The Underlying Causes of Chronic Pain Need Treatment, Not Just Symptoms

By Dr. Forest Tennant

In today’s healthcare system, a single disease or condition is usually given to a person as the cause of their severe chronic or intractable pain. These common labels include Complex Regional Pain Syndrome (CRPS), adhesive arachnoiditis, pudendal neuropathy, traumatic brain injury, small fiber neuropathy, and osteoarthritis.

The singular diagnosis is usually the more prominent cause of pain – and is often required for record keeping, insurance coverage, justification for medicinals, and for diagnostic testing.

An emerging fact, however, is that the person who has severe chronic pain and requires daily symptomatic relief almost always has pain in more than one body system or anatomic site. For example, in a recent study we found that persons with adhesive arachnoiditis have an average of three to four other painful conditions. This reality is best called by an older medical term: “multi-system disease.”

A multi-system disease is one that has a single cause that affects multiple body systems. Historically, an infectious bacteria or virus has been the cause of multi-system disease. The best known are syphilis and tuberculosis. The former originates in sex organs and the latter in the lung, but both infections can travel through the blood, infecting and forming disease in multiple body systems, such as the brain, spinal cord, and adrenal gland.

In the late 20th century, diabetes and autoimmune diseases such as systemic lupus became known as causes that may affect multiple body systems. In this century, it has been discovered that genetic connective tissue diseases such as Ehlers-Danlos syndrome, Lyme disease, and the Epstein-Barr virus may affect multiple body systems and produce chronic pain.

Some patients develop severe chronic pain as a result of trauma or injury to a single body system, such as the brain, spine, joints and nerves. The pain may initially remain localized to that one body system. The majority of persons in pain treatment, however, subsequently develop pain in other anatomic locations or body systems.

The genetic, infectious, and autoimmune causes of multi-system disease appear to all be progressive, with a proclivity to affect, over time, additional tissues and systems. Our view is that the progressive nature of multi-system disease may not just cause intractable and disabling pain, but may also lead to the impairment of physical and mental functions that severely incapacitate an individual. Suicide or a shortened lifespan may be involved in severe cases.

Modern day pain treatment is fundamentally about symptomatic relief.  This includes opioids, neuropathic agents, anti-inflammatory drugs, and electromedical measures. It’s time that we recognize that the underlying causes of chronic pain should also be treated, and not just the symptoms. This is a clarion call to recognize multi-system diseases, determine their underlying cause, and simultaneously treat them and the pain that they cause.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.  

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.    

On August 16, Dr. Tennant is hosting a free seminar in Westminster, Colorado on the latest research and treatments for adhesive arachnoiditis. Visit the conference website or click on the banner below for more information. All attendees are encouraged to register by August 1.

A Cautionary Tale: Why Lived Experience with Chronic Pain Matters

By Neen Monty,

I went undiagnosed with a serious, painful, progressive and incurable neurological disease for over a decade, because nearly every healthcare professional I saw assumed I was a hysterical woman with a low pain tolerance.

I am not that stereotype. I am the opposite.

Because doctors, GPs, neurologists, rheumatologists, nurses and physical therapists dismissed me and refused to do proper diagnostic tests, I now live with permanent disability and unrelenting, severe pain.

Had I been diagnosed by the first neurologist, the second, or even the third, I would have had a good chance at remission. At not being disabled. At not being in pain for every second of the rest of my life.

Early treatment leads to better outcomes in most diseases. Mine included.

It was assumed that the pain I was describing was from my rheumatoid arthritis. But, because my bloodwork showed no inflammation, it was assumed that I just had a low pain tolerance. And that I was a bit hysterical. A bit of a malingerer. A bit of a pussy.

Never assume.

Never once did they consider I was telling the truth about the severe neuropathic pain I was experiencing.

I was fobbed off by every doctor. I was told I had everything from plain old run of the mill anxiety to a functional neurological disorder. I was referred to a psychologist, who I did consult. But my mental health has no bearing on my pain.

These diagnoses were wrong. Dead wrong. And very harmful.

They made assumptions based on a stereotype I do not fit. They made snap judgments. They failed to do their jobs.

And the price was my life. The quality of my life.

Doctors talk about the fear of making a mistake that kills someone. But they never seem to consider the damage when they condemn you to a life of unrelieved, preventable suffering. They never consider their bias, their laziness, their ignorance, might steal someone’s future. Condemn someone to a lifetime of disability and pain.

Never. Even. Considered it.

But that’s what happened to me.

I am not posting this because I am bitter. I do not dwell on this. I get on with my life, I make the best of what I have.

But my story is important.

It is a very important cautionary tale that more doctors, therapists and health care professionals need to consider: Your mistakes can ruin lives. If you misjudge someone, if you get it wrong, you might be destroying someone’s future. If you write on their file that they are hysterical or a hypochondriac or an addict, every future healthcare professional’s diagnosis will be coloured by your mistake and your misjudgment. You are condemning the patient, and you are preventing them from receiving the care they need.

My lived experience is a warning.

Read my story and ask yourself, honestly, would you have made that diagnosis? Would you have missed that diagnosis? Do you listen to your patients? When treatment fails, do you go back to first principles, start from scratch, and look for an alternate diagnosis? Or do you decide the patient is lazy, non-compliant, hysterical, or lying?

Do you blame the patient? Reflect on that honestly. Ask yourself honestly.

This is why lived experience matters. Why it is essential in patient advocacy. And why so many advocacy organizations are failing. They don’t understand the problems that those of us who live with severe pain face. They speak about us, but not for us.

So please. Read. Reflect. Ask the hard questions. Because it’s not just about life or death.

It’s about the life someone has to live after you get it wrong.

I could have had a normal life.

I didn’t have to be this disabled.

I didn’t have to be in this much pain.

But by the time anyone took me seriously, my disease was long-standing. Entrenched. Irreversible.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is rare, but it is very real. The pain is constant. Every second of my life, I have pain.

And the kicker? No doctor wants to treat it.

No one believes it can be that bad. Not friends. Not family. Not doctors.

Every doctor I saw may not have known exactly which neurological disease was causing my symptoms, but they should have known it was a neurological disease they were looking at. They should have recognized the red flags. They should have followed up.

Instead, they saw hysteria. They saw hypochondria. They saw a woman who was “overreacting.” A woman with “health anxiety.”

CIDP is a horrific disease. It has stolen my life. And it didn’t have to. I am 54 years old. I have been in pain for almost 20 years now. I live with significant disability. It did not have to be this way.

Again, this is not about blame. I am not bitter.

But I ask you to read and reflect. Ask yourself, honestly. Would you have made that diagnosis? Would you?

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Microsoft Says Its AI Medical Tool is 4x Better Than Doctors at Diagnosing Patients

By Crystal Lindell

Microsoft is making some bold claims about the medical diagnosis tool it’s developing using artificial intelligence (AI). The company claims it is four times more accurate than a group of experienced physicians and can “solve medicine’s most complex diagnostic challenges.”.

Specifically, Microsoft’s AI Diagnostic Orchestrator – MAI-DxO for short — was able to correctly diagnose 85% of complex medical cases published in the New England Journal of Medicine (NEJM).

By comparison, when the company asked 21 practicing physicians from the US and UK to look at the same medical cases and provide a diagnosis, the human doctors were only accurate 20% of the time. 

In a demonstration video, Microsoft showed that MAI-DxO was able to order medical tests and provide the estimated financial costs for each test. It was then able to evaluate the test results and arrive at the correct diagnosis, even if the diagnosis was for an incredibly rare disease. 

“Our MAI-DxO orchestrator can handle some of the world’s toughest diagnoses with higher accuracy and lower costs. It puts us on the path to medical superintelligence - a big step towards better, more accessible care for all,” Microsoft said.

The company said it began testing its medical AI diagnosis systems with the United States Medical Licensing Examination, which is the same exam that physicians must pass to practice medicine in the United States. The test is a standardized assessment of clinical knowledge and decision making. 

But the fact that it was a standardized test made it too easy for AI. Microsoft said its orchestrator was able to get near-perfect scores within just three years. 

"These tests primarily rely on multiple-choice questions, which favor memorization over deep understanding," the company said. "By reducing medicine to one-shot answers on multiple-choice questions, such benchmarks overstate the apparent competence of AI systems and obscure their limitations."

To make its evaluations more challenging, Microsoft turned to having its AI evaluate the real-life cases published in the NEJM. 

MAI-DxO was configured to operate within different sets of cost constraints – just like in the real world when a patient’s care may be determined by what kind of health insurance they have, if any. That’s an important feature because without financial constraints, the orchestrator might default to ordering every possible test – regardless of cost, delays in care, or patient discomfort.

They also found that MAI-DxO delivered both higher diagnostic accuracy and lower overall costs than physicians or any other model they tested.   

"AI [could] reduce unnecessary healthcare costs,” the company said. "This kind of reasoning has the potential to reshape healthcare.”

Microsoft also touched on something that many patients with complex health challenges already know: the medical system is often overly reliant on siloed medical specialists. That’s another area where the company sees AI potentially improving patient care. 

With general practitioners treating a wide array of conditions and specialists focused on a single area of expertise, the hope is that AI would essentially be able to pull medical knowledge from both. 

While MAI-DxO seems to excel at tackling the most complex diagnostic challenges, Microsoft says further testing is needed to assess its performance on more common, everyday health conditions.

They also acknowledged that the clinicians in their study worked without access to colleagues, textbooks, or even AI – all tools that they may have in their day-to-day clinical practice. This was done to enable a fair comparison to raw human performance, but it also means that its unclear just how well AI actually competes against real-world physicians.

MAI-DxO is not available for commercial use yet. Microsoft said they need to do more testing to evaluate its reliability, safety, and efficacy. That could take about a decade. 

“It’s pretty clear that we are on a path to these systems getting almost error-free in the next 5-10 years. It will be a massive weight off the shoulders of all health systems around the world,” Mustafa Suleyman, chief executive of Microsoft AI, told The Guardian.

Why a Diagnosis Really Matters When You Have a Chronic Illness

By Crystal Lindell

Trying to get a diagnosis for chronic health problems is like being born with brown hair and dying it blonde your whole life because it feels mandatory. 

Then, after one dye job too many, you start to lose your hair in chunks, so you decide it’s time to get some help. But by then, everyone is invested in you being a blonde. 

You go to the doctor and they look at your dyed blonde hair, which you’ve been maintaining because of societal expectations. And they say, “Umm, you don’t look brunette?” 

Then, despite your very visible brown roots, the doctor accuses you of just wanting the label of “brunette” as a fad. You wonder if he’s right, while your hair falls out from bleach damage.

It took 5 years for me to get an official diagnosis of Ehlers-Danlos syndrome (EDS) after I started having serious health problems. The kind of health problems that cause you to go from an independent overachiever with 2 jobs and an active social life down to one job, moving in with your mom and spending so much time in her basement that your vitamin D drops to dangerously low levels.

It took me 5 years even though a couple years before I was diagnosed with EDS a doctor added  “benign hypermobility” to my chart. A notation that should have almost immediately led to the Ehlers-Danlos syndrome diagnosis, seeing as how I was clearly having issues that were not benign! 

It honestly makes me want to scream obscenities just remembering it. How casual they were about my life. How dismissive it all feels in retrospect. 

Lurk around any chronic illness patient group online, and you’ll see a similar refrain: Doctors don’t like to diagnose complex chronic health conditions. In fact, patients often have to figure out what they have themselves, and then find a way to present it to the doctor without offending them. I suspect this is why it takes an average of six years to get a diagnosis for a rare disorder. 

Or, if you want to torture yourself, spend time on the Reddit boards for verified medical professionals. There you’ll see the doctors confirming your worst fears: They do think you’re hysterical. They do think you just want attention. They do think the diagnosis that fits your condition is just a fad.

I want to make those doctors understand why none of that is true. I desperately search for the words to make them understand why a diagnosis matters so much when you’re suffering. Even if there’s no cure. Even if it doesn’t change the course of treatment. Even if you’ve already diagnosed yourself.

I grasp at metaphors that fall through the overextended joints in my fingers, desperately trying to make them understand the importance of a diagnosis.

I want to make my case so bad. To use logic and poetry to explain why naming things does actually matter. More than that, I want to make the case for the other patients who are suffering without even being granted the words to explain why.

My pleas fall to the ground though, because doctors don’t listen. Their minds are already made up. It’s all in our heads. And even if it’s not, they say, there’s no point in labeling it. 

They accuse you of just wanting a label to feel special, as though they — as doctors and nurses with their very own set of special letters after their names — aren’t obsessed with labels that make them feel special. 

Worse though, I suspect that somewhere deep down, the doctors know what I know: If a diagnosis did not matter, they wouldn’t be so stressed about not handing them out.

Naming things empower you. It gives you a sense of control over something that’s usually very uncontrollable. But more than that, it gives you the ability to explain it to others. To connect to another human being about your experience.

So yes, a diagnosis does matter. It matters immensely. I just wish I had a single word to explain exactly why. 

The Era of No Diagnosis

By Dr. Forest Tennant, PNN Columnist

Recently I was given a report written by a prestigious professional pain organization proposing that “back pain” should be the only diagnosis assigned to this condition.  They want to do away with any diagnosis like herniated disc, arachnoiditis, sprain, strain or rheumatoid spondylitis.  Their rationale was that pain treatment should be the same for every case of back pain, therefore there is no need to make a causative, underlying diagnosis for each patient. 

To me, their motivation was clear.  It takes training, time, expertise and money to make a correct medical diagnosis, and this group only wanted to treat the symptom of pain.  Or maybe they just want robots to take a pain complaint and exercise a preconceived, no-human touch medical protocol as treatment?

This non-diagnostic proposal goes along with the large number of papers that wish to declare pain a disease rather than a symptom.  Let us be abundantly clear:  Pain, as a symptom, can be part of a disease, syndrome, disorder or condition, but pain itself is not a disease.

Some diseases definitely cause pain. Good common sense medical practice has included, and should continue to include, a search for the basic cause of an individual’s pain. What’s more, the focus should be on treating the cause of pain rather than just treating the symptom of pain. Diagnosis is the process of identifying the cause of illness whether it be a disease, condition or injury.

My recent experience in studying adhesive arachnoiditis (AA) has revealed some pathetic information about the failure of some doctors to make a diagnosis.  In an effort to develop prevention measures and treatment protocols, we surveyed several dozen people who developed AA after an epidural corticosteroid injection or a spinal tap.  In these cases, the individual singularly blamed the development of AA on one of these procedures. 

The amazing statistic, however, is that barely a third of these individuals could give us the diagnosis that prompted a physician to do an epidural injection or spinal tap in the first place.  Spinal taps were usually done in an emergency room, and only about half of these patients could even remember the symptoms that caused the emergency visit.

One-Size-Fits-All Treatment

A great disconnect has developed between primary care physicians, pain clinics and patients.  In most cases today, a person with neck, back or extremity pain will initially consult with their primary care physician. In many cases, the doctor will then refer the patient to the local pain clinic, expecting the clinic to determine a specific causative diagnosis and develop a patient-specific treatment plan. 

That is what usually happens when a primary care doctor refers a patient to an allergist, rheumatologist or cardiologist. The medical specialist makes a diagnosis and develops a patient specific plan that either the specialist or the referring doctor will follow while treating the patient. 

But this rarely happens today when a primary care physician refers a patient to a pain clinic.  Almost never is a specific diagnosis made, but a “one-size-fits-all” pain treatment regimen is initiated.  Or worse, the pain patient is given the diagnosis of “opioid use disorder” and placed on the addiction treatment drug Suboxone, even if they have been successfully maintained for years on opioids with no abuse issues.  The referring physician may never even see the patient again. 

The upshot of this practice is that some pain clinics are treating dozens of bonafide patients without a specific medical diagnosis other than neck, back or leg pain, or “opioid use disorder.”

There are some other unacceptable non-diagnostic scenarios these days.  Severe chronic pain is often caused by a rare obscure disease such as AA or Ehlers-Danlos Syndrome.  Patients will often obtain their unusual disease diagnosis and present it to a physician for care, who declares that he/she doesn’t accept the diagnosis. 

A patient may then dare to ask, “Then what do I have and what is the treatment?”  It’s hard to believe, but some patients are being told, “I don’t accept that diagnosis, but since I don’t have another one, I can’t treat you.”

Another story commonly told these days is the patient who complains about “pain all over” and is prescribed a long list of medications, but doesn’t receive a causative diagnosis.  Some patients have gone to a dozen or more doctors, but not one has rendered a causative diagnosis.

The opioid and COVID epidemics have obscured a lot of positive diagnostic developments that have gone on behind the scenes and which greatly assist in making a causative diagnosis. Improved blood tests for inflammatory and autoimmune markers are now available. Genetic and hormone testing can not only pin down a diagnosis, but also provide a roadmap for treatment.  And contrast magnetic resonance imaging (MRI), which distinguishes spinal fluid from solid tissue, has made the specific diagnosis of spinal canal pathologies most accessible.  

Every chronic pain patient not only deserves, but needs a specific medical diagnosis so that the basic cause of their pain can be treated, as well as relieving the symptom of pain.  Without treating the underlying cause of chronic pain, the patient is often doomed to a pained life of diminishing quality until death. 

Modern medicine now has the knowledge and technology to do better.  Why aren’t we?

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Why Getting a Diagnosis Matters

By Crystal Lindell, PNN Columnist

For me, finding out I had a genetic condition with no cure was, strangely, liberating. 

When I walked out of the doctor’s office, I went to lunch at Chipotle with my mom to celebrate. We splurged for the guac. 

No, I wasn’t ever going to get better — but at least I wasn’t crazy. 

It took about five years of debilitating chronic pain in my ribs, two trips to the Mayo Clinic, appointments at three different university hospitals, and countless specialists before I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in March 2018. 

And you know how it happened? It wasn’t some magical doctor who finally figured it out all out. No. It was my readers. A few of them emailed me suggesting I check into it, so I asked my doctor about it. He referred me to a pain specialist who diagnosed me within a month. 

I’m not going to pretend that finding out I had hEDS was all just a pile of happy pills though. I went through an extremely rough month of depression and grief as I worked to grapple with everything that came with that life-long diagnosis. There’s no cure. My body will probably just get worse over the years. And having children would be extremely risky. 

It was a loss, for sure, but it also was a gain in so many ways to finally know what I was fighting — and for others to know as well. It felt like it went from, “She’s making it all up and probably just wants pain meds,” to “She’s here legitimately,” in my medical chart. That alone was life changing. 

And based on the Facebook and Reddit patient groups I follow, I’m not alone in any of this. Hundreds, if not thousands, of people seem to post about their search for a diagnosis, and the validation they feel once they’ve gotten it. 

Knowing your enemy’s name makes it much easier to do battle. 

And yet, doctors seem to be so far behind on this. 

Here are some common myths I’ve heard both from my own doctors, and via patient stories. 

Myth: A diagnosis won’t change how the symptoms are treated. 

Fact: This simply isn’t true. For me, hEDS means I can react differently to medications and treatments. For example, I should avoid chiropractors and only see specially trained physical therapists, because if I don't, I could be seriously injured. Not to mention the fact that it also means I have additional risks that can be regularly tested for, such as issues with my heart. And the risks related to surgery also change. Be skeptical anytime someone tries to tell you that more information is a bad thing.  

Myth: A diagnosis will increase insurance rates. 

Fact: The U.S. requires insurance companies to cover pre-existing conditions now, so this simply isn’t true. 

Myth: Seeking a diagnosis means you just want to spend your days blaming everything on your condition. 

Fact: Trust me, nobody “wants” to blame everything on a genetic condition. But if a genetic condition is to blame, then it’s not crazy to connect the dots. A diagnosis also helps you see dots you didn’t even know where there.

Myth: A diagnosis doesn’t change anything.

Fact:  A diagnosis does so much more than get noted in your medical history. It also can help you apply for programs like Social Security Disability and medical marijuana cards. And maybe even more importantly, it can help you explain yourself to friends, colleagues and family.

When you show up late for a meeting because “your ribs hurt,” people give you the side-eye and then leap into a diatribe about how their back hurts sometimes and they still manage to get there on time. But if you show up late and explain that you have a rare disease called EDS, they usually rush to offer sympathy and understanding. 

So what do doctors mean when they try to tell you that a diagnosis doesn’t matter? They mean, it doesn’t matter to them. It’s similar to when they say a surgery is going to be easy, they mean it’s going to be easy for them.

But we aren’t living for them. We’re living for us. So keep fighting the good fight. Keep insisting that you get the right diagnosis. And know thy enemy.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers-Danlos syndrome. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

An Open Letter to All the Doctors Who Missed My EDS

By Crystal Lindell, Columnist

I hate you. I actually hate you.

Well, maybe not all of you.

But most of you, yes I hate. Actually, hate is too nice word. I detest you. I loathe you. I have venom in my heart for you. I hope your favorite show gets cancelled after a cliff hanger. I hope your air conditioner breaks in your car in July. I hope your crush never likes any of your Instagram photos. I hope every single time you go through the Taco Bell drive thru, they mess up your order. And I hope your phone screen cracks, your laptop crashes and you lose everything you ever saved.

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome (hEDS), a connective tissue disorder that not only explains why my ribs always feel broken, but also why I’m always covered in unexplained bruises, why I sprain my ankles too often, why my vision changed for no reason, why my skin is baby soft, and why I crave salt.

And so many doctors missed it. And I can’t get it out of my head.

Like the doctor at Loyola who told me to stop coming to see him because there was nothing else he could do about my pain.

And the other doctor at Loyola who looked right at me while I was sitting on the exam table in just a paper-thin gown and said, “Well there are two options. You either woke up with a completely unexplainable pain, or you’re a great actress.”

I was so caught off guard that I didn’t even realize he was accusing me of trying to get drugs for like a full 30 seconds.

I also hate literally every single doctor at the Mayo Clinic that missed this crap. You know how easy it is to do an initial test for hEDS?

Doctor: "Can you bend your thumb to your wrist?"

Patient: "Yes."

Doctor: "Yeah, you probably have it. Let’s do a full evaluation."

IT’S THAT EASY!!!

The Mayo Clinic missed it because they were obsessed with me going to their rehab clinic and getting off opioids, despite the fact that it wasn’t covered by my insurance and that they required a $35,000 upfront payment.

So yes, I hate all of you.

I also hate every single chiropractor I ever saw. Seriously, all you guys do is see people in pain, and it never crosses your mind to evaluate for EDS? Why are you not asking every single patient who walks through your doors if they can touch their thumb to their wrist? What is wrong with you?

Not to mention the fact that chiropractors have to be super careful with EDS patients, if they treat them at all, because things can dislocate and all that. It’s irresponsible of you not to be evaluating every single patient for EDS.

I also hate the pain specialist who berated me for not wanting a spinal cord stimulator. If he had evaluated me for EDS, he would have known that a spinal cord stimulator would have probably been a horrible idea for me. Like chiropractors, all pain specialists do is see people in pain. They should be evaluating every single patient they see for EDS too! 

The whole thing is so infuriating and frustrating. I sincerely wish I could go back to every single doctor I have seen over the last five years and personally tell all of them how much I hate them. And then I wish I could tell all of them to freaking check people for EDS. But I can’t do that. All I can do is write this letter and then try to move forward with my new life and my new diagnosis.

But if you’re a pain patient and you can touch your thumb to your wrist, get checked for EDS. Seriously.

And if you’re a doctor, do better.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Diagnosing Fibromyalgia Can Be Long, Difficult Process

By Lana Barhum

Because of newer, comprehensive methods for treating fibromyalgia, including lifestyle approaches and medication, the prognosis for fibromyalgia patients is slowly improving.  But first a doctor needs to make an accurate diagnosis, which isn’t easy. 

On average, it takes 2 to 3 years to get a diagnosis, and research shows that people with fibromyalgia typically see many doctors before getting one.  Even with a doctor who is knowledgeable about fibromyalgia, it still takes time.

While much research has been devoted to fibromyalgia, a syndrome defined by debilitating widespread muscle pain, cognitive impairment, lack of restorative sleep and extreme fatigue, it is still contested by some in the medical community.  Moreover, there remains considerable disagreement about fibromyalgia's cause, whether it is psychological or physical, and how to treat it. 

That lack of conformity is unfair to the millions living with the real pain and sickness fibromyalgia brings in its wake. Fibromyalgia takes a toll on mental and physical health, relationships and quality of life.

“People with fibromyalgia suffer from severe, daily pain that is widespread throughout the body,” says Dr. Leslie J. Crofford, an NIH-supported researcher at Vanderbilt University. “Their pain is typically accompanied by debilitating fatigue, sleep that does not refresh them, and problems with thinking and memory.”

Why Does a Diagnosis Take So Long?

The one thing the medical community does agree on, is that fibromyalgia is difficult to diagnose. But why does it take so long?  Here are some possible explanations. 

Fibromyalgia is not considered a disease.  It is a syndrome, which means a cluster of signs and symptoms that occur together, and create an abnormality or condition. 

Fibromyalgia symptoms often don’t make much sense.  Sleep issues, extreme fatigue, anxiety, headaches, widespread pain and so much more could be attributed to any number of health conditions or bad habits, such as insomnia, stress, not drinking enough water, or smoking.  Additionally, symptoms vary from person-to-person and their severity is constantly changing. 

There are also no universally accepted labs or diagnostic tests for fibromyalgia, so doctors must rely on symptoms to make a diagnosis. Physicians also have to make sure the symptoms are not caused by another health condition.

Criteria for Diagnosing Fibromyalgia

In 1990, the American College of Rheumatology’s (ACR) diagnostic criteria involved physical examination of specific tender points on the bodies of fibromyalgia patients. If patients had at least 11 or 18 tender points, they were given a diagnosis of fibromyalgia.  It was the only method available at the time for diagnosing fibromyalgia, but studies would later point out the limitations of this method.   

The 2010 ACR diagnostic criteria, updated in 2011, utilizes a widespread pain index criteria and a symptom severity score.  In 2016, researchers updated the criteria yet again, reporting their revisions at the ACR's annual meeting in September. 

They determined that a doctor who is knowledgeable about fibromyalgia can make a diagnosis based on symptoms that include widespread pain lasting more than 3 months, as well as other symptoms, such as debilitating fatigue.  Moreover, the doctor must consider the number of areas on the body where the patient has had pain over the past few days and the severity. Lastly, he or she must rule out other potential causes of the patient's pain and symptoms.

It wasn’t until late 2015 that fibromyalgia was finally recognized as an official diagnosis and given a new ICD-10 code (10th revision to International Statistical Classification of Diseases and Related Health Problems, a medical classification list by the World Health Organization). This came as a result of many medical advances over the last decade in understanding and acknowledging fibromyalgia.  

Regardless of how far we have come in research and awareness, until there are conventional methods for testing fibromyalgia, it will continue to remain a diagnosis of exclusion.   Doctors will continue to rely on a description of symptoms and pain from patients, which can be difficult to articulate for most people. 

Patients' Responsibility

In late 2008, I was finally diagnosed with fibromyalgia based on the 1990 criteria.  I know firsthand that living with a cluster of deliberating symptoms and unexplained pain can be frustrating. 

I don’t recall the exact date I was diagnosed, the onset of my symptoms, or what triggered my illness.  What I do recall is that for ten very long years, I visited countless doctors as my pain worsened and the list of symptoms continued to grow.  I would inform doctors I was hurting and extremely exhausted. Some mornings, I couldn’t even get out of bed.  Some treated my symptoms as psychosomatic and others tried treating my physical symptoms. And of course, there were the ones who viewed me as drug-seeking.

Despite my difficult and frustrating experiences, I took responsibility for my health and finding answers.  All I ever wanted during that ten year period was to be believed, but it took a lot of physical and emotional pain to get that.

I know anyone struggling to find answers feels the pain and sentiment in my saying that a diagnosis finally gave me my life back.  It truly did, and even though finding successful treatments has proved challenging, having an actual diagnosis has made life a whole lot easier.

Medicine has come a long ways in diagnosing fibromyalgia, but doctors still need to rely on descriptions of symptoms and pain from patients, which is challenging.   As a patient, it's up to you to keep track of all your symptoms.  Write them down. Note what causes them or worsens them or decreases their intensity.  Most importantly, be aware of how symptoms and pain affect your life.  This will assist your doctor in determining what is wrong and how best to treat it.  

Remember to trust your instincts, stand up for yourself, keep looking for answers and don’t be deterred. 

Lana Barhum lives and works in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant and mother.

Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.