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Fibro Parents Survey Results & Big News about Pregnancy and Fibromyalgia Book

As I have indicated earlier, I didn’t quite feel like I had finished with the release of my book Fibro Mama Pregnancy and Fibromyalgia. There were some chapters missing. So I did some research and added a few extra chapters like Pain Management for Fibromyalgia in Pregnancy, Fertility and Fibromyalgia and Labour and Fibromyalgia. I also felt like we needed to hear from other parents who have done this journey, so I created a second survey Fibro Parents Pregnancy and Fibromyalgia Survey 2018.
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call for info
I sent it out to my social media networks and received 20 amazing responses. Here is a summary (the rest is included in the updated edition of Fibro Mama Pregnancy and Fibromyalgia, more information about that below).

Responses

100% of respondents had Fibromyalgia. 70% found their pain worse during pregnancy. 35% took no medication during pregnancy, 25% took paracetamol/acetaminophen, 20% took medicines not directly related to Fibromyalgia, 10% took Gabapentin, 5% took an antidepressant and 5% took anti nausea medicine.
The most popular natural pain relief mechanism was heat: warm showers/baths and heat packs, with rest a close second. Epsom salts, chiropractic care, massage, ice pack and essential oils all received mentions too.
Now we got some amazing advice from these fibro parents, I include most of them in the book and three below:

Caroline’s advice

How did you manage your pain/fatigue during pregnancy?
Showers, massage, physical therapy, rest
How did you manage in those early weeks with baby?
Lots of help, showers
Do you have any advice for other fibro parents about parenting with fibromyalgia?
Pay attention to the weather as it greatly affects fibro. Watch your diet, plan your days according to the weather, how much sleep you got, and what you eat. Nap at least once a day with your little ones.

Elizabeth’s advice

How did you manage your pain/fatigue during pregnancy?
I survived 3 pregnancies through pure determination, lots of essential oils, rest and help from friends and family. Finding a good doctor that understands that a chronic pain body’s endorphins do not actually help with the pain is paramount. (This can be frustrating and difficult). Make sure you don’t give into your cravings because often they will make your fibro flare.
How did you manage in those early weeks with baby?
Casseroles and family. Accept all the help that is offered and if you need more, ask! Most people don’t want to step on toes but are more than happy to help, especially if there’s a new baby. 🙂 It’s ok if your house isn’t spick and span. If the laundry is washed, that can be good enough. Use paper plates to cut down on dishes. Be nice to yourself!! Cut yourself extra slack.
Do you have any advice for other fibro parents about parenting with fibromyalgia?
Teach your children to be super helpers!

Hannah’s advice

How did you manage your pain/fatigue during pregnancy?
Chiropractor, massage, acupuncture, and sleep/rest
How did you manage in those early weeks with baby?
Lots of help from family and husband, found breastfeeding very tiring and strain on neck and back so had to use support aids or lay in bed to feed. Naps when baby napped were crucial. Treated myself to dark chocolate or some snack as often as possible while feeding baby so I was doing self-care. Gentle walks and yoga were good too.
Do you have any advice for other fibro parents about parenting with fibromyalgia?
You can’t pour from an empty cup but with fibromyalgia you almost always feel empty, but you can do this. Remember self-care is taking care of your baby in long run and that you know what works and is right for you so please take all advice on board but don’t think it’s the law and has to be used. Also mother groups it’s okay to not like them I hated them or didn’t find the right mums doesn’t mean you’re alone though we fibromyalgia are probably all just online so talk to us! I also think this time round I’m writing a list of helpful jobs people can do for me with as I found it difficult asking for help and people may not know what to offer and you might be so tired in pain you can’t properly communicate. So I’m hoping just having a help task list might be a good compromise. It also something my husband a toddler can learn to look at together on weekends maybe.
I can’t thank the people who took the time to respond to the survey enough for their time and answers.

Big Announcement

definitive edition pregnancy and fibro.png
It’s time to announce that my extended edition of Pregnancy and Fibromyalgia is now live! It includes everything from before (with extra content) plus the additional THREE chapters (one of these is a big chapter on pain management) and the results of this survey with the case studies from other fibro parents. I have also added to the list of natural pain relief mechanisms significantly. You can head on over to Amazon and order it now! For this week it will be on special (it depends on your currency, so head on over to check out the price for where you are). From April 7 the new price come into effect.
There, I feel content. If I never write another word about pregnancy and Fibromyalgia again, I feel satisfied I have told you all I can.

 


For more information:

Take the learning further with my course, available for free with the option to buy the workbook and/or Pregnancy and Fibromyalgia book!

Pregnancy and Fibro eCourse

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Precious Knowledge for other Fibro Parents

In my quest to unearth further information and present it to those of us who need it, I am gathering a survey of fibro parents about pregnancy and early parenting for inclusion in my updated book and on the blog. 

Pregnancy and Fibro
My first book is available on Amazon now
I thought my mission would be complete upon the publication of my book Fibro Mama Pregnancy and Fibromyalgia last November and the eCourse of the same name. But, alas, there is more information needed and I have taken the call to seek it out. Particularly in the areas of fertility, pain relief, labour and the fourth trimester (early months).
 
I’d be super grateful if you wanted to share your hard earned knowledge about pregnancy, nursing and parenting with fibromyalgia. This survey is just nine questions on areas we desperately need information on. Of particular importance are the three questions where you can give a paragraph on what you’d tell another fibro parent just starting their journey on the areas of pregnancy, the early weeks and parenting.
There are also a couple of questions about pain management mechanisms you enacted.
 
Every drop of information counts for those of us fighting to live as well as possible while pregnant and parenting with Fibromyalgia.
 
Please feel free to share this to get this spread as wide as possible. The more respondents, the more information we receive!
 
Click to take the survey here.
call for info.jpgThank you in advance for contributing to the mission, I will let you know the results of the survey.

For more information about pregnancy and Fibromyalgia:

Find my pregnancy diaries from my second pregnancy, in 2016.
Find my book Fibro Mama Pregnancy and Fibromyalgia AVAILABLE HERE

For access to my free resource page, sign up here. This includes templates, reports and my free microcourse Pregnancy and Fibromyalgia: Arm Yourself with Knowledge will be up there shortly.
Enroll in my eCourse Pregnancy with Fibromyalgia here.
Join the group Pregnancy and Fibromyalgia on Facebook, we chat about pregnancy, nursing and parenting with Fibromyalgia.

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Pregnancy & Fibromyalgia The Results of the Survey

To supplement the existing research and my own experiences, when writing my book Fibro Mama Pregnancy and Fibromyalgia, I conducted a survey. The results of the survey were so interesting (and I don’t think that’s just me as a research nerd!). 

Pregnancy and Fibro
On Sale on Amazon now!

I sent out the link to my social media networks and received 22 responses. There were nine questions, including a free text box for any comments about pregnancy with Fibromyalgia and/or any advice for other mamas.

It was 50/50 for whether the women surveyed experienced a worsening or a betterment of their symptoms while pregnant.

I was less surprised to find that 70% of respondents experienced a severe flare up after the birth of their baby.

A whopping 70% stated that their number one coping mechanism during pregnancy was resting/napping. 25% said heat pack. Ordinarily I would have agreed with the heat pack, but for pregnancy my number one coping mechanism was rest in the form of meditation.

The most surprising response for me was the spread of answers to the nursing question. 40% managed for 12 months or more! 20% last for six months or 12 months respectively. 15% didn’t manage to nurse. 5% expressed exclusively.

As I shared in my post about Nursing with Fibromyalgia, I managed eight weeks of exclusive expressing with Noah before I had to give up. It was an awful, pressured time. I hated it. With Wyatt I managed to get through the first few weeks and get into the groove before he developed reflux. He just couldn’t keep my milk down. Thankfully I knew it wasn’t all or nothing and managed to mix feed with thickened formula until my supply completely dried up at 12 weeks. This was a far more positive experience. Though it was very draining for me both times.

These results confirm the (little) research I found – the experience of pregnancy and nursing with Fibromyalgia is as diverse as people’s general experience with Fibromyalgia.

You can’t guarantee pregnancy will make you better or worse. You can’t know if nursing will work out for you. But you can arm yourself with as much knowledge as possible to support yourself. This is why I have written this blog and my book. To try to help fill this knowledge gap.

Some comments from mamas for you:

“Don’t push yourself too hard! Listen to your body!!” Jennifer
“One of the hardest 9 months of my life but another reason now to keep going and fight!” Mindy
1. My son is 10 months and we are still breast feeding, hoping to go long term.2. The two hardest things for me have been lack of sleep, and being forced to sit in the same position for long periods of time while nursing, or while my son slept. I kept five different pillows on the couch, and used them to prop myself and him up at every angle. Really helped.” Megan
“My advice to any fibromite who wants to have a baby…stay active, eat healthy, and follow your providers instruction to a T. Get plenty of rest. Have a nest you can go to, with all of your comfort items, so you can hibernate when necessary. I hope your pregnancy is wonderful, but if it isnt, you will have an adorable little one to help you through life.” Catherine
“Make sure you have a support team because after the baby your body will be in a flare up from the birth, hormones, lack of sleep and stress. It can last a short time or a long time. My flare up lasted almost 2 years.” Sabrina
“Don’t let fibro hold you back from being a mother! Take one day at a time, be kind to yourself and look after yourself too.” Kelly
“I wish I had known about epsom salts when I was pg. Nursing helped me fall asleep more quickly- I think it is oxytocin related. I wish I had asked for more help- more specific ways that someone could help. Laundry, folding, shopping for groceries, more frozen meals. Looking back, I was so scared of letting Fibro “win” I didn’t take enough time to truly take care of myself (easier said than done with a newborn).” Christine
“go into pregnancy with as much information as you can, and make sure you have as much support as you can, if i did it over i would make sure i had as much help in place as i was able.” Patricia

My book, Fibro Mama Pregnancy and Fibromyalgia is available now in paperback and eBook.