Pregnancy & Fibromyalgia: Lessons Learned and Other Random Thoughts

 

I’m not an expert. And one thing I am sure of is that everyone is unique, one’s body reacts to things in her own way, and that there is no predictability of what’s going to happen. Having a 15-month-old son, I think back on the whirlwind of pregnancy, remembering things I wish I had known just so I could prepare and know what I might be up against. I’m sharing these thoughts in hopes that someone out there will be able to make the pregnancy trip just a bit more smoothly. Just to be clear, having my baby is a lifelong dream. I want to have many more as soon as I can! But, for me, knowledge is power and hopefully I can be of some service to those out there who were in the same position as me: desperately wanting children, already having made that choice to build a family, but have no clue what might come with this new transition in life.


Super sensitivity
Back in college, I researched fibromyalgia for a health course, and the one thing I remember from that paper is that it has a nickname of being the “Sensitivity” disease. Under normal circumstances, lights, odors, and tastes—anything can provoke a reaction. Well, consider that times a million! Pregnancy makes a “normal” woman sensitive. Can you imagine what it’s like to one already predisposed to sensitivity? At least for me, that’s how it was. Every sense was heightened to the utmost level.
Everything smells
Following the above, we might as well continue on, but I do believe scents earn their own moment in time here. There’s a reason. EVERYTHING stinks. I’m talking “unscented” soaps, to water, toast and saltine crackers. Who knew that these things had such a potent aroma? And I don’t mean potent in a good way. Be prepared and ready to find alternatives.
Ventilation is key
When I showered, I could not do so in my confined shower stall. Between the steam and the heightened odor of the non-smelly shampoo, soaps, and water, I felt completely caged in and got sick every time. I ended up having to go down the hall, place some heavy layers of towels down beside the tub, and keep the shower curtain open so I could have a little bit of air swirling around me. I needed as much feeling of openness as possible, in order to keep the scents at bay and the steam at a minimum. And to step into my bathroom where my husband had taken a shower already that day? Impossible. Thus, I needed my own non-smell-filled locale.
Find coping techniques for non-pleasurable tasks
Basically any grooming was a problem area for me. The scent of the toothpaste was traumatic. Shampoos and soaps were nightmares. So, I had to find some kind of means of getting these daily tasks accomplished. During showers, besides the open-air technique, I sang to myself. I probably set world record paces at getting in and out, but a few happy tunes helped me get by. Something about the distraction and the air in and out, helped me get through it all. Some of my other friends with no illnesses said that helped them, as well, so I didn’t feel so silly about it all. In your head, do the same for brushing your teeth. As for washing your face, I could NOT handle the up close and personal unscented soaps. So, I purchased unscented facial wipes that I could use in the convenience of my bedroom, apart from any lingering bathroom odors and just throw away at will. It helped me out tremendously. [Just a note: although you might find some dry food to help with the nausea, like cheerios or crackers, eventually you’ll probably have to switch it up. And as well, if you do have high levels of nausea, remember “Bubbles and sugar.” This one was hard for me because I only like water. But water made me get sick. So to take the anti-nausea medicine or just to stay somewhat hydrated I had to find some form of carbonated alternative. Keep trying until you find something suitable.]
Cooking odors might be problematic
Have you noticed a theme? I hate to be redundant, but this is what my life revolved around. Each basic task essentially came down to how did it smell? I couldn’t really eat very much during my pregnancy. One might be tempted to think that’s a good thing, but I’ll get to that in a moment. Any food cooked in the house was off limits to me and made me sick, even being upstairs a good distance away from the kitchen. My poor husband! So, unfortunately we had to have fast food brought home or go out to eat quite a bit more than usual. I didn’t get sick as much if I ate the smelly foods out in a restaurant. That doesn’t mean I could choose to eat in an aroma-filled restaurant, because that would be simply asking for trouble. Odors still mattered. But in a seemingly bland type of food restaurant, I could handle eating the food way better than at home.
Your body is not your own
I’m sure everyone has heard that about pregnancy, but I have a different meaning. Your body is going to do what your body is going to do and don’t let anyone make you feel badly about it. I honestly didn’t eat very much at all during my pregnancy. But I still put on plenty of weight. I had no clue how I could throw up for 5.5 months straight, not eat a thing, and gain 15 pounds. And then the rest of the pregnancy, I was fortunate enough to just throw up a few times a week and ate only tiny tidbits and gained the rest. I was not in control of what was happening and even though I heard people giving me plentiful advice about how much weight gain was appropriate during pregnancy, I had to do my best to turn a blind ear because I was not in charge!
Sleep is wonderful
I had lots of headaches, dizziness, and nausea during my entire pregnancy. So, when sleep came, I took it. And believe me, your body needs all of the rest you can possibly manufacture because when the baby arrives, you will need endurance. Speaking of sleep, I encourage you to get a body pillow. I didn’t, but if I am blessed with another child, I certainly will. Something to hug and rebalance will mean a world for helping your back feel a little more at ease. And definitely keep extra pillows around to prop up your legs and in between your knees.
Have you heard the fibromyalgia and pregnancy remission theory?
If so, don’t put all of your eggs into that basket. You might be fortunate and I pray that you are! Obviously, some women do feel a little better during pregnancy, so you just might be that lucky one. But, I certainly didn’t experience pain reduction of any form, so although it could seem disappointing, think about it this way: it’s no different than BEFORE you got pregnant except NOW you are getting to bring that beloved life into your world. It’s okay! It would have just been a bonus.
Find an OBGYN who understands fibromyalgia
Now this may seem like a no-brainer, but it’s not as easy as it sounds. I’m personally not a question-asker kind of gal. I reduce stress levels by not focusing on things beyond my control and doctors seem to be in that genre. I ask pertinent questions but I don’t go overboard. So, when I asked several times throughout my pregnancy how fibromyalgia might be affecting my symptoms or what I needed to do to help the delivery process go easier since I had it, and my doctors told me it would be fine and gave me no concrete answers, even I knew I was in for some trouble. I had many moments of wanting to switch practices and I really should have. However, I am also loyal and hate change. All of these characteristics, plus my dogged determination led me to making a poor choice of sticking with doctors who didn’t really get it. One of the doctors in the practice, who actually ended up delivering my son, was even phenomenally nice. I asked a friend of mine who is now a Physician’s Assistant and had just recently completed a OBGYN rotation before getting her degree about a few problems I was having relating to these issues and she basically told me that OBGYNs had so many patients and didn’t care about the problem if it wasn’t affecting the health of the baby or causing risk to the mother. It didn’t comfort me, but I don’t have much faith in doctors so I set it aside in the “another thing I don’t like about doctors” category. But, I just don’t think that’s the truth. So, my advice? Think about troubles you might have along with your pregnancy (super sensitivities, medicines, muscle issues, dizziness, nausea, headaches, fatigue, etc) and ask your OBGYN what they suggest in light of your fibromyalgia. You know how magazines and online references recommend interviewing OBGYNs before you settle on one? Please do so. Find someone who might not have all of the answers but is willing to listen and offer compassion and perhaps a few suggestions. Most of all, find someone who recognizes fibromyalgia has a major influence in your life and how your body reacts.
This is just the beginning
Yes, yes, the pregnancy is the road that brings you to your wonderful baby! It is so exciting and wonderful and amazing: all of those fantastic things. BUT, the practical side is, that delivery might be complicated and post-delivery might be even more so. The trauma from the pushing caused an extreme form of pelvic pain for me that I am still enduring and fighting. I have undergone many postpartum doctor visits in search of answers to the pain from the delivery. Not to go into details, but basically where the baby comes out, between the scarring and the nervous system, there are a lot of issues. And apparently pelvic pain is one of those associations with fibromyalgia that just isn’t talked about much, but definitely exists. Preventive strategies? Ask your doctor for some exercises. They might suggest a physical therapist if you have trouble even before the delivery (like me). Or, I have been told to look into using a doula or midwife for the next go round, so maybe you can head off such serious issues by using one on your first try.
All of this might seem complicated, but it is something you definitely want to look into, think about, and question as you prepare for your wonderful arrival. Thankfully, not everyone will have these issues. I’m usually in that “.08% chance of it happening” category. But, since I am, I know others out there could be, too. Information is power! Being prepared and just knowing what could happen at least offers you the advantage of not having the sneak attack arise throughout your pregnancy road. I know I didn’t cover it all, so if you have other suggestions or ideas to think about, please share! We’re all in this together. And anything that allows a new mom to focus on the joys of her child rather than the discomforts that came along with it, is truly a blessing.
Article written by Carrie Burns, © 2008 butyoudontlooksick.com

  • Jillian

    I had heard before I got pregnant that a lot of women go into remission during their pregnancy. My doctor reassured me I’d be fine. I week into the pregnancy, I started vomiting violently for most of the day. It took months to find a medication that worked, though I still suffered severe nausea. I got a brief break in the 2nd trimester from the pain and nausea. At the start of the third trimester, my daughter hit a growth spurt and the muscles/tendons holding my ribs together tore. I started vomiting again, and was just plain miserable. I could not sleep, I could not sit still at work, and my doctor didn’t seem to care much. From 27 weeks on, I had contractions every 6-7 minutes, and was in the hospital a few times. At 38 weeks, my doctor offered a c section because of the size of my daughter (estimated 10.9 lbs).
    Compared to my sister, I had much more pain and had a fibro flare-up for a few weeks. In general I felt better shortly after the birth. However, my calf muscles shortened in the weeks after the c-section, requiring surgery on my calf. I always took vitamins and ate well, but still ended up malnourised.
    I finally found a GREAT rheumatologist that is caring for me through nutrition, supplements, etc. Right now we’re trying to adopt, but I hope I’ll be healthy enough again to have another bio child. I would suggest trying the SHINE protocol by DR Teitelbaum prior to getting pregnant. I am 6 months in and though progress is slow, I’m feeling more like myself.

  • Hilary Blackwell

    I’m planning on having a child in the future. I know I can handle anything during the pregnancy and pain after the pregnancy. What scares me is that I won’t be able to take care of my baby after the pregnancy and it’ll set off a terrible cycle again. I’ve become almost decided upon adopting, and I would love an adopted child as much as one I gave birth to me, but it has always been a dream of mine to carry and give birth to a child. I just worry because I want the best for my children. Also about OBGYN’s–wouldn’t it be great if we could bring women with Fibro. and other health problems to post doctors, especially OBGYN’s that understand Fibro and those to avoid?

  • Hayley Bragg

    hi, Im 23 years old and 31 weeks pregnant. i would just like to thank the woman who would share there information about there experiences with fibro and pregnancy. I’ve suffered with fibro since i was 14 and never really understood it until my wonderful husband wanted to really know what this condition was and not just except that i am in pain for no reason all the time.
    it frustrates the both of us the lack of interest the doctors seem give about the pregnancy pains I’ve been having, and to know others have gone through this too is a real help to me.Ive been reading some other sites about this issue and some women seem to not even be able to take care of there children after giving birth from the severe pain of the fibro and that petrifies me. my husband and i want children so badly and it terrifies me to think of the fibro playing such a big part in my life. but knowing now, that other women out there have had it and fought it gives me the hope and strength to try to do all i can to avoid the worst possible outcome. I’ve recently discovered that a lot of symptoms of fibro can also be related to a vitamin D deficiency, so to anyone who reads this it’s a good thing to check up on. so just a big thanks to all out there who share this information with the rest of us, i don’t feel as alone with it after reading your messages. my husband and i thank you!

  • Natalie

    Thanks for the article… it was enlightening. I’m seven months into my third pregnancy, and while I haven’t been officially diagnosed with FM at this point, it appears that that is indeed what I have, along with (or part of the cause of) joint dislocation, severe sensitivity to touch, etc. etc. Your story describes my prenancies to a T as well (besides my dislocation). For me, each pregnancy has made the symptoms I’ve had my whole life (I was probably 15 before I realized that most people don’t hurt ALL of the time) much, much worse. It’s possible, it’s bearable somehow, and I am grateful for my kids, but it is very stressful. And yes, the hardest part is that the rest of me seems totally fine! I just walk like I’m about 90 years old and spend half the night moaning. 😉 But nobody understands that hey, this is really not a fun time for me.
    My suggestions — get a good chiropractor who understands, or is willing to research, your condition and treat you accordingly (and be GENTLE when adjusting you!) That has helped a lot this time. Secondly, find a midwife or other birth care provider who is willing to listen to your concerns before and after pregnancy. I had a water birth with my second, and that was the best thing I could have done. The support for my hips and pelvis could not have been provided any other way, and it was much less traumatic for the baby too. And for the postpartum issues (chronic pelvic pain, etc. etc.) I recommend a good, experienced homeopath… a lifesaver for me the second time around as well.

  • vicki

    During my pregnancy my Fibro went totally into remission. I’ve had it for 8 years along with M.E.
    A lot of my M.E symptoms were made worse during pregnancy (the exhaustion, dizziness, passing out and foggy confusion mainly the common effects of pregnancy anyway) It can be difficult to separate whats M.E or Fibro or just having a bug or being pregnant.
    For me the Fibro stayed away but gradually came back as I weaned my daughter although it’s hasn’t reached the same level and my daughter is now 16 months old.
    I wonder if hormones play an important part in the disease for some perhaps.

  • What a fabulous article!! You perfectly described all 3 of my pregnancies (which including Fibromyalgia and hyperemesis). You have some very practical tips in there for future moms. I had to figure out most of that on my own. Congrats on your little one! 🙂
    Amanda

  • Kirsten

    This was quite alarming…since I’m pregnant & have Fibro…I’ve had slight morning sickness, my “sick” feeling has reduced DRAMATICALLY since being pregnant…I can’t stand the sight & smell of alot of foods (but no different to normal). I’m ALOT more tired & since I’m off all my meds, am doing extremely well pain wise, although swelling of my joints had increased. Everyone is different & there has not been much research on the affects of pregnancy on FMS (unfortunately)..so we really have to wait and see with everything 🙂 I’m just taking one day at a time.

  • Ashley

    PS. Thank you for this article it helps alot!

  • Ashley

    My husband and I are thinking of getting pregnant this summer. I’ve been very frustrated with the flimsy answers I find about pregnancy and FM. It can get better or it can get worse…well which is it. Can I work while pregnant or is that a pipe dream? Luckily I have a high pain tolerance and have mananged to control mine with 10 mg of amtryptaline and a water therapy (aka a hot tub). Not only do I have FM, but I have an unfused sternum which I’ve been told will most likely cause increased pain and possible trouble breathing while pregnant. And, I’m sorry I am NOT going to not have kids on the off chance that I might pass it on to them. It’s a manageable disorder. Does it suck..yes, but you can’t let it take over your life. You can pass on all sorts of things to children…but we don’t stop having them. And girly, what do I tell my husband….oh sorry honey I was a healthy woman when you married me but now I’m not and guess what no kids for you. WHATEVER

  • Colleen

    As a response to Shannon’s concerns, I was speaking purely of fibro, not a genetic disease. While it can be frustrating to watch my kids help with (do most of the) housework or help watch each other when I have a flare-up, I have to balance my own “need” to take care of them and protect them from my issues, with reality. Reality is that my kids are now far more sensitive to the needs of others than they were before, they are also more deliberate and thoughtful when it comes to their on household responsibilities, and contributions.
    There is only a tendency( as far as I am aware) to “pass down” fibro which I am sure also has more to do with coping skills and understanding and dealing with your emotions than it has anything to do with an actual virus, bacteria, or genetic mutation. Who knows how a hormonal imbalance can be passed down.
    I thought long and hard about all medications and methods which I used while pregnant with each of my children, not only in regards to my fibro, but also testing, labor drugs, and interventions. I never took anything (not even cough medicine) which could have even possibly harmed my children.
    I have only the best hopes for my kids, and am working hard to help them learn appropriate ways to deal with stress and emotions, and how to know their bodies and limitations.
    All of my pregnancies were “unplanned” but each of my children is wanted, loved, and cared for. I am very sorry for your situation and the pain both real and emotional you made apparent in your post. However, not all children of fibro sufferers have or will have your experience or diagnosis. I think it’s unfair to assume that all fibro sufferers have children for purely selfish reasons, or do not think of all the different outcomes which could be possible.
    Obviously, your situation is very difficult and I hope that you will, with time, be able to be and feel better. My deepest sympathy and only good wishes are with you.

  • I think you all are forgetting a very important piece of this puzzle. You all have valid concerns about yourself – but what about the kid? My mom was concerned about passing fibro onto her children, and the doctors said that it wasn’t possible, until she was 5 months pregnant with me and they changed their minds. I am now 23, my mom is not crippled. I spent most of my childhood taking care of her, and I was diagnosed at 11. Please, stop thinking about yourselves and think about the life of pain you are giving to your children – and if you can’t do that – think of the guilt you will have when you see your child taking care of you and suffering him or herself.

  • Colleen

    I am a 15 year survivor of Fibro, and at year 6 found out i was pregnant with number 1 (I now have four) That pregnancy was the worst…mostly because I had the worst fatigue and motion sickness. I actually had to go on disability because I could no longer take the train or drive to work. Although at the end of my pregnancy i weighed more than any of my other pregnancies, my weight gain was only 8 pounds. I have noticed that I am “one of the lucky ones” whose fibro goes into “remission” When pregnant or full-time nursing.
    My experience with taste and smell was different than described above. I became obsessed with certain soap smells (green lever 2000) and would just lather and lather because well who knows why. i would also chew and chew specific kinds of gum…and had many other weird(er than normal) cravings.
    To respond to the concerns raised by Pamela, there is not much you CAN safely take to deal with pain etc. (at least not anything that I was aware of at the time) where the efficacy was worth the risk to the baby. I regularly would end up going in to have a “fibro appointment” after stopping nursing, and finally be able to take something for the mounting pain.
    As a person who went from July 2000 to September 2006 pretty much non-stop nursing or pregnant, I can say that the last few years have been quite a change and it has been very frustrating to find ways to manage my pain post pregnancy. It was a very painful adjustment for not only myself (being a full-time, daily fibro sufferer again), but also for my husband and kids.
    We have finally(hopefully) found what meds work for me, that are covered by insurance ($300-$400 a month of supplements plus $400 therapy etc.. does NOT work when you have a family of 6). While this is NOT the ideal (to live with fibro through meds) and I am probably killing my liver. This is what works now.
    And I am living my life to the fullest I can. Because It is MY life…NOT the fibro’s life.

  • Deidre

    As a Chronic Fatigue sufferer who had to endure years of infertility treatment to have my baby (he is now 2) I was very anxious about pregnancy. I am extremely sensitive to smells and chemicals and found that aspect equally challenging as Carrie described. I was fortunate to come across of range of products that have dramatically improved my ability to cope with energy and health issues for myself and my child – we have had wonderful results treating his asthma (he was hospitalized a lot during the first year and we’re now nearly asthma free). I’m now promoting the products to help any other Mums, Mums-to-be or Working Mums who are looking for safe products and solutions. I’m happy to pass on any information that would help.

  • Pamela

    I was really disturbed by your article. I get that it was a personal account but with the presence of anxiety in most cases of fibro, this was really alarmist! There weren’t a lot of solutions or coping options included. There was no concrete discussion of managing pain with meds. Finally,there was no discussion of resources where readers could conduct their own research & find their own options for coping. I feel very strongly about sharing of experience in the fibro community but if there’s little to no upside to sharing or gaining knowledge then it’s simply an exercise in futility. This kind of article could easily add weight to a hypothetical set of fears. I look forward to getting pregnant and will hope for the best because my research thus far shows many options for managing the challenges I might face.

  • This is an excellent article!!
    Regarding the fibro/remission theory… at least what I heard by way of a friend’s doctor is that it’s a toss-up. The fibromyalgia will either remiss to some degree or it will get worse, sometimes irrevocably. My friend was lucky and has had very little problems with her fibro since her pregnancy, but I’ve known other women that have been basically disabled as a result.
    Personally, between my fibromyalgia and the plethora of other health issues both myself and my husband have, I’ve chosen not to have children. Right now, I’m content with playing auntie to my friends’ kids; should that change, there’s always adoption. 🙂