Living with fibromyalgia

 

It dawned on me this morning that although I have mentioned it in passing, I’ve never really written much about my experience with fibromyalgia. It appeared later in life and took the longest to get diagnosed. For over 4 years it felt like all the doctors were playing “hot potato” and I was the potato.

Like many patients, fibromyalgia started after a serious illness. In October 2009 I was just finishing up the final requirements to complete my Master’s degree in Counseling while working as an adult case manager for a community mental health center. My workday started just like any other. I was asked to transport another case worker’s client to a drug rehab facility. Everything was going smoothly until the ride home when the aching in my back turned into chills and cold sweat. I was getting sick fast. At this point I was closer to home than work, so I called my supervisor to fill her in on my sudden downturn and headed for home. I’m not even sure how I made it safely home. As I walked in the door, I took one look at my husband and announced, “I’m sick,” and headed straight for bed. He assumed I was having a migraine attack and followed me to offer help.

“What’s wrong?” he questioned. By this time I had changed into sweats, turned up the heating blanket, and piled on every blanket within reach. Shivering, I groan, “It’s the flu.”

“So it’s not a migraine?” he states the obvious.

“No. MY HEAD DOES NOT HURT,” annoyed, I reply.

Then it hits him, “You mean the SWINE flu?”

Matter-of-factly, I confirm, “Probably.  Several people at work have it.”

Panicked, he sighs, “Oh great, now you’re going to get us all sick.” (For the record, he did get sick. The kids were never affected.)

I can usually deal with the flu at home, but this one kicked my butt. The next day I was in the doctor’s office begging for help. My doctor returns with the test results and a ornery smile, “Congratulations, you have the swine flu.” He’s lucky I like him, because I wanted to kill him for that smile. I left with a note for my boss and a script of Tamiflu. I was out of work for over a week. I probably should have taken more time, but I didn’t have the PTO to cover it. That was the beginning of my new life.

I kept working even though I was extremely tired, just assuming that my energy would return as I slowly recovered. It never came back. Instead, the fatigue was joined by muscle and joint aches so bad that I was bent over like an 80-year old every morning.  I needed help getting dressed and started to fear falling, especially in the shower. At first I thought I was sore because I was adjusting to a new job. My back ached, my arms were sore, my legs were killing me, and nothing I did seemed to help for more than a few hours. I did acupuncture, massage, myofascial release therapy, physical therapy, trigger point injections, cortisone shots in my back, and reluctantly accepted a script for Tramadol. All of it helped. None of it really addressed the problem.

For four years I battled the pain and fatigue, hoping with each new treatment I would see lasting improvement. My family and I suspected fibromyalgia, so I brought it up with every new doctor. None of them thought that was the problem. Thanks to the many treatments (plus new migraine medicines) I had gained a lot of weight. My once thin size 4 frame now barely fit into a size 12. Every doctor I talked to thought the problem was my weight. I ate wholesome foods in moderate portions, drank lots of water, and stayed as active as possible. Still, the scale did not budge. The weight was a side effect of the medications used to treat my symptoms.

Finally last fall I’d had enough. At a follow-up neuro consult, I asked my headache specialist what he knew about fibromyalgia. He assured me that he could determine in just a few minutes if that was my problem.  He checked all the known trigger points. All of them were very sensitive to touch…okay, they hurt like hell. Combine that with the all-over aches, excessive fatigue, extreme sensitivity to temperatures, and he confirmed it. He switched my antidepressant to Cymbalta and suggest a new exercise plan that include pacing myself. The Cymbalta got rid of almost all the morning stiffness and pain. Now that I could get moving first thing every morning, my muscles warmed up enough to allow me to go about my day. I still hurt, but not as badly. I learned how to pace myself by taking frequent breaks, stretching, and saying “no” a little more often.

The treatment is not a cure. My pain level never goes below a 3 and is usually somewhere between 4 and 6 (on a 10-point scale). Some mornings I still wake up stiff and sore. A few times each month, the aches will be bad enough that I feel like I have the flu. The “brain fog” that occasionally hit me during a migraine attack is now here to stay. I lose words and have trouble finishing a thought. I can’t react as quickly as I used to, so my family and I are learning to adjust to a slower pace.

The best way I can describe it is that it feels like my body has a low-grade migraine all the time while my head gets occasional breaks. I move slower, take more breaks, and try to resist the urge to do things that are sure to trigger a flare. Still, I will not be stopped.

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