Sylvia Lamaye's Story

What were the steps leading up to your diagnosis?

My story begins in 2004. Over a two-year period I had lost my mother and two aunts. I was working and was enrolled at a university part-time, pursing a master’s degree. I was extremely fatigued and kept getting a sore throat. I believed the fatigue was related to a virus in my body, hence the sore throats, as well as a rigorous school and work schedule.

Before being diagnosed, I thought I was going crazy. When I started to notice failing memory (brain fog), I frantically researched possible reasons for my symptoms on the internet. I even researched the probability of someone in their 30s developing dementia.

It took two years before a female gynecologist listened to my complaints and acknowledged them as being real. At this point, I was finally referred to a rheumatologist who diagnosed me with both fibromyalgia and chronic fatigue syndromes.

I was elated to receive a diagnosis. Finally, there was a real diagnosis for my debilitating fatigue, pain, inability to focus, memory loss, foggy brain, and a multitude of other symptoms. Now I understood why my robust social life had been whittled down to participating in a social event once or twice a month, if that. At last, the mystery was taken out of why I laid on my back staring at the ceiling fan 20 hours a day. It made sense why I could only watch the TV with captions on.

I thought things would be simple now. I no longer had to follow the advice or diagnoses of well-meaning but misinformed friends. I believed this diagnosis put me back in control. I could formulate a strategy on how to get well. All I had to do was eat the right foods and find the right combination of medicine. Meanwhile, my first task was locating an empathetic doctor who would understand how to treat and cure these “invisible” syndromes.

Little did I know how long and tedious a journey this would be. I would never have guessed that 10 years later I would not have a definitive cure or a cause, having gone from doctor to doctor looking for insight into how to care for my symptoms. Little did I know I would spend thousands of dollars on blood work, urine samples, doctors, and vitamins with little relief.

What lifestyle changes have you needed to make?

After losing my entire retirement savings, two homes, friends, family, and the ability to sustain my health, there were many lifestyle changes I made. For the past 10 years, I’ve tried to create a new normal for myself. Firstly, I had to cut down my social activity level by 80%. Second I had to find a way to stop being angry that my life had been taken from me by FMS. Third, I learned to mask the pain and accept fibromyalgia and CFS as being part of my daily life. Fourth, before accepting my diagnosis,

I had to challenge my innate abilities, belief system, attitude, and emotions. I had to reach into depths of my soul that I didn’t know existed and pull strength I never knew I possessed. Fifth, I had to teach myself how to say no and to be authentic to who I am and my purpose. In doing this, I now carefully select what projects and activities I work on. Sixth, I fight daily for my health through self-encouragement, resting when needed, and aligning myself with positive relations. Finally, I remind myself daily to keep my spiritual, emotional, social, occupational, and physical welling being balanced.

Who has been there for you? How?

A few friends have been there for me. They have been encouraging by listening to me and they have helped me with everyday tasks I couldn’t have done alone. Thanks to my friends I am also able to work part-time as an independent contractor.

What accomplishment are you proud of?

I am grateful for being able to educate, inform, inspire, empower, and give hope to people living with FMS and CFS to maximize their quality of life through my Facebook page, blog and podcast. I am proud that I have taken steps on a winding path in an unmapped forest. I’ve counted myself back into the game of life.

Meanwhile, I am also proud to say I am learning acceptance daily, while embracing major changes in my lifestyle, attitudes and beliefs. Today I’m living with chronic fatigue and fibromyalgia by keeping my symptoms balanced and embracing a new normal.

What's your advice to someone else living with Fibromyalgia?

My advice for fellow sufferers of FMS would be to align yourself with positive relationships. Learn to say no to others more often and yes to yourself more often. Keep notes of people, situations, foods, events, or whatever causes your symptoms to flare up. Be willing to do whatever it takes to stay in balance spiritually, emotionally, socially, occupationally and physically. Monitor your stress. Although it is not easy to stay positive, it does help reduce the severity if your flare-ups, in many cases. Remember your well-being is at stake. And nothing is more important than your health.

Is there anything else we should know?

I love animals, laughing, storytelling, and new adventures. When I am not in a flare I've been told I can be quite entertaining. My biggest desire is to make a difference and give hope to people who suffer from fibromyalgia.