Ginny Fankhouser's Story

What were the steps leading up to your diagnosis?

Thirty years ago when I was 30 years old I woke up one morning completely numb from head to toe. My husband did not believe me. I went to the doctor, who told me it was in my head and sent me to a psychiatrist, who put me on drugs and sent me away.

Two years later in 1987 I was diagnosed with fibromyalgia by a rheumatologist. I now also have cerebellar atrophy, diabetes, high blood pressure, COPD, cirrhosis (not from alcohol – from 20 years of 22 or more medications), arthritis, osteoporosis, osteoarthritis, Raynaud's syndrome, heart PVCs (44,000 too many per day), basel cell carcinoma, melanoma, etc., etc.

When I was young I had scarlet fever, a car accident at 16, mononucleosis twice and then was in another car accident a year later.

What lifestyle changes have you needed to make?

Everything is different. I am now disabled. I was fired from my last job in 2010 and can no longer work. I walk with a cane otherwise I fall a lot. I broke all three bones in my right ankle in 2012 and it never healed right. I’ve lost my freedoms. I cannot ski, I cannot skate, I can hardly play my guitar.

Who has been there for you? How?

Jeff, my husband of 38 years, my children, Alysia and Matthew, and my extended family. I have four brothers: Art, Brian, Greg, and Peter. My parents and in-laws are now deceased, but I would not be here without them. Some of the meds they had me on in the beginning drove me to attempt suicide. They were dangerous times but I survived.

What accomplishment are you proud of?

I have a Bachelor of Science and had a great career in banking. I went from teller to manager. I have a great family and I am very loved – I know that!

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

Don't believe everything the doctors tell you. It's better to trust someone else with fibro than a doctor, because they don't have a frickin' clue!

Is there anything else we should know?

How much more do you think I can handle Lord? Because I think I've reached my limit! They tell me God never gives you more than you can handle… maybe He thinks I'm Superwoman!

I spend the majority of my time reading. I go to the library a lot, get 5 or 6 books, read 'em, a few days later I go back and get 5 or 6 more. I try to do things around the house. I always have laundry to do but I can't do it all on one day anymore. My house is fairly messy, dusty too more often than not, but I don't have the energy or motivation. I’m trying to play my guitar again – I taught myself when I was 13 or so – but smoking for so many years clubbed my fingers and it’s hard to play like I used to... but I keep trying.

Years ago, when I was still working full time, they sent me to a psychologist who asked me, “How do you get up every day and do what you do? With all the things wrong with you and saying you are in constant pain, how do you do it? If it was me, I don't think I'd want to get out of bed." I replied with another question: "What, I'm supposed to curl up in a fetal position and die?" He had no answer for me. No one has an answer.

There isn’t enough money for research, not for fibro. There are too many other, more important health crises. Maybe one of these days...