Medically reviewed by Dr. Milorad Radusin, MD
For many people who suffer from it, “fibromyalgia” is just as much of a mystery as it is to those who have never heard of this peculiar chronic pain disorder.
This is because the condition not only goes widely under-the-radar but doesn’t actually describe much; fibromyalgia is a term used to refer to a vague chronic pain and mental cloudiness that there is currently no cure or explanation for, something that makes the lives of many people more difficult than they have to be.
Doctors typically reach the diagnosis of fibromyalgia by eliminating all other options, something that can ultimately be more confusing than helpful to the person it’s affecting.
What Exactly is Fibromyalgia?
Fibromyalgia is a chronic condition that leaves patients in pain for inexplicable reasons. Symptoms of fibromyalgia are typically (but not limited to) stiffness, chronic pain, mental fog, and fatigue.
Another confusing aspect of the problem is that fibromyalgia is often associated with other disorders such as Irritable Bowel Syndrome (IBS), mood disorders, and even chronic migraines.
Having such a condition associated with something like IBS makes it difficult for the patient to know exactly where the pain for IBS ends and the fibromyalgia begins, something that is largely the biggest reason as to why the latter is typically not diagnosed until a patient has gone through many trials and tribulations.
This also becomes complicated for doctors, who are more likely to diagnose the patient with something more treatable than fibromyalgia in an effort to manage the symptoms, but only to ultimately fail. It’s worth noting, though, that these situations are admittedly sparse, largely due to the fraction of people that actually suffer from the condition (about 1-2% of the general population).
Because there is no way to completely explain or treat fibromyalgia symptoms, doctors often have no choice but to refer patients that are suffering from it.
Moreover, many people who are diagnosed as having fibromyalgia often go to doctors claiming that they’re suffering from arthritis or another form of chronic pain, something that can surely make things more complicated than not.
For those who want a succinct description of what fibromyalgia is, this is a great YouTube video that goes through the basics in a minute.
There Can Still Be Hope
This seemingly large rabbit hole surrounding fibromyalgia’s mystery doesn’t necessarily mean that all hope is lost; in fact, there are some researchers looking for an explanation for fibromyalgia in areas of healthcare that might not otherwise be explored for other types of chronic illness.
By looking at potential causes in other areas of medicine, doctors hope to find a cause that they can then target and hopefully treat to reduce the effect that fibromyalgia has on the body.
For example, some scientists are looking towards psychology as a means of explaining this mysterious condition. Associating fibromyalgia with neurology would mean that there is certainly more precedent for those who are mentally affected by the condition.
The scientists who are interested in this type of explanation justify it by arguing that perhaps there is a type of direct relationship to the brain being overprotective and the body experiencing pain.
As a precaution for something happening to the body, the brain sends out signals related to the pain so the person involved can be aware that there is potential for something to happen.
The only difference between this and other indicators of pain is the possibility that there isn’t actually a threat to the body, making the pain persisted and without reason.
Of course, this research is still in its infancy and not a reliable path to necessarily go down yet. However, it’s a pretty good example of the many different ways that scientists are looking to expand research on fibromyalgia to perhaps find a solution that can eventually lead to an effective course of treatment.
How Do the Symptoms Affect Patients?
As we mentioned earlier in this article, many of the symptoms associated with fibromyalgia are found in other chronic conditions as well. For example, people who deal with rheumatoid arthritis could suffer from similar pains as those who have fibromyalgia.
This typically manifests through concentrated pain in certain areas of the body while the precise location of the pain can’t always be identified.
Patients suffering from this type of pain describe the sensation as a distinct throbbing that does not go away, usually inciting feelings of restlessness and a desire to move the joint in order to ease the pain.
What people suffering from this pain eventually find, though, is that it doesn’t go away with time, something that can be incredibly concerning.
The restlessness associated with chronic pain can also be a separate symptom on its own, with many patients diagnosed with fibromyalgia reporting trouble with sleeping, staying focused, and being able to meditate.
However, a very prominent complaint of fibromyalgia is a mental fog that can’t be described as efficiently as other symptoms. What patients do report, though, is that they have trouble getting their daily tasks done due to an inability to process what is going around them.
This could be described as a fog because patients feel like there is something clouding their proper judgment, typically overthrowing their ability to perceive what is going on at any given moment.
For some, this can cause a sensation similar to dissociation, another mental condition that can be very debilitating for people who suffer from it.
This is also associated with another mark of fibromyalgia—the condition frequently goes along with mental disorders that similarly debilitate patients in many ways, something that can be particularly distressing for those who don’t understand it.
For example, if somebody is dealing with dissociation as the result of PTSD and also has fibromyalgia, the treatment for the former won’t make the latter go away and can further blur the line, making it more difficult to diagnose in the long run.
The mental aspect of fibromyalgia combines with the physical elements to form what is most commonly associated with the condition: fatigue.
This is why people who try to describe fibromyalgia best describe it as being made up of fatigue, as the person affected usually experiences a significant amount of mental confusion on top of having trouble moving due to chronic pains.
Fibromyalgia Can Affect Your Quality of Life
People who suffer from fibromyalgia might be relieved somewhat by a proper diagnosis, but the diagnosis is usually made after a long time.
The condition can really affect one’s way of life, making it impossible for them to live their lives as they once did. Because there is no cure, people affected by the condition must deal with the symptoms by adjusting their life around it, affecting the ways in which they socialize, travel, and work.
The neurologist Dr. Steven Novella elaborates on this in his article “Is Fibromyalgia Real?”, saying that “[the symptoms of fibromyalgia] often take a great toll on quality of life.” He then goes on to describe how this affects patients experiencing such symptoms, saying that they typically feel caught in the middle with regards to how they’re supposed to be dealing with the symptoms.
Many patients are given mixed messages from their doctors who also don’t know what to do, something that makes fibromyalgia a truly controversial diagnosis for somebody to take on.
Some People Find Solace in a Happy Ending
Most people who suffer from fibromyalgia will not have a solution for their symptoms, but some might even have the rare cases in which their symptoms mysteriously go away from what can only be assumed to be natural causes.
This is especially bizarre when you take into account how many various aspects of the symptom seem incredibly persistent.
Fibromyalgia Is Difficult to Research
Though more people know about the condition now, fibromyalgia is still relatively obscure since the term became popularized in the 1990s.
The man who was involved in setting the criteria for the diagnosis, Dr. Fred Wolfe, has contributed some of the most enlightening analysis to those wishing to learn more about it, sometimes even highlighting how mind-boggling and confusing the information can be.
The reason why Dr. Fred Wolfe believes the current information available about the condition to be incredibly misleading is that there isn’t enough quality research on the topic to actually determine any useful information.
For example, there are more than 10,000 articles that are about fibromyalgia available through PubMed, but a small proportion of these articles include any information about clinical trials that might actually provide useful data.
Though these studies typically reference the idea of looking for other symptoms or medical areas that could possibly help with understanding and subsequently treating fibromyalgia, it is mainly filled with numerous red herrings that do more to confuse doctors and patients than actually guide them.
In a blog post discussing this in-depth, Dr. Fred Wolfe narrows it down to an issue with the experiments themselves.
Within this category, he designates 5 different reasons as to why there is an abundance of pointless research on the issue:
Counterproductive “Normal” Controls
One of the biggest misinterpretations of fibromyalgia by people running experiments about it is that the controls used are typical of the “normal” variety. This is an issue because it presents the wrong idea of what we should be comparing the symptoms of fibromyalgia with.
If somebody is experiencing extreme symptoms of fibromyalgia in addition to having other chronic conditions, we shouldn’t be comparing them to somebody who has no chronic conditions, as it paints a false picture of what fibromyalgia exactly is.
For many, the condition is an extension of other problems and symptoms they might have, making it ineffective to consider the resulting symptoms evidence on their own.
Bias Often Takes Hold
Some of the studies surrounding fibromyalgia end up being biased whether or not it is the intention of those involved. This often manifests in those who are conducting the research believing that there are certain limitations to understanding the issue itself, therefore ignoring certain aspects of the data in order to support their pre-existing claims.
Through doing this, the people conducting the research are able to get the exact results that they want by ignoring the parameters that might tell them something they don’t know, ultimately affecting the type of positive coverage that is documented regarding the condition.
They Often Don’t Follow Regulations
Fibromyalgia studies often don’t hold themselves to the standards required by many publications, something that disqualifies them from being taken seriously as a matter of principle.
This invalidates a lot of the current research involving the condition, as they are not analyzed with the proper criteria needed to be considered legitimate research in their field. So, while you can easily find many trials and analyses of the topic, it’s much less likely that you’ll find something that actually qualifies as sound research.
One of the biggest aspects of fibromyalgia research that is counterproductive is that a large portion of many studies relies on the participants being able to recall events that happened to them previously. To those who are familiar with how information is collected for studies, this should immediately be a red flag; asking participants to rely on their memory to recall certain events is frequently viewed as a problematic practice when conducting clinical trials.
This is because memory is not as strong as we would like to think, with many memories being affected by the influence of time. This aspect also creates room for bias to affect the participant’s memories, something that can be very negative for anybody trying to conduct an ethical study and surely invalidate the results.
Not Using Data Efficiently
Among the different trials that have been performed and published, a lot of them have dodgy reasoning and collection of the research data. For example, many studies will suffer from data p-hacking/tampering or even taking multiple looks at different sections of the data until the desired results are seen. This is a grossly unethical approach to conducting clinical trials and is often frowned upon.
So, as you can see, while it may seem like there is a good deal of research regarding fibromyalgia, a lot of the available research was not conducted or analyzed properly and therefore should not be considered accurate.
What Is the Future for People Suffering From Fibromyalgia?
Though there is no real treatment with which complete effectiveness can be guaranteed, there are some things that those suffering from fibromyalgia can do to help adapt their lives to the condition.
The first option is Cognitive Behavioral Therapy (CBT). This type of therapy is a sort of psychotherapeutic treatment that helps improve overall mental health by encouraging patients to interact more frequently with topics that are presumably difficult to process.
CBT is meant to be a starting point for more healthy coping mechanisms, a way for people who struggle with processing certain matters to find more productive ways to deal with their mental traumas.
This relates to fibromyalgia because the potential neuropsychological explanation for the condition could be linked to therapy. Because the way our bodies experience pain is typically a coping mechanism for something, addressing and subsequently working through one’s mental conditions can be a way to untangle some of the issues that could be influencing the fibromyalgia symptoms.
For those who would prefer to try a medication to solve their chronic pain, doctors will sometimes prescribe the drug Amitryptiline as a way of curbing the mental distress and chronic pain that fibromyalgia can bring.
Amitryptiline is an anti-depressant that can have potentially distressing side effects, largely due to its status as an old-school drug that was developed before we understood mental illness in more nuanced ways.
However, despite this association, it has been shown to have some effect on fibromyalgia symptoms in a certain proportion of affected individuals, making it at least worth trying for those who feel truly overwhelmed by the symptoms of fatigue and mental fog (both symptoms that double as indicators of clinical depression).
Another one of the ways that doctors have tried helping patients reduce the effects of their fibromyalgia symptoms is to incorporate exercise into their schedules.
This might seem like a very common way to treat mental disorders, but the positive benefits that exercise can have on a well-being are certainly there. It can also help revitalize the body physically in areas that individuals are able to strain, giving them the potential to also increase the physical mobility.
Many who don’t exercise frequently underestimate the benefits physical activity can produce but there is a wonderful multitude of different ways in which it’s possible to increase an overall health by utilizing exercise as part of the daily routine.
Beyond the physical benefits, dealing with fibromyalgia might also be assisted by the potentially improved mental conditions that can be helped due to exercising releasing endorphins in your body each time you keep at it.
For more specific methods of dealing with certain symptoms, there are specific types of practitioners that you might want to consider reaching out to.
For example, rheumatologists typically specialize in symptoms relating to arthritis, but also give a heavy amount of insight regarding chronic pain. This can be useful if you’re unsure about where exactly to begin with your symptoms.
Psychiatrists can be health professionals to start with for those trying to understand how to cope with their mental fog and fatigue. Seeing a psychotherapist is technically a requirement if you want to pursue CBT, so they naturally go hand-in-hand. The power of regularly attending therapy is something that is frequently underestimated, though, making it something that is surely worth highlighting.
For those looking to improving their symptoms by relaxing their muscles, seeing a massage therapist can be a good place to start.
This is because massaging given areas that are affected by chronic pain can help improve the given symptoms, something that is not a permanent solution but can surely take away some of the stress involving daily activities.
Though there are many more specialists that you can look into, we recommend that people experiencing symptoms of fibromyalgia look into the aforementioned consultants in order to begin exploring possible treatment options.
We do want to reiterate, though, that there is currently no cure for fibromyalgia, so these are only ways in which one can try to soothe the symptoms as opposed to scientifically and permanently treat them.
There are many different ways in which one can approach fibromyalgia, whether it be trying to tackle physical symptoms, understanding insomnia better, or even undergoing the process of CBT in order to target any potential mental health causes.
No matter which route is chosen, though, the fact remains: fibromyalgia is a condition that is currently inexplicable and as a diagnosis isn’t completely a description of what something is but also pretty much of what something isn’t.
Though there has been researched into the topic for over 20 years now, a lot of the research and analyses that exist do not comply with what we consider to be accurate or helpful, something that has greatly affected our ability to understand the condition itself.
This doesn’t mean that there isn’t hope in a future where we can potentially treat fibromyalgia, but it certainly means that there is probably a long road until we get there.
Thankfully we are aware of the issue and looking into it, something that will, without doubt, provide solace for patients and doctors for years to come.