02.06.2017

Physician says fibromyalgia misdiagnosis is rampant

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The following Q & A with Dr. David Brady about the commonality of fibromyalgia misdiagnosis was originally published on NationalPainReport.com and is being republished here with permission from the editor. This post contains affiliate links. 

According to Dr. David Brady, fibromyalgia misdiagnosis is extremely common. Up to two-thirds of fibromyalgia patients may have been misdiagnosed, based on the results of one study. So, if you don't have fibromyalgia, what else could it be? Find out here!

When I stumbled upon my first podcast with Dr. David Brady last year, I knew I had to bring his important message to the fibromyalgia community. Dr. Brady’s message is one that I wish I had heard years ago when I was struggling with my first fibromyalgia symptoms, and it’s a message that hit me personally last spring when I was diagnosed with chronic Lyme disease.

So, what is this critical message? Based on the research and Dr. Brady’s many years of expertise, it’s incredibly likely that you don’t have fibromyalgia. Yeah, you read that right. According to at least one research study, up to two-thirds of us may have been misdiagnosed with fibromyalgia.

How it that possible? The fibromyalgia diagnosis criteria are so general that lots of people have been labeled with fibromyalgia when they actually have other conditions.

Think about the implications of that. What that means is that millions of us who have been diagnosed with fibromyalgia may not be receiving the correct treatment, and we may even be living with treatable conditions.

The rampant misdiagnosis of fibromyalgia is one of the focuses of Dr. Brady’s new book, “The Fibro Fix.”

So, I bet you’re wondering: If you don’t have fibromyalgia, what else could it be? Read on for my interview with Dr. Brady. In our interview, we’ll discuss why fibromyalgia is so prone to overdiagnosis, and he’ll identify some of the most common conditions mislabeled as fibromyalgia. He’ll also explain the characteristics of true fibromyalgia and best practices for treatment.

I’ll warn you: The interview is long, but it’s well worth the read!

Donna Gregory Burch: You mentioned in a recent podcast that the diagnostic criteria for fibromyalgia make it prone to overdiagnosis. Can you elaborate on that?

Dr. Brady: The original diagnosis criteria for fibromyalgia [came out] in 1990, and it was established by an expert panel of rheumatologists with what was considered to be the best training and knowledge of fibromyalgia and global pain syndromes. It was called the ACR criteria for the American College of Rheumatology, and they basically locked a bunch of experts in a room and said they’re not coming out until they come up diagnostic criteria for this thing called fibromyalgia.

This panel of experts tried to codify what is fibromyalgia, what are the minimum criteria, and that’s where you got that first situation where the 18 points had to be challenged with pressure, and 11 out of 18 had to be positive [for a diagnosis of fibromyalgia].  It really was a negotiation in a conference room of how many points should you test, how many should be positive out of the number you tested, and it was not a very scientific process.

It basically resulted in criteria where people for various reasons who may have a lot of pain, particularly pain in the muscles around the body – even if it was caused by problems actually in the muscles themselves [like] some sort of myofascial pain syndrome or some sort of orthopedic or musculoskeletal problem – easily fit into that criteria. It was appreciated very early on that this criteria was very prone to overdiagnosis.

Then in about 2010, new modified criteria was again published by the American College of Rheumatology. It was subsequently modified a little bit in 2011, and the biggest change was they took away the requirement for the doctor to go around and challenge or push with pressure on all of these specific areas of the body. Instead they relied on a questionnaire where the patient checked [off] if they had pain in those areas, which is prone to even more overdiagnosis because it’s a subjective questionnaire.

The criteria did bring in a lot of the associated or concomitant issues that you see in fibromyalgia like depression, anxiety, unrefreshed sleep, irritable bowel syndrome, headaches, that the disorder had to be long-standing and chronic, meaning it had to be several months at least in duration, and that it couldn’t be explained by another medical condition.

Some people say it was a leap forward, and that’s what publishings by the American College of Rheumatology … suggest, although other studies suggest this criteria was also extremely prone to overdiagnosis. In a large study by [Mary Ann] Fitzcharles, one of the fibromyalgia experts in the world, using the original criteria, they found that if you had subjects who were diagnosed or labeled with fibromyalgia by family physicians, internal medicine doctors and even rheumatologists, when they were then sent to an expert panel of fibromyalgia rheumatologists, they only supported the original diagnosis of fibromyalgia about 33 percent of the time. What that means is 66 percent of patients diagnosed with fibromyalgia really didn’t have it! They had some other condition which was responsible for their symptoms. That’s worse than a coin flip, right? You’d be better off flipping a coin to determine if someone had fibromyalgia or not, so clearly it’s just not a good enough criteria.

Now there’s a brand new criteria that just came out in 2016. It’s only a mild tweaking of the 2011 criteria. It’s still prone to vast overdiagnosis. There’s still a lot of people who think they have fibromyalgia who do not. Saying that, I don’t want it to be misinterpreted that I’m doubting the sincerity of these folks and that I’m doubting that they have real problems because generally they do. Despite what some doctors might think, these people have better things to do in their lives than just make up these symptoms. They have real problems. They just don’t necessarily have fibromyalgia.

Aside from the diagnostic criteria, which is obviously flawed, are there other reasons people are way overdiagnosed with fibromyalgia?

Some of the symptoms that make up the profile of a fibromyalgia case are extremely ubiquitous in our population, meaning they are extremely common, like long-term persistent fatigue, achiness in the muscles, vague gastrointestinal complaints, mild depression, mild anxiety, insomnia. These things, taken individually, are extremely common. Therefore, when people tend to have a multitude of those problems that gang up on them, particularly if they are a woman in middle age, which is the prime potential person afflicted with fibromyalgia, there’s often a jumping to conclusions … that this person has fibromyalgia before they actually do a systematic workup … to really tease out … why are they fatigued, why do they have pain or achiness, why do they have insomnia, why do they have gut problems.

If you don’t run down all of the other causes for it, you really can’t diagnose fibromyalgia because one thing has been consistent among all the criteria over the years is it’s a diagnosis of exclusion. What we mean by that in medicine is that you have to first rule out every other potential cause of the symptoms before you would ever label it as fibromyalgia. Certainly, the layperson doesn’t do that, and unfortunately most physicians don’t do that before they put that label on somebody.

What are the most common conditions misdiagnosed as fibromyalgia?

I talk about what I call the triad of fibromyalgia masqueraders in my book, “The Fibro Fix.” The first one is actually an undiagnosed problem with thyroid function. It’s usually a hypothyroidism. It could be based in an autoimmune thyroid condition like Hashimoto’s disease, but it’s not always an overt, classic hypothyroidism that might be picked up by your family physician or by a conventional lab test just looking at a TSH level or a T4 level. Sometimes you have to dig a little deeper and look into thyroid physiology with a more complex understanding of it, on how the hormones are converted and how they work with the receptors.

A second one is when you’re having trouble in the cells of your body making energy or the currency of energy called ATP, or adenosine triphosphate, you’ll be energy deficient. Your cells will be starving for energy, and this occurs in little organelles in the cell called mitochondria. The mitochondria are like the little energy plants of the cells. They can be really damaged by things like long courses of antibiotics. Certain types of antibiotics, like the fluoroquinolone class of antibiotics, like Cipro, for instance, are really poisonous to mitochondria, but many other medications are harmful to mitochondria, including cholesterol-lowering drugs called statin drugs. They can really do a lot of damage to the mitochondria and the biochemistry of the mitochondria because they can cause profound CoQ10 deficiency, which is really important in mitochondrial biochemistry for energy production.

[Other causes for mitochondrial dysfunction include anemia and respiratory issues, like COPD.]

No. 3 is actual problems in the muscles themselves – what we call myofascial pain syndrome [and other musculoskeletal conditions]. This is where the problem actually resides in those somatic soft tissues around the body. Wherein true, classic fibromyalgia, even though you may be achy in the muscles, the problem is not in the muscles; the problem is in the brain. It’s in how your brain and the central nervous system interprets sensory information and sort of overexaggerates or amplifies the information. If you really have fibromyalgia, therapies directed toward the muscles or the body – whether it’s massage or chiropractic manipulation or physical therapy or ultrasound or acupuncture – generally don’t help at all. The problem is not where they’re treating. The problem is deep in the brain.

If you have myofascial pain syndrome, those kinds of therapies do help a lot of people. If you really feel better and respond to those hands-on therapies, then your problem is not likely to be fibromyalgia. It’s more likely to be myofascial pain syndrome. And you’re not as likely to have things like anxiety, depression, unrefreshed sleep, even irritable bowel syndrome, as much.

[There’s a] fourth one I’ll throw in because it’s about to rise to the other three. [It’s the] misdiagnosis of Lyme and other tick-borne illnesses. These organisms can cause a lot of symptoms that can make someone be inappropriately labeled with fibromyalgia.

If someone is having fibromyalgia symptoms, what advice can you give to help them get the right diagnosis?

If you think you may have fibromyalgia, you have no choice other than to become a very informed healthcare consumer. You have to become essentially your best health advocate for yourself because the [healthcare] system generally is not going to do you much justice. You’re probably going to get mistreatment, misdiagnosis, [based on] what the averages say.

According to Dr. David Brady, fibromyalgia misdiagnosis is extremely common. Up to two-thirds of fibromyalgia patients may have been misdiagnosed, based on the results of one study. So, if you don't have fibromyalgia, what else could it be? Find out here!

“The Fibro Fix” discusses the rampant misdiagnosis of fibromyalgia and what conditions are commonly mislabeled as fibromyalgia.

So I would start, and I say this honestly, not in a self-serving way, but I would probably start by reading my book, “The Fibro Fix,” because I wrote it just for this reason to educate people to be their own best health advocate.

If they think they might have fibromyalgia, [the book will help them] have a greater understanding of what fibromyalgia is, what it isn’t, what are the characteristics of real, classic fibromyalgia, what are the other things it might be and how they can start to differentiate for themselves what bucket or camp they might be in. We do that through a series of questionnaires and making you self examine your situation, your past medical history, your stress situation and many other things to help you make that determination.

We try to guide you toward ways to find the right healthcare practitioner if you need help navigating this further. We give examples of what kinds of tests you might want to have them run and things to try on your own. The book is really about self-empowerment and everything you can do on your own to help recover from this situation that you find yourself in.

Also on my website, FibroFix.com, there are a lot of resources. There are questionnaires. There are diagnostic criteria. In the media tab, there’s also a lot of different interviews where I had time to go in-depth on some of these [issues]. I have some presentations there. I have articles and even medical papers I’ve written to help people learn as much as they can.

Also, last June I did a weeklong in-depth dive into fibromyalgia called the Fibro Fix Summit. I had about 35 experts from around the world in healthcare and also some patients who have a connection to fibromyalgia. Many of these experts are not only experts in fibromyalgia, but are experts in things that get misdiagnosed as fibromyalgia. I have experts in Lyme, I have experts in mitochondrial dysfunction, I have experts in thyroid, I have experts in myofascial pain syndrome. The Fibro Fix Summit is still available [via] digital access …or to order it on a flash drive.

How do you define classic fibromyalgia?

Classic fibromyalgia is …a central pain processing disorder. What that means is the problem is in how you process pain [and other sensory information coming into the body]. In fibromyalgia, it’s not processed correctly. It’s sort of amplified, if you will, and over interpreted. Things that would not normally be interpreted as painful are painful, and things that would be mildly painful would be interpreted as significantly painful.

In classic fibromyalgia, the way this information is processed is fundamentally flawed deep in the brain and the central nervous system. There are many hypotheses on why that can happen over time, but the classic fibromyalgia patient also has these other elements that are a signature of a central sensitivity disorder. A lot of times we use the word hypervigilance, meaning their nervous system is hypervigilant to impending threat or harm. Their nervous system is always in a sort of fight or flight emergency panic mode, and over time everything amplifies and becomes catastrophic.

You see not only upregulation in pain perception, but you see things like anxiety, panic attacks, inability for the nervous system to rest during sleep, to go through all the normal sleep cycles, including restorative stage 3 and 4 delta-wave sleep. People with fibromyalgia may sleep for 14 hours, but they wake up feeling like they’ve never slept because they never go into the deep, restorative stages of sleep because their nervous system won’t rest enough and be secure enough to go into those restorative stages of sleep.

[In classic fibromyalgia, it’s also common to have] an upregulated motility or down regulated motility of the bowel, so you get irritable bowel syndrome. You get gassiness, bloatiness, constipation, diarrhea, or an alternation of constipation/diarrhea is very common.

You generally are profoundly fatigued, mainly because of the sleep dysfunction, and you have a hard time thinking straight.

We look for all of those things in classic fibromyalgia, and generally there’s also a significant stress history. It’s not uncommon that these [patients] with classic fibromyalgia have had significant stress, trauma or difficulties in their early life when their nervous system was learning to deal with their environment. They often had difficult childhoods. They’re children of acrimonious divorces or [had] substance-abusing parents. [There was a lot of] yelling [or abuse]. [They often had] authoritarian parental figures … or sometimes they’re victims of verbal abuse, physical abuse, sexual abuse. I don’t mean everyone with classic fibromyalgia is an abuse victim, but they have a much higher incidence of not exactly the most secure, loving, safe, idyllic upbringing as others.

How do you treat classic fibromyalgia?

You have to put together a whole plan, and I go through that in my book. You have to deal with it on a multitude of fronts. You have to deal with the hypervigilance of the nervous system. We use meditation. We use things like guided imagery or deep breathing exercises. Sometimes we actually use real-time EEG brain-wave analysis where we, through audio tones and different kinds of relaxation techniques, teach the person how to retrain their brain into more calming states of brain-wave function. We sometimes use heart-rate variability training to help calm the mind and nervous system. That can be done in office on different systems, but also now on apps through your [cell phone or tablet]. Sometimes we have to use some sort of therapeutic intervention with a counselor or psychologist, particularly if there’s been a history of abuse.

We also have to clean up their diet. We have to get them eating whole, fresh foods. De-emphasize inflammatory, processed foods. De-emphasize things that they may have a unique immunological intolerance to where it’s fueling inflammation. We do various kinds of tests to find those things. It may be gluten, it may be dairy, it may be other things. It’s really somewhat individualistic.

We also then have to work biochemically on the nervous system itself. We use things to normalize or optimize some of the neurotransmitters and hormones. We have to optimize thyroid function. We have to oftentimes rebuild and rejuvenate the stress response and adrenal function.

We almost always in classic fibromyalgia have to take a look at and balance out some of the neurotransmitters like serotonin, like GABA, like dopamine. We can do that in various ways with natural interventions with botanicals, nutraceutical precursors, amino-acid therapy. Sometimes we resort to prescription medications in various classes, but usually we try to avoid that.

We use a lot of things to modulate serotonin like 5-hydroxtryptophan. We’ll use melatonin to help with deeper sleep. We’ll use forms of GABA. We’ll use precursors to calming neurotransmitters like l-theanine. We’ll use things like inositol and phosphatidylserine, and a lot of calming, sedating botanicals like valerian, passiflora and hops. We’ll use German chamomile. There are a lot of combinations of things we’ll use based on a person’s specific situation and their response to things we try.

Why is it important to take a comprehensive approach to fibromyalgia treatment versus just taking pharmaceuticals?

The answer to that is simple: Because the pharmaceutical approach in and of itself does not work. That’s not me saying that out of experience, although I can and I do agree with that. That’s major meta-analyses saying this. [There’s a study that] looked at the two major classes of medications that have FDA approval for fibromyalgia. The two classes are basically the antidepressants – the serotonin and norepinephrine reuptake inhibitors – which two of the approved drugs, [Cymbalta and Savella], are in that class, and the alpha 2 delta ligands, which are basically recycled, repurposed antiepileptic drugs. The other drug approved for fibromyalgia, [Lyrica], is in that class.

Collectively, even if you make the assumption that the patient is diagnosed correctly with classic fibromyalgia, which is a big assumption, the use of these medications only results in statistically significant improvements in their functional state somewhere around 25 percent of the time. Of those [patients] who are lucky enough to have that beneficial effect, in at least 50 percent of those, the benefits basically fade away after several months of use, so you’re left with a high likelihood of side effects with those medications and not a high likelihood of positive effects.

I definitely use those [drugs] in some patients, but to think they’re a viable treatment in and of themselves just goes against all the evidence that we have. There’s no other option than to look at this comprehensively because that’s the only way you get these people better or at least even partially better.

You’re a practitioner of functional medicine. Can you explain what functional medicine is and why it might be beneficial for a fibromyalgia patient to work with a functional medicine practitioner?

Functional medicine doesn’t concentrate only on diagnosing overt end-stage disease and trying to treat it after it occurs. Rather than waiting for the horse to leave the stable and trying to put the horse back in the stable, we really concern ourselves with upstream interventions and upstream analysis of patients based on their own uniqueness, genomic potential, biochemistry and metabolism, and we try to keep them optimally healthy. We don’t wait until there’s such dysfunction that there’s disease. We look at their function across the spectrum from total health all the way to disease. Conventional medicine looks at either you have a disease or you’re healthy, and that’s just not true. There are many shades of gray between those.

In functional medicine, we’re looking at trying to assess you and move you toward your most optimal function, and that’s really what’s required, particularly if there’s a chronic disorder going on like fibromyalgia or another problem that might be inappropriately labeled as fibromyalgia.

Functional medicine doctors are probably the best positioned to be able help you through that. They do a lot more testing. They look deeper under the covers if you will for reasons why things are not working versus seeing you for three minutes, getting your list of things you’re complaining about and throwing drugs at you that may mask those symptoms … in a sort of band-aid kind of way.

I’m not against drugs. I’m glad we have them. I wouldn’t want to live without them, but I just think somewhere along the line we went off the rails, and whether it’s because of economics or the pharmaceutical industry shaping of the medical system, we got to some crazy point where the only solution is a synthetic drug or surgery or nothing.

Functional medicine doctors don’t stop at only those two options. We have a lot more options: life interventions, stress mitigation, changing your diet, making yourself less inflammatory, using a lot of medicinal properties of plants and botanical medicine and amino acids and nutraceuticals and nutritional supplements used at physiological therapeutic levels. There are so many different ways you can nudge the body toward a better state of health short of a synthetic pharmaceutical. We use all of those things when they’re appropriate based on a person’s individual situation.

What’s the best way to find a functional medicine practitioner?

Probably the best way is to go to the website for the Institute for Functional Medicine. There’s a “find a practitioner” tool [where] you can put in your zip code and find various practitioners who have training in functional medicine.

That being said, I’m not trying to imply that every functional medicine-trained physician would have the kind of expertise and knowledge in fibromyalgia that I do because they don’t. However, you’ve got a much better chance they’ll help you navigate through some of this maze than just your standard family physician.

Are you accepting new fibromyalgia patients?

I am in clinical practice in Fairfield, Connecticut, at Whole Body Medicine, and I do accept new patients. I have to see patients in my office the first time and establish them as a patient, and afterwards I can follow up with them remotely through phone, Skype and other types of management.

So, now it’s your turn…Do you feel confident that your physician ruled out all other causes for your fibro symptoms? Do you think it’s possible that you’ve been misdiagnosed? Comment below!

You might also like…

An interview with Dr. Ginevra Liptan, author of "The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor" and founder of The Frida Center for Fibromyalgia.

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Comments

  1. I do not think this Dr is doubting FMS but is trying to ensure it is not a ” a throw away” diagnosis for doctors. I was very frustrated because it took years for a diagnosis back in 92 ; but many tests and evaluations from rhummy, neurologist,psychiatrist, psychology,family Dr,internal medicine,infectious disease specialist, orthopedic, ( I think that’s all) oh yeah endocrinologist,then final dx fron Cooperstown hospital in NY and then hospital for bone and joint disease confirmed FMS . So now I do not have a doubt,

  2. Michele says:

    I was misdiagnosed with fibro and got to the point I was bed ridden. I was kicked off disability and told I was an exaggerator. In the meantime I was in counseling and on anti depressants for basically being a hypochondriac. I appealed and Disability demanded an mri. The MRI showed my entire spine was literally disintegrating. I was rushed off to another state for medical care.
    Of course i would have preferred the you’re just crazy person diagnosis, but I got the last laugh. I ended up with a severe congenital spinal.deformity,Zipi a spinal cord injury, multiple spine surgeries to keep me walking, and almost died from sepsis after one of my spine surgeries. SO my health is very bad now thanks to the plethora of very bad doctors i saw for almost 2 decades, dozens of Doctors. My neurosurgeons appalled i was basically mentally abused as my condition deteriorated. I was repeatedly told I was too young for a spine issue, even though I told every doctor about my prior spines issues, spine procedures, and spine surgery at age 29.
    I have no confidence whatsoever in doctors or the medical system because they contributed
    greatly to my spinal cord injury, mental decline, mental deficits, severe ptsd, pain, suffering, and poverty. Just waiting for my next misdiagnosis to finish me off.

    • Janice Hussey says:

      My goodness. I have been on a bad doctor path for 20 years, until this summer. I am so upset for you, and all you have been put through. It is inhumane what those doctors did to you. Please hang on and do the best you can to have as good a life as you are now capabke of. Thank you for sharing. 💞

  3. Really like this article! I was diagnosed with fibromyalgia when I was 14. My pain started when I was just 12. I have had an endless amount of blood work, x-rays, MRI’s, bone scans and gone to 10 different doctors. Other than minor vitamin deficiencies all of my tests have came back normal. I’ve tried about 20 different prescriptions. The only thing that has ever worked for me is Cybalta, but for a short period of time, and high dose painkillers. I’ve tried meditation, massage therapy, physical therapy, ultrasound therapy, accupuncture, and cryotherapy. After all this my pain has consistently worsened. I’m soon getting checked for MS, which at least there is a treatment for if it turns out I do have it. I will definitely be purchasing this book to learn more about my own disease.

    • Donna Gregory/FedUpwithFatigue.com says:

      Given your age of diagnosis, you may also want to look very seriously at chronic Lyme disease. The standard testing available through mainstream labs like Labcorp and Quest is poor and only catches about 50% of cases. That means you can have a negative test and still have Lyme. It happened to me – multiple times! I was recently diagnosed using iGenex testing (www.igenex.com), which is a pay out of pocket test but it’s much, much more accurate than the standard testing. It’s worth it to spend the money to get the right diagnosis. Here’s a link to an article that I wrote on how to get properly tested and evaluated for chronic Lyme that you might find helpful: https://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/ You’re welcome to email me w/ questions.

  4. Thank you. This is one of the best posts I’ve read. It’s ironic that fibromyalgia used to be the “F” diagnosis (dismissed, questioned, frowned upon, virtually misunderstood by medical professionals and the public at large). Now, it seems to be the diagnosis du jour. “Everyone” has fibro – fibro flares, fog, invisible illness, chronic pain, etc., etc., etc. A seemingly exaggerated, if not ubiquitous, over-diagnosis and prevalence (yes, this is hyperbole) of fibromyalgia gives power to those wanting pity/sympathy – or maybe just an answer/name for their suffering – and dilutes the gravity and challenge of what it means to live with this life-depleting condition.

  5. Marian Rendall says:

    Hi I have been diagnosed with fibro n CFS for 4yrs+ after I was involved in a rear shunt car accident which resulted in me having ripped muscles n damage to nerves in my back, why would I get fibro n CFS from this injury n is this a common result from this type of injury? Many thanks x

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, auto accidents and other stressful events (family death, surgery, injury, nasty divorce, etc.) are commons trigger for fibromyalgia. At this point, no one really understands why this happens. My hunch is that these super stressful events trigger the overreaction of the nervous system and/or the immune system and cause our fight/flight mechanisms to get stuck in overdrive, but that’s just a theory of some researchers/physicians at this point.

      • Finally Healing says:

        I recommend taking a look at Dr. Sarno’s work. He explains why these traumatic events can act as triggers. http://www.tmswiki.org/ppd/Fibromyalgia

      • Colleen Ektefaie says:

        I was diagnosed in 2011 I had a neck dissection surgery they removed 57 lymph nodes and thyroid for rare thyroid cancer and after that surgery my Fibro got extremely worse. My surgeon said that surgeries especially head and neck can cause fibromyalgia or if you already have it it can get worse.

  6. Tracey says:

    Hi, I am up late because guess what I can’t sleep due to the aches! Loved the interview! I am in the UK. I am very sceptical I have fibro, I was diagnosed in June last year. The conclusion came from normal blood test results showing nothing, her prodding me and asking about sleep. I’ve had a skin biopsy diagnosed as lupus and I have antibodies poised ready to attack my thyroid gland. I have had the glandular fever with antibodies set off on my liver. I know it’s lupus I have. But she insists I’m wrong and won’t even try the lupus meds! I have no clue what to do now. Honestly I’m scared and still hurting! Can you have both?

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, you can definitely have both. My mom actually had lupus and fibro. Is there a way to see another doctor? It’s immoral for her to not treat you for lupus if you’ve tested positive. That’s a very, very serious condition.

  7. Christine says:

    I agree with you. I have been bitten twice by a tick at different times and have taken the antibiotics to prevent. My blood work always come back negative but my doctor has told me that I have a small percentage of Lyme but not high enough to say I have it. If you want the best blood test for Lyme you have to pay for it, insurance doesn’t cover it, I was told this by my primary doctor. There is a doctor named Dr. Richard Horowitz who wrote a book called ” Why Can’t I Get Better? Which is about Solving the Mystery of Lyme & Chronic Disease. He speaks all over the world. He even says a lot of people are misdiagnosed with Fibo.
    You can find him on the web and on Facebook. I’ve read his book and the information in the book is very interesting.
    Donna I have had the same Lyme test over and over and has come back negative but there has always been a little percentage there for Lyme which I do believe I also have with fibo. I say this because appx. 4 years ago I had surgery which I believe caused trauma to my body. My doctor has told me I can pay for a blood test which I believe is over $risk 700.00 dollars out of my own pocket. Dr. Horowitz is fighting to get these blood test covered by insurance companies. He tells you what states and countries carry the highest amount of ticks and I live in one of those. He also says HMO’s didn’t believe Lyme disease exists. He even invited them to lectures at medical conferences. I don’t know if you read his book or know of him. He had a practice in Dutchess County, NY. He travels now to fight for people with Lyme.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Christine,

      Thanks for your comment. Yes, the standard doctor’s office testing for Lyme is only about 50% accurate, and that’s in acute cases where someone was just bitten. If you were exposed to Lyme months or years ago, like many of us have been, then the chances of getting a positive test are basically zero. I had the standard testing at least twice that I know of, and both times my result came back negative. I really felt in my gut that Lyme disease might be an issue for me, so I had iGenex (www.igenex.com) testing done and I tested positive for Lyme specific bands. So that’s a first person account of just how crappy that standard test is. Based on the physicians and other patients I’ve spoken with, I suspect there are millions of people w/ fibromyalgia who actually have Lyme and don’t know it. That’s tragic b/c Lyme is treatable and some people recover from it whereas fibro really isn’t – all you can do w/ fibro is manage symptoms and wait for researchers to figure out how to fix it.

      I’m assuming your doctor is referring to iGenex testing when he mentioned the $700 test. You might want to research cost of the testing b/c you can do a basic Lyme panel w/o testing the co-infections, and that’s cheaper – around $300, I think. I know that’s still not cheap by any means, but at least it will give you an answer one way or another if you have Lyme.

      You also mentioned that you tested positive for some bands. Do you know which ones? If you had any of the Lyme specific bands, then you have Lyme, according to most Lyme specialists. If you have those Lyme specific bands, then there’s really no need for iGenex testing at all. Most Lyme specialists will treat you based on those positive bands. I have the Lyme specific bands listed in this post, if you can check your medical records: https://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/

      Dr. Horowitz is one of the top Lyme docs in the country. He just put out a new book called “How can I get better?” I’m slowly working my way through that book now. I actually called to see how much he charges, but he’s no longer taking new patients.

  8. Allie says:

    Don’t agree with what this doctor sAys. I’ve been diagnosed with fibromyalgia and it has taken many years and many different tests by different doctors. This is a real disease without a cure only things that may or may not help the individual cope to get through the day. Anyone that is going through the pain you are not alone. Keep your head up and try to stay positive I know easier said then done but each day is a new day

  9. Brenda says:

    I got Fibro and was tested a lot for anything else it could be. I even got Disability because I couldn’t work anymore. I hate when these so called Doctors delve into this and have a miraculous cure. There is no cure, you just learn to live with it! Sorry FIBRO FRIENDS….we have FIBROMYLGIA!!!!

  10. Ellen says:

    I was treated by this doctor. Very disappointing. Took all of his supplements and followed his protocol. I got worse through the process. He basically told me I must have something else wrong and that it wasn’t fibromyalgia. I have been diagnosed with fibro by multiple doctors over the years. I wasted a couple thousand dollars and came away very discouraged.

  11. One diagnosis that was not mentioned is Ehlers-Danlos Syndrome (EDS). EDS is a group of genetic connective tissue disorders caused by a defect in collagen. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. It’s the “glue” that holds your body together. One of the significant symptoms is pain – both daily chronic and acute pain due to dislocations/partial dislocations. Many of the symptoms mirror Fibromyalgia.

    Connective Tissue geneticists believe that approximately 50% of Fibro patients actually have a form of EDS. (Both my daughter and I were diagnosed with Fibro first) For more information, see ehlers-danlos.com.

    • Donna Gregory/FedUpwithFatigue.com says:

      That’s a great point. I just saw where a couple of my fellow fibro warriors were recently diagnosed with EDS. In Dr. Brady’s book, he talks about many other conditions that are commonly misdiagnosed as fibro that weren’t mentioned in the interview.

  12. Thank you so much for participating in our first link up party at The Unbroken Smile. Tons of great info, thanks for sharing! ((Gentle Hugs))
    – Elizabeth

  13. Robin says:

    I believe that I have classic fibromyalgia. I’ve been tested for absolutely everything, that I felt like a lab rat. I’ve tried every treatment and nothing has worked. I’m going back in for another sleep study. My fatigue has gotten so bad that my sleep doctor thinks I might have narcolepsy too. It’s hard to accept a diagnosis with no evidence, I still wonder if there’s something else there.

  14. Nancy Trice says:

    OH GREAT!!!! JUST ONE MORE DOC WHO DOESN’T BELIEVE FIBRO EXISTS!! THAT’S WHAT I NEED!!!

    • Donna Gregory/FedUpwithFatigue.com says:

      How did you get from our interview that he doesn’t believe in fibromyalgia? The entire interview is about how to properly diagnose fibromyalgia and treat it. He specializes in treating fibro.

      • Claudia Poindexter says:

        I didn’t get that he doesn’t think fribo exosts. I have been diagnosed with fibro, and i am not sure that is my problem. The search continues!

  15. I was with him until I started to hear the old chauvinist chat about trauma. Not everyone who has fibro has experienced trauma and vice Versa

    • Donna Gregory/FedUpwithFatigue.com says:

      I believe he said in the interview that not everyone falls into that category but a lot of us do.

  16. Linda Simpson says:

    I have had Fibro since 2011. I have several different kinds of specialist Dr’s who have followed me for years and ran all the tests and ruled out everything else. I do have Fibro and do not appreciate this doctor saying most have been misdiagnosed. I had all my different doctors and psychiatrist all diagnose me with Fibro without consulting each other. I had to retire at age 58 because I could not function at work. This was not something I would wish on my worst enemy. It has totally changed my life from the person I was before this started. I hope this doctor doesn’t make physicians and lay people doubt someone who says they have fibro. That would be a big step backwards in researching this disease.

  17. Karen says:

    I have been diagnosed officially for 3 years now. Blood work for Lymes and other diseases have been negative. I do have hypothyroidism and Raynauds Syndrome. I cannot take any of the medications available for fibromyalgia treatment due to severe allergic reactions to all. I do deep breathing and stretching exercises several times a day for a few minutes of relief. I am currently off work again due to balance and other issues.

    • Donna Gregory/FedUpwithFatigue.com says:

      Just a warning re: Lyme testing…the standard western blot administered by most physicians is only 50-60% accurate in active Lyme cases (where the person was just recently bitten). It has an extremely high rate of false negatives. You could test negative and still have Lyme. If you were bitten weeks, months or years ago, then the chances of it showing up on a Lyme test are very, very slim. I was tested w/ the standard testing on at least two occasions and both times it came back negative. I finally got a positive result when I had more advanced testing done through iGenex. I discuss more about testing in this post: https://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/

  18. Has this individual even even​even ​heard LDN? If the e did he might be able to give better advice and hope to fibro patients.

    • Donna Gregory/FedUpwithFatigue.com says:

      I can’t remember if he mentioned LDN in his book or not. I don’t think his message was negative at all. He is trying to educate patients so they can be their best advocates and get the right diagnosis. Based on the Canadian study he cited, there are millions of us who are misdiagnosed. That’s a lot of unnecessary suffering b/c some of these other conditions often confused for fibro are treatable!

      • Caren says:

        I started LDN about six months ago and it helped tremendously.

        • Donna Gregory/FedUpwithFatigue.com says:

          That’s awesome news! So glad LDN is helping you!

          • Colleen Ektefaie says:

            Great articles but I don’t see any of the negative trait some of the replies indicated. If anyone is on opioid medication they should not take LDN because it will interfere with your medication. However you can try you ULDN (Ultra low dose Naltrexone). This will help your opioids work better and may use less opioids medication. I do t know why more dr.’S don’t use the FM/a blood test. My Rhumatologist disregards it I believe most Rhumatologist and numerologist are not well informed on Fibro. I took the Fm/a test and got a positive result and was happy to confirm what I already knew. https://fmtest.com They did take my insurance.

  19. I’m a little leery of any doctor who say they can “cure or fix” fibro. Some functional medicine or naturopathic doctors like to push supplements on you. They sell supplements in their office. I was diagnosed with fibromyalgia at the Mayo Clinic in Minnesota. I also have Sjogren’s Syndrome. The doctors there were very thorough. They tested for Lyme disease as well. I even asked my rheumatologist here in Seattle to do another Lyme test and that came back normal. I have heard of another Lyme test but that is not covered by my insurance and my rheumatolgist said she doubts I have Lyme disease. 50% of people who have Sjogren’s Syndrome eventually get diagnosed with Fibromyalgia.

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