I Have Fibromyalgia—And This Is What It’s Like to Live With This Incurable Illness

"When it's terrible, it feels like my body is both on fire and aching all over at the same time."

Too many of us have stories about struggling to access the care we need. Often, health care obstacles are directly tied to medicine’s gender bias, as well as stigmas relating to our race, ethnicity, sexuality, gender identity, age, size, income, and condition. In our series Pain Today, we are highlighting these stories through personal and reported essays, hoping to empower each other to advocate for our health in a way that much of the medical community does not.

At 16 years old, I was diagnosed with early-onset Fibromyalgia Syndrome. When I told my friends, they immediately asked, “Are you going to die? What even is that?” I laughed it off because I knew this diagnosis was coming. My mother has FMS and my grandmother has it, too. As sure as I was that I’d get small breasts, I was just as sure I’d get FMS. But I didn’t expect to have that conversation so early in my life. I thought I would’ve at least had a college degree before I worried about it.

I also didn’t expect to worry about how confused my friends were about it. If I were to get a migraine in the middle of us hanging out or cancel plans because my joints hurt too much to get out of bed, they would ask questions like:

“Why are you always canceling plans?”

“Are you really in pain right now? You look fine.”

“I read about FMS, and it doesn’t seem legit. Are you sure you have it?”

Unfortunately, this is pretty normal for people with FMS. Many people are confused by it, disregard it, and/or don’t even know where to start when it comes to researching it.

So whether you have Fibromyalgia Syndrome or know someone who does, here’s everything you need to know about the condition, coming from someone who’s had it for years:

What is Fibromyalgia?

Dr. Alex Tauberg DC, CSCS, CCSP®, EMR, owner of The Pittsburgh Chiropractor, tells HelloGiggles, “Those suffering from fibromyalgia have often undergone what is called ‘central sensitization.’ Central sensitization is when the nervous system is continuously bombarded with negative, painful input (nociception). This causes the nervous system to be on high alert. As a result, the nervous system is constantly firing and becomes more sensitive to even the smallest of inputs.”

So, your body is so overwhelmed that it doesn’t know which is a pain stressor and which is not. It’s all pain.

Fibromyalgia facts:

1. It’s unclear what causes fibromyalgia.

While some people think fibromyalgia is “bogus,” this is because there’s allegedly not much known about the disease at this time. However, not knowing everything about the disease doesn’t make it any less real. Dr. Ellie Heintze, ND, LAc, a naturopathic doctor and licensed acupuncturist at Starting Point Acupuncture, tells HelloGiggles, “The exact cause of fibromyalgia is not 100% understood but there can be a multitude of factors, including genetics, infections, and physical or emotional trauma which lead to symptoms.”

She continued with a startling statistic that I never realized. “The majority, around 80% of people diagnosed with fibromyalgia are women. Those diagnosed report widespread pain, muscle tension, debilitating fatigue, anxiety, and even headaches.”

what is Fibromyalgia

2. Fibromyalgia symptoms go beyond joint pain.

When people think of FMS, some believe the only problem it causes is within your joints. Just because someone looks fine on the outside doesn’t mean they’re not experiencing crippling pain. For me, the two biggest problems were my migraines and constant pain throughout my body. When it’s terrible, it feels like my body is both on fire and aching all over at the same time. According to the McGill Pain Index, fibromyalgia is right under childbirth. This means it’s one of the most painful things a person can endure.

Another huge issue is with your sleep. It’s a feeling of fatigue that no amount of sleep or caffeine can resolve. Harland Adkins, nutritionist, founder, and general manager of Fast Food Menu Prices, says, “Doing the simplest tasks, like making a meal, taking a shower, or getting dressed can exhaust the person to the point where they feel they must take a nap.” Despite being fatigued, sleep difficulties go hand in hand with FMS as well.

Along with that, my friends who also have FMS and I joke about how bad our memories are. Memory problems can comprise feeling “spaced out,” and unable to recall certain things. “It’s sort of like having momentary amnesia,” Adkins says. “Only you remember who you are. The brain sort of blanks out for a moment, and you can’t think. The connections aren’t being made.”

Other common symptoms are:

● Morning stiffness

● Muscle knots

● A spike in metabolic disorders

● Balance problems

3. Fibromyalgia pain can be inflicted by weather.

Adkins also points out that sensitivity to weather changes is a key sign of fibromyalgia. “People with fibromyalgia often have a hard time regulating their body temperature. They will get heatstroke or hypothermia a lot faster than someone without FMS,” she explains.

Despite living in Florida for over six years of my life, I couldn’t go outside for most of the summer. The heat was so debilitating to me. I’d make it a point to go out at night time if I was getting antsy around the house. Now that I live further north, the winters make my body ache more than it ever has. Truly, the changing seasons kick my butt every time.

4. There’ no cure for fibromyalgia, only treatments.

While there are over-the-counter ways to relieve fibromyalgia for a day, there’s no treatment yet that can solve it long term. Because of this, FMS treatment mainly comprises of self-care strategies and general lifestyle changes. These can include exercise, acupuncture, behavior modification therapy, and even chiropractic visits.

Heather Hall, RDN, LD, CLT, noted as “The Joint Pain Dietitian,” explains that one of the ways you can begin to reduce fibromyalgia symptoms is by understanding how your body functions with this condition. “Understanding that your body is causing your brain to misinterpret sensations… is useful information. Once you understand that there is no serious harm being done to your body, you can remove some of the fear associated with your condition. Mindfulness training and graded exposure can then be implemented. These tools can be useful for desensitizing the nervous system.”

Hall also explains that “most doctors are not trained in the dietary interventions that support fibromyalgia. So patients often never hear about these methods.” She discussed a supplement and diet that has “shown to improve symptoms and even lead to remission” in her own practice.

● Supplements such as vitamin D, selenium, CoQ10/ubi quinol, omega-3, and medical cannabis.

● An anti-inflammatory diet: healthy fats, low fructose, plenty of dark leafy greens, etc.

Of course, before you decide to include these suggestions in your diet, it’s important to talk with your doctor first.

Despite these options, people need to understand that it’s hard. I had a rather toxic roommate who said my illness “wasn’t real” and that all I needed to do was exercise more. While exercising helps with most of my pain, it’s difficult to push through it to do it. So we know we need to do certain things. We’re trying the best we can and just want support.