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A Fibromyalgia Patient’s Journey to Motherhood

  [ 257 votes ]   [ 1 Comment ]
By Gina Hutter • www.ProHealth.com • August 20, 2007


This article is excerpted with kind permission from the five-star rated book Fibromyalgia: The Complete Guide from Medical Experts and Patients, by Sharon Ostalecki, PhD.*

“You may find, as I did, that pregnancy can actually make you feel better for the duration,” writes Gina Hutter, a fibro patient and mother of two. Following is her account of the ups and downs of her first pregnancy – struggling to find any doctor who could answer questions about how pregnancy would affect her and the baby, or at least a doctor willing to believe in her pain.

________________

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....

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 AmbienR 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.

    So Far, So Good

    I’d been dealing with Fibromyalgia and its effects on my life for some time, and I was ready to realize that the person who knows my body and its responses best is me. This was a comfort, but I would have liked a treatment “partner” whose clinical experience with Fibromyalgia made her empathetic and supportive. Then again, I would soon be taking care of another human being, and looking after both of us during my pregnancy would be good practice. I patted myself on the back – and on the tummy – for my good attitude.

    As my first trimester unfolded, I noticed a gradual increase in pain.

    I suspected that this wasn’t a routine development, so I set about informing myself about my situation. I was sure I’d find relevant information on the Internet, but repeated searches turned up nothing. Occasionally, I came across a posting by someone looking for similar information, but no reply was ever posted. I have to admit that this disheartened me, but my first scheduled Ob/Gyn visit was coming, exactly three months into the pregnancy. I prepared to ask questions so clearly that they would have to elicit clear answers.

    In about my eighth week, the pregnancy hormones started to kick in, and I began to feel better.

    By the time of my first visit, I had no morning sickness, though, to my delight, my belly was expanding. I met with the Ob/Gyn, and we discussed all the normal aspects of pregnancy. Since everything was going well, she did not want to pursue any possible difficulties related to Fibromyalgia. Since I felt better, I didn’t push the subject and agreed that we would take things one step at a time, addressing any FM needs as they arose.

    While she was busy checking over her paperwork, I took the chance to look her over. Slightly plump with brown hair and little make-up, she was pretty without trying to be. She had a relaxed and educated manner. Looking up from her papers, she said, “If you find you are having any pain associated with Fibromyalgia that you can’t seem to deal with, then we can try something to help you out.”

    She smiled warmly, and I said to myself that she was the first physician I had met since the move who tried to understand FM and was willing to work with me. This looked like the best situation I was going to find. Besides, I was feeling better.

    One Day at a Time

    As the weeks passed, my pain returned to the tolerable level it was at prior to pregnancy. Forsaking ibuprofen, I took Tylenol when I wasn’t feeling well, ate healthy foods, and continued stretching exercises. This no-frills regimen kept the pain under control. Among my blessings is a very understanding husband, who was especially nurturing during my pregnancy. I also had a great boss who likewise suffers from Fibromyalgia and showed that he cared by frequently aking how I felt.

    Though I didn’t take him up on it, I really appreciated his offer to lighten my schedule and work load. He was good about an occasional sick day and giving me time off for doctor visits, which made things more bearable all around. I made a point of continually reminding myself how fortunate I was in the people around me daily.

    One Step Backward, Then Another

    …During my second trimester of pregnancy, my stomach grew large, and my back began to hurt more. My posture changed, and the pain in my neck and arms flared again.

    In my scheduled Ob/Gyn visits, I drew the other doctors in the practice. This was frustrating, because I had to re-explain my condition to each new doctor. So, I didn’t get the letdown of doubt or disbelief in the doctor’s face just once, I got it repeatedly.

    At this time my biggest concern was my sleep position, something I had been struggling with anyway.

    Sleeping on my side causes severe pain in either my arm or neck or both. Sleepin on my stomach causes neck pain. The most comfortable sleeping position for me is on my back. Of course, this isn’t recommended during pregnancy once you stomach gets big. I had to force myself to sleep on my side, changing sides throughout the night.

    Still, every morning I awoke with severe neck, shoulder, back, and arm pain. I tried adding pillows, which pregnant women often do with positive results. I tried pillow support under my shoulder, under my side, under my arms – nothing worked. I told myself I simply had to get used to it.

    Of course, I had to go without pain medication. But the pain was tolerable, at about the same level as before pregnancy. I wondered if pregnancy’s hormonal changes had a pain-reducing effect, but I couldn’t find any information on the subject. As my pregnancy progressed, I was plagued by the same things that plague many pregnant women: lower back pain, stomach pain, cravings, swollen feet, and severe heartburn. But I was spared morning sickness and some other common discomforts of pregnancy. So, ironically, people often said that I was lucky or that I was having an easy pregnancy. If only they knew!

    In the past, I’d found it easier not telling people about my Fibromyalgia. Now that decision left me no honest way to explain why I wasn’t joining in the cheering. Having Fibromyalgia is very painful and difficult; add a pregnancy and you have twice as many concerns. But I didn’t discuss this with anyone except my husband. To everyone else’s enthusiastic comments, I just nodded and agreed that I was having a fine pregnancy.

    About halfway through my second trimester, I started to feel more pain in my shoulder, so I decided it was time to address that and other chronic pains.

    I already knew that, at my next visit, I was to see yet another doctor I had not met before. Feeling as poorly as I did at that point, I was anxious about what to say to this new doctor, how to describe my condition and wrap up in fewer than my allotted visit minutes everything I had experienced and discovered about Fibromyalgia in the last few years.

    I was unsure how I should ask for help, what was reasonable to expect, and what options I had. To perfect my anticipation, underneath my anxieties I was experiencing Nervousness 101, my customary apprehension whenever I must prepare to explain everything to a new doctor.

    To my happy surprise, the visit began well. We discussed the progress of my pregnancy and what any pregnant woman might expect – both now and for the remainder of my term. Put somewhat at ease by the doctor’s manner, at this point I told him I’d had Fibromyalgia for years and had felt okay up to this point, but was starting to feel more intense pain in my shoulder and other particularly vulnerable areas. He listened with overtly waning patience as I describe my symptoms. Then he dismissed the pain as “pregnancy pain.” I replied that my neck and shoulder pain was the same pain I had been experiencing for years.

    He looked at me steadily for a moment in a silence that made me uncomfortable. Then he said that Fibromyalgia is a “waste-basket theory.”

    The most blatant dismissal I had ever received, that stung like a slap in the face. Was he for real? Pain in the neck and shoulder isn’t pregnancy pain! Being overly emotional at this hormonal stage, it took all my self-control not to scream at him or break down in tears.

    Girding myself, I tried twice to explain that what I was experiencing was not normal pregnancy pain. “You are just experiencing a lot of changes, and these are all very normal,” he insisted. I wanted to ask him outright how he could dismiss the pain in my neck, shoulder, and back as pregnancy pain when I’d had it for seven years. But I couldn’t voluntarily bang my head against the wall of his certitude.

    Instead, I just looked away, determined not to cry, as he went on the explain matter-of-factly what I should expect at my next visit. At that moment I realized how alone I was in the medical maze and that I would imply have to cope with pain.

    Whenever I had asked an Ob/Gyn in that practice about seeing a specialist for my pain, the idea was dismissed. I was told in no uncertain terms that there was no reason for me to see anyone other than an Ob/Gyn during my pregnancy. I didn’t know what to do. Should I call the other doctor? Should I find a different physician? I decided to continue with this group of doctors, hoping that the pregnancy would continue without problems and that the first doctor would deliver the baby.

    But never again did I ask for help from a doctor in that practice. I became independently proactive.

    I did a lot of stretching exercises and purchased a yoga-for-pregnancy book to practice those techniques. Taking one day at a time, I dealt with pain issues as they arose. I used heat and ice therapy and took a lot of Tylenol.

    During my third trimester, my stomach grew very large, and sleep became increasingly difficult. My stomach was so large it was also hard to move around during the day. I struggled against fatigue. I spend most of my free time during the day sleeping, yet I always felt tired. I took a nap almost immediately after work, woke long enough to eat dinner and get ready for the next day, then fell asleep for the night, tossing and turning. Whenever I was able to sleep with few wake-ups, I did feel a little better.

    During this period, the Fibromyalgia pain worsened. I also had severe heartburn and pain below my ribs on the right side. To feel better, I used heating pads and ice packs, and I tried to stretch. I continually felt I was running out of options to heal myself.

    As you might guess, near the end of my pregnancy, I started to worry about the pain of giving birth. By thinking about things like this, I tried to concern myself with the normal worries of a normal pregnancy, but I wasn’t always successful. I wondered what effect all the stress on my body would have. I wondered if it would take me longer to recover from giving birth than someone without chronic pain. As I felt my anxiety rise, I reined in my fears about the pain of giving birth, realizing that in what I was already going though I had faced pain daily and had seen that it was, after all, only pain. I just wanted to get it over with and cheered myself by continually reminding myself that my due date was near.

    Still, I now started to worry about completely different issues.

    Because I didn’t know if Fibromyalgia is hereditary, I worried that my baby might be more likely than other children to develop Fibromyalgia. I worried that I might not be able to hold my baby for long or to carry her comfortably.

    With but a week till my due date, I took a leave of absence from my job. Free of the stress tied to my work, I started to feel better. However, with that pressure gone, time slowed to a crawl. I am not someone who leaves things until the last minute, so the nursery was already set up. In fact, everything was ready for the new addition to our family. I was physically exhausted and anxious for the baby to arrive.

    Birth of a Baby - And a Mother

    My due date came and went. Ten days later, I was happy to be induced. Unfortunately, I had to have a Cesarean section, because, as my contractions increased, the baby’s heart rate fell, but my dilation didn’t progress. I don’t remember much, but I do recall the feeling of being pain-free when the anesthetic took effect. And I remember my doctor asking, “How do you feel?”

    “Oh, I haven’t felt this good in seven years.”

    She simply smiled, having no idea that this moment was like a flashback to my prepain days and a dream of my heart’s desire – to raise my child and have pain-free days. This moment gave me hope for that future and for future pregnancies.

    The rest is very foggy in my mind, which is probably a good thing. I remember my husband being at my side, and I remember when my baby girl was born. I remember thinking how beautiful she looked, how amazing it was that she was moving her hands and feet, and how now nothing else mattered.

    The following days were filled with both pain and joy, of course. I was given Ambien for the first few nights but didn’t continue taking it after that. For, if I took a sleeping aid, I might not be able to wake up fully when my baby needed me at night.

    Even though the nine months journey of pregnancy was over, I had much further to go. Though my mom came to stay with us and help out, the first few weeks at home were virtually sleepless. But every new parent goes through this rite of passage – a fact I repeated to myself as often as necessary.

    Healing from the Cesarean delivery was long and extremely painful, but slowly I began to feel better.

    When I was finally able to sleep through most of the night, it was a blessed relief. I felt okay, and the Fibromyalgia pain wasn’t too bad. I continued to feel better as I bonded with my daughter and learned to take care of her needs in a responsive rather than bookish way. A settling feeling came over my husband and I, we felt comfortable. We were now a family…in a new city…in a new home…and blessed with a child.

    Now that my daughter and I are adjusting to the brand-new immediate world we share, I find it natural to focus on the pleasure Isabella gives me rather than on my physical problems. Still, it’s hard to ignore my continuing heartburn.

    And though it doesn’t steal much attention from my child, Fibromyalgia pain is seeping back into my life.

    Looking back, I realize that during pregnancy I felt mostly the same as before and at times I even felt better. Now I’m picking up where I left off before the pregnancy began.

    I treasure the lessons I learned. If I have another child, I won’t be afraid or feel helpless. I’ll know that any difficulties won’t be worse than I can handle; that I can and will cope. My advice to anyone with Fibromyalgia who wants to become pregnant – or may be already pregnant and worried – is:

  • To take control,
  • To ask for whatever help you need,
  • And to keep asking until someone listens.
  • Yet, even as you look for answers from professionals, never forget that you are the primary expert on your body.

    Stretch, exercise, take a pregnancy yoga class, eat well, and relax. You may find, as I did, that pregnancy can actually make you feel better for the duration. Your reward for doing all those exercises and asking all those questions is your wonderful baby….

    ___

    Note: For more information on FM and pregnancy, see "Dr. Mark Pellegrino Offers Insights on Motherhood and Fibromyalgia."

    *Dr. Sharon Ostalecki, PhD – herself a fibromyalgia patient - is a nutritionist with a practice specializing in fibromyalgia and Chronic Fatigue Syndrome (ME/CFS), based in Novi, Michigan. Dr. Ostalecki is founder and president of Helping Our Pain & Exhaustion (H.O.P.E.) http://www.hffcf.org/ – a nonprofit organization dedicated to fibromyalgia awareness building and education. She also leads the American Pain Foundation Action Network in Michigan, and many other support & outreach programs for the chronic pain community.

    Disclaimer: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any illness, condition, or disease. It is very important that you research and discuss any change in your healthcare plan or health support regimen with your professional healthcare team.




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    Article Comments Post a Comment

    Journey to Motherhood
    Posted by: aprylle
    Aug 23, 2007
    I do understand how this is frustrating especially from an American standpoint. In Canada we don't have too many of these doctor issues and finding one to treat you from the beginning of your pregnancy to the end. I have phone 1 or 2 doctors who shook their head who were doctors I saw in passing at a walk-in clinic. I had a doctor tell it to me simply like this, just the way you have migraines, fibromyalgia and irritable bowel, we simply cant see the pain your in but we know it's real!! On that basis any doctor should be able to understand the pain is not in your head and try their best to acknowledge that a person is in pain no matter what disorder. Many doctors have not taken the time to stay updated on medical journal to be anywhere near up to date. I've discussed with ob-gyn over a year before hand my plans to get pregnant. We mapped out a plan of action relating what drugs I can and can't take while be pregnant, to what can I take for pain and how my FM may present itself during pregnancy. I think it's wise to really find ob-gyn who really has your best interest at hand. Talk to other people with FM or other chronic pain conditions and find out the name of their ob-gyn.
    Reply Reply
     
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