Nicole Toth's Story

What were the steps leading up to your diagnosis?

When I was a baby I was diagnosed with roseola, an infection that causes a fever and rash. During my childhood I had many other illnesses, too — I caught chicken pox multiple times. I was always catching something. At age 24 I had my first child and during my pregnancy I started getting severe pain in my sciatica and hip, but my doctors chalked it up to being pregnant.

Two years after my daughter’s birth I was in a minor accident that gave me whiplash of the neck and shoulder blade. I was sent to see a chiropractor to help with stiffness and pain. Six months after the accident I woke up one morning with a rash and was dead tired. I stayed in bed for three weeks.

My doctor initially said it was shingles/chicken pox but the viral biopsy was negative. They gave me anti-viral medication and eventually it went away. I thought no more about it until one day I was at work around six months later when I woke up and couldn’t move my lower legs and hips. It was like they were numb, and when I would try to walk my hips would lock up, sending me into severe pain that brought me to my knees. It mostly affected my right side.

It got to the point I couldn't move and I was hospitalized for three weeks. Not one doctor could find anything wrong with me — test after test, and x-ray after x-ray, everything was “normal.” They sent me home. With hospice and rehabilitation it took me six months to be able to walk without a walker — I was 27 years old.

It wasn't until my primary doctor decided to send me to the Mayo Clinic to a world specialist in rheumatology that I got a diagnosis. The rheumatologist looked over everything and did the trigger point test. I got 19 of 21, and he told me I had fibromyalgia. That was the first time I had ever heard that word, but now fibromyalgia and I are all too familiar.

I went from being a very active young adult to being hardly active at all. The fatigue and pain wear very heavy on me. Currently I am disabled and receiving benefits that took me over 4 years to get approved. I have a bachelor's degree in kinesiology/sports medicine but I am unable work due to fibromyalgia. Even when I had jobs that were desk jobs it was too much for my immune system and if I overdid it physically or stressed too much I was out for a few days in pain.

I have many underlying medical conditions that relate to the fibromyalgia. Fibromyalgia is a very complicated disease with no two people alike, but for those who suffer the symptoms are very real.

What lifestyle changes have you needed to make?

I am currently disabled, unable to work or do physical activities; even day-to-day activities are difficult, getting out of bed, like washing and brushing my hair, and doing laundry, and housework. If I stand too long I hurt, and if I sit or lay too long I hurt. It’s hard to find an equal balance between the two. If I do too much I am out for a few days in pain, so I take advantage of my good days and cope with my not-so-good days.

I try not to make plans with friends or family — I've learned in the past that I can’t say I will do something because I don’t know how I will feel that day. I hate feeling like I've left someone down for not showing or breaking promises because that day I am sick, exhausted or in pain.

Another thing that has drastically changed for me is my concentration level and memory, which affects my everyday life. I tend to have a hard time spitting out what I'm trying to say and I get caught up in a rambling of “ums” and stuttering. And don’t get me started on memory lapses. Fibromyalgia is hard, but I am thankful for being alive and having people who love and understand me, who don't judge.

Who has been there for you? How?

I have a very understanding and supportive family. My children are the best and help with what they can. My husband is my best friend and my main motivator and supporter. He is very understanding and considerate of my feelings and needs. I’m very thankful for my family.

What accomplishment are you proud of?

I have a bachelor in kinesiology/sports medicine, I have an associate degree in physical therapy — I graduated at the top of my class — and I speak two languages. I’m also proud of my loving and beautiful family.

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

Take one day at a time — that is all we can do. Don't push yourself to extremes. It's okay to get help, or even let the house be dirty for a day or two. Take your good days and make the best of them. And when you have a bad day always stay positive. I know its easier said than done, but through the darkness is the sun.