Why Conventional Medical Doctors Fail Fibromyalgia Patients (and what to do instead)

Why Conventional Medical Doctors Fail Fibromyalgia Patients (and what to do instead)

By Donna Gregory Burch.

Within six months of my fibromyalgia diagnosis, it was evident to me that recovery was not going to come from a conventional medical doctor (MD) doling out prescription medications. I have way too many health problems for them to be solved during a routine 15-minute doctor’s visit.

Donna Gregory Burch

I haven’t seen my fibromyalgia specialist since 2014, and I doubt I ever will. I’ve given up on the conventional medical model because it is a dismal failure when it comes to treating chronic conditions like fibromyalgia.

Now please don’t misunderstand me: I’m not saying every conventional MD is bad. There are still some good doctors within our medical system.

But if you have fibromyalgia, you’re never going to get better if you rely on standard medical treatment as it exists today. Here’s why the conventional medical system is failing the fibromyalgia community and what to do instead.

Reason #1: Fibromyalgia is complicated.

Conventional MDs are trained to listen to symptoms, diagnose the cause and prescribe a treatment within a short duration of time.

But fibromyalgia is not like the common cold or a urinary tract infection. It doesn’t go away by taking medicine for a week.

Fibromyalgia symptoms are numerous, random and diverse. Multiple systems in the body are affected. Put simply, fibromyalgia causes too many problems for a conventional MD to manage within the confines of the current system.

Reason #2: MDs don’t have the time.

As I alluded to earlier, the average doctor’s visit is about 15 minutes in length. That works for simple complaints like toenail fungus. It doesn’t work when a patient comes in with a list of 20+ symptoms.

I understand why our doctors get overwhelmed. They’re used to 1 + 1 = 2, and we’re walking in and expecting them to be a master at calculus.

Reason #3: Most MDs don’t know jack about fibromyalgia.

We assume our doctors know more about our illness than we do, but sadly that’s usually not the case.

To be fair, it’s really not their fault. Fibromyalgia research is still in its infancy. We don’t know what causes it or how to effectively treat it.

And as new research slowly trickles out, it gets overlooked because doctors have little free time to read up on the latest studies.

What’s the result? Our doctors keep falling back on the same ineffective treatments they’ve been recommending for more than a decade: Exercise, Lyrica and Cymbalta. Oh joy! Those treatments may work for some of us, but not for most of us.

Reason #4: Many conventional MDs aren’t willing to try new things.

Even when the typical fibromyalgia treatments fail, too many doctors are afraid of deviating from the mainstream standard of care. When we ask about an emerging treatment we’ve read about online, we are met with a blank stare because 1. our doctor hasn’t heard of it and/or 2. it’s not on our doctor’s mental list of safe and approved treatments.

I’m sure this lack of risk-taking is partially due to the fear of medical malpractice lawsuits, but it’s a real detriment to patients who are basically sent home to suffer.

Reason #5: Fibromyalgia patients need more than symptom management.

We will never recover as long as our doctors focus only on managing symptoms. The truth is we need more than a doctor; we need a detective. We need a doctor who will look at our entire spectrum of symptoms and try to figure out the root cause of them. We don’t need someone who just keeps writing prescriptions in an attempt to cover them up.

As I have said many times before, our bodies do not go haywire for no reason. There is an underlying cause (or more likely, causes) for fibromyalgia!

We need doctors who are educated in thyroid and adrenal issues, heavy metal toxicity, mold illness, chronic Lyme, parasites, food sensitivities, mitochondrial dysfunction, calming the overreactive stress response, multiple chemical sensitivity and the myriad of other factors that can contribute to fibromyalgia symptoms.

If you ask your conventional doctor about any of the things I just listed, chances are you will get that blank stare again. They will have no clue what you’re talking about because their drug reps have never mentioned any of those things. (And yes, I’m fully aware of how jaded that last statement sounds.)

What to do when conventional medicine has failed

The only progress I’ve made in my health journey has been with the help of doctors who are not part of the conventional medical model. I’ve had the best results with functional medicine doctors and those who practice integrative medicine. I’ve also heard positive things about naturopaths and osteopaths.

What do all of these medical providers have in common? They tend to look at the health of the body as a whole – not just individual symptoms.

Unlike conventional MDs who usually take a band-aid approach to illness by prescribing drugs to cover up symptoms, these practitioners try to look deeper into the underlying causes of why the body has broken down. Then, they treat THAT, not just the symptoms.

Most of them understand that addressing chronic illness is much like peeling an onion. Oftentimes, there is no ONE cause for chronic illnesses like fibromyalgia. There are usually multiple reasons (see my list under #5 for a few of them) why a person has fallen ill. They take a more investigative approach to medical care.

So how do you find a doctor who practices in this way? A few resources include the Institute for Functional MedicineDoctors of Osteopathic Medicine, the American Association of Naturopathic Physicians and the International College of Integrative Medicine. Each of these websites has a find-a-practitioner tool.

You can also try googling your locality name, fibromyalgia and one of these keywords: naturopath, osteopath, integrative physician, functional medicine.

Obviously not every doctor in these fields is going to be an expert in fibromyalgia. You’ll need to do your research to find one who is knowledgeable.

Another drawback is that some doctors in these practice areas do not accept health insurance. It may take some research to find one who does.

So, what should you do if there’s no way to access these types of practitioners?

In that case, I would try to find an open-minded doctor in your area and then purchase two copies of Dr. Ginevra Liptan’s book, “The Fibro Manual” – one for yourself and one for your MD.

Dr. Liptan is a fibromyalgia specialist who also has fibromyalgia. “The Fibro Manual” is a step-by-step guide for both patients and doctors, covering Dr. Liptan’s integrative approach to treating fibromyalgia.

There’s a chapter on how to effectively partner with your doctor on treatment and an appendix in the back with citations to research and other helpful information for your healthcare provider.

In my opinion, “The Fibro Manual” is the best fibromyalgia-related book on the market right now. Every fibromyalgia patient should read it.

Now it’s your turn: Have you ever worked with a fibromyalgia doctor who practices outside of the conventional medical model? What were your results? 

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 8 comments for this article
  1. Colleen at 10:55 am

    Maybe the insurance companies need to expand care from functional medicine Dr.’s and include medical marjuana in their prescription plan. But to take away the only thing that cuts down my pain (opioids) is a sure way for suicide rates to increase. Great for all of those patients who have cured their fibro. To me I think ALL fibro patients should be given the Fm/a test https://fmtest.com because I have seen and heard so many people say they have fibro (misdiagnoses is rampet) I have seen people say just their neck hurts or just their hip hurts that is not fibromyalgia both sides and upper and lower body all must exhibit pain, uses some areas my flare but the sensation of the whole body pain must be included. These people may actually have a condition that CAN be helped and maybe even cured. Unfortunately when Dr.s don’t know what’s going on they tend to slap fibro label on to many patients and the lack of the medical community not knowing how to treat us is a shame. I have seen countless Rhuematologists, neurologists, physical therapists, etc. none have helped with my pain besides my pain Dr.and even he doesn’t get fibro but at least my pain levels are mostly controlled. Not everyone can keep throwing money to all these Dr.s let alone drs. That don’t take my insurance. I have a cabinet full of lotions and potions that other people recommended but none have helped me.

  2. HJ at 5:47 am

    F.S.T. –

    I take opiods, too. I see a lot more value in adding additional treatments to support my pain management. On the other hand, I’ve tried physical therapy and I got to a point where I didn’t progress and didn’t have additional pain relief. It was time to move on. Yet, my opiods allow me to do a modest gym work-out and I do stretches throughout my day.

    I value self-care like epsom salts, aspercreme (for me)/biofreeze/arnica gel (whichever is most appropriate for the type of pain and area of the body being treated). I use a TENS unit. I love my heating pad and invested extra money that I don’t really have in order to get a higher quality one. I put money into comfortable bedding (money I again, don’t really have). I use an acupressure mat, which was near impossible to tolerate initially (and certainly may not be a good fit for everyone). I’m trying to learn about things like foam rolling and trigger point self-treatment. I’m getting trigger point injections…

    I tried acupuncture and was shocked that I felt far WORSE after treatment, but that’s a “your mileage may vary.” I used to go for massage, but the benefits were variable and short-lived. I’ve settled for the hydro-massage bed at the gym.

    What I’m saying is that I don’t think pills alone are the answer, but I also acknowledge that I can’t afford alternatives that aren’t covered by insurance. Mixed feelings. It’s been a combination of things that have kept me afloat, though.

    I don’t know if you do these other things as well, or your own self-care routine. I won’t assume that you do or don’t. I just wanted to see that I understand your point — I wish I could pull a physical therapist out of my pocket during my workday or stop to take an epsom salt bath… the pills certainly have their place in my treatment and I couldn’t manage without them.

    I’m also afraid to lose access to them. I would lose so much – probably my ability to continue to work, my means to afford health insurance and to be independent (at age 38, I don’t want to burden my parents with me returning home, even if it were a viable option — my own health issues would make it hard for me to live with them and they’d have to modify their own living situation if I were to move home again.)

  3. Stacy Cooper at 5:19 pm

    Although I have been officially diagnosed with FMS by a Rheumatologist, the new Rheumatologist in my area doesn’t see Fibro patients. In fact to get my diagnosed I had to make a three hour drive to the big city but my insurance now will only allow me to go locally. It’s a catch 22.

  4. F.S.T. at 1:38 pm

    Ms. Burch, I always love reading your sassy (in a positive way) blogs and posts, and love your passion about the illness that has sidelined many of us. I’m going off on a little different tack here, but I feel one that keeps floating to the top with the clinically significant chronic pain community.

    The issue I, and many others have is the treatment of pain. Most, if not all, of us were diagnosed long ago. We’ve done EVERYTHING known to man in response:
    We’ve tried the wide variety of diets.
    We’ve tried exercise, ranging from swimming (one of the best because of zero stress on joints, but who has access to indoor pools 24/7/365?) to walking to aerobics to every description of them all.
    We’ve tried eliminating stress. (Good luck with that one in 2017 and beyond.)
    We’ve tried acupuncture, mindfulness, guided imagery, and other basic mind games.
    We’ve tried physical therapy.
    We’ve tried electronic stimulation.
    We’ve tried assorted creams, rubs, salves, oils, and lotions.
    We’ve tried them all.
    Hell, we’d probably try our dog’s food if we thought it would guarantee pain relief!!
    We’re looking for the MOST REASONABLE, COST-EFFICIENT, READILY AVAILABLE, CONVENIENT TREATMENT THAT WORKS FOR US.
    That treatment is OPIATE THERAPY. We chronic pain patients don’t get addicted; we may develop tolerance, but never do you see a chronically ill patient exhibiting addictive behaviors. We use our medications responsibly because we know how it feels to be without it. Thus, guaranteed compliance. YOU DON’T HEAR A PEEP FROM US IN THIS REGARD!! We value our pain relief and wouldn’t dare compromise it!!

    Here’s my takeaway from what I call “The War on Pain Relief.”
    Imagine this scenario:
    Say I’m in the throes of pain and in tears, rocking and writhing in bed. I have a choice of trying to shower and dress with great difficulty, having to take breaks often. Then driving – almost impossible – the 25 miles to physical therapy, waiting in unbearable pain for a half hour, then barely getting through 40 minutes of treatments that don’t help anyway, then the 25 mile return trip, which is a nightmare because even bumpy roads can trigger unrequited Fibromyalgia pain. Going through the awful discomfort of getting undressed, back into bed, to continue writhing and crying all night without sleep.
    # OR #
    Writhing and crying, taking 8 steps to my medication container, and taking a dose.
    Pain relieved.
    In addition, the pain relief allowed me to cook a meal for my family, maybe repot a plant or two, and play with my grandchildren.

    Which of the two choices of pain relief make more sense? There should be no debate. But common sense has been replaced by big, pervasive powers that be.

  5. Susie D. at 12:03 pm

    Great article. It addresses many of Fibro patient concerns.

  6. Lindy Brockington at 11:32 am

    “What do all of these medical providers have in common?”

    They don’t take health insurance. That’s what they have in common, at least here in Tucson, Arizona. And even if they did, my insurance doesn’t cover “alternative” treatments. So, what is someone who’s still fighting for her LTD company to pay her disability and who has limited income supposed to do? I bought the book, I’ve done many of these things, nothing has made any difference. I’m still taking a very low, daily dose of an opioid and gabapentin, both of which help my pain, but only a little bit. Today I was rejected, yet again, by a new doctor who supposedly takes care of FMS and CSF/ME patients. I have a PCP who’s great with paperwork for my disability, but he admits he doesn’t know much of what to do with my disease. He’s never done a physical exam on me and has refused twice to do a Lyme test because he says “we don’t have Lyme disease in Arizona” It’s no wonder people like me have a high suicide rate. We’re in constant pain, nobody wants us as patients and even if they did, we wouldn’t have the money to pay for it.

  7. Patricia at 9:45 am

    After 30 years of practice as a veterinarian under my belt, I developed fibromyalgia. I was trained in traditional western medicine. And I was good at it. After an acute fibro flare and subsequent chronic pain issues, I was forced into retirement. After working with 7 traditional physicians (including 3 rheumatologists, 1 neurosurgeon, and 1 neurologist), out of desperation I finally sought out a integrative physician. With his help, I finally got off opiates (after 7 years), got out of bed, and became functional. I was filled with skepticism every step of the way, and researched his every suggestion and diagnosis. Dr. Liptan’s book was also extremely helpful. My new doctor followed her program, so I knew what to expect. Knowing that the most common cause of death in fibro patients is suicide, I can truthfully say my new doctor (and Dr. Liptan) saved my life.

  8. Chrissie at 4:04 am

    This is a confirmation article. I was diagnosed in 1989 with Fibromyalgia, then getting chronic Lyme in 2013. (diagnosed in 2015)

    I tried their medications, too many chemical sensitivities. Too many food sensitivities too, even the odor of popcorn and paprika can cause me great health issues now.

    Thank you for your careful and thorough article. Blessings!

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