Thrown Off Course: Fibromyalgia Enters my Life

The Pain, Fear and Confusion of Life Before a Diagnosis

The pain started while I was sitting at my desk in the newsroom. It wasn't pain at first; just a tightening. I remember vaguely thinking it could be one of the severe allergic reactions I'd been having all spring. I used my inhaler and washed down an antihistamine with the last of my latte.

A few minutes later it got painful. I now noticed the tightening was not in my throat, but in my chest.

I tried to dismiss it, but the pain grew more intense.

Soon, my heart was pounding. I became short of breath and a bit dizzy. The pain started radiating to my back.

I got online and searched for "heart attack symptoms in women" and found a checklist: uncomfortable pressure in the center of the chest lasting more than a few minutes? Yep. Pain spreading to the shoulders, neck or arms? Yes, actually. Lightheadedness, fainting, sweating, nausea or shortness of breath? Yes, no, a little, yes, and oh, yeah! Increased or irregular heart rate? Uh-huh. Feeling of impending doom? After reading this list, definitely!

I had to tell someone what was going on, but I was hesitant. I didn’t want to say I was having a heart attack only to have it be nothing, but I also didn't want to drop dead on the floor or wait too long for treatment and end up with permanent damage.

I shakily stood up and walked over to a small group of my coworkers. "Something's really wrong and I'm not sure what," I said.

I then told them what symptoms I was having.

Everyone's first thought was that this was another allergic reaction -- I'd been to the emergency room in anaphylaxis twice. The pain was so bad I could barely stand, so someone wheeled over a chair. Someone else offered to call my husband. "He's asleep," I gasped.

"He won't hear the phone."

I scribbled down the name of my husband's 76-year-old grandmother, who lived close to us and was the only relative likely to be home. Someone called her while two others pushed me, still in the chair, down a little hallway to the back door. Someone was pulling a car up to drive me to the ER.

I tried to stand up but couldn't. I was hunched over in agony, barely able to breathe. "This isn't allergies," I coughed out. Someone called 9-1-1. Someone else brought me aspirin and water. Everyone in the company who was trained in CPR suddenly appeared, as did my boss and his boss. That hallway was getting crowded!

Finally the paramedics arrived and got me into the ambulance. Believing I was having a heart attack, they started an IV, put nitrogen tablets under my tongue, asked if I'd taken aspirin, and hooked me up to a machine to check my heart. Then, one of the paramedics reacted in mild surprise. My heart was doing just fine, beating along at a normal, if slightly elevated, rhythm. They then asked more questions, checked more vitals, and decided they didn't know what was wrong.

Just as I was being wheeled in, a nurse asked if I was Mrs. Dellwo, because if so, my husband had called and was on his way.

I knew I could count on Grandma!

By now, the pain was easing up a bit. It still ached, and I had intense spasms that made me ball up in pain, but it wasn't constant anymore.

When my husband, Joe, arrived, he looked almost as bad as I felt -- pale, scared, exhausted. After working a graveyard shift, he'd only been asleep for about two hours when his grandma came knocking. I can only imagine how scared he was as he drove across town to the hospital.

The ER doctor had me shot up with pain killers, then ordered blood work, a chest x-ray, and an EKG. We'd have to wait on the blood work of course, but the other tests showed nothing.

Nothing at all. This was not cardiac, nor was it a broken or damaged rib.

They gave me what the nurse called a "G.I. cocktail," a mixture of drugs that numbed everything as I swallowed it. If it helped, this was a gastric problem. It didn't.

The doctor said I probably had a soft-tissue injury called costochondritis, which causes a lot of pain and inflammation where the ribs connect to the breast bone. I didn't really buy it, but what else could it be?

By then I was feeling a little achy, but not horrible. Then, just as I was about to be sent home, the pain came back, and my husband witnessed exactly what had led to our being there. So I got more pain meds, and the doctor handed Joe a stack of prescriptions. They were for pain, nausea, acid reflux and inflammation. I thought, "That shows just how much they really don't know what's going on." I was ordered to follow up with my regular doctor immediately.

After a few days, it was clear this was no mere soft-tissue injury. The pain intensified and traveled around. My doctor couldn't find any solid leads, even after extensive testing. I missed several days of work and still didn't feel good when I went back.

A few weeks later, Joe rushed me to the ER in the middle of the night with abdominal pain. If it hadn't been for a CT scan showing my appendix was normal, a surgeon would have been going in after it. My regular doctor soon knew us by name and was calling me at home to check on things. I'd get a little better, then a little worse -- sometimes a lot worse. Still, no one could find anything wrong. This went on for about five months.

Through our own diligent research, Joe and I had decided I most likely had an autoimmune disease, and Lupus seemed like a top candidate. We asked for the appropriate tests and got them -- but again, found nothing.

A few weeks later, I sat in a rheumatologist's office and, after pretty extensive questioning, she started pushing on certain spots and asking if they hurt. They did, nearly every one. At long last we had a diagnosis: fibromyalgia.

That began the next phase, which was learning about the condition and how to manage it. That has involved stress reduction (I'm no longer a TV news producer), medications, supplements, Chinese herbs, massage, and acupuncture.

I know I can't be cured -- not now, and perhaps not ever -- but I also know a lot of people much smarter than me are working hard to find out why this is happening to millions of people, and they're finding more treatments. Maybe someday, they'll be able to fix me. In the meantime, I hope I can use what I've learned and experienced to help other people going through the same thing.

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