10.10.2016

Why you shouldn’t blindly accept your fibromyalgia diagnosis

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This column on “Why you shouldn’t blindly accept your fibromyalgia diagnosis” originally published on NationalPainReport.com. It is being republished here with permission from the editor. This post contains affiliate links. 

A Canadian study found that up to 2/3 of fibromyalgia patients may be misdiagnosed.

I’d like to preface this column by saying I believe fibromyalgia is real. 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 and 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 may be 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.

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Fibromyalgia patients need better treatments. So why are researchers wasting time and money on the obvious?

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Comments

  1. Lynnie says:

    Very well-written with a down-to-earth perspective. You mention fibromyalgia is a diagnosis of exclusion. Yet oddly, it was the very first thing my rheumatologist told me I had. She did her exam and said “well you definitely have fibromyalgia.” I tried to explain numerous times (in fact Im still a trying to get through to her) that my pain is in my joints only. It’s in a lot of my joints but not all. The joints affected are symmetrical. I have Sjögren’s syndrome as well she says. I can buy that because my mother has it. I am absolutely convinced I have been misdiagnosed and that I actually have rheumatoid arthritis or lupus. I cannot get her to listen and I’m at my wits end. If I switch to a different rheumatologist the wait time is six months minimum and what if the new one is even worse?? I’ve beendealing with this for about 10 years now and I a so tired of even hearing the word fibromyalgia. It’s not that I don’t think it’s real, I just think it’s inaccurate for so many people. Over diagnosed and not even really very well understood. It does not explain my symptoms and I’m made to feel like a hypochondriac. Finally (and begrudgingly) they agreed to do imaging in my hands and wrists, which I am still waiting on. Is it too much to ask to not want to end up crippled?

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Lynnie, I can feel your frustration from here! I’m so sorry for what you’re going through! It’s obvious your current doctor isn’t listening to you or respecting you. It is so important to find a good doctor even if it means waiting and taking a chance on getting a physician that’s worse. Even if that happens, I would keep trying to find the right doctor, however long it took. It’s imperative that you get properly diagnosed so you can get the right treatment for whatever condition you have. It sounds like she didn’t even do bloodwork to rule out RA or lupus, which is just BASIC stuff that any physician should do. 🙁

  2. Thank you so much for this post! Resonates so much with me. I was misdiagnosed with fibro in July this year, and was exercising, trying to eat well, cut out caffeine, etc and kept getting sicker. In December, we finally put my pieces together: I have HEDS and Chiari Malformation. Now that I at least know what is wrong, I am working on a better treatment plan and feeling way better! Knowledge is so powerful.

  3. I started having symptoms in July of 2015. I went to my doctor with leg aches, burning feet, and fatigue. She tested me for Lymes disease which was negative so she said it was viral. I continued to not really feel great but tolerable. In September of 2015 it hit me hard. I had the worst fatigue and my body hurt so bad I could hardly stand it. I missed many days of work. Things got worse. I was losing my hair, I developed severe joint pain, my feet were becoming numb, I could hardly stand for more than a few minutes because my legs would start burning like fire, gastrointestinal problems, thyroid issues, brain fog, memory loss, poor balance, dental problems, and the list goes on. I had thousands of dollars of tests done and nothing specific was found. My doctor refers to me as having fibromyalgia but has not put that in my medical record. Last spring I saw an article by Consumer Reports about the risks of taking Ciprofloxin antibiotic. It was an OMG moment for me! I am 100% certain I have been floxed. I was poisoned by antibiotic. I have taken fluoroquinolones on three different occasions. The more you take them the higher the risk of horrible side effects. There is a black label warning on these drugs. If you have unexplained pain and symptoms and you have taken fq drugs, you may have been floxed. Please read about it! Your doctor will not admit or acknowledge poisoning from Fq’s. You are on your own for trying to recover. It will be a long and painful journey which I am still going through. Read, read, read! It’s the only way you will begin to feel better no thanks to the medical profession.

  4. Virginia Kaplan says:

    Well folks….you all might be interested in my…”fibro” condition…..it is actually the poisoning I suffered from the antibiotic….Levaquin….8 years ago……Levaquin is a Fluoroquinolone Antibiotic….just as Cipro and Avelox…they come in many forms…Oral, IV, Eye drops, Ear Drops……..PLEASE if you have been diagnosed with “fibro” and EVER yaken these meds….even years ago….research Fluoroquinolone Toxicity……..If this relates to you, please join the other known victims, (10,000) on the various Facebook groups…..the Fluoroquinolone Toxicity 24/7 Live Chat Group……there you will find, love, support and the information you need to more ahead……..DOCTORS will not tell you this info! Also check out the latest FDA Warnings on Levaquin, Cipro, and Avelox……..our grassroots movement of victims…..succeeded in bringing this “toxicity” out to the world…….

  5. I was diagnosed with Fibro even though my symptoms didn’t totally line up with the diagnosis. I started out with severe abdominal pain which was assumed to be IBS but the severity was puzzling. Still every test came back normal and it was until the GI order exploratory laperscopic surgery did they find the problem. My part of my large intestines had come unattached to the abdominal wall. Had surgery at Johns Hopkins and declared fit after that…then the migraines, herniateddiscs, sever osteoarthritis, noisy joints, chronic myofascial pain and several surgeries more surgeries later ( gall bladder, cervical fusion, abdominal wall repair…) did anyone suggest Fibro migh be the wrong diagnosis. Turns out I have Ehlers Danlos-H…which explains it all…still approx 9 years of health issues and Dr’s appts., surgery etc and finally pain dr says “you know, I think it is EDS, not Fibro bc your joints are so bad ” I have the joints of a 75+ year old and I am mid 40s. While the diagnosis helps me know what it is, wish I’d known sooner bc I would have done some things differently.

  6. Dawn Montana says:

    Have you taken an antibiotic for a sinus infection or Bladder infection???? Cipro, Leviquin, the generics???? These drugs side effects cause crippling effects that the Doctors don’t relate to the drugs, we have been poisoned, my side effects started a month after I took Levifloxicin, they did every test and ruled out everything, I am four years out. It was a year after I took the antibiotic when I figured it out and I am very angry, I had a mystery disease that the Doctors don’t treat because Big Pharma causes it, they treat the symptoms with drugs, there is help, thousands of people have figured out what happened to them and we now have the FDA labeling the drugs as Black box, but it is slow getting out to the Doctors, please google Floroquionlone toxicity it causes Fibro!

  7. It needs to be said, however, that fibromyalgia often co-exists along with many of these other conditions, like myofascial pain syndrome. Of course, then it’s all the tougher to treat.
    I don’t want to dismiss your advice though..definitely keep on searching if you need more answers. I”m glad you finally found yours!

  8. Allison Marshak says:

    I was diagnosed with Chronic Lyme disease in 2013. After many treatments with little results, in 2015
    after I moved to Florida, I contacted my Lyme-literate doctor, Dr. Kenneth Singleton from Maryland, author of the Lyme Disease Solution. He told me that, new in the diagnosis of Chronic Lyme, there are 2 definitive tests when taken together provide an accurate diagnosis: the Ispot Lyme Test (Pharmasan Labs/NeuroScience) and Polyclonal Borrelia Culture from Advance Laboratory Services). Neither are covered by insurance. It took 8 weeks to the get results, both of which were negative. I no longer had Chronic Lyme disease. Then, because of all the symptoms I experienced including severe malaise, all over body aches and pain, severe fatigue and many others, I saw a rheumatologist who diagnosed me with Fibromyalgia based on the tender point tests. I also had The Fibromyalgia Test approved my Medicare from EpicGenetics. This blood test was positive. Unfortunately, I haven’t had much luck with MD’s including alternative medicine here in NE Florida.

    • Hi Allison,
      Like you I was misdiagnosed with Lyme and chronic Lyme but truly have fibromyalgia. This needs to get out to people too. I was pumped with antibiotics from 3 different LLMD’s who all clinically diagnosed me despite my negative results with Igenex. I did many tests at Igenex and they all varied a bit even though they were all negative. Wow you saw Dr. Singleton! I live in Maryland and always wanted to see him. I hear he’s amazing. How much were the tests he recommended?

      • Allison Marshak says:

        Hi Hope,
        Just getting back to this page. Dr. Singleton is
        amazing. Such a smart and kind human being!!
        The two tests together cost about $800 (I think)
        but it was well worth the investment. I had already
        moved to FL from Reston and spoke with him on the phone.
        If you see him, please give him my best!

  9. Katie Shephard says:

    From a docs point of view its difficult because we get complaints (as above) for over investigating (and its inappropriate investigating everyone who presents with fatigue and muscle aches (probably 90% of people i see) and for under-investigating. Hard to find a happy medium. Most of the above differentials are really easy to exclude on simple bloods and for a lot of them, the management is the same – lifestyle.
    Its a tough one for all.

    • Dawn Montana says:

      Please please ask your patients if they have taken a Floroquinolone antibiotic, the side effects don’t happen Immediatly, please check with the FDA, as they now are recognizing the side effect and the permanent damage they cause thousands of us and more then we know because it takes time to blow up. Please message me with any questions, or Google Floroquinolone Toxicity,

  10. pat james says:

    This sounds alot like me though I have hypothyroidism and have been a diabetic for 30yrs.Really interesting reading thanks for sharing..xxx

  11. Shannon says:

    Hi! Thank you so much for the article. For the first few years I was sick I wasn’t even seeing a proper doctor. They tried me on a few things but no luck. I finally got a charity program that let me see a real MD and we tried a short course of prednisone. Bam! Almost all symptoms were gone. Since then I’ve been through a battery of tests, including one for lyme, but everything comes back negative. Still my symptoms persist despite trying almost all medications (I can’t afford lyrica, so not that). I was on meloxicam for a while and it helped initially, then stopped. We’re trying methodrexate now and it’s helping, at least with the chest pain, and I seem to be moving a bit better. It’s not helping with the muscles, but the joints seem to be working easier.

    I apologize for all of the information, but I feel like the back story was necessary. All of my lyme tests come back negative, is it possible that that’s inaccurate? If it were lyme would aggressive anti-inflammatory measures help the symptoms as they seem to be? I’m coming to peace with the fact that at 30, I’ve been sick most of my adult life and will be for the rest of it, but if I can fix it I want to.

    • Donna Gregory/FedUpwithFatigue.com says:

      Have you had iGenex testing for Lyme? That is the best test for Lyme at this point. The tests given through your doctor’s office are only 50-60% accurate – essentially a coin toss. I was tested at least twice w/ those tests and both times came back negative. Lyme finally showed up on the iGenext test b/c it is more sensitive and tests for more strains of the bacteria. http://www.igenex.com

      I would suggest seeking out a Lyme-literate doctor in your area (www.ilads.org) who can properly evaluate and diagnose you. Many LLMDs use iGenex testing.

      You might find this post helpful. It guides you through the process: http://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/

      • Shannon says:

        Thank you so much! I love my doctor, but he may not be aware of how inaccurate it is. Both he and my rheumatologists are frustrated (but amazingly not giving up on me). I’ll see if I can find someone else!

  12. Denise Bault says:

    Since Fibromyalgia has over 200 various symptoms, it’s a hard diagnosis to accept. Some doctors use it as a “catch all” phrase if they can’t figure out what is actually wrong with a person. (Shame on them!) The diagnosis may or may not be accurate, Unfortunately, there is no REALLY accurate test at this point in time, so doctors send you from one specialist to another and each specialist has an opinion about their “specialty.” If you do get an accurate diagnosis, and I believe I have one in my case, then when I start having another weird symptom or pain I often think, “It must be the Fibro…”
    The last two times I had unusual pain, one was actually a sinus infection (found on a dentist’s X-ray as only my gums were hurting,) and the other showed degenerative disc disease and bulging discs in my lumbar region found after an MRI. It’s very confusing at times. It’s no wonder they (meaning everyone who doesn’t have it or have a clue about it) think we’re crazy! If they had all these weird symptoms, they’d be crazy too! (Crazy with pain, crazy with fatigue, crazy with IBS, crazy with sleep apnea, crazy with sensitivities to light, noise and smells, crazy with depression and anxiety…you get my drift.) So when you do develop a new “weird” symptom, do your research and if need be, get it checked out. You never know what else it may be. It might actually be something curable that can give you relief! Can I get an Amen to that?!

    • Donna Gregory/FedUpwithFatigue.com says:

      I agree with you entirely. It’s a bad habit to label everything as “just fibro.”

  13. Judi Martin says:

    Very similar story, and I have a list of 50+ diagnosed conditions, after years and years of tests/seeing 12 different specialists. if it is any help to anyone I have Mixed Connective Tissue Disease and my Rheumatologist wrote that Fibromyalgia is far more common amongst MCTD sufferers, with about a third of MCTD patients having it too.

    • Donna Gregory/FedUpwithFatigue.com says:

      Funny … I was actually diagnosed w/ MCTD when I was 19 years old but then my symptoms basically disappeared until 2010 when I started having health issues. I was ultimately diagnosed w/ fibromyalgia and eventually Lyme.

  14. glafira says:

    The biggest problem is…how on earth do you get your doctor/-s to actually even consider looking into other illness!? And actually do more tests or consult specialists!? And so on…. I have had no tests 2hatsoever, they wont even see me, as they only consider me **the crazy bitch patient…..** lalala it is in her head and referr to psychiatric clinic!!!! I am so pissed off you cant imagine, but there is nothing else to do for me. They wont let me and certainly not believe me anymore…. Also they have apparently diagnosed me to have rheumatic arthritis, without telling me!!?? And without any tests!!! And I have never even said anything about pain in my joints….that is like the only spots i don’t have the npain!! Am at the end of my rope, hanging by a thread, literally.

    • Donna Gregory/FedUpwithFatigue.com says:

      It sounds like your first step is finding a new doctor. 🙂

  15. Georgene says:

    Excellent advice and a lot to consider! Thank you for sharing your journey!

  16. I’m just wondering how they can say that when they don’t know the reason for fibromyalgia. Of all of the people that I have met (and there have been a lot) with fibromyalgia they have hardly ever discovered the reason for it or even another cause. I’m also curious what the 2/3rds have found out that there fibromyalgia is?

    I am actually totally opposite from you and I was misdiagnosed as to having Lyme and Chronic Lyme. This happens to. If people want to rule out Lyme I wouldn’t start at a Lyme Literate Medical Doctors. They are always sure to clinically diagnose you with Lyme regardless of how many negative Lyme and Co-Infection tests they see. Most also don’t take insurance and charge a fortune. I would start by having a primary care doctor or a regular doctor running a Lyme test and using Igenex. You do have to pay out of pocket for the test but at least you’ll know that you’ve used the best lab available for testing and if you’re negative won’t spend the money that I did seeing three LLMD’s.

  17. Cheri Manning says:

    Your medical history parallels mine in that there were years of Drs. and misdiagnoses. One test and treatment after another. I DO understand that Fibromyalgia is a diagnosis of exclusion, but one would think this could be done in a more timely manner. I can remember after 5 years of “running around” one Dr. finally said, I think you have what they call Fibrocytis. When I asked what that was, he told me it was the box that they put me in when I didn’t fit into any of the other ones. I was in so much pain and so tired by that time, that when he said, the good news is that it won’t kill you, I was almost disappointed. What a terrible thing to feel. One Dr. told me to go home and “get a little” from my husband. OMG. I sat in my car dissolved in tears wondering what to do now. 34 years later, I have not come much further. The insomnia, the pain is almost too much to bear sometimes, and I don’t think the medical field knows much more either.

    • Donna Gregory/FedUpwithFatigue.com says:

      I agree. Researchers and doctors are pretty clueless about fibromyalgia and chronic pain in general. The so-called treatments they’ve come up with us are the equivalent of basically throwing crap at a wall and hoping some of it sticks (works).

  18. I kind of started laughing because it sounds a lot like what I’ve been going through the last 8 years….
    my last MRI showed T2. Signal in the cerebral white matter ,demyelinating process or chronic small vessel ischemic disease progressed for age. What the heck!!!????
    Does anyone know what in the world that ‘s supposed to mean?

  19. Betty Beck says:

    I am not satisfied with my diagnosis of Fibromyalgia. I have been trying to figure out what is going on with me and so far I have not. I have not given up yet, still trying.

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