Cynthia Underdown-Parker's Story

What were the steps leading up to your diagnosis?

I was a legal secretary/assistant for 30 years and in August of 2002 I noticed by the end of the day I was in so much pain from my neck down my arms and into my hands that I would actually cry all the way home from Dallas to Arlington; a 45 minute drive. I finally went to a doctor in August of 2002 thinking I had carpal tunnel. I didn't have carpal tunnel and the doctor was closing practice and sent me to an orthopedic surgeon. She saw me a total of five times and was baffled. She tried shots in my neck, and she tried acupuncture, but she never had a definitive answer as to what was causing the pain. And then one day it was literally like I saw the light come on in her brain and she was amazed she had not thought of fibromyalgia. She did the tender point test and we talked for a long time and she was sure my diagnosis was fibromyalgia. I feel lucky I had a diagnosis in only a few months because I know of so many who have had years pass without a diagnosis.

Who has been there for you? How?

My son moved back home about the same time I was diagnosed to finish his degree. He has been my counselor (his degree is in psychology), he makes sure I have eaten, that I have plenty of water all day, he makes me laugh, plans movies or shows he knows I will like and we watch them together. My daughter is a nurse and understands completely. She is always only a phone call away and seems to know those days that are the roughest. And she brought into the world the joy of my life, my 5 month old grandson. He makes me want to push myself to be healthier through food and exercise so I can keep up with him and be around for him.

What lifestyle changes have you needed to make?

I had to quit work in 2003. The pain medication couldn't get ahead of the pain while I was working everyday. Everyone thinks they want to quit work and lay around but it wasn't for me—I loved my career, and I loved the people I worked with, but then it was all gone. I didn't want to make plans with my friends because I almost always had to decline at the last minute. Each day I have to choose carefully how I want to spend the little amount of time I feel like doing something. My family has finally begun to understand and help me when it is impossible for me to get out of bed. I do feel lucky with what is becoming known as the fibromyalgia drug cocktail—my cocktail reduces the pain, but the fatigue is incredible and then the depression hits. The lifestyle changes are enormous. I sleep about 12 hours a day, then I try to do some of the things I enjoy but the depression usually takes over and I give up. I feel housebound but I try to get out of the house more and more. I don't like to be in a crowd anymore because the noise gets on that last nerve I have that functions properly. I’ve never been an anxious person but my life is very stressful right now for personal reasons and I am worse when the stress is worse. The ability to think problems through is very difficult at times. I fortunately know when a fibro fog is coming on and can warn those around me I'm going to be out of it for a little while. I might find all this very interesting if it weren't happening to me.

What accomplishment are you proud of?

In December 2013, I gave up. I stayed in bed, slept, cried, watched tv, read. I quit doing the things I loved to do. Then it hit me that this would accomplish nothing. I had read a fibromyalgia article where the author said we have to push our way through it daily. Of course, this can take on any kinds of meaning for every person with a chronic illness. For me it was to make the plans for the day that I would like to accomplish and push through as many as I could. If it was fruitful, great; if not, I was lucky enough to have my bed waiting for me. I joined a little gym and have done nothing but walk but it has done so much for my attitude; not to mention all the weight I gained laying in bed. I am pushing my way through and it makes me proud.

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

Please don't give up. Go ahead and give yourself a day here and there to feel sorry for yourself but know in the back of your brain, after you are through that day and have given yourself a chance to rest, you need to try to push through the next day; if you only accomplish one thing, be proud. You didn't ask for this debilitating disease, but you can make the most of it. One of the best things I did at the beginning was to print out an article explaining fibromyalgia and give it to my family. I wish I had given it to my friends, because I have lost many of them through this process. That's okay because the ones who have stayed are priceless.

Is there anything else we should know?

I've been active my whole life so being in bed a lot has been hard. I also have had my own business since the 80s making jewelry. I always needed a creative thing to do and I started buying jewelry on sale, tearing it apart and creating my own unique piece. After I quit work I was able to still do this for awhile but I haven’t been in my studio in a year. That is my goal, to get back to at least that one love in my life and make it a success.