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.

A Confession on Pacing and Boundaries

May I confess something to you? I don’t always practice what I preach. I don’t always realise or acknowledge my boundaries, let alone fight for them. I let guilt eat at me and let it trick me into over committing.

I’ve had this growing sense that the amount of hours I was searching for as I seek employment now that my baby is nearing his first birthday were too much. After much internal struggle, I lowered the expectation in my head, knowing we need the extra money, but also that I would not be able to sustain it, my health and be a good mama.

For a long time, I prided myself on being a 60 on the CFS/Fibromyalgia Rating Scale, “Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms” despite pain levels more in line with a 50, “able to do 4-5 hours a day of work or similar activity at home. Daily rest required. Symptoms mostly moderate.” (My italics)

I pushed myself to 6-7 hours per day minimum and suffered moderate symptoms. I had missed the key as suggested in this article on understanding our situation: “What is the highest level of functioning I can sustain without intensifying my symptoms?”. If my pain is at a moderate level, then I should not be striving to work the hours of a person with more mild symptoms, especially given that I go home to two small children as opposed to being able to rest. You need to take into account your symptom level and  your situation.

I keep myself in the boom-bust pain-fatigue cycle. Well, me and my circumstances – I have two small children and we have a mortgage in the most expensive city in New Zealand. We cannot move as this is the only place my husband can do his job. Childcare is not a cheap commodity, nor would I want substandard care for them when I am at work.  As I move forward and go back to work now that I have had my second baby, I must learn to balance all of these demands. And that is going to be my life’s work – balancing life with the fight against the Fibromyalgia.

This year I have finally experienced a slight reduction in pain in my neck, this has enabled sleep to come easier. It’s been such a relief, I don’t want to give it up. But my work requires a lot of computer time, so that’s unavoidable. I can only hope that I can find the hours and position that will do the least damage.

But I will admit it is tough. It will always be a struggle, even if your people understood fully (which they likely don’t).

 

 

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: 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!

Fibro Mama Pregnancy Diaries: Weeks 21-24

weeks 21.24By week 21 my burgeoning bump had taken over! Forgetting my new size, I brushed against things and banged it a few times before learning (that can hurt!). At week 22, I wondered how I could possibly grow for 16-18 more weeks.

A nice, healthy, detoxifying, warming drink I fell in love with was warm lemon (juice of half), honey (1 tspn) and tumeric (1/4 tspn).

I started to think more about the birth. After a 20 hour posterior (baby facing the wrong way causing severe back pain) labour with Nu, I was really keen for a nicer birth story. The news that second labours tend to be shorter and that those who have had posterior labour previously don’t realise they’re in labour until fully established gave me some confidence! I was planning all I could to save my energy and to avoid the stress of the first few days that we had with Nu. The first was that my husband doesn’t leave me, if he had to go, I had to go too! The second was that I know the signs of back labour and if it occured again, I would ask for intervention sooner.

A steady low back ache developed again at week 21, disturbing sleep and making the day more painful. A heatpack, pelvic tilts and child’s pose were somewhat helpful.

The only thing that really helped was reducing my activity level, aiming for 8000 steps or less. I could manage this for most of the week, but on weekends it was more difficult. There’s always too much to do on a weekend and it’s always been difficult to keep up with my husband. Another hard lesson in pacing.

We named our wee boy and the sweetest sound is Nu saying his name and talking to baby through the bump.

At week 23 I felt like there was a lot going on physically. I was put on antibiotics for bacterial vaginosis. My low back and neck were troublesome, to say the least. And I began getting Braxton Hicks contractions. It was time to admit that I was quite pregnant! The countdown may have begun for the end.

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 here and look out for the rest soon!

Fibro Mama Pregnancy Diaries: Weeks 18-20

Pregnancy diaries weeks 18.20The time to give up sleeping on my back came too soon! The night became a rather long struggle of tossing from side to side and waking up to dead arms. My back, shoulders, neck and glutes all yelled at me all night, no matter how I arranged the pillows. Even my meditation/daily rest became difficult due to positioning.

It didn’t help that Nu began really testing the boundaries and took extra energy to manage. Though, he was still very excited about baby, from 18 weeks he talked often about the next scan when he would see the baby dance.

At week 19 Nu got a really bad cold and was clingy and not sleeping well, which was really difficult. My pain issues from sleeping on my side and Nu waking me in the night and very early several times, made coping very hard.

Not having to sit at my computer for several hours four days a week really helped my neck and back. The work I did do seemed to flare it up a bit faster due to the lack of sleep.

It wasn’t all bad news, due to baby being tucked in the back it took a while for movements to become more frequent and obvious (which is the best part of pregnancy, until they wedge a foot in your ribs) but when they came it was reassuring.

One thing my second pregnancy taught me, is that the times my body craves coffee are actually the times I need rest. Having a two year old means I can’t always indulge in a full lie down meditation, however I can sit with my heat pack for a time. It makes such a difference. I can go from miserably exhausted, barely keeping my eyes open, to relatively normal after 30-45 minutes of good meditation.

Plus a 10 minute lie down can make a difference – relax (I use a variety of pillows); Close your eyes and count (in 10, out 10, in 9, out 9 etc) until zero; slowly imagine each body part relaxing (right hand thumb, first finger, second finger etc); lie for as long as you can gently breathing.

I saw an obstetrician at week 19 to confirm that my midwife could keep managing my pregnancy with me. When discussing pain relief she said she’d need to refer me back to the pain clinic, when I expressed my feelings of disappointment with the most recent doctor I saw there, she said that I may get a different doctor. *Sigh* She also said that Fibromyalgia doesn’t affect pregnancy, or vice versa. This stunned me. Pregnancy reduces sleep and places stress on the immune system and body, and Fibromyalgia is worsened through reduced sleep and stress on the immune system and body. The entire body is connected. You can’t have something happen in one area (eg. The uterus) and not affect other areas (eg. The back, neck, shoulders, hips, glutes, sleep system and immune system). So I felt like it was just me and my research in a 20 week endurance event. But I was used to that!

We made sure that my husband and Nu could attend the 20 week anatomy scan – again the baby was very busy so it took some time to capture all the pictures. We waited with baited breath to be told it was a healthy baby boy! Nu took a few hours to warm to the idea that it was a boy. I talked myself into it over the next day. Husband was happy.

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 and 15-17 here and look out for the rest soon!