Shouldn’t Fibromyalgia Be Less Mysterious by Now?

A mystique surrounds fibromyalgia unlike any other disease. Symptoms present in an endless variety of ways, which can make it almost impossible to achieve a diagnosis. But sincerely, shouldn’t this disease be a little less mysterious by now?

I still remember the first time I met someone suffering from fibromyalgia in the early 90’s. She was a 30-something Appalachian woman, and I was visiting eastern Kentucky to interview her and several other members of the community for a documentary short I was producing. As the crew positioned lights and framed the shot, she and I sat off to the side and chatted.

Normally, I would have used this time to discuss the interview, but she was fighting through obvious pain and my expression of concern led our conversation in a much different direction.

Her story was filled with enigmatic twists and turns: The initial pain seemed to come out of nowhere… Her doctors ran tests, but the numbers came back normal… The pain got worse… The doctors decided it was all in her head… She finally found a doctor who diagnosed her with fibromyalgia… But, she still hadn’t been able to get approved for disability… Those in control of the purse strings still believed it was all in her head.

Her struggles really touched my heart – and her illness really touched my mind. I was intrigued by this mysterious disease that completely baffled her doctors. Every time I went to the library for weeks after we met, I would look up random articles on fibromyalgia. Had this not been years before the invention of Google, I probably would have become obsessed with fibromyalgia.

A Recurring Curiosity

Many years later, I did become obsessed with another medical topic – hormonal birth control. Consequently, women began sharing their stories with me, and on occasion, it would be a woman who had been diagnosed with fibromyalgia. Many of these women wondered what role birth control might have played in triggering their disease because of the timing of their symptoms.

Fibromyalgia still piques my curiosity. Several times over the years I’ve received one of these stories and thought that I should write an article about birth control’s relationship to fibromyalgia, but here’s the thing – there really haven’t been any significant studies looking at that relationship. 

Unfortunately, most of the top hits on Google Scholar look at hormonal birth control as a potential treatment for fibromyalgia rather than studying its potential for causing the disease. This is an all too familiar pattern among diseases that seem to be triggered by the steroids in birth control. Consequently (as is also typical with this pattern), there are very few examples of studies addressing the link, apart from one Turkish population study that observed the increased risk among birth control users.

Definition Defying

The use of birth control as the consensus treatment for fibromyalgia demonstrates an absurd lack of curiosity about one of the most fascinating diseases these doctors will ever encounter.  Obviously, it takes minimal effort for them to say, “Take this. It will reduce your pain.”

However, with only slightly more effort and an internet connection these doctors would discover that birth control probably isn’t going to be beneficial for the patient in the long run.

We will revisit the birth control connection in a moment, but first let’s consider the issues that have led to a dearth of understanding when it comes to fibromyalgia. In short, it is a systemic problem with speed bumps at every step in the process.

Our culture tends to worship analytics and metrics. Every business owner focuses on KPIs, margins, and EBITDA. Coaches and managers in every major sports league gamble with career-altering decisions based on analytics. In short, modern decision-making depends almost exclusively on our ability to put a number to something. Western medicine is no different, but fibromyalgia doesn’t play by those rules.

First, depending on her symptoms, it may be difficult to know which biomarkers to measure. Then, it may be equally difficult to know what normal looks like. My evidence is anecdotal, but my metrics tell me that every woman living with fibromyalgia, while seeking a diagnosis, has been told by a doctor at some point that her numbers were normal.

Fibromyalgia doesn’t abide by metrics, nor does it respect the compartments we have carved into our approach to medicine.

A Categorical Disaster

From the onset of the disease through diagnosis, fibromyalgia can leave the patient uncertain of which specialist will be most able to help because the disease doesn’t fit nicely into our defined medical categories. Rheumatologists, neurologists, internists, psychologists, and even pain management doctors can all serve a valid function in the treatment.

Most of those are self-explanatory, but I would like to pause a moment to point out that the reason a psychologist might play a role has nothing to do with the misperception some have that the pain of fibromyalgia is sometimes imagined.

In many ways, the debate over the role of physiological versus psychological factors has been at the heart of what continues to make fibromyalgia so elusive, but a few determined scientists believe they are making headway.

One respected trailblazer, Dr. Manuel Martinez-Lavin, believes that the sympathetic nervous system plays a key role in the symptoms that define fibromyalgia: pain, fatigue, pins and needles sensations, headaches, and fogginess.

He theorizes that chronic pain changes our dorsal root ganglia (DRG), which alters everything about the way pain transmits through the sympathetic nervous system.

Normally, when we encounter pain, the pain signals are collected in the DRG before being transmitted through the spinal cord to the brain. The immediate response of the brain is to get rid of whatever is causing the pain. It releases chemicals like epinephrine to turn off the nerves that relay pain so that we can focus on getting rid of what is causing the pain.

However, when we are exposed to chronic pain, the DRG begins to sprout and grow. The epinephrine begins to have the opposite effect, turning the pain-sensing nerves to hyperactive mode, and creating a positive feedback pain loop within the sympathetic nervous system.

The Missing Link

The chronic pain/stress relationship creates a bit of a chicken/egg scenario that can vary among individual patients. And, regardless of which comes first, the ultimate realization is that hormones are incredibly important, and incredibly underrated.

First, the gender ratios alone should tell us that hormones play a key role in fibromyalgia. While recent pushback by some advocates has called into question whether diagnostic tools used to identify fibromyalgia might skew the numbers, nobody doubts that this disease is much more discriminatory towards women. It has traditionally been accepted that about 80-90% of fibromyalgia cases are women.

Many scientists have long believed that progesterone likely plays a pivotal role in fibromyalgia because of its complex relationship with pain. A recent study by Dr. Jarred Younger PhD at the University of Alabama at Birmingham set out to shed a little more light on the role of sex hormones. After observing women throughout their menstrual cycles, his team discovered that there was indeed an inverse relationship between pain and progesterone levels, as well as a similar but less dramatic relationship with androgens like testosterone, meaning as these hormone levels go up, pain sensitivity goes down.

When his team submitted their study for review, one peer suggested that they needed to include a look at cortisol levels in order for the study to be complete. The new results were intriguing. They discovered that there exists a strong direct correlation between pain and cortisol levels, meaning as cortisol goes up, so does pain sensation. How does that translate into the real world?

As an example, if a woman with fibromyalgia experienced a very stressful situation during the follicular phase of her cycle while her progesterone levels were at their lowest, the spike in cortisol could cause her to have a major flare up. 

Unfortunately, because of the medical community’s limited understanding of hormones, this information, in isolation, leads some doctors to think birth control will help mitigate the patient’s pain, and that may be true in the short term.

Get to Know Progesterone

Here’s the problem. While the steroids in “hormonal” birth control mimic natural hormones, they are not the same. If it were just the presence of natural progesterone that influenced pain receptors, then an artificial chemical that mimics progesterone (such as the progestins in birth control) might be sufficient, but that isn’t the case.

Two enzymes within the brain and spinal cord convert naturally produced progesterone into allopregnanolone, which provides the calming effect attributed to progesterone. When those same enzymes interact with the artificial steroids in birth control, it creates agonists that can induce different biological actions in the central nervous system.

Those differences are hard to predict, and it could take some time for them to manifest. Sadly, the Frankenstein effect on allopregnanolone may only be the rumbling thunder at the head of an impending storm.

A Self-Perpetuating Perfect Storm

When a woman’s body detects the steroids in birth control mimicking her hormones, the body begins to shut down production of those natural hormones to avoid the chance of over-proliferation. That leads to a cascading and lingering effect on women suffering with fibromyalgia.

Beyond the issues surrounding her depleted natural progesterone, the birth control flattens her normal cycle and leaves her in a state similar to the early follicular phase, meaning she is consistently more prone to flare-ups due to stress. Not only that, but studies have revealed that the depletion of natural estrogen leaves her body more reliant on androgens like testosterone to modulate pain sensitivity.

But, here’s the real kicker. While it isn’t surprising to learn that birth control can inhibit your production of natural estradiol and progesterone, it is shocking to learn that it also inhibits your production of androgens, including testosterone.

In short, birth control removes every natural defense your endocrine system has for mitigating the pain associated with fibromyalgia. But, it gets worse! Another study demonstrated that using birth control actually increases your production of another hormone — cortisol, the same hormone Dr. Younger found to dramatically increase pain sensitivities.

Chicken or Egg

There is at least some evidence that chronic stress and the elevated cortisol levels that come with it could play a role in triggering the onset of disease for some people. A retrospective population based cohort study released in 2020 found that people who suffered childhood maltreatment were more than twice as likely to be diagnosed with fibromyalgia as an adult. While it remains unclear how that state of trauma early in life eventually becomes pathogenic, their numbers also demonstrate that women experiencing childhood trauma were much more likely to develop fibromyalgia than their male counterparts. So, beyond cortisol, sex hormones still seem to play a significant role.

What makes findings like this interesting is that they highlight and expand upon the slivers of truth that were recognized in the early days. From the beginning, most doctors recognized fibromyalgia as a musculoskeletal pain disorder that often improved when the “emotional stress” went away. Of course, this translated into a belief that the symptoms were largely psychosomatic.

Modern research is revealing physiological explanations for the pain/stress relationship, and demonstrating that it has never been “all in their heads.” But, as with any intriguing mystery, every answer seems to spawn more new questions. Fortunately, the results of one recent study could begin to tie up many more of these loose threads.

A team led by Dr. Andreas Goebel from King’s College in London questioned whether fibromyalgia might be an autoimmune disease. After all, several autoimmune diseases, such as lupus and MS, are similarly discriminatory toward women. Plus, there seems to be a genetic component to the disease, since it tends to run in families.

To test their theory, Dr. Goebel’s team injected mice with IgG antibodies from fibromyalgia patients, and the mice quickly became more sensitive to pressure and cold. Under normal circumstances, IgG antibodies serve an important role in our immune system, helping to fight off toxins and activate other parts of the immune system.

This study illuminates the probability that IgG antibodies in fibromyalgia patients have gone rogue.

The Autoimmune Angle

As a quick refresh on autoimmune disease, keep in mind that every cell in every system of our body has receptors to which hormones attach. (Again, it cannot be overstated how important hormones and a healthy endocrine system are to our ongoing health.) When our natural hormones attach to these receptors, they deliver important messages. For example, it may deliver a cue that the immune system needs to be activated.

However, when chemicals that mimic our natural hormones get into our system, they attach to those same receptors, only they aren’t carrying the messages the receptors expect. The result is often that our immune system is activated, but it doesn’t know what to attack. Consequently, it ends up attacking healthy tissue.

Imagine your body is like a game of telephone. Everyone lines up, and each person represents a cell in your body, we are going to whisper a sentence to the first person in line, and then relay it person-to-person down the line to see how distorted the message becomes by the time it makes its way to the end. All fun and games, right? Now, let’s throw a couple of people in line who don’t speak English. They will do their best to mimic the sounds they hear, but without a real understanding of the language, it’s easy to see how the message will begin to fall apart.

While this study did not attempt to identify which foreign chemicals might cause the IgG antibodies to go rogue, it did help clear out a stumbling block that had stumped researchers for years. Numerous scientists previously wondered whether autoimmunity might play a role in fibromyalgia, but they kept getting misdirected by the lack of inflammation, a common calling card in autoimmune diseases.

Lead investigator in the mouse study, Dr. Goebel, theorized that autoantibodies may be causing pain without inducing inflammation by tweaking receptors on glial cells surrounding the dorsal root ganglia (DRG). Suddenly, as you may recall from Dr. Martinez-Lavin’s previously mentioned work, our mystery now had a recurring suspect.

Sure enough, Dr. Goebel’s mice developed hypersensitive nerves in the glial cells surrounding the DRG. While these changes happened in the cells outside the spinal cord, the cells inside the spinal cord continued to operate normally. In fact, the fibromyalgia in the mice materialized as a localized attack on only the cells surrounding the DRG and never affected the interior of the central nervous system, and never increased systemic cytokine levels. Hence, no inflammation.

In other words, though they were in a great deal of pain, their tiny mouse doctor would likely tell them that their numbers came back normal.

Real World Experience

Clearly, a lot of exciting research has been swirling around fibromyalgia in recent years, and we seem to be getting close to finding some real answers. But, the question remains – shouldn’t it be a little less mysterious by now to the doctors who are diagnosing it?

To me, their behavior after all these years is even more mysterious than the disease itself. It feels like they still walk into the exam room singing a line from Bob Seger, “Working on mysteries without any clues…”

But, there are plenty of clues. The problem is they are being denied and ignored.

I would like to share some excerpts from an email conversation that I recently had with a woman named Tamsin. She reached out to me after reading my book. I thought about summarizing her story but decided that keeping things in her own words would better reflect the extent of her struggles. 

One reminder, my book is about birth control, not fibromyalgia. In fact, fibromyalgia isn’t even mentioned in the book, but its content affirmed her doubts and empowered her to connect the dots for herself. It would be impossible to express how happy that makes me. 

Here’s her story:

Tamsin’s Story

I suppose the word enjoyed isn’t really the right word to use but rather the word validated. I finally felt that what I went through was being validated by someone, so thank you so much for that. After so much gaslighting from doctors it was a huge relief to have found and read your book and to gain some understanding as to what happened to me. 

Yaz destroyed my health five years ago. I’m so much better now after a long road, and I still suffer from damage and neuropathy that I think I will have to live with for the rest of my life, but I am so grateful that my body has been able to heal and function again. I ditched the doctors in the end, and all of the ridiculous amount of pharmaceuticals they put me on, and went the natural route instead. For me that has been life-changing, and if there is anything positive I can take out of this whole experience, it is that I have an entirely new perspective on health and the medical and pharmaceutical industry in general. 

I specifically found the chapter on diabetes really interesting – high elevated blood sugar levels were the only thing that doctors could find “wrong” with me. Never mind that I had excruciating pain in my eyes, light sensitivity, black eye floaters, unbearable anxiety, heart palpitations, pins and needles in my hands, feet and face, blinding headaches, pressure in my face, muscle spasms in my neck and shoulders, extreme fatigue – the list goes on. 

At one point I couldn’t even move my eyes from side to side as it felt like the muscles in my eyes were frozen. I could no longer drive and had to stop working as I couldn’t even look at a computer screen. None of these symptoms were taken seriously by the doctors that I saw. I was told it was anxiety; my best was that it was the weather causing it! I finally had an ophthalmologist make a fibromyalgia diagnosis and I was sent to a neurologist who put me on Cymbalta which only made my body go into more of a tailspin. It was a year and a half into all of this that I suddenly realised the timeline of when the first symptoms started to appear – 4 months after I had started Yaz. But when asking doctors whether Yaz could be the culprit, most shook their heads and told me it was very unlikely.

TIME OUT! 

Time out! It sounded absolutely bonkers to me that an ophthalmologist ended up diagnosing Tamsin. I’m not saying I doubted her for a moment. It’s just that an eye doctor is the last specialty that I would have thought of adding to the list.

I reached out to Dr. Anne Malatt, an ophthalmologist and eye surgeon in Alstonville, Australia, who told me that, after reading my book, she changed the way she takes family histories and how she considers the effects of birth control on her patients. She responded to Tamsin’s story with this:

One of the many beautiful things about being an ophthalmologist, is that we get to look into eyes, which are literally a window into these precious bodies of ours. We can see a lot, and sometimes are able to diagnose conditions that have, until then, remained a mystery to other doctors. Sometimes we pick things up before they have been found elsewhere in the body, and sometimes we find complications of other diseases, or of their treatments.

Okay, clearly it didn’t seem crazy to her that an ophthalmologist spotted Tamsin’s fibromyalgia. Sure enough, in 2021, the journal, Survey of Ophthalmology published an article about eye problems in fibromyalgia patients. It is not uncommon for these patients to experience dry eyes, blurred vision, and foreign body sensation in their eyes. The article goes on to say that physiological changes to the eye could contribute to the pathogenesis of fibromyalgia, including a thinning of the choroid, thinner retinal nerve fiber layer, and changes to the optic disc.

Even more astounding, a Korean population study published earlier this year (2024) in the American Journal of Ophthalmology found that patients with fibromyalgia more than doubled their risk of developing optic neuritis, with the greatest risk being among older men (>60) and women aged 20-39.

After discovering this, I felt like I had spent the last couple of months binge-watching a show but had somehow skipped a very important episode. 

Ophthalmologists really could begin to play an important role in diagnosing fibromyalgia.

The Struggle Continues

At any rate, after her doctors assured her that Yaz probably had nothing to do with her symptoms, Tamsin continued taking it for a few months – a decision she now regrets.

She continues her story:

I finally started to come around to the realisation that maybe the doctors were wrong. After all, not one of them had a proper diagnosis for what I was experiencing. This was my turning point and I finally came off of Yaz and took my health into my own hands. But coming off of Yaz wasn’t a quick fix and if anything it got much worse in the months following as I think my body just didn’t know what to do with itself. 

I was on Yasmin in my twenties and if I look back now I can make the connection on a number of the same symptoms I had back then too – although they were much milder in comparison to this, they were there! Like I said, it has been a long road, but one that I am grateful for in the weirdest of ways. It was the wake up call I needed for my health and totally changed my viewpoint of numerous things in life. One thing is for certain – I feel like I went through this so my two daughters will never have to; I will not allow either of them to ever take the contraceptive pill, that is for sure!

Science may have yet to validate the connection between birth control and fibromyalgia, but a growing number of women have recognized it in their own experience, and they’re doing something about it. As it turns out, the communication breakdown may start with hormone receptors, but it clearly doesn’t end there. After reading a preview of this article, Tamsin pointed out that in South Africa the child’s game is fittingly called, Broken Telephone.

For those women who feel they had to fight to get a diagnosis, and, in fact, any woman who suspects The Pill has caused disease-like symptoms, but your doctor dismisses your concerns, here is a final word of encouragement from Dr. Malatt:

For most doctors, the oral contraceptive pill is still a huge blind spot. So we don’t ask the right questions. I always ask about The Pill and any other drugs, and the temporal relationship between taking the drugs and the onset of the symptoms, as drugs in general and the Pill in particular cause many more problems than we realise, because we don’t ask.

Of course we have to find doctors we trust and be guided by their expert advice. We need our medical professionals to support us through life. But our body is the marker of truth and always speaks loud and clear. Listen to what your body is telling you, honour it, and if you think you are reacting to a medication, you probably are. Talk to your doctor, and if they don’t listen to you and take you seriously, find one who does.

Trust Your Questions

I love that phrase, “Our body is the marker of truth.” 

Yes, fibromyalgia is a complex disease. Yes, the mysteries run deep. Yes, doctors have been trained to think The Pill will not cause disease.

However, our bodies are the markers of truth, and the truth cannot always be easily measured by any metric. A patient can feel when things have changed in their body. They can sense when things aren’t right, even when the numbers say otherwise. That is why I wrote in my book, “Trust your questions more than the answers.”

If you encounter a doctor who doesn’t believe you or dismisses your concerns, don’t let it stop you from getting the treatment you need. That’s simply a doctor who isn’t ready for the challenge of a mystery. This translates to another basic truth – the complexity and mystery surrounding fibromyalgia may require you to be a stronger advocate for your own health. Don’t shy away from support groups or similar groups on Facebook. Get as many “detectives” as possible thinking about your case.

Keep going. Keep digging. Don’t give up, because being better informed is the best way to make even the  deepest mystery less mysterious.

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