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Personal Stories


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The following is an excerpt from Misty's Journal

Misty I am 37 years old, and I have had Fibromyalgia Syndrome (FMS) for the last 19 yrs. It took me 10 years of frustration to be properly diagnosed. Like most FMS patients, you go from doctor to doctor, hoping that someone will know what is wrong with you. I would be unable to walk into the office unassisted. After going through an exam, the doctor would say there is nothing wrong with you.

After years of roaming from doctor to doctor, I met a doctor that diagnosed me with a severe form of FMS. I began taking medication for FMS 9 years ago. At first, it helped tremendously. I was able to go back to work and live an almost normal life. Then as the years went by, the side effects got worse and the medication seemed to quit working. My FMS also got worse. When I'd first started out with it, I had only a few spots affected. Now, 19 years later, there are very few places on my body that aren't affected. I sold my beauty shop and tried several different careers, hoping to be able to keep working. We even moved to the south, thinking the warmer weather might help me. None of it worked. In December, it will be 8 years since I've worked. My doctor said that was my only hope for having more good days than bad ones. And for awhile it helped me.

Having FMS is like living on a yo yo. You go from a period of remission, to not being able to walk at all. Then, if you are lucky, back in to another period of remission. When I'm not in a remission, I need help getting showered, getting dressed, and just fending for myself. Just the short distance to the bathroom, takes all of my energy. The inability to use the affected areas, and the horrible pain aren't the only things that affect FMS patients. You also experience horrible migraines, constant panic attacks (mine mimic heart attack symptoms), frequent diarrhea and abdominal pain (also known as irritable bowel syndrome or IBS) and short term memory loss...which is the pits!

On a "good" day, I am able to slowly walk a few feet at a time with my cane. I can't honestly remember when my last "good" day was though. For any distance, I am in my wheelchair. I am not able to do the laundry, or clean the house. Things that most women complain about doing would be a joy to me. I'm not sure what I would do if it weren't for my husband and my mother. My husband has taken over all the work I used to do. He does the laundry, cleans, and usually cooks. It is difficult for me to stand in one place long enough to cook a meal, so I rarely cook. My mother helps me to get my groceries, helps me to shop for my clothes, and keeps me company three days a week. I know I am VERY fortunate to have a great support group like them!!

In Sept. of '96 I discontinued my medication, with my doctor's approval. The side effects had gotten so bad that I was either in the bathroom being sick, or having migraines so bad that I could barely hold my head up. At one time or another I had been on every drug used for FMS and I just continued to get worse. We both decided to give it a try. I have been rapidly declining ever since. I seem to need help doing everything. To me, this is the most difficult part of having FMS, learning to start back from square one. Being in remission, you almost forget that you are sick. You can walk, you can do things for yourself, people don't point and stare at you. For the most part, you are free from pain. Then, you start the ride back down. You wonder if and when you will ever feel that good again. Or if you will ever walk again.

Physically, I feel better off the medication. I am no longer suffering from the side effects of the drugs. Of course the FMS has gotten worse, and will stay this way. But, I know my limitations, and I try to keep a positive attitude. I'm a big believer that life is what you make of it. You can sit and complain, but it doesn't make it go away. Eventually you have to just learn to live with it. My doctor calls me a realist. For me, there just isn't any other way to deal with all of this.

November of '97 I had a doctor's appointment. I'd been feeling worse than my normal and was a bit worried. After examining me, and talking to me, my doctor said, "Well we have one more thing to add to your list of illnesses, you also have CFIDS". (Chronic Fatigue Immune Dysfunction Syndrome). I guess I shouldn't have been too surpised, as I've had most of the symptoms for quite a while now. It still hit me pretty hard. Having one illness that is incurable is enough for anyone, having two is the pits. He said he'd noticed I was getting the CFIDS, but he figured he wouldn't bother mentioning it since there was nothing that could be done for that either. So now, after 19 years of FMS, I have something else to adjust to. Isn't life grand? (lol) At least that explains why my fatigue levels have gone through the roof, and why I'm constantly tired. Just doing the least little thing takes it out of me.

On April 10, '98 I returned to the doctor for my regular 3 month check-up. My FMS had gone completely nuts. I spent most of my time in bed, as the pain and associated illness had left me unable to resume any type of normal life. Becuase of the intense pain, and the other medical problems I've been suffering from, I was severely depressed. I'd even contemplated taking my own life just to stop the unbearable pain and be done with the other medical problems. So, as I spoke to my doctor I told him exactly how I had been feeling. He was very concerned, as he should be, and recommended a medicine that will not only help to alleviate the effects of the FMS, but also to help with the severe depression.

I've been on a small dosage of this medicine for 5 days now. When I'm "under the influence" of this medicine I'm unable to remain awake. I'm also unable to completely focus my eyes. Anything that requires any amount of concentration, like driving a car, is out. The other side effects include nausea, and diarrhea. My mood has rebounded though, and I'm going to give life a shot again. I'm just hoping that the effects of being "drugged up" help with my FMS eventually...

Read more of Misty's Journal in her website: As Misty's World Turns...

Misty © 1998.

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