Caroline Johnson's Story

What were the steps leading up to your diagnosis?

My first traumatic experience was the birth of my daughter. At 17 years old, after 53 terrible hours of labor with no pain medication, I was given an epidermal to push and deliver, the emotional damage was done. It took 2 1/2 hours to deliver.

When I was 21 I was diagnosed with high-grade dysplasia in my cervix, and to prevent cervical cancer they removed 50% of my cervix. They said I may not carry another child again and wanted to do a full hysterectomy and I refused because I had hope.

In 2005 I was the victim of an assault set up by an ex boyfriend who couldn't take our break up as a definite thing. I was beaten within inches of death. When I arrived to our military hospital I was deemed too critical for treatment. They didn't have the machines to treat me, so I was then rushed to the city’s trauma center. When my ex husband arrived they said I was lucky to be alive. They had beaten my head into a concrete parking marker. It took weeks to regain strength in my neck to hold my head upright, and months to heal. My eyes were filled with blood for a long time. Through that I learned how to go out in public alone again and trust going out at night without having a nervous breakdown.

In 2009 I gave birth to my son, my doctor was prepared for my pain and he was aware of my experience before and wanted to give me a happy, comfortable birth so he kept me medicated through out the whole time. I was unable to dilate, due to the LEEP procedure. In less than an hour I finally dilated from 2cm to 10cm. That was so painful they administered pain meds through IV and I was in lala land. When it was time to push I couldn't deliver. For several hours I pushed and the doctor was starting to get anxious. I pushed as hard as I could and he delivered after my tailbone snapped. He was not breathing so they worked on him for a while, and he finally cried. For the first three months he would stop breathing due to complications from the birth. He also has a scar on the tip of his nose from my tailbone.

Since then I have had extreme pain and migraines. I was having extreme lower backaches, and had an allover achy sore feeling. I was unable to walk longer than 30 minutes – even shopping was difficult – and I was extremely tired and stiff like a board when I woke up in the morning. I couldn't even bend over to put my pants on. Headaches and neck pain were a constant problem. The neck pain was so bad I spent a lot of time in the ER getting IV pain treatment.

I went through many tests and treatments for my pain and problems, only to have them all treated separately and find no relief. A doctor accused me of being a pain pill junkie and an ER nurse told me that the medical community didn’t believe in fibromyalgia and that it was all in my head.

Despite all this I was lucky enough to be receiving IV pain treatment at the ER one night when the doctor on duty came to me and said he had looked through my records and believed I had fibromyalgia. He sent a referral for me to see a specialist. Since that day three years ago I have been living a much better life, with proper treatment for pain relief and exercise and routine to help me function better every day.

What lifestyle changes have you needed to make?

I have learned that going to bed at the same time every night and waking up at the same time every morning makes a miraculous difference in the way you feel the next day. Learning stretching and relaxation techniques helps to calm my body, and taking my medicine at the same time every day keeps the pain at bay so I can do everyday activities. I do not go out to bars and drink anymore because I get deathly sick the day after, but I can still go have a beer or two to keep some adult life going. But I’d much rather go to dinner and a movie.

Who has been there for you? How?

My mother was there through the pain and the ER trips and challenged doctors about my pain. My boyfriend of four years has been here for me to comfort me on bad days and help raise my son who is almost five.

What accomplishment are you proud of?

I am proud of not giving up and not allowing this to define me, or cripple me. I fight every day to enjoy life. I may do things a little different or slower at times, but my determination and strength will overcome this illness.

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

It is important to have a great support system; do not settle for anyone or anything not helping you or allowing you to live a normal life. Challenge doctors and get the treatment you deserve. Learn to use exercise and relaxation to help you get through the bad days, evaluate your eating habits and tweak them to help build your strength and prevent triggers.

Make a routine for bedtime to help you relax and fall asleep; you need a pattern every night to ensure enough sleep. Wake up at the same time every morning; you will see a difference and will start to feel rested. Every day is a learning process and you must stay in tune with your body. Learn how to stop before you overdo it, whether at work or home. Trust me, that was the hardest part for me. You must rest and take life easy. When you get a routine that works for you, it will make a huge difference. Take all medicine as prescribed and if they’re not helping, research and talk with your doctor about others. You are in control – take your body back.

Is there anything else we should know?

As a kid I suffered with asthma and scoliosis. I had other bone defects in my lower legs that caused sprains and breaks if I stepped wrong. My hips are defected from the scoliosis and from giving birth.