Jaunée O’Brien's Story

What were the steps leading up to your diagnosis?

I am 24 years old, and this year will be 18 years I've been dealing with fibromyalgia.

It all started when I was seven years old. I woke up one morning to brush my teeth and I couldn't squeeze the toothpaste out because my wrist hurt so badly. I didn't know why — I experienced severe body aches like growing pains all over my body.

I told my mom that I was in so much pain and she said she would pray for me. But the pain was increasing; I missed so many days of school due to my pain and I wanted an answer.

That's when I started my journey of traveling all over the country with my mom, trying to find an answer. I got so accustomed to being in the hospital, which is extremely unfair being a child. I missed out on so many activities and school events because I felt like I was bed-ridden.

Then I started to get symptoms of systemic lupus erythematosus (lupus SLE); my doctor at the time gave me an ANA test and it showed I had extremely high levels, which basically means my antibodies were attacking all my good cells. Your ANA levels should be between one and 10, but mine was 1288.

I wasn't diagnosed with SLE yet — my mom decided to start praying for God to take this illness off of me. She had her whole church praying for me and the SLE symptoms stopped, but I was still in excruciating pain.

We finally went to Mayo Clinic when I was 12 years old and stayed for two weeks, doing a multitude of tests. I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, which definitely took a weight off my shoulders because I finally had an accurate diagnosis and I could start treating it.

The doctors were shocked I actually had it because it's so rare to have it at such a young age. But it's extremely strong in my genetics on both sides of my family, also with other autoimmune disorders. I thank God every day that he took the SLE off of me.

What lifestyle changes have you needed to make?

Ever since I was a kid I had to eat healthy and listen to my body; I had to pace myself so I didn't overdue it. It's so difficult to have fibro and see all of your friends being able to do certain activities and you can't — and if I do push myself and try to live a normal life, I can't do anything for about five days.

So I've been paying attention to my body and limiting myself to certain things. I've also been trying to lower my stress and pain by doing yoga or doing a light exercise.

Who has been there for you? How?

My mom has truly been my rock during all of this — she has been the one going to every hospital and doctor with me. She didn't understand what I was really going through but she was so compassionate with me. I thank God I had her by my side.

She eventually got cancer and had to go through radiation and chemo, but she's been cancer-free now for five years. After her radiation treatment she started having symptoms of muscle aches, joint stiffness, fatigue, anxiety, depression — the list goes on.

And I told my mom she should be tested for fibro because she felt the same way as me. She went to the doctor and they tested all the trigger points and she was diagnosed with it too. Now we can completely relate to each other.

What accomplishment are you proud of?

I'm just happy that I was diagnosed and I can treat it, so I can have somewhat of a life. It's been a long journey with this illness but I'm not going to let it take me down.

I know God wouldn't allow me to have it if I wasn't able to handle it or if I wasn't strong enough. Having fibro has made me so much stronger as an individual and has made me extremely compassionate towards others.

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

My advice would be to listen to your body — don't push yourself when you know your body can't handle it. And try to eat healthy and make your body alkaline, and make sure to exercise every day. Even just walking around the block or try to do yoga and stretch, so your muscles don't get stiff.

Or even take an Epsom salt bath to relax your muscles. Don't allow this disease to get you down, have fun and always laugh.

Is there anything else we should know?

Don't let life pass you by; enjoy it as much as you can. Don't let this disease control you, but always make time for yourself to relax and de-stress.