Debbie Smith's Story

What were the steps leading up to your diagnosis?

I've had fibromyalgia for many, many years. When I was around 12 or 13 years old, I had pain in both my legs usually at night. My parents didn't pay too much attention to what I said. They wanted to know was it my bones or muscles. I couldn't give them an answer. My dad used to prop up my legs and massage them which did help a bit. Honestly, it was just the fact he cared and tried to help is what made me happy.

The symptoms were hard to deal with, but I was able to go on and graduate. I was married soon after graduating, and then followed pregnancy. I had two children, and each time I had a child, the fibromyalgia would spread. I had it all through my body. Still, I hadn't been diagnosed with anything.

My youngest was in her young teens when a doctor started my treatment for fibromyalgia. I have a long list of things wrong with me, as some of the others have said, I think they are all entangled with my fibromyalgia. I also have a spinal cord stimulator implanted. I go to a pain maintenance doctor, and I still can't get rid of the pain.

I am going to be 65 next year. I get so tired of dealing with this, but you have to go on. I was able to get my children raised, take care of my home, and I worked as long as I could. Now, I am divorced and by myself. I also have two dogs, and I couldn't make it without them. This is a summary of my life so far.

What lifestyle changes have you needed to make?

I worked for years. I loved being out of the house. I didn't go to work until both of my children were in school.

I had recurring throwing up problems no one could find an answer to. I was in and out of the hospital a lot. One time when I went in, they told me I had a stroke.

The place I worked at was closing, and I knew there was no way I could continue and learn a new job. So I filed for disability. It took me a few years, but I was finally was granted disability.

I have two great-grandsons. I have let down my grandchildren by not being able to do the things that they wanted me to do. Now, I can't enjoy my great-grandchildren. It was all I could do to hold them for a while to feed them. I have missed a lot of time.

My family doesn't understand why sometimes I am grouchy – to put it nicely. They just don't understand this. I have lost most family because of fibromyalgia. My loved ones don't understand how fibromyalgia makes your mind work. For example, sometimes I get anxious about them not calling and I act crazy, but I don't mean to because I want them in my life. No one understands.

Who has been there for you? How?

The only people I have in my corner is a friend I went to school with and my daughter. Both my parents passed away around 20 years ago, my only brother passed away a couple of years ago, and I do have a sister who is two months younger than my daughter. My sister and I don't know each other.

My sister and daughter don't understand me or my condition. They feel if they ask me to go somewhere and I tell them, "I don't feel like going," that there is something wrong with me, mentally.

My daughter has hung in here, but she doesn't understand. They don't understand that when I do go somewhere, I sit on the couch and don't get involved with everyone. They want to know what my problem is. Honestly, when I go somewhere – I'm happy to be there, but they don't know that and don't understand how much effort it takes me to go out.

What accomplishment are you proud of?

I am mainly happy, at this time, I live by myself and I'm able to take care of my dogs and me.

I don't want to be a bother to anyone. There is more drama going on in everyone's homes. I don't think I could survive.

For me to be able to, at this time in my life, take care of myself is more than I thought I could do.

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

Stay true to yourself and take care of yourself. People may never be able to understand what we go through and sometimes you may have to be your own cheerleader.

If you don't feel well, don't force yourself to do things your not up to because you are the one that has to put yourself back together the next day.

I have found the more I move around, the better I feel. It helps to get out and some enjoy the world. It also helps me to have a dog. Lastly, thank God for that and all his other blessings he gives us.

Is there anything else we should know?

I have arthritis.