The Complete Guide to Fibromyalgia by Sharon Ostalecki

Journey to Motherhood: Gina Hutter

Gina and her husband Nicholas lives in Chicago. They are the parents of Isabella and Jacob. Gina is an active member in her local moms club, swims, and enjoys making personalized special occasion cards.

"Don't try to carry anything too heavy," Nick said with concern in his voice as I got out of the car, my muscles aching from the four-and-a-half-hour drive from Detroit. "I won't," I said stretching, "I promise. Just the light stuff." He led the way up a flight of stairs to our new home in this booming suburb of Chicago. "Well, we're here," I said, scanning the white walls and beige carpet, tired but excited to begin the adventure ahead of us.

Not that I looked forward to the days of hard work unpacking and organizing our belongings, let alone the immediate task of unloading the necessities-bed, couch, phone, some clothes, and cooking utensils. When you have fibromyalgia, a job like that seems like a mountain to climb. But I was up for it.

Afterwards, instead of taking time to recover from the work of moving, I focused on getting to know the Windy City. That must have taken more energy than I anticipated. I know it took more time than I anticipated, including time away from my stretching routine, so my fibromyalgia pain worsened.

I had to find new doctors. After weeks of searching, I found a doctor covered by my insurance who had treated fibromyalgia (FM) patients. He was quick to give me a prescription for physical therapy. I knew how important it is to find a therapist familiar with FM and started calling those in my insurance plan. I tracked down a physical therapy group whose therapists were supposed to have experience working with fibromyalgia patients. With high expectations, I arrived for my first session. "What can we help you with? Where do you feel pain?" the therapist asked, peering at me over her glasses and ready to take notes.

I had already filled out a questionnaire, giving a lengthy report that I was sure she had at least glanced over.

"Well," I began, "my pain is mostly in my neck, shoulder, and upper back. The left side hurts the most." I hesitated, then said, "I have fibromyalgia, so the pain kind of moves around."

Sure enough, at the sound of the F-word, she glanced up from her note taking and subtly rolled her eyes. "So, you have shoulder and back pain," she sighed.

I wanted to say, "No, I have fibromyalgia," but didn't. Instead, I pushed on saying, "I also occasionally have pain in my hands, a tingling or sometimes numbing sensation that travels up my arms and sometimes in my feet. And I have TMJ. . . ." I continued running down the list of usual complaints, all the while realizing that this therapy group would be a challenge.

Then she moved me to an open area in the middle of the main room to begin stretching exercises. Athletes probably don't mind such a setting, but there was no privacy here. This PT center was in a strip mall. The front and side walls were glass, covered only by plastic blinds. The areas for counseling, massage, stretching, heat therapy, and so forth were sectioned off by partition walls pieced together with a half-inch gap between them that anyone could see through. Not a comfortable setting for therapy one must get partially undressed for.

"This is a neck stretch that I would like you to start with," she said. "It's simple. Keep your shoulders straight, and slightly tilt your head to one side, then the other." "I know this one, but I'm past it with the stretches I do at home already." She stopped and gave me a look. "I understand, but I want you to start with something simple. Then, as you progress, I'll have more complicated stretches for you to do." Wanting her to put stock in what I said, I replied, "I'm at a much more advanced stretching level. This will do nothing for me."

As though she hadn't heard me, she continued, showing me another basic stretch in which you place your back against a wall and press into it with your neck and head. So, I gave up trying to get her to listen and just went along with it.

After three sessions, I quit.

I wanted a continuation of the excellent and knowledgeable care I had received in Michigan, but I didn't have the time or resources to find it. Though that saddened me, there was good news on another front: I thought I might be pregnant.

This wasn't a complete surprise, because my husband and I had recently begun trying to get pregnant. The idea of having a baby grow inside me was exhilarating. What's more, I was weary of adjusting my life to the constraints of fibromyalgia; adjusting to something positive was a welcome change.

I couldn't help taking a trip to the local baby supply store, where I explored the amazing array of products a baby could use. My favorite section was the bedding section. While I stood there picking my favorites for a boy and a girl, an older woman passed by and commented on her favorite, "I like the jungle set. It would be so cute for my grandson."
"Yes," I agreed. "The zebras would really grab his attention too."
"Are you here to pick out a gift?"
"No, my husband and I are expecting."
"Well, congratulations! Children are wonderful. You'll love being a parent."
From there I floated into the toy section, happy to have something exciting and new coming into our lives.

But, as it turned out, the adjustment wasn't entirely positive. I wasn't given a choice between pregnancy and fibromyalgia. Being pregnant with fibromyalgia was a whole new story, the story I want to share with you.

Help Wanted

Though my probable pregnancy was no surprise, the struggle I soon found myself in was, as I tried to find out what to expect or look out for, given my fibromyalgia. First, because of a change in my insurance plan, I needed a new internist. With unaccustomed casualness, I randomly chose one with offices at the hospital down the road. I would be getting a gynecologist soon, I figured; for now, I just needed to confirm that I was pregnant.

Waiting in the exam room, I had a list of questions running through my head: How far along am I? Can I continue my medications? What do I do next? In addition to such obvious questions, two others dominated my thoughts: Will my FM affect the baby? And how will this pregnancy affect my fibromyalgia?

Of course, I had to wait a few days for confirmation of the test results, but the doctor was willing to answer my routine questions right then.
"I'm taking the sleep medication Ambien and an anti-inflammatory, should I continue?"
"Why are you taking that?"
Having already filled out a lengthy questionnaire noting my diagnosis of fibromyalgia and the medications I was taking, I was frustrated at having to explain everything for him and wondered if he had even bothered to look at my chart.
"I have fibromyalgia. I'm concerned how this could affect the baby if I am indeed pregnant and how a pregnancy could affect me too."
"Don't continue to take the Ambien or the anti-inflammatory. Once we've confirmed the pregnancy, you can contact the Ob/Gyn to set up your first appointment."

I hate it when people do that. But, having already dealt with doctors who avoid the issue of fibromyalgia, I shouldn't have been surprised. Then (of all things) he asked if I had any other questions. I replied that I did not (at least not for him).

Disappointed as I was, I was determined to remain positive. If this doctor would be of no help when it came to any possible problems due to my fibromyalgia, I would make sure to find a gynecologist who had experience with FM.

Having learned through the years how hard it is to find an internist with experience in FM, I was nonetheless unprepared for what I now discovered-that it's nearly impossible to find an Ob/Gyn with such experience! After days of relentless Internet searches and phone calls, I found one who had no experience but was open-minded and willing to address my pain-"if the need arises," she said.