Why you shouldn’t blindly accept your fibromyalgia diagnosis

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?


  1. sam steven says

    Very well written article!!! With the information in this comprehensive article, you can work with your primary care doctor to come up with a plan of attack that works best for you. Also, the article really covers the chapter well – https://www.everydayhealth.com/neuropathy/guide/. Thanks for sharing.

  2. Kelli Glover says

    I get so sick of people with Lyme saying Fibro is Lyme. Guess what? Fibro is NOT Lyme. What is the point of trying to diminish us Fibromites? More funding for Lymies (and yes, I have been tested, 3 different times). Please do not tell me it is the ‘wrong’ test, yada yada. Here is one for you. My husband is from Northern Ireland. They have 2x the Fibro cases as the rest of the world. However, it is cold (temperate) and not a very ‘outdoor friendly’ climate. Most of the people dx there are not the outdoor type. Yet their Fibro rate is 1 in 25. The south of Ireland is pretty on par with the rest of the world, but the farther north you get the less outdoor people get (especially women, whom we know make up 90% of Fibro dx). It diminishes us and makes Lymies look “arrogant”. Fibro is REAL. So stay in your spoonie lane and let’s support EACH OTHER. We all are on a crappy journey here. Why you all have to own every chronic illness, I have no idea. Lymies are no more special than the rest of us. I do wish you all good luck but not at the cost of diminishing the rest of us spoonies. And as for ‘studies’, they can be tipped to look a certain way and we ALL know that. I doubt this will even get posted…. we shall see. Good luck.

    • Donna Gregory/FedUpwithFatigue.com says

      I’ve never said fibromyalgia is Lyme. What I have said is that Lyme is the underlying cause of fibromyalgia symptoms in SOME people diagnosed with fibromyalgia, and that is a true statement. Visit any Lyme support group, and you will find a lot of people who started with a fibro diagnosis and later found out they have Lyme disease as the underlying cause of their symptoms. Fibromyalgia is NOT a disease in and of itself – it is a syndrome … a collection of symptoms of unknown origin. Lyme disease is one of those origins.

      • Fibromyalgia is not a syndrome, please quit spreading outdated information. Yes Lyme disease and fibromyalgia are similar but so is MS. Fibromyalgia is a neurological autoimmune disease typically induced by long term stress or trauma that fight or flight chemicals pumping through veins for years causes. In fact, most people with Lyme or coinfections or chronic Epstein Barr…are really in denial that years of stress lowered your immune system and you succumbed to the expression of chronic infection….many people carry the same bacteria and viruses without symptoms…. there are brain scans and muscle biopsies that show dying nerves and blood tests on amino imbalances and mitochondrial damage in this disease. Fibromyalgia is very closely related to multiple sclerosis. It’s likely you have it and no amount of treating Lyme disease is going to help when the reason Lyme infected you so strongly is because you have an autoimmune issue….

  3. Today I am taking my 20 year old daughter to see another Doctor. she was diagnosis with fibromyalgia 10 months ago. She was a gymnast since age 3, then discovered diving (water) in middle school. At the same time going through puberty and the starting of her depression. While still dealing with her depression, she continued with dive, she got injured a few times, sprang ankle, swollen knees, lower back pains… all what we felt were the results of sports injuries. Which made scenes. Fast forward to college, still diving, and all the pains still there, but getting worse. She couldn’t stand it anymore and eventually had to give up something that she loved 🙁 This threw her back to depression, at the same time dealing with physical therapy for a sport she no longer could do. Desperate for answers, her doctor ordered an MRI, and sent her to a rheumatologist who said “it must be fibro.” Even thought this was not what we were hoping to hear, we thought it made sense… at the time. For the last 7-8 months she has secluded her self from friends, activities, exercise, and recently broke up with a boyfriend she adored. Her current mindset is clouded by fear, fear of movement, fear of the future, fear of being a burden on those she loves. My family and I are deep believers in Christ and know that He will see us through anything.
    Tonight she will be seeing another doctor, I have my list of questions and misdiagnosis for fibro in hand. I truly believe she had been misdiagnosed, the questions is what can it be?
    Please if you are a believer, say a prayer for my daughter…fearless strength, courage, and trust in our almighty God for whatever lies ahead. Thank you for listening.

    • Donna Gregory/FedUpwithFatigue.com says

      Whenever someone is young like your daughter and gets diagnosed with fibro, I automatically think it’s possibly Lyme and related co-infections b/c the symptoms of these are basically the same as fibromyalgia. Most people think you have to remember a tick bite, but only 30% of people do. Ticks can be as small as a poppyseed, so they’re easy to miss, and despite what most doctors think, very few people get the trademark bullseye rash. People also think you have to live in the northeast – again, an untruth. Lyme is found in every state.

      I would recommend getting your daughter tested for Lyme, but be aware there are major issues w/ the standard testing (via Labcorp, Quest, etc.), so please consider having her tested through either iGenex (iGenex.com) or DNA Connexions (www.dnaconnexions.com/). These tests cost a few hundred dollars out of pocket but are worth every dollar to get an accurate diagnosis. You might also consider having her evaluated by a Lyme specialist.

      This post will give you a lot of good information about testing and how to find a doctor to have her properly evaluated, and how Lyme is commonly misidentified as fibro: https://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/

      I would also recommend taking this online symptom questionnaire, developed by a leading Lyme specialist, which will gauge her risk of Lyme: http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

      I’m focusing on Lyme in my answer to you b/c that’s the most obvious thing it could be, but of course there are other conditions that mimic fibro.

      You are absolutely right in questioning her diagnosis. My view of fibro has really changed over the past couple of years. I now look at it as a collection of symptoms indicating a much deeper problem, so do your best to advocate for your daughter, and dig, dig, dig to try to find the underlying cause for her symptoms. Her doctors will want to label her w/ fibro, give her meds and move on to the next patient. Please don’t accept that! She is so young – too young to be burdened w/ this for the rest of her life.

      You are welcome to email me w/ other questions, etc. I’m happy to help. I have a soft spot for those who are diagnosed so young b/c my own symptoms began at age 19.

  4. I wasn’t satisfied with my diagnosis, and so I kept finding new doctors. Now that I’ve been diagnosed with lupus, I’m so grateful. Lupus could have been life-threatening if it wasn’t caught early. I think it’s really great you wrote this post and I hope it encourages others, too!

  5. Cheryl says

    I’ve been dealing with burning feet since the end of Jan./2014. The soles will become crimson, & all in between my toes are pink. The feet and/or toes are not hot to the touch, but I can feel them burning. It’s the same with my shins. My shins will also give a pins/needles sensation. My Neuro says the EMG testing is normal, but of course it doesn’t test for small fibre neuropathy. I have never suffered injury, etc. so it’s beyond me how I could even be considered to have ‘idiopathic neuropathy’, although he didn’t say that’s what it is. I am NOT diabetic. I’m awaiting the results of MRI testing which was done Aug.l3. I do have DDD, but I need to know if anything is worse. Also the brain was scanned this time whereas it was not before. I have tender spots inside L & R elbows, same with insides of my knees..shoulder muscles are very sore & tender, as it the muscles that run up the back of the neck & into the back of the head. At the base of the skull, there is tenderness on each side. My hips are starting to ache, as is the backs of the knees. I have an appt. to see a Rheumatologist in just over a week. This referral was done by the Neuro. I don’t see the Neuro again until Oct. 5, so it’s going to seem like a long wait. To be quite honest, I’m hoping there’s something found on these tests, because I’ve reached the point where I need an answer. I get headaches at the back of my head, along with lightheadedness (at times). There are days when I feel general malaise.. I hate living this way. Thanks for reading.

  6. Well written, however, I would like to open this up even further…because Lyme Disease also falls into a much larger category – one that most people do not realise has become a huge, invisible elephant in their health (and that of their family).

    Toxic overload syndrome.

    Toxicity is a huge component going on here – and LD falls into toxicity as ultimately ticks are…parasites. Which, in turn are categorised as toxins.

    My life turned around when I started investigating toxic overload and how to combat what was already going on in my body – and what to do about it to reduce exposure for now and the future.

    We are subjected to 80,000 toxic chemicals and pollutants EVERY DAY.

    The average woman is subjected to 515 toxic chemicals from industrial strength degreasers to carcinogenic and hormone altering substances in their body care products EVERY DAY.

    And then there is our food. Our water. Plastics. Air.

    Toxic overload and toxic body burden are huge issues – from chemical pollutants to parasites, viruses, fungus (candida).

    It’s important to take this into account as well.

    Once I started delving into this, making changes and finding products to kick these buggers out – that’s when the healing began! 🙂

    • Donna Gregory/FedUpwithFatigue.com says

      I agree with you completely. I’ve been steadily changing the products I use, the food I eat, etc., trying to reduce exposure to toxins wherever possible. I can’t say that it’s making a huge difference in how I physically feel yet, but I know at some level it has to be helping.

  7. 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. 🙁

      • Kelly H. says

        I agree Donna Gregory. I’ve seen more than 20 doctors (including emergency room doctors to ‘try on’) over the past ten years. I’ve FINALLY found a decent doctor that listens to me even if he truly doesn’t know what to do next. I respect him because he TELLS me when he’s out of ideas instead of making something up or telling me “it’s normal.” Keep searching hon. You’ll eventually find someone that will listen to you. If you aren’t getting anywhere with your current doctor, what do you honestly have to lose by switching? It may help to look up reviews of specialists around you first. Ask around. You’d be surprised what you learn that way.

  8. 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.

  9. 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.

    • This is what happened when I read about that antibiotic! I was also diagnosed with fibromyalgia, 10 yrs ago. Have you discovered any treatments for this, if a person has been floxed?

  10. 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…….

  11. 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.

  12. 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!

  13. 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!

    • Jolene Flippo says

      Fibromyalgia only exsists in the absence of another known diagnosis. Some people might believe they have Lyme disease AND fibromyalgia, for example, because it’s been put in their minds for years that it’s real. Maybe it is, but I happen to know for a fact that fibro is used as a diagnosis when the doctors don’t know. They also get pretty good kickbacks on the meds.

  14. 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!

  15. 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,

  16. 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

  17. 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: https://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!

  18. 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.”

  19. 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.

  20. 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. 🙂

    • Kelly H. says

      I know EXACTLY how you feel. That’s when I find new doctors. I’ve finally reached a point where my actual words to sh** doctors is “NEXT!” and I promptly walk out without another word. I am pretty great at finding those same “doctors” online and leaving detailed reviews so other patients know what kind of monster they’re visiting.

  21. Georgene says

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

  22. 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.

  23. 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).

  24. 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?

  25. 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.

    • Donna Gregory/FedUpwithFatigue.com says

      I hope you find answers. Keep looking. Don’t give up.

      • Hello,
        I am very similar to your first post.
        It is my personal belief that fibromyalgia is a symptom not a desease.
        That being said my case is abit complex..because i started out in 2005 with pain in left hand wit tingling…and daily calf pain. Than i was in. Bad car accident middle of 2005..causing severe whiplash & mild concusion. The pain in my head and neck was unbelievable and because of it I developed a sleep disorder. ..it was a year later June of 2006 I caught Mrsa, Cellulitis at work.
        After numerous I mean at least 10 rounds of antibotics…some IV some by mouth.. I ended up having surgery to stop the mrsa from spreading.
        Then came chronic fatigue…
        I told dr i couldnt no longer sleep..pain was spreading down all 4 quadrants of my body. Especially my feet. ( restles legg syndrome they said) yet they were swollen, bright red, hot to touch would cramp and viens would pop out all angey looking. Went to foot specialist who did shots than scheduled surgery. Carvus foot structure deformity.
        In meantime My drs tried to diagnose me with lyme as i was camping in NH right before car accident.
        But tests were all negative.
        My mri’s showed multi level cervical stenosis which whiplash did not help. My neck was so swollen it looked deformed for awhile. Along with feet deformed my calfs were deformed. My emg positive for nerve damage..diagnosises were whiplash, concussion, severe anxiety, migraines, visual abnormalities with no clear reason why..degentive disc desease neck, lumbar showed small foci areas of abnormal signal intencity consistand of foci of bone narrow.. Possible early sign of anklosing spondylitis…thoratic-congenital fused t6 vertabra , brain: pineal cyst 7.5mm×6.5mmx5.5mm

        2005 right mastoiditis with fluid signal, and mastoid air cells that show ebhancement on mri in 2007?
        Cervical radialpathy
        Prominence of nascpharygeal
        Myofascial pain syndrome. Peri neuropathy, osteoarthritis, chronic ebv, hypokalemia, restless legs syndrome, etc…
        I was diagnosed with fibromyalgia by the dr. Who discoved the feet and calf birth defects..but who never followed them up..
        Wben yr in chronic pain from multi level spine you will have alk points?
        I finally googled my foot surgery to find diagnose of CMT a commo but acknowledge able genetic neuropathic desease…foot issues postitive..hand postitive.fatigue postitive. Deformity postitive.. I would like to mention even though hand and calf pain preseded all. My feet and calfs looked normal to most untrained eyes. Infact in 44 yrs only 2 dr’s in RI noticed…desease effects 1-2500 people.
        Finally i was reading. a article abt tbi tramatic brain injury …and symptoms…it sounded word for word like me..from inital confusion at accident to eye problems. Migraines, intence severe anxiety, memory issues, no sleep. Only thing i need ed to check was my hormones.
        I made a appt. And boy were they messe up 48 at time still regularly menstruating..my igfi-37 very low, hgh- low. Igf3binding low, d very low, dhea low, testestrone all forms very low, age of 80 year old dr said. Among others..when i say low I mean abnormally low.
        Get yours checked.
        Also on testing Ebv. Antibody panel…my Vca Ab (IGG) 3.82 high
        My Ebna Ab IGG abnormal- 5.00 high..Ab IGM 90= negative
        This is familiar of passing from mother..but I had severe mono at 13 and was hospitalized spleen Liver infected.. I always kept high antibodies i believe because i was always being testing for al forms of hepatitis..because of antibodies or elevated liver enzymes at times?
        I do no Ive always had crash like symptoms before dehydration…
        In any case my encronist turned to me and asked (what the hell is this about) did she test further no? If any of these blood work or mri were tested further I would of never been sent home from my pimary who said ( go home and grieve the old you is dead..learn to accept who you are now) they are so dismissive of fibromyalgia and cfs.. It has to stop…
        I pray to find free genetic testing and a good RI doctor who likes a mystery who will follow up on all mri’s as i dont have fathers side hystery…..dont except fibro its a real symptom which causes symptoms but not the initial illness. Rita


  1. […] I would encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of fibromyalgia patients have been […]

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