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.

My Six Tips for Pregnancy with Fibromyalgia

I have been researching pregnancy with Fibromyalgia for the past four years and have written about my own experiences here on the blog.

Based on my research and exprience I have compiled six tips for pregnancy and Fibromyalgia. I talk about them in the video below.

The six tips are:

1. Arm yourself with knowledge
2. Get your body into the best place possible before conceiving
3. Prioritise rest and sleep
4. Nourish your body with good food and supplements
5. Get a pain management plan in place- discuss with your doctor what medicines you cannot come off, what you can and get your natural pain management mechanisms in place.
6. Make a plan for the final trimester, delivery and first six weeks that involves a good support system.

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
Sign up to receive my free micro-course: Arm Yourself with Knowledge coming soon to my free resource page.
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.

Some of my links are affiliate links, I receive compensation at no extra cost to you if you purchase using these links. I never promote anything I don’t 100% support myself.

Fibro Mama Pregnancy and Fibromyalgia is on Sale! One Week Special

Just a quick note to let you know that my book, Fibro Mama Pregnancy and Fibromyalgia is on special starting today at just .99 cents! And it will slowly return to normal price in increments until the 12th of January. So get in quick!
Pregnancy and Fibro

On Sale on Amazon now!

So if you were curious about what pregnancy might be like with Fibromyalgia, how nursing might go and wanted some tips about each trimester of pregnancy, the first six weeks, nursing, and parenting then head on over to Amazon. My book is only one of two books about this, so I’m really proud to provide some information in an otherwise nearly blank space.

Don’t forget to check out my Pregnancy Diaries page for all of my pregnancy diaries from when I was pregnant with Wyatt last year. I also include the birth story and a diary entry from the first month.

I also provide free resources on my page of the same name – eResources that I have made for you, some key chronic illness blogs and my favourite books (these links are to Goodreads).

May I ask you a favour? After you’ve read my book could you please leave a review on Amazon and/or Goodreads? This way we can ensure more people who are fighting Fibromyalgia and pregnancy can find some information.

To stay up to date and receive a free copy of my eBook Fibro Mama Tips for Managing Early Pregnancy Symptoms – sign up here.

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.

Fibro Mama Pregnancy & Fibromyalgia Book

Are you wondering if your symptoms will be better or worse during pregnancy? If you’ll experience a flare up after delivery? What nursing with Fibromyalgia might be like? Have you thought about what coping mechanisms you’ll utilise during pregnancy? 
Melissa shares what the research says, what she experienced in her two pregnancies and what other women shared in a survey. 

After being disappointed at the lack of information about pregnancy with Fibromyalgia when I had Noah four years ago, I set about writing up my experiences and researching as new information became available.Pregnancy and Fibro

On my Fibro Mama Pregnancy Diaries page, I include my journals from my pregnancy with Wyatt last year, which I edited and posted over this past year.

Recently, I told you I was writing a book about pregnancy and Fibromyalgia with my research, my experiences and the results of a survey I took.

The results of the survey were so interesting (and I don’t think that’s just me as a research nerd!) that I’ll write a post about them. It was nearly 50/50 for whether the women surveyed experienced a worsening or a betterment of their symptoms while pregnant. A whopping 70% stated that their number one coping mechanism during pregnancy was resting/napping (I wholeheartedly concur, though my resting takes the form of meditation).

I have finished my book! It’s a little exciting for me as it’s one of my life goals to publish a book.

So Fibro Mama Pregnancy and Fibromyalgia is available on Amazon now.

I’ve written chapters on the existing literature, about each trimester, nursing, being a fibro mama to a tiny baby and toddlers and include some advice for midwives and fathers.

I’d be so grateful if you supported me by purchasing it and leaving a review on Amazon and/or Goodreads.

I’d also love to hear your top tips for surviving pregnancy with Fibromyalgia because sharing knowledge is so necessary when so little literature exists.

Pregnancy & Fibromyalgia Survey, Book & Page

Fibro Mama Tools for Managing Early PregnancyAfter being disappointed at the lack of information about pregnancy with Fibromyalgia when I had Nu four years ago, I set about writing up my experiences and researching as new information became available.

On my Fibro Mama Pregnancy Diaries page I include my journals from my second pregnancy last year, which I edited and posted over this past year.

Now I’m writing a book!
On my new Fibro Mama Pregnancy & Fibromyalgia page I include the links to the ebook I’m writing as I publish the posts. When it is complete (and edited) it will be available for purchase, with extra content.
For now, could I ask you a favour?
Would you fill in a survey so I can add to the research available (limited) and my experience (two pregnancies makes me an expert in my experience not collective experience)? Screenshot_20171117-092641
If you’re interested in following my progress in writing the book, or supporting me by purchasing it when I’m finished, please feel free to follow this blog and tell anyone who could benefit by this information.
Please feel free to comment about anything further you’re curious about and I’ll do my best to research it.

Fibro Mama Pregnancy Diaries Weeks 36-38

pregnancy diaries 36.38After a week of intensified Braxton Hicks contractions, escalating back and hip pain and other excellent end of pregnancy symptoms, I was glad to make it to week 36. At week 36 baby’s lungs are better prepared for the outside world and he’s mostly ready.

Week 37 is considered term. Nu came at 37 weeks and 4 days, for which I was profoundly grateful as I was exhausted and in so much pain by then.

Sleep deprivation is like putting Fibromyalgia on crack. It makes sleeping even harder, you lay awake in pain for hours at night and spend all day in pain. The fatigue is unrelenting. I’m trying to severely limit the Panadiene as the midwife said we don’t want it building up in my system before birth.

Late pregnancy symptoms are uncomfortable for anyone. The heaviness of the belly, the constant bathroom stops, the back ache, menstrual like cramps, Braxton Hicks contractions, alternating hunger and nausea, fatigue. At least these are for a finite time. Though I am a little jealous of those who know their end dates (inductions and cesareans)!

Unfortunately, we found that my iron levels had completely depleted and I had to quickly have an injection at week 37. It certainly explained why I had been so exhausted, lethargic, nauseas and in so much pain. Within days of the injection I felt so much better! It was amazing, I hadn’t realised how sick I had gotten.

I managed to spend the day out with my family and walk more than I had in weeks on the Saturday of that weekend. On the Sunday I managed to meet a friend for coffee and wander around the mall with Nu in tow (I had been too exhausted to consider wrangling him out of the house). It was really nice.

I had a show and a little mucus coming away over the weekend after 37 weeks ticked over and had stronger tightenings which made me a little excited. I couldn’t wait to meet my boy.

At week 38 we began getting ready for Christmas and put up our tree and took Nu to a Christmas Fair. It was really lovely as he’s beginning to be able to understand and get excited with us. My stamina had greatly decreased by then, Nu saved me a lot of the late pregnancy symptoms by arriving early. I hoped we wouldn’t get too far into December as I wanted baby to have his birthday separate from Christmas and my back needed him out!

I have shared this journey so that people can see what if is like for this mama with Fibromyalgia to do pregnancy, find it in my Pregnancy Diaries page here. 


For more information about pregnancy and Fibromyalgia:

Find my book Fibro Mama Pregnancy and Fibromyalgia AVAILABLE HERE
Sign up to receive my free micro-course: Arm Yourself with Knowledge straight to your inbox
Enroll in my eCourse Pregnancy with Fibromyalgia here.

Fibro Mama Pregnancy Diaries Weeks 34-35

fibro mama pregnancy diaries 34.35Week 34 was characterised by fatigue, pain, menstrual like cramps, many Braxton Hicks contractions and growing excitement. My body was definitely gearing up for the last weeks and delivery.

Pacing became necessary. 30 minutes of activity in exchange for a rest with the heat pack.

My neck, which had coped so well previously, started to get quite stiff and sore. After a day of doing too much on the computer (finishing two assignments for my bookkeeping course and scheduling two blog posts) I experienced pain levels of 7-8/10 with a severe headache causing nausea. I am quite proud of my coping mechanisms – once Nu was in bed I had a hot shower, used the TENS machine on my shoulders, and heatpack on my neck. After coming off my one Panadiene per night in preparation for baby’s coming (and wanting to avoid any potential breathing issues from the codiene, very low risk) I allowed myself to have one. This all enabled me to get to sleep. I did wake every half an hour at first, but then managed a three hour block in the middle of the night, before lapsing back to frequent waking. For me, for this pregnancy, this was quite good. I did have to take it quite easy for next few days.

Baby seemed to burrow himself lower in week 34. When I sat down it was like he was sitting in my lap. There were occasional stabbing pains down low and more painful Braxton Hicks contractions. One night I woke with one that required breathing to get through. Each afternoon and evening seemed to bring a flurry of them, whether walking or resting (though I was mostly walking at this time and herding the 2.5 year old through the evening routine).

With my Whooping Cough vaccine down, week 35 ticked over and the birthing centre tour taken, all that needed to happen before I was ready for baby was for two weeks to elapse. I wasn’t sure when to hire the baby carseat (I didn’t want it to sit in the car, unused for four or five weeks). But, apart from that, I had everything organised.

I found some relief with a lavendar massage oil on my low back and glutes (and my whole back whenever I could talk husband into a massage) before bed. On the nights my neck was making it hard to lie down I used a menthol massage cream. My heatpack, pelvic tilts, child’s pose, meditation, stretching, resting, good food and lots of water got me through the difficulties of late pregnancy.

I have shared this journey to show what it is like for a mama with Fibromyalgia to do pregnancy, see my Pregnant Diaries page here. 

Fibro Mama Pregnancy Diaries: Week 30

fibro mama pregnancy week 30I couldn’t believe my baby was coming sometime in the next 7-10 weeks!

This pregnancy was such a different experience to the first one, for which I was so grateful. It was challenging and I was pretty sore and tired (and there’s more to come) but I tried to savour the good bits. To remember the feeling of my tiny baby moving within me, to know I was growing a human life. It’s amazing.

 

A lot of my to-do list had been ticked off for baby. I was not prepared to go out for long shopping trips anymore. Most of what’s left was to prepare what I could in advance to make life easier.

I had been daydreaming/visualising about how it would be better than last time, without a prolonged labour experience, without being left without my husband in the first days, without my son being sick and needing to be back in hospital after three weeks…The difference this could make. I also had a list of the things I could try while nursing and after that in order to support my health – including rhodiola rosea for energy and adrenal support.

Nursing was occupying my thoughts. With Nu I really struggled, he was sick and a lot of problems arose with that, it also hurt (my nipples were ruined and my actual breasts ached so badly – I cried when I had to go and express). I hated it. It did not help my experience of the first six weeks of motherhood.

This time I was hoping that a better start, the baby being well and a different baby would make a difference. I was hoping that baby will latch well, drink well and not be resolute about going to sleep after one minute! I was also hoping that the entirely different situation will give me some leeway in the pain and energy levels. I had my double expressing machine, nipple cover, cream and ice packs ready. I was going utilise the six weeks my husband is home to really make a luxury out of feeding – go and lie down comfortably with my heat pack and potentially a guided meditation to try to make it a rest at the same time.

My lower back/hips continued to feel rather sore, almost like they were being sawn off. I had found that not taking a walk (in addition to my 8000 incidental steps per day), doing pelvic tilts and yoga stretches on all fours made a difference. As did lying on my side but leaning slightly back on my maternity pillow when in bed. Heat pack, warm showers and arnica rub helped.

Meditation continued to be a life raft. 45 minute body scans with my heatpack about lunch time made a huge difference to my pain and energy levels. The days I couldn’t lie down were quite difficult.

From the day that 30 weeks ticked over, all of a sudden, I felt blinded by exhaustion. By the evening I was in a lot of pain and so tired I felt ill. I had to crawl into bed as soon as Nu was in bed to lie down. Lying down helped, but being in bed for so long made my low back and hips very sore by the early hours of the morning. Being proactive (and knowing at 27 weeks my iron levels had been at the bottom of the normal range) I scheduled an iron injection for a boost. This wasn’t without troubles, it is painful to get the injection and for the day after, and it also leaves a bit of a stain (I still had a stain from where I got it last December). But it actually made all the difference in the world.

I was simultaneously counting down, taking it one day at a time and enjoying my time with Nu.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24, 25-29 here and look out for the rest soon!

Fibro Mama Pregnancy Diaries: Weeks 25-29

fibro mama pregnancy diaries weeks 25.29Following the onset in week 22 or so, my low back and hip pain became worse. Sleeping was difficult, I had to start the night with a hot water bottle and as the night progressed it got harder to ignore. By 5am I wriggled around trying to get comfortable more than I slept. The morning was spent trying to mobilize and push through. My midday liedown became challenging for relaxing enough through the pain to rest and as the afternoon and evening wore on the pain became worse.

I tried third trimester yoga videos on YouTube (this one’s a goodie), used my heatpack religiously, took Panadol and Panadiene as sparingly as possible and attempted to pace appropriately. It felt like the business end of pregnancy came far too early!

I tried to really focus on eating nourishing food such as Bircher muesli, soups and salads. I also took a pregnancy multivitamin and probiotics to support my body.

The fatigue was reasonable (but difficult) given the battle that sleep had become. My body was heavily exhausted but I woke every one or two hours, sometimes more. Getting up was hard, but two year olds wake when they wake and you can’t ignore those loud “mama, mama” calls!

My tiny passenger seemed to make use of his growing space, simultaneously kicking and punching high and low. He always let me know he was there, growing nicely, getting ready to come.

The short Gestational diabetes test was not as awful with better planning this time. I ate a proper breakfast and took reading materials. Though the sugary drink made me feel dehydrated all afternoon!

Unfortunately the results were not good, so I had to do the glucose tolerance test…I had to fast for 10 hours and go to the lab at 8am (with no breakfast or coffee!), have a blood test, drink the same sugar drink, sit for two hours and have another blood test. I was quite unwell with it and so had to lie on the bed in fetal position to stop from vomiting, but I made it! I was pretty wiped afterwards and so hard a very quiet afternoon.

I was super pleased to find the results were “perfectly normal”!

At 28 weeks I crossed into the third trimester. With midday naps, pacing, good food, good supplements and regular physio I felt like I was coping quite well despite the battle that the nights brought (including dead arms every hour). The low back and hips were not so bad when I didn’t overdo it, the upper back was not so forgiving and I did get some regular spasming which wasn’t fun. Lying down with the heatpack, taking Panadiene and meditation helped.

By week 29 I was focused on organising the last of baby’s things so that I could rest more later, reading up on labour and enjoying my last weeks with Nu as an only child. This child brings me such joy and I really revel in the fact that he’s super rough and tumble but always has a kiss and a cuddle for his mama.

I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24 here and look out for the rest soon!