddy
    Barbara Keddy says:

    Hello Lois: I am envious of you taking Via Rail across Canada, especially this time of year. What a vast country!
    Thanks for your comments and hope you are well,
    Barbara

  4. Barbara Keddy
    Barbara Keddy says:

    Dear Gail:
    It seems as though the majority of us who developed fibro did so after an acute episode – either a virus, accident, hospitalization or a social crisis of some sort. But, I believe we had the pre disposition towards developing this syndrome, through either nature or nurture, I know not which!
    Your life style is admirable and it is encouraging to hear you have not been overprescribed. Adjusting our lifestyle is so important. We do expect a lot of ourselves instead of just living day to day, moment to moment, taking the good with the bad! Difficult to do and requires discipline.
    I appreciate your good will,
    Barbara

  5. Susan says:

    I was one of the unfortunate woman who was overpresribed , with aniti depressants, mood stabilizers,anti anxiery medication, along with pain meds.I was in the middle of a divorce and as a result of not knowing whether I was coming or going and no concrete diagnosis , my ex had me thrown out of our home accsuing me of being a drug addict. This was the beginning of the end of a happy life for me and my children. I finally took myself off all meds. against doctors advise ,but I was so unstable and making horrible decisions. After 2 years of suffering with the pain and not workig I went back on pain medication and anti anxiety medication. However the guilt is consuming me and of course no one understands. If your walking and talking people assume you are fine. Its such a lonley disease/syndrome. Some days I am great and actually feel hopeful. These days are becoming far and few between. I was married to a narcissitic man and of course did nothing to his standards no matter how hard I tried. When we went to court his lawyer told the judge I was mentally ill and should not have my children. I fought as best I could , but lost everything. They are now grown and we have a good relationship. Mynew hope was going holistic , but I am hearing this is not going to help me either. So deseperate and crying way too much.If not for my belief in God I dont know where I would be.

  6. Barbara Keddy
    Barbara Keddy says:

    Dear Susan:
    Your story is indeed a sad one. I agree with you- it is a sad and lonely dis-ease with little available professional help.
    We are the only ones who can help ourselves lead a less painful day. I also agree that there is little which will help ‘holistic’ in terms of supplements. Nonetheless, with easy exercise like walking on our good days, mindfulness meditation, and in your case since you believe in a God, prayer would be helpful.
    Avoiding sugar and caffeine is also helpful. Most importantly- avoiding situations where your stress level is not easily managed. I wish I could wave a magic wand for all of us. Unfortunately, we are the ones who have to become our own physicians. Difficult to do when we face many of the hurdles you have been and continue o face.
    Very best wishes,
    Barbara

  7. Imelda says:

    Dear Susan: your story resonates with me.

    Living well is the best revenge. 15 years ago I took a semester off from school to “do the right thing”, see doctors, and get healthy after experiencing so much pain. I too was prescribed ever increasing doses of medication. Because my body overreacts to lots (bee stings, caffeine, prescription meds- many of which have fillers), the symptoms of fibro were only exacerbated by meds. My family believes that I suffer no pain but either a disease of character (I’m lazy) or supernatural (my mother said I was possessed). I gained weight, broke out in hives, couldn’t finish school, and didn’t have any friends. I slept all the time. I took gabapentin, cried every day, and later read with rage the 2008 lawsuit against Pfizer. (If you take this drug, please google its statistically significant increase in causing suicidal behavior.)

    But I persisted with my health. Realize that most doctors are insecure, defensive, and mistake-prone as any human. They are trying to do the best they can do while you self-report your symptoms. The good ones will realize they cannot understand all the variables in your life possibly contributing to fibro: post-traumatic stress disorder, the microbiome in your gut, early childhood abuse, whether your body has been damaged by an accident but is not obvious until you are shocked by the results of an MRI, etc.

    YOU are the control center. YOU connect the dots. . An average general practitioner will not understand the interplay between a fibro flare-up, your posture, and the microbiome in your gut. In other words, an average doctor only looks at her specialty and does not consider the variables in all aspects of your life, past and present. (Is that medication causing acid to well up in your tummy? Is that hurting the good flora? is that going to cause inflammation and poor digestion? Will that cause pain and tiredness? Which causes you to slump and aggravate a damaged disk in your spine? Now you’re back in bed with your stomach on fire and your nerves blazing? so you take another pill and start the cycle over? I realize this is not strict empirical science, but then again empirical science has not addressed fibro. You have to listen to your body in the mean time and propose your own theory, keep notes, be honest.) Understandably, an average doctor can only do what s/he is trained to do, and if they are trained to pitch drugs at you for a short term fix, that’s what they will do. This goes for the “natural health” guys, too! (an herbalist made me VERY sick loading me with every-increasing doses of FDA unregulated herbs).

    My belief is that fibro is the interplay between traumas, and the synergism of these result in agony greater than the sum of their parts. You may want to explore these traumas and observe how they interrelate and aggravate one another. FIBRO IS NOT IN YOUR HEAD, IT IS REAL.

    15 years later I have consolidated info from different doctors plus my own notes. I have found my path and I am mostly medication free. I must be very disciplined, because I have learned “the rules” my body must follow: strict bed time, excellent posture, physical therapy, a daily practice of pranayama, probiotics, very clean diet, stretch every hour, frequent breaks, etc. It gets lonely because people don’t understand why you need to wear loose clothes and why you’re not going to have a piece of office-birthday-cake; and once again folks say you’re doing it for attention. Must be graceful no matter what.

    Folks who called me a loser now regard me with envy. My skin looks good, I have a rockin’ figure, and I earn more than most girls my age in a respectable profession.

    I can now see that the people who mistreated me are as damaged as anyone else. Yes, pain is always lurking, but it is just physical pain, not the spiritual malaise that plagues my past abusers. Besides, carrying around a grudge only damages you from the inside. I have never felt tougher in my life. God wants you to be healthy and sane and has given you the wits to carry out the mission. Living well is the best revenge – Susan- go for it!

  8. Barbara Keddy
    Barbara Keddy says:

    Dear Imelda:
    Your comments are very heartening for many of us. You have indeed taken control of the important things in your life and it does need to be a disciplined approach. I agree with you regarding past abuses in our lives as I believe that because of the fearful events in our childhoods we have learned to always be on guard and hypervigilant. Your pranayama practice is certainly one that will help you with dealing with these past issues!
    I admire the ways in which you have taken yourself off medications and incorporating a sensible daily routine with which to meet the daily challenges of living with this condition!
    Thank you so much for your encouraging comments.
    Barbara

  9. Barbara Keddy
    Barbara Keddy says:

    Thanks Claire: My advice…check with your family physician before taking any supplements beforehand. Many are not evidence based and if a person takes other medications the complimentary ones may not work well with them.
    Best wishes,
    Barbara

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