This is the long version of my story. If you want to see the short version, check out the About Me page.
My Fibromyalgia Story
I’ve suffered from the symptoms of fibromyalgia for many years. I think it started when I got mono in 8th grade (1984). Since then, I’ve had times when I felt great and times when I’ve felt terrible. Getting sick back then also started my journey of learning about holistic and alternative medicine, nutrition, and other therapies.
Starting in 2003, I really struggled to find answers. I felt like if I could just lay down in a dark room for a moment, I would fall asleep. I was that tired all the time. I continually struggled with headaches. I was sick frequently. I hurt all the time. When I asked my doctor if I might have CFIDS (chronic fatigue and immune dysfunction syndrome, the term used at the time), she didn’t even know the acronym. I asked her if I might have fibromyalgia. She said no.
Fibromyalgia and work, depressed, stressed and exhausted.
I found it increasingly difficult to concentrate at work. I was just so tired, so exhausted. I had no energy to do anything besides go to work, then come home and sleep. I couldn’t get up in the morning. I repeatedly had conversations with my boss about why I couldn’t get to work on time. I began to struggle with depression. After all, it’s depressing when you can’t do what you want to do!
The stress of my job continued to grow, which made my physical symptoms worse: more fatigue, more pain, more depression. Then more stress again. Work required me to travel several times a year, which was increasingly difficult for my body. It would take me multiple days to recover from simple overnight trips.
A supportive partner is very helpful
I met my husband, Scott, in 2005. We were married one year to the day from when we first met. He rescued me from my job two months after we were married. He rode down to the office on his Harley, in his leathers, and told me, “You’re quitting!”
He was tired of seeing what my job was doing to me: the stress, headaches, pain, fatigue, depression, anxiety, just to name a few of the side effects. He could see me getting worse and worse over the year we were together and knew that my job had to go.
So, my knight in black leather rode in and rescued me. He packed up all my stuff into the car and stood there while I gave immediate notice. The only thing that didn’t go like every girl’s dream was that I couldn’t ride off into the sunset on the back of his motorcycle. Since I drove myself to work, I had to drive the car home!
Now married, I had new insurance and needed a new doctor. Scott and I picked one at random from doctors that were nearby; however, it was really God that chose her. When I visited my new doctor for the first time, I found out that treating fibromyalgia was one of her specialties. I was amazed; finally, someone understood and could help me! I cried all the way home.
The first year of seeing that doctor was just about trying to get me functional. For the short term, we went through a lot of different prescriptions, searching for that magic mix that would bring me some relief and give me the ability to work toward long-term health. My doctor called it, “The Fibromyalgia Cocktail.” (This was a mixture of medications, not the Myers’ Cocktail of IV micronutrient therapy often used for fibromyalgia.) I think my body fell apart that year because it could. It held itself together as long as possible. While I was single and working, it didn’t have a choice. Now I didn’t have to do all that; Scott was here. I didn’t have to work and my body just collapsed. Even with that cocktail of medications, there were some days that getting out of bed was all I could do — anything else was too much.
In spring 2008, I decided to file for Social Security disability. I remember the moment I made the decision. I was trying to vacuum our stairs. I was in my pajamas because I hadn’t had the energy to change clothes or shower that day. I was sitting down trying to vacuum because we had company coming and it had to be done, but I barely had any energy. Finally, I just started sobbing because I just couldn’t do it. I realized that I couldn’t take care of my house and I couldn’t really even take care of myself — and that’s what disability is for.
I didn't have to be perfect, I need to make good choices.
In January 2009, my doctor introduced me to a health coach. The first thing my coach taught me was that it was okay if I chose to do something that wasn’t entirely healthy. That may sound odd but it’s true. I had to learn that I didn’t have to be perfect to get well. There were too many times in my life that I would say, “I blew it! I just can’t do it, so never mind!” I had to learn that this time, if I made a bad choice, I just had to get back up and start making good choices again. After all, real people aren’t perfect.
Once I learned that I didn’t have to be perfect, I had to learn that I really did need to make good choices if I wanted to feel my best. In order to do that, I had to find out what my real motivation was. WHY did I want to feel better? What was my lasting motivation that would hold up to all the unhealthy things I was going to want to do? That’s where my coach, Bonnie, was such a huge help! She and I talked that one through, with her asking me questions about what it would feel like to be healthy, have energy, and be pain-free.
At first, I was completely unable to relate to anything Bonnie brought up. I couldn’t even remember what it felt like to be healthy. I couldn’t dream of what it might feel like to have enough energy to do the things I wanted to do or not have pain. Finally, after talking through all these things, we hit on something I could relate to, something that motivated me: every single day that I made good choices, I felt better. The more good choices that I could string together, the better I would feel. I couldn’t think months ahead, but I could think one day at a time.
There was hope to get my life back
In June 2009, Bonnie invited me to a local event for coaches. While we were there, we heard story after story of people who lost weight, came off of medications, changed their habits, and got their lives back. A woman in the row in front of me talked about how she used to have fibromyalgia and how she used to have to choose whether she went shopping or worked in the yard or did the dishes or… Now she can do it all. I cried. I already was feeling much better, but I wasn’t where she was yet. And boy, I wanted to be!
After that event, I decided that I wanted to become a health coach. I had already seen so much improvement in my health and I wanted to be able to help other people the same way.
Good nutrition helped me improve symptoms
One of the things my doctor recommended we try was going gluten free. Avoiding gluten drastically improved my fibromyalgia symptoms at the beginning of my journey. We also discovered that I have Hashimoto’s thyroiditis, a thyroid disease that is worsened by eating gluten. No wonder I felt so much better eating gluten free foods! By the way, after feeling so much better, I started to relax a bit on being gluten free. I've now gone back to eating gluten and my fibromyalgia is still in remission.
My doctor also discovered that my years of stress had caused me to end up with adrenal fatigue. She said that if adrenal fatigue was in the dictionary, my picture would be there with the definition! We started working on healing my adrenals with supplements, managing stress and getting quality sleep. In order to help heal my adrenals, I needed to avoid sugar and simple carbohydrates.
In early 2010, after working on my eating habits for 12 months, being gluten free for about three months, my doctor and I started talking about what medications I could begin to decrease. We started first with my antidepressant, then progressed to some things I took for sleep, pain, fibromyalgia, IBS, etc. After another year, in spring 2011, I’d been able to stop nine medications, including my pain medication.
Friendly pets, the furry Joy
In the summer of 2011, I found out that my 15-year-old cat, Bear, had cancer. He died on the first of July. Bear had been with me since he was a baby, 10 years longer than I’d been married.
Losing him was really hard. I adopted a kitten a week later and he died after being with us for only seven days. I lost two furry friends within two weeks.
On the last day of July 2011, we found and adopted Sam. He has been such a joy. If you ever attend one of my webinars, you’ll likely see a picture of Sam and his belly (The Belly of Happiness and Joy).
You can relapse into body pain and symptoms.
In September 2011, I was rear-ended. This, plus the stress of losing two fur-babies in two weeks, caused a major flare up of my fibromyalgia symptoms and triggered a resurgence of my chronic daily headaches. One of the medications my neurologist prescribed caused me to gain four pounds per week! (You can’t safely lose weight fast enough to break even at that rate! …And no, I don’t take that anymore!)
By 2013, in spite of all these setbacks and extra stress, I was able to come off of all of my fibromyalgia medications, including my pain meds. By 2015, when I wrote my first book, I was mostly living as if I didn't have fibromyalgia. I had enough energy to do the things I want to do and almost no body pain.
Today, my fibromyalgia is in full remission
I haven't experienced any fibromyalgia pain in years. In fact, the last time was on New Year's Eve 2018 after sleeping in a hotel bed that was too hard!
As I wrote the second edition of my book, Take Back Your Life, I had the pleasure of updating my own story. It was amazing to me to see just how far my own fibromyalgia had improved from 2015 to 2022. The funny thing is that I thought I was doing well before! When I tell you that all of us can find ways to feel better, this is what I mean.
Fibromyalgia still has no cure. It's perhaps a bit like Type 1 diabetes or depression that finds its roots in your genetics. I still live in a fibromyalgia body. I still have to pay attention and give myself the care and support I need to feel my best. As long as I do that, however, I fully expect my fibromyalgia to stay in remission!
Doing what I love, coaching, helping and living
As my health has improved over the years, my passion for helping the fibromyalgia community has also grown. I became a Certified Health Coach through the Health Institute in 2010 and received a second certification through Villanova University’s College of Nursing in 2015. I am a graduate of the Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association, and a member of the Leaders Against Pain Action Network. I wrote my first book in 2015, Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain, and my second book in 2017, The Fibromyalgia Coach: Feel Better, Change Lives, and Find Your Best Job Ever.
In 2015, I began teaching others how to do the work I do. If you ever see someone who says they are a Certified Fibromyalgia Coach® or Certified Fibromyalgia Advisor®, they were trained by me personally! The International Fibromyalgia Coaching Institute, LLC., the world's first coaching institute dedicated solely to fibromyalgia, has men and women graduates all over the world.
Since so many fibromyalgia patients are struggling, I looked for even more ways to teach people how to feel better. The Fibromyalgia Podcast℠ debuted in March 2019 and can be found on all the major podcasting apps.
Over the last seven years, I've also been collaborating on the first fibromyalgia documentary, Invisible, which will premiere sometime in 2022. I'm proud to be an executive producer of this feature film which shares so beautifully the challenge of fibromyalgia, as well as the hope that you can feel better!
Often, I feel like I’ve been given a precious gift, wrapped up and beautiful. I’m holding it in my hands and heart and waiting to see who I get to pass it along to each day. Is it you?