My Fibromyalgia Story

My Fibromyalgia Story

tami My Fibromyalgia Story

This is the long version of my story. If you want to see the short version, check out the About Me page.

I’ve suffered with the symptoms of fibromyalgia and chronic fatigue syndrome 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 disfunction syndrome), she didn’t even know the acronym. I asked her if I might have fibromyalgia. She said no.

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 continued to make my physical symptoms worse: more fatigue, more pain, more depression. Then more stress again. Work required me to travel a lot, which was increasingly difficult for my body. It would take me several days to recover from simple overnight trips.

wedding 200x200 My Fibromyalgia StoryI 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 the amazing Dr. Maggie Yu at random from doctors that were nearby; however, it was really God that chose her. When I visited her the first time and 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 Dr. Yu 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. Dr. Yu called it, “The Fibromyalgia Cocktail”. (This was a mixture of medications, not the Myers’ Cocktail of IV micronutrient therapy 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.

At the end of 2008, weighing 243 lbs, I asked Dr. Yu if I should be worried about my weight, especially since all of my medications have the side effect of weight gain, and my weight kept creeping up and up! I didn’t even get the question all the way out before she said, “YES!” I forget now exactly how she put it, but basically, I needed to do more than just “watch what you eat and exercise more.” Dr. Yu essentially told me that I needed “professional help.” At that point, she introduced me to a nutritional program that changed my life.

When I started the program in January 2009, the first thing I had to learn was that it was okay if I chose to go off plan. That may sound odd but it’s true. I had to learn that I didn’t have to be perfect to be on the program. 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 went off plan, I just had to get back up and choose to get back on plan. This is a program for real people and real people aren’t perfect.

Then, once I learned that it was okay if I chose to go off the program, I had to learn that I needed to choose to stay on it 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 lose weight? What was my lasting motivation that would hold up to all the tasty things I was going to want to eat? That’s where my Health 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 thin, healthy, or whatever.

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 didn’t know what it felt like to be thin. I couldn’t dream of what it might feel like to be able to have energy to do the things I wanted to do. Finally, after talking through all these things, we finally hit on something I could relate to, something that motivated me: every single day that I stayed on plan made me feel better. The more days on plan 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.

In June 2009, after I’d lost about 25 pounds*, Bonnie invited Scott and me to a local event celebrating people who had lost weight. While we were there, we heard story after story of people who lost weight, came off of medications, 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, Scott and I decided that we wanted to become Health Coaches. We had seen so much improvement in my health that we wanted to be able to help other people the same way.

One of the things I discovered being on the program was that I am gluten intolerant. Many of the products I was using were wheat and gluten free; since I was feeling so much better, this clued Dr. Yu in that I might have a problem with gluten. Going gluten free drastically improved my fibromyalgia symptoms. We also discovered that I have Hashimoto’s, a thyroid disease that is worsened by eating gluten. No wonder I felt so much better eating gluten free foods!

We also discovered that my years of stress had caused me to end up with adrenal fatigue. Dr. Yu 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. Again, the program was a perfect fit with my new regimen. In order to help heal my adrenals, I needed to avoid sugar and simple carbohydrates. This is exactly what I was already doing on the program.

In early 2010, after working on my eating habits for one year, being gluten free for about three months, and losing 40 pounds*, Dr. Yu 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 (spring 2011), I’d been able to stop nine medications, including my pain medication; we will be targeting medication #10 soon.

As my health has continued to improve, my passion to help women with fibromyalgia and chronic fatigue syndrome has also grown. Not only have I become a Fibromyalgia Coach, but I also helped found the Fibromyalgia – ME/CFS Support Center, lead local support meetings and online webinars.

I quite often 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?

Next Steps:

*Results will vary. Lose 2-5 lbs per week for the first 2 weeks and 1-2 lbs per week thereafter.

All photos taken by Scott, except the photo of Tami and Scott, taken by Steve Harmon, www.sjharmon.com, used by permission.