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My Symptoms Were Dismissed By Doctors For Over 3 Years — Until I Was Diagnosed With Fibromyalgia

Author:

Shannon Kaiser

July 23, 2022

By Shannon Kaiser

mbg Contributor

Shannon Kaiser is the best-selling author of 5 books on the psychology of happiness and fulfillment including The Self-Love Experiment, Adventures for Your Soul, and Joy Seeker. She has a B.A. in Journalism and Communications from the University of Oregon.

Image by Shannon Kaiser / mbg creative

July 23, 2022

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While some health issues are visible to the outside world, many people face chronic conditions that don't have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen's series, we're giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

It started off subtly. A bit of muscle aches, some body pain, along with some stiffness. Brain fog would set in, along with fatigue and headaches, but all this came and went. Some days were better than others. It was easy to just chalk it up to being stressed, getting older, PMS, or simply anxiety about the state of the world. After several months of feeling these symptoms regularly, and gaining weight, that I couldn't seem to lose, I went to the doctor, and we ran a full panel of bloodwork. She examined the data and exclaimed, "I don't know what you are doing, but keep doing it. You are in optimal health—these results look great." Assuming she knew better, I carried on with my life.

My bizarre symptoms led to even more confusion.

The symptoms continued and became more regular. Less than a year later, I woke up with the left side of my body numb and unable to see out of my left eye. I went to the emergency room. After running through some neurological tests, the doctors said, "We think you're having a stroke" and kept me overnight to run even more tests. The entire time, I kept thinking, How did I get here? I don't belong here, yet I am here. It became clear that the Universe always puts us where we need to be to get the lessons our soul needs most. So I surrendered. I prayed. I trusted. As it turns out, I didn't have a stroke (thank goodness), but at that time, I was diagnosed with complex migraines, which are rare non-life-threatening migraines that have the same symptoms as a stroke.

Assuming I was out of the woods and on the road to recovery, I left with a skip in my step. But over the course of the next several months, my symptoms got even worse as my fatigue turned into days of chronic exhaustion and even more weight gain, accompanied by severe depression and sharp body aches—to the point of being bedridden with muscle pain for days at a time. I needed to know what was causing this full-on body breakdown.

Over the past several years, I had been through a host of primary care physicians, neurologists, rheumatologists, and spiritual healers with no real progress in my symptoms. Fed up with feeling dismissed by doctors only focusing on one symptom at a time and telling me it's all in my head, or my favorite, "If you just lose weight, all the symptoms will go away," I set to take control of my own health by taking a new approach.

It took years, but I finally discovered a diagnosis.

My body and intuition were screaming at me, as if to say, "Keep listening to your body and trust yourself." Which led me to a more holistic, functional medicine team. I aligned with doctors and health coaches at Parsley Health and switched my primary care doctor to an internal medical team, with the goal to get to the root cause and look at all factors: mental, environmental, physical, spiritual, and emotional.

More than half of Americans cope with a chronic illness, and many of these cases could be improved with a root-cause approach including nutrition and lifestyle changes. I began to be more proactive, doing everything in my power to feel better by educating myself and looking more closely at the mind-body-spirit connection. It was the internal medicine doctor who first suggested a sleep study; after taking it, I discovered I had severe sleep apnea, where I would stop breathing in my sleep, up to 300 times a night.

Listen to your intuition and trust your gut, speak up and share your needs.

Addressing sleep was one positive step forward but only one layer, as my sharp body pain continued. After almost three years of suffering on and off from the same symptoms, and ruling out all other conditions, I was officially diagnosed with fibromyalgia—a long-term chronic condition that causes extreme muscle pain, brain fog, depression, headaches, chronic fatigue, and sleep apnea.

It is a very misunderstood condition, and even within the medical community, there are different levels of awareness of this condition. Research links common triggers to why some get fibromyalgia, such as infections and traumatic life events such as abuse, accidents, even being born premature—all of which I had. It affects 2 to 4% of the population, mostly middle-aged women, and the symptoms that are ever-changing in duration and intensity affect each differently. Having a diagnosis was a relief because I can now navigate this with education and proactive daily focus. In living life with a chronic condition, I've learned a few things that may help you and your loved ones on your health journey.

Everyone is on their own journey.

There's no cure for fibromyalgia at the moment, but treatment focuses on reducing symptoms and improving quality of life for some, with medications, self-care strategies, and lifestyle changes, such as movement, improving your sleep environment with the right mattress, and for me an anti-inflammatory diet. In my book Return to You, I have a chapter on the importance of trusting your own path and trusting your journey.

But what works for one may not work for another. It is important to find a balance and discover what does work for you. Some days the pain is so debilitating I can do nothing but lie in bed. These flareups can affect my mental health, but there are also good days. When managing a chronic illness or any diagnosis, it is essential to focus on what you can do versus what you can't.

Research shows that focusing on your pain and other symptoms results in an increase in what you're feeling. By shifting focus to solutions, we can help ease the mental and physical distress. Things like connecting with others, healthier food choices, physical activity, getting quality sleep, and listening to your body are all practices to help navigate each day with more grace and ease.

Listen to your body and intuition.

For years doctors told me I was OK. But I didn't feel OK. Being overweight, suffering from body aches, chronic fatigue, and debilitating migraines on the regular was not normal—or OK. At first, I kept listening to the outside world, which kept me from honoring my inner world. My intuition led me to keep going to get to the official diagnosis. Always trust yourself because how you feel is more important than how your doctors think you look.

With invisible conditions, like fibromyalgia, it's important to speak up and share your inner world with the outer world. After all most diseases and imbalances don't happen overnight. They are a slow manifestation often creeping in silently, as our body whispers, but we often ignore it, and only when something is seriously off in our bodies and our lives are interrupted do many begin to take note. My body was screaming at me, "Hey lady, it's time to listen to me!" Your body is always trying to send signals and talk to you. It is up to us to listen.

Your pain has purpose.

I was so fed up with feeling horrible in my body, seeing firsthand the devastating effects of feeling dismissed and gaslit by the traditional medical community and how it can rob us of a quality life, that I set out on a journey to discover and educate myself on more holistic ways to mental, physical, and spiritual well-being.

In an effort to save my own life, I trained with and learned from some of the world's leading experts in functional medicine, Chinese medicine, and Ayurveda. I channeled my pain and personal experience into education, and this has inspired me to become a certified health coach with mindbodygreen and train in functional nutrition. What we go through is not in vain. It is important to share our experiences with others and let our experiences uplift and empower us versus victimize or debilitate us. We can help others as we empower and uplift ourselves.

Be your own health advocate.

The biggest lesson I've learned is to be an advocate for your own well-being. Don't let a doctor tell you you're "too concerned" with your health or "it's all in your head." 40% of women diagnosed with an autoimmune disease have felt dismissed by their doctor, and many people with chronic illness feel hopeless and disempowered. Listen to your intuition and trust your gut, speak up and share your needs. What you feel is important. You can be well, and health is possible for us all.

Today my life looks much different from the bedridden depressed girl in chronic pain. I see my future, a pain-free, vibrant, healthy life. I wake each day with energy and excitement to experience whatever the day offers. Having your health degraded and then returned to you makes you truly appreciate every moment and fall deeper in love with your body, yourself, and all of life.