Why You Shouldn’t Blindly Accept Your Fibromyalgia Diagnosis

Why You Shouldn’t Blindly Accept Your Fibromyalgia Diagnosis

By Donna Gregory Burch

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Donna Gregory Burch

I’d like to preface this column by saying I believe fibromyalgia is a very real condition. It exists, and it’s life altering.

With that being said, I think those of us with fibromyalgia should question our diagnosis. I’ve been reading Dr. David Brady’s new book, “The Fibro Fix.” In it, he references a study in the journal Rheumatology indicating only 34 percent of patients initially diagnosed with or suspected of having fibromyalgia actually have fibromyalgia. That means a staggering 66 percent of us may have been misdiagnosed!

Let that sink in for a moment: Two-thirds of us may be living with undiagnosed medical conditions that could potentially be treated!

My own journey is a perfect example of why we shouldn’t blindly accept our diagnoses. I have been misdiagnosed every step of the way.

My first fibromyalgia symptom was extreme fatigue. I was diagnosed with vitamin D deficiency and given a prescription to boost my levels. Around the same time, I was having extreme pain in my right hand, which was diagnosed as carpal tunnel syndrome based on symptoms.

Months passed, and I was still exhausted. Looking for answers, I read a list of hypothyroidism symptoms online, and it mirrored what I was feeling. Thyroid testing showed my levels were in the high-normal range, but my primary-care doctor diagnosed me with hypothyroidism based on symptoms and gave me a Synthroid prescription.

More months passed, and my thyroid numbers went down, but I didn’t feel any better. The pain in my hand had migrated up my arm and gotten worse, so I headed to another orthopedist for a second opinion. This one actually ordered testing, which found I didn’t have carpal tunnel at all!

The orthopedist didn’t know what was causing my pain, so I was referred to a rheumatologist. All of my blood work came back normal, and I was diagnosed with fibromyalgia.

During this same timeframe, I was also diagnosed with overactive bladder – again, by a doctor who diagnosed me based on symptoms and not an actual diagnostic test.

When I finally had a test, it showed I didn’t have overactive bladder. My test result should have been a clue to my urologist that something else was wrong, but he kept treating symptoms without looking for an underlying cause.

Last year, I began to feel burning in my feet. I went to a podiatrist who spent 30 seconds looking at my feet and proclaimed I had plantar fasciitis. Over the next six months, I had three sets of steroid shots in both feet, three laser treatments and several weeks of physical therapy. In the end, I sought a second and third opinion from two more podiatrists. These podiatrists ordered x-rays, an MRI and nerve conduction testing. The verdict? I didn’t have plantar fasciitis! I was diagnosed with neuropathy and referred to a neurologist.

The podiatrists wanted the neurologist to do a thorough blood workup to see if he could identify the underlying cause for my neuropathy. The neurologist glanced at my previous lab results, saw that I didn’t have diabetes and hadn’t had chemotherapy, and diagnosed me with idiopathic neuropathy – meaning the cause is unknown. It was just another fibromyalgia symptom, he said.

When I asked for the testing recommended by my podiatrists, the neurologist said it was too expensive and refused to order the tests. Utterly frustrated, I walked out of his office in tears.

Last May, I was diagnosed with chronic Lyme disease and other tick-borne coinfections. Turns out, all of these little clues that my doctors had dismissed for years now fit together in a perfect puzzle. Pain, fatigue and brain fog are primary symptoms of Lyme (as well as a host of other conditions). Lyme can also cause symptoms that mimic overactive bladder.

And my burning feet? Oh, that’s one of the main symptoms of bartonella, a common tick-borne infection. My three podiatrists should’ve asked more questions when I told them the burning was confined to the soles of my feet. Neuropathy typically causes numbness, tingling and pain in the entire foot.

I have spent the past six years shuffling from doctor to doctor. How did they get it so wrong? I don’t have hypothyroidism, plantar fasciitis, overactive bladder or neuropathy!

Do I even have fibromyalgia, or is that a mistake as well? Lyme is commonly misdiagnosed as fibromyalgia, but it is just one suspect that should be ruled out. Dr. Brady lists more in his book: myofascial pain syndrome, disc degeneration, tendonitis, disc bulges, osteoarthritis, mitochondrial dysfunction, nutritional deficiencies, thyroid conditions, chemical/food sensitivities, medication side effects, rheumatoid arthritis, lupus, multiple sclerosis, cancer, diabetes and the list goes on.

We’re told fibromyalgia is a diagnosis of exclusion, meaning our doctors are supposed to rule out all other causes before coming to the conclusion of fibromyalgia.

But did that happen in your case? Were all of these alternative causes (and many others not listed above) ruled out via proper testing and clinical deduction?

What if you fall into the 66 percent who are misdiagnosed with fibromyalgia? What if your symptoms are treatable, and you could get your life back?

This is why we should never stop looking for the underlying causes of our symptoms. We have to be our greatest advocate, ensuring that our doctors tick off all of the alternatives before labeling us with fibromyalgia. Our health literally depends on it.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia 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 18 comments for this article
  1. HJ at 8:15 am

    Reposting so I can follow – wish there was some way to ask for notifications without having to post. Missed it the first time. Thanks!

  2. John Quintner at 6:01 pm

    I will add a post-script in case people who have been awarded the label fibromyalgia wish to learn how this bewildering situation has come to pass.

    Professor Fred Wolfe, lead author in the 1990 Classification Criteria paper, and of the papers modifying the criteria that followed, has been severely critical of most of the published research on the topic of fibromyalgia.

    The fundamental error that was made by fibromyalgia researchers was not to compare people with fibromyalgia to others with clearly diagnosed chronic pain conditions. Unfortunately, the control groups used in studies tended to be age- and sex-matched controls without pain.

    As those who live with chronically painful conditions will know, disturbances of mood and sleep are common symptoms, as is fatigue. Many have been gathered up under the banner of fibromyalgia without understanding how this has happened.

    Here is the link to Professor Wolfe’s disturbing post: http://www.fmperplex.com/2016/08/30/most-fibromyalgia-research-is-worthless/

  3. John Quintner. Consultant Physician in Rheumatology and Pain Medicine (retired) at 4:39 pm

    Sooner or later we will have to face up to the “inconvenient truth” – that it is well-nigh impossible not to diagnose fibromyalgia in any person who presents to their clinician with chronic pain.

    I agree with Donna that the symptoms are real, but do not agree with her that “fibromyalgia is a real condition” (see below for my suggestion that they are best thought of as a “symptom cluster”).

    For one obvious reason, the pharmaceutical industry has a vested interest in supporting the claim that fibromyalgia does indeed exist as a diagnosable condition. They have invested huge sums of money in the development and marketing of their respective “remedies” for the condition. For many who have taken their drugs, the side effects far outweigh the benefits.

    From my reading of the many comments that have appeared on National Pain Report, an increasing number of people are expressing their dissatisfaction with the current situation, both in terms of the diagnosis and therapy of fibromyalgia.

    Where do we go from here?

  4. John Quintner. Consultant Physician in Rheumatology and Pain Medicine (retired) at 11:26 pm

    MichaelL, perhaps you have not heard the news that the theory of pain arising from myofascial “trigger points” has been refuted (Quintner et al. 2015).

    You say that the diagnosis of fibromyalgia is (to a point) an elimination diagnosis. That may not be quite the case.

    According to a recent paper by Professor Dan Clauw (2014): “In clinical practice, fibromyalgia should be suspected in patients having multifocal pain not fully explained by injury or inflammation.”

    However, Professor then follows the “rheumatology party line” by saying that fibromyalgia “may also occur with other chronic pain conditions like osteoarthritis, rheumatoid arthritis, and lupus.”

    By way of explanation for any apparent diagnostic confusion, Professor Clauw suggests that the pain in these conditions has changed in some unexplained way from being “peripheralized” to “centralized” (by which he means that central nervous system factors are likely to have amplified the pain). You may well ask, how can anyone ever know for certain whether or not such a change in brain neurophysiology has occurred?

    As for asserting a diagnosis of fibromyalgia, Professor Clauw neatly sidesteps the issue by describing such a step as important and perhaps controversial.

    But I agree with you that for some clinicians fibromyalgia has become a diagnosis of desperation.

    References:
    Clauw DJ. Fibromyalgia: a clinical review. JAMA 2014; 311: 1547-1553.
    Quintner J, Bove G, Cohen M. A critical evaluation of the “trigger point” phenomenon. Rheumatology 2015; 54: 392-399.

  5. MichaelL at 8:37 pm

    Diagnosis of fibromyalgia is an elimination diagnosis, to a point. My patients were amazed that I could find their trigger pints so easily. act was, I was a male, and a physician, who had those trigger points! They thought that I was a genius, when I was just a fellow sufferer! The diagnosis is used by some to get the patients out of the office.

  6. Kim Leonoudakis at 6:23 pm

    Thanks for the article. I posted it on my blog because I was also given a Fibromyalgia diagnosis and then told by another doctor I did not have Fibromyalgia. And then given other diagnoses that made no sense at all. I’m glad I didn’t accept it. Unless you see an Lyme Literate MD (LLMD) you do not know that you don’t have Lyme Disease. And neither does any other doctor. I’m really sick of doctors that are so close-minded and are so quick to diagnosis and write a prescription. The CDC denial of chronic Lyme is unbelievable. We have to keep educating the medical community because the denial of Lyme Disease is worse than the denial of AIDS/HIV in the 80’s.

  7. CountryRefuge at 4:50 pm

    I am one of the fortunate (?) ones. I felt lousy–really lousy for about 9 months as I tried to maintain my job; I later found that I had missed a full 1/3 of my work hours during that time. I finally called in and told my supervisor it was time to find out what was going on. I went to my GP and he listened to me, and then told me he suspected I had fibromyalgia and wanted me to see a rheumatologist. My rheumatologist tested and evaluated me thoroughly to rule out any other possible causes, then had me do a sleep study before he would give me a diagnosis–his diagnosis was fibromyalgia. That was in May 2000 and I was 50 years old. Fibromyalgia was a rare diagnosis at that time, especially to have a diagnosis in just 2 months and two doctors.

    Since that time, I have watched so many people go to their GP complaining of being tired and walking out with a fibro diagnosis without any testing. These same people still have a full life and are active with minimal medications. IMHO, that is where numbers like the 66% come from. Fibromyalgia became a fad diagnosis. I’m tired of hearing “I have fibromyalgia and I still walk five miles a day after work, so (implied) you are malingering.” Or the “She has…”

    I don’t mean to sound bitter with what I’ve said. It is difficult for people to understand how life impacting fibro is. When we add in that there isn’t testing to prove it, and then the numbers of people in our lives and in the media who live their lives with ‘some pain’ and/or ‘some fatigue’ as the only symptoms impacting their lives–is it any wonder we have people questioning our symptoms?

    I believe (and know) there are people who have the full-blown symptomatology that defines this disease. I sincerely hope that research as described will result in a vetting of diagnoses and ultimately a better definition of what fibromyalgia is.

  8. Donna Rubinetti at 8:59 am

    The unrelenting burning pain is beyond description. I have severe sensitivity to touch. Even a fingertip touch is painful. At this point the disease has signicantly spread. It began around my rt. shoulder blades and armpit (from a fall down icy steps), and has moved to lumbar spine, sciatic nerve, genital area. rt. leg and sole of my foot. This is all on my rt. side, following the pattern. However, now it’s moved to my left foot and leg. I am terrified and truly disabled. I do not have EDS or Lyme (tested and re-tested). A living nightmare that even Stephen King couldn’t make up. So far ketamine has not worked. I am desperate as you can tell.

  9. HJ at 8:47 am

    Fibromyalgia appears to be secondary to sleep apnea for me. With CPAP treatment, I don’t have the roving pains that I associate with fibro. If I become sleep-deprived, I get fibro-like symptoms.

    I still do have osteoarthritis in my feet, ankles, knees, hips & other joints… and cervical spondylosis. That pain is localized and pretty predictable. The fibro pain would affect muscles and would roam around my body unpredictably. I also had nerve pain sensations with fibro, like the feeling of bee-stings or burning pains. I don’t have these pains with the exception of my foot where I have nerve damage from an injury and sometimes a bit of sciatica, which may be related to changes in the sacro-illiac joint and/or degenerative disc disease (I have a torn disc at L4-L5).

  10. Angelica Heavner at 7:11 am

    Don a Rubinetti, you could actually have both. Do you know what triggered your CRPS? Signs and symptoms of CRPS can range from everything you described to just a few of the symptoms. The number one thing is the unrelenting burning pain that never ends and doesn’t make any sense, sensitivity to touch is another very distinctive symptom the rest very from person to person. Unfortunately alot of people have been diagnosed with both due to CRPS being triggered then other symptoms show up that lead to lymes later. Several have even been diagnosed with EDS after being diagnosed with CRPS a didn’t know they had it. EDS is a connective tissue disorder, typically described as double jointed or accident prone people.
    Hopefully this helps

  11. John Quintner. Consultant Physician in Rheumatology and Pain Medicine (retired) at 1:30 am

    Cynthia, have you considered the possibility that the constellation of symptoms of which so many people complain could be categorised as a “symptom cluster”?

    When we look at the stars in the night sky we can delineate many of the different constellations (patterns) which attracted the attention of our forebears, who gave them appropriate names. The stars in a constellation appear to be close to one another but in fact can be light years apart.

    In the 1980s, North American rheumatologists drew a line around a particular cluster of symptoms commonly present in the community and ‘fibromyalgia’ was born.

    Unfortunately, they were unable to explain how the symptoms might relate to one another or were they able to find an underlying disease process.

    But the symptom cluster which was called ‘fibromyalgia’ appear to be the clinical features typical of activated systems of stress/sickness responses, which have been well studied in animals.

    If this similarity holds true, as I believe it does, there are likely to be many possible triggers of such a response, including infective agents.

    We expect systems that underly our stress responses to be able to switch themselves off when they are no longer needed. The switches (stress response genes) usually work well but for reasons which we still do not understand, in some people they no longer function properly.

    This leaves them with ongoing and often debilitating symptoms which are otherwise unexplained and difficult to treat.

    In my opinion, the most promising options for effective treatment will come from research into the epigenetic mechanisms that change the functioning of stress-response genes.

  12. John Quintner. Consultant Physician in Rheumatology and Pain Medicine (retired) at 8:48 pm

    Rachel, I am unable to find evidence that test which you mentioned has gained wide acceptance within the rheumatology community.

    When it was launched, some of us expressed a fair degree of skepticism as to the test’s ability to diagnose a condition said to be able to co-exist with any other painful condition:

    http://www.fmperplex.com/2013/02/25/junk-science-junk-ethics/

    It seems timely for an independent assessment to be undertaken as to the usefulness (or otherwise) of the FM/a test.

  13. Cynthia at 7:13 pm

    WHere I live, which is in a big city, the only doctors who even take Lyme Disease seriously or who will tesr for it , are alternative medicine doctors and insurance doesn’t cover the testing. It’s quite expensive . There are so many people who have these constellations of symptoms. Like the author , my PCP told me to just live with it, that I have DDD and it’s just part of getting older (I was 60 at that time). I am convinced that American doctors do not know how to treat the “whole person”, they don’t know how to synthesize symptoms into one basic picture of the organism. When you have something complex that goes on and on, doesn’t clear up, they are at a loss. It’s really pretty pitiful.

  14. Rachel at 1:53 pm

    There IS a Fibromyalgia TEST out now. The FM/a test. This poor woman’s case is a prime example of how money, time and effort are wasted because doctors and insurance aren’t including the Fibro test in their diagnostic protocols. It’s time for change! (I don’t work for the testing company. I’m an advocate for efficiency, common sense and an end to suffering.)

  15. Judy Jaeger at 1:09 pm

    I recently heard Dr. David Brady speak at The Medicinal Supplement Summit online. He said that multiple conditions are often mis-diagnosed as Fibro. That Classic Fibro is more rare. That too often people with Chronic Fatigue are thrown in the Fibro diagnosis erroneously. He gave a really good talk & I really enjoyed listening to what he had to say.

    I’ve not been diagnosed with anything other than Degenerative Disc Disease. I no longer have any faith in my doctor, going to see him is a waste of my time. He told me 20 years ago to “learn to live with the pain”…..so that’s what I’m doing, just living with chronic pain….no meds….looking forward to my death, as that will be the only time I’ll be pain free.

    I’ve been complaining for years about Chronic Fatigue, but he doesn’t think I have that. He refuses to test for Hypothyroidism. The symptoms I have all fall in the realm of Chronic Fatigue and/or Hypothyroidism. Brain fog, unexplained weigh gain, sore throat/hoarseness, joint & muscle pain, un-refreshing sleep. I’m not just tired, I’m EXHAUSTED ALL THE TIME!!! Can’t even do simple household chores anymore. I’m just so frustrated by the doctors out there acting like they’re GOD & they know everything. Well, they don’t. They don’t live in my body……I do, and I’ll trust my instincts before I ever trust another doctor.

  16. Don a Rubinetti at 8:52 am

    OMG! Can this be the same for CRPS? I do not have the bloating, sweating, discoloration of a limb, but I do have the progressive linear burning an sweating. Would love to think it could be reversed!

  17. Geawiel at 6:42 am

    I had this happen to me as well. I had a diagnosis of Fibromyalgia, given to me by the University of Washington. This was after 6 years of tests, many different appointment to varying specialties dealing in pan, appointment to neuro surgeons from those who thought it stemmed from my low back, many false diagnosis and many different meds. Fibro seemed to explain everything, though the pain portion didn’t quite fit as my pain is only from the belt line down. Even though that didn’t quite fit, they called it a different type of fibro. I later found out there aren’t different types.

    Two years after treating fibro and getting nowhere, I saw a different neurologist. She wanted to see the skin biopsy the UW had taken. They couldn’t find them, or any record of them. Neither could the company that did the lab portion of the biopsy. So, she performed another biopsy. This time she came back with a different diagnosis. Small fiber neuropathy. Now it makes much more sense why none of the medications for fibro did anything for me. A different neurologist asked me what chemicals I had been exposed to while in the USAF. I did aircraft maintenance the first few years of my career. He told me it is likely due to jet fuel (JP8 specifically) exposure and possibly hydraulic fluid. There really is no way to tell for sure though.

    I’m still stuck not knowing what the other symptoms that were originally tied to fibro are related to. They match Gulf War Syndrome, but I haven’t been able to get out to the VA to discuss it yet. I never pursued that, as I didn’t serve during the Gulf War and I was never exposed to depleted uranium. However, some recent information has come out that it may be the anthrax shot which is causing the issue. That I did get, in a 6 series shot before going to Prince Sultan Airbase in Saudi Arabi during a 2000 deployment.

    Because of so many false diagnosis, I’m still left with that lingering doubt of my diagnosis. It makes the most sense, but I’ve had many doctors rationalize their own diagnosis.

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