Nanette White's Story

What were the steps leading up to your diagnosis?

The steps that led up to my diagnosis were long — it took three years for me to receive my diagnosis.

To be honest I think it took me the first two years to really realize something was really wrong with me. I'm the type that does not go to the doctors unless absolutely necessary; so when I finally reached that point I would say my fibromyalgia in living color.

The pain and fatigue were unbearable at that point. Fibromyalgia runs in my family and it finally dawned on me to call my aunt — she's the one who told me to get to the doctors.

When I finally had the epiphany to call her I was in so much pain. With that, the appointments began and thus began the checklist of other illnesses I may have — those needed to be ruled out first of course.

It took a year after that to get a legit diagnosis.

Like others who have fibro, the endless blood tests and meds given through trial and error in the beginning were grueling.

In the meantime, working full time in a nursing home was becoming more and more stressful due to the pain and fatigue. I take care of the elderly, and jokes aside I was beginning to feel like one of those poor souls I was caring for.

My employers were very sympathetic towards me and worked with me as much as they could. Without their support I couldn't have made all those doctors appointments I had. Their understanding of me calling off of work because I was in too bad shape meant the world to me.

The endless doctors appointments to rule out everything else took a real toll on my family and me. I felt guilty I was putting such a strain on them and that in turn led to more flare-ups and more depression.

Some days I couldn't get out of bed I was so tired. Other days I couldn't stand to be in bed because it hurt my entire body to be in it. At times my body hurt so bad it was painful just to wear clothes and shoes.

I cried in the doctor’s office every time we ruled out another illness. All that meant to me was, “OK, I didn't have that so what's wrong with me? Time to move on to the next blood test.”

Finally there was enough paperwork to send me to a specialist. I went to my appointment and was finally diagnosed with fibromyalgia.

It was official after she tested my trigger points. Let me tell you she nearly sent me though the roof each time she had to apply pressure.

I was ecstatic to finally hear those words that I had fibromyalgia. Then the waterworks started.
"I have fibromyalgia — now what?”

She explained to me what I needed to do to help ease the symptoms of fibro and what to expect. I left her office hopeful to a certain extent because I didn't know what that meant for my family and me.

Who has been there for you? How?

My counselor and head shrink, as well as my family and friends. They all have been my rock through the hardest part of all this.

There still are times I feel guilty for things I just can't handle anymore but they all help snap me out of it. They remind me there's no shame in my game and everything will be OK.

What lifestyle changes have you needed to make?

My life changed drastically. I know everyone's experiences with fibromyalgia are different — no one has the illness affect them in the exact same way. Some are more severe than others. In fact, my experiences turned out to be worse than what my mother and aunts experienced.

I had to change my eating habits (well I'll be honest — I tried!). I made a lot of adjustments. There were things I just didn't have the energy to do anymore and that in turn changed a lot of things for my family.

I know that staying motivated is supposed to help with the aches and pains, but with me it increased pain. I found stress is a big trigger for me. So I try my best to deal with things without letting them get to me.

I have a counselor I started talking to from the very beginning and still do. We figured out I hold a lot of things inside, and my body decided to fight back with fibromyalgia.

It feels good to be able to confide in someone about your life and feel no judgments. He's been a Godsend, as has my head shrink. She does research for me about fibromyalgia and we discuss all my options about things I can do to help myself. Honestly I don't know where I'd be without all their support.

What accomplishment are you proud of?

I'm most proud that I'm still breathing. That I'm still here.

In the beginning I was in a very dark place and felt like giving up. With God’s help and everyone else's, I'm getting up every day and actually looking forward to it and what the day may bring. I count my blessings each and every day.

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

My advice to anyone who is willing to listen is use the support you have. If you don't have support, find it.
Be vocal. If there's something you’re not up for, say it. Stop being afraid to say no.

Go at your pace and don't feel guilty about it. This is a new you. This illness is never going away.

Embrace it — like Alicia Keys says in her song, "Don't be mad, it's just the brand new kind of me.” Those words have a lot of meaning to me now.

I'm still me, just a little different — maybe better. This illness helped me have a new outlook on life. Maybe it will for you too.

Is there anything else we should know?

My whole life I've been there for everyone else. Always on the go. I'm the mother hen as my family calls it. Always doing for others before I do for myself.

I've been taking care of the elderly for over 20 years. They're my family away from home.

I've been a mom since I was 18. So my kids have always been a priority.

My marriage fell apart, and my mother died of breast cancer all within the past five years. I had to move my kids out of our home and into an apartment.

My life became chaotic and I wasn't paying attention to the signs my body was giving me because I was too busy taking care of everyone else. Now I take time out for me.

It took developing fibromyalgia to slow down. I now understand the meaning behind taking time to stop and smell the roses. Now I do and they smell beautiful!!