Rose Ann Van Alstyne's Story

What were the steps leading up to your diagnosis?

I had severe pain between my spine and abdomen, like I had been hit by a truck, with radiation to all surrounding areas. An x-ray, CT scan and bone scan, showed a large "mass," but the doctors could not decide if it was a tumor or inflammation. It turned out to be severe inflammation of my spine, which spread to the back of my abdomen – within weeks, the symptoms were affecting my whole skeleton, including my ribs.

I sought help from thoracic surgeon who referred me to rheumatologist. Through process of elimination I was diagnosed with fibromyalgia in 1986. Subsequently I was diagnosed with polymyalgia/rheumatic – temporal arteritis with loss of vision.

What lifestyle changes have you needed to make?

Now at the age of 77, I’ve made many changes!

Who has been there for you? How?

Dr. John Jabbs, my rheumatologist in Syracuse, New York. He passed away two years ago.

I’m under the care of neurologists, a spine & wellness specialist and my primary care physician who specializes in rheumatology. They actually listen and believe me, and concerned with helping my comfort.

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

Choose a caring and attentive physician, who will listen to you. Do not curl up and feel sorry for yourself. Do your crying in private and find something to look forward to, if only once a week.

Unless a person is living with this each day, you are not going to be able to explain to them how you feel, and few will listen or understand. You and your doctor need to find a treatment, that gives you comfort, if only for a few hours a day.

I often wonder how a human body can endure such hurt and keep on ticking. Thank God, I come from a family of longevity – up to 101 years of age – so I inherited strength, which, at this age, is so necessary in living with this debilitating diagnosis.

What accomplishment are you proud of?

Frankly, being able to get out of bed each day, enduring the pain as I have gotten older, and the ability to hide the extent of my discomfort from those around me.

Is there anything else we should know?

You cannot sit or lay for long periods of time – it only makes it worse. I have heard stories of those who spend their days in a wheelchair or in bed, but the longer you are immobile, the worse it is to move. Four hours in bed is about my limit. I can ride in a car for half an hour, but sitting for any length of time is painful and I have to get up and move. It is torture, but it has to be done.

Trying to keep a positive attitude is a challenge, but your doctor can help with the discomfort and emotional side of this, as long as you are honest. I have found the right combination of meds to give me about five hours of comfort a day – I am and have to be satisfied with that. The one medication that makes me feel like a human being also brings side affects, so, I use that only when I am taking a trip. I’ve found all medications advertised on TV bring with them many side effects.