Despite being around for several decades, the diagnosis of fibromyalgia is still widely misunderstood. Patients still struggle with getting a diagnosis, and when they do get a diagnosis helping their friends and family understand their invisible illness can be a challenge. What complicates patients’ lives even more are a myriad of myths and misconceptions that have developed over time that have made fibromyalgia a difficult disease to understand.
Myth #1- Fibromyalgia is a fake disease
Fibromyalgia has actually been around for centuries, just under different names. Yet every fibromyalgia patient has been informed at one time or another that their disease is all in their head. I once confided to a doctor acquaintance that I had been diagnosed with fibromyalgia. Her immediate reaction was revulsion and she was quick to tell me I couldn’t have it because people with fibromyalgia were crazy. Even educated doctors fall for this myth so it’s not surprising that other people do too.
Some of the reasons that people have a hard time believing fibromyalgia is real are:
- no single identifiable cause,
- symptoms are unpredictable and seem to appear out of nowhere
- patients are mostly women
- Symptoms don’t have easy explanation
However, in recent years research has been catching up with what patients have known all along: fibromyalgia is not fake nor is it “all in our heads”. Fibromyalgia is real and is now known to be a neurosensory disorder, meaning that people with fibromyalgia may be more sensitive to painful stimuli.
Myth #2- Changing your diet can cure fibromyalgia
Currently, there is no cure for fibromyalgia and there is no such thing as the fibromyalgia diet. People with fibromyalgia do spend a lot of time experimenting with their diet because some people notice a difference in their pain and energy levels when they eat certain foods and eliminate others.
One of the best ways for people with fibromyalgia to find out what food works best for their body is to keep a food journal. Patients should keep track of everything they eat in a day. They should also write down their pain levels and any other symptoms they have each day. After being diagnosed with fibromyalgia, I tried this. I kept track of my diet and symptoms for a few weeks, and I noticed that my symptoms were much worse when I ate processed foods. It took some trial and error to see what worked and what didn’t. Although I was never cured, eventually I did see a small reduction in my pain levels due to changing my diet.
Myth #3 – If someone looks fine they can’t be sick
Fibromyalgia is an invisible illness; it is not immediately visible when you look at someone. You would never know to look at me how much pain I’m in. Last night I cried from the pain, but I will take my daughter to her dance class today and no one will know that I am sick. It will look like I’m having a good day because I’m smiling, even though I’m hurting and am beyond exhausted. I hide behind my smile because I’m tired of explaining my illness. I hide because I’m tired of people not believing me, because I’m just too fatigued, because I don’t want people to try and fix me anymore. I hide because just for a moment I want to pretend that I’m healthy and that I belong with healthy people.
People with fibromyalgia are used to hiding their pain from others, but if you pay attention the signs are there. Their bodies may be too tense, they might be quieter than normal, or have too much makeup on to hide the fact that they’re pale from illness; the signs are there. Fibromyalgia patients are not faking their illness, they are faking being well to fit in.
Myth #4 – People with fibromyalgia just need to get more sleep
People with fibromyalgia are usually fatigued which can make living a normal life very difficult. Often the fatigue will be blamed on being tired, but tiredness is alleviated by rest whereas fatigue is not. Fatigue is with you every moment of every day. It can be there when you get up in the morning, and when you go to bed at night. It can be there even if you get a good night’s sleep. People with fibromyalgia often try to push themselves through the fatigue, but that can actually make them sicker.
When I first became sick I was convinced that if I just persevered through the fatigue I’d be able to do everything I needed to do. I tried harder to get more sleep, but it didn’t make me feel better. I pushed myself to do all the normal things I did before I got sick, but it always led to an eventual collapse. Each collapse would leave me sicker and each time it took me longer to recover. It wasn’t until I embraced the idea that I needed to physically rest often that I was able to stabilize my illness. While regular rest helped stabilize my illness, it did not cure it. Like diet, rest is a mechanism for managing your fibromyalgia, not curing it.
Myth #5- Only overweight people get fibromyalgia
Is fibromyalgia caused by weight gain, or is weight gain caused by fibromyalgia? Oftentimes the weight gain does not occur until after a fibromyalgia diagnosis. It’s not surprising that people with fibromyalgia are more likely to be overweight when you consider that patients experience pain and fatigue that lead to less exercise, disordered sleep, medication known to cause weight gain, multiple physical and emotional stresses, and metabolic problems known to cause weight gain. Before my symptoms began I was a healthy and athletic person that rarely had to worry about my weight. When I got sick I went from living an active lifestyle to lying on the couch, and I did gain weight. I reduced the amount of food I was eating but nothing could compensate for my lack of activity caused by my fatigue. Eventually, I started getting proper treatment; this allowed me to be more active which in turn helped me to start living a healthier lifestyle. The most important thing for people with fibromyalgia is to work on improving their health overall, and when that happens weight will be less of an issue.
The physical symptoms of fibromyalgia are very complicated, which is why no patient should have to deal with incorrect assumptions about their illness. There is still a lot to do to promote fibromyalgia education, but every time these misconceptions can be corrected it improves the quality of life for those who live with fibromyalgia.