Melissa vs Fibromyalgia: As Close to a Roadmap as I can Give You

Melissa vs Fibromyalgia book coverMy book Melissa vs Fibromyalgia: My journey Fighting Chronic Pain, Chronic Fatigue and Insomnia is available for preorder on Amazon now! It’s release date is 29 January 2018.

This is what I wish the doctor had pressed into my hands when I was given, at last, a reason (or as close as I can get) for the pain, fatigue and insomnia I had been fighting for nearly 10 years already.

Who wouldn’t want a road map that lays out the specific steps to take to reduce pain, increase energy and generally limit the misery of not knowing?

I can’t provide a finely detailed road map tailored to you, but I have done the next best thing – I wrote up my experience combined with the research.

What’s in it?

I share the key things that help me and what the research says about these things so that you have somewhere to start. I have gone through many books, articles and pieces of research. I’ve done numerous experiments on myself – from figuring out my ideal walk length to trying low dose naltrexone

Nothing I’ve tried has severe side effects. I do share my experience with amitriptyline, an older tricyclic antidepressant that can help with sedation (to fall asleep), pain and headaches. This has several potential side effects, mostly mitigated for me by the low dosage, that means the cost/benefit ratio doesn’t work for many. The chances of it working, of the effects not wearing off and potential side effects make it a tricky option. I’ve always said I am lucky that the locum GP – who I saw once, saw my history of insomnia and put me on it – gave it to me prior to my being able to research, because I’d probably not have tried it.

Other than the low dose naltrexone and amitriptyline, the things I do are generally low in the side effect profile and self-controlled.

Self-efficacy is vital in managing this illness. Every day we have to do the work. We can’t hand this off and expect to be well.

Free Bonus

As a special free bonus for those who purchase my book before 11 February 2018, you will get FREE access to my new eCourse You vs Fibromyalgia: Arm Yourself with Knowledge. This has five lessons and goes through what Fibromyalgia is, my six tips, the quick list of the nine things that work for me, why I consider sleep as king and a sneak peak at pregnancy, nursing and parenting with Fibromyalgia (this is the subject of it’s own full eCourse).

How to access it

Email hello @ melissavsfibromyalgia . com with the proof of purchase (a screenshot of of your Amazon orders page with Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia in there) and I will respond with the password and link to the course. The course will be released the day the book is.

Are you ready to get started on the next phase of your fight against fibromyalgia?

Top Posts of 2017: What You Were Looking For

I haven’t done this before, but it’s excessively interesting! Here are the seven most popular posts from 2017.

What Works-

The most popular post of 2017 was What Works: A Round Up. I shared my seven top tips for living well with Fibromyalgia and seven fibro bloggers shared some tips of what works for them.

They talk symptom relief, diet, rest and daily rituals to manage Fibromyalgia.


Pregnancy and Fibro

The second most popular post was the one where I announced my book Fibro Mama Pregnancy and Fibromyalgia. It was such a dream come true to write and publish a book and to share this hard earned knowledge.

 


Low Dose Naltrexone (LDN)The third was where I shared my research and experience with low dose naltrexone (LDN). It has been such a ride since starting LDN last April. I could never have published my Fibro Mama book or written my Melissa vs Fibromyalgia book (out January 29th). LDN isn’t a stand alone treatment, but it has helped me so much.

 

 


fibro friendly links

I’m a big fan of yoga. I use it in all its forms to manage the symptoms of Fibromyalgia. In this post I shared My Pain/Fatigue Friendly Yoga Links from bed yoga for spoonies, to yoga for neck pain and full sun salutations.

 

 

 

 


A Tricky Parenting SecretI shared A Tricky Parenting Secret after I’d been despairing about how to help my kids have a nice time despite pain and fatigue. It really doesn’t take as much as you’d think.

 

 

 

 


A Confession on Pacing and Boundaries was also popular, it’s a really tricky balance when you have children. It sometimes feels like the biggest battle isn’t to define your boundaries, but to protect them.


I wrote my Pregnancy Diaries when I was pregnant in 2016, last year I edited and posted fibro mama weeks 31-33them. Fibro Mama Pregnancy Diaries: Weeks 31-33 was rather popular. Looking back, this was the calm before the storm.


So these were my seven most popular posts of 2017. I’d love to hear the topics you have enjoyed the most and would like me to write more about in 2018.

If you like my posts then please feel free to sign up to my newsletter. You’ll also receive my free Microcourse – Arm Yourself with Knowledge (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 Interviews: Brandi from Being Fibro Mom

As we well know, our experience of Fibromyalgia differs greatly. In order to shed some fibro mama interviewslight on how other Fibro parents do it, I am starting a series called Fibro Mama Interviews: Following the Journey. Our first interview is with Brandi from Being Fibro Mom!

Please give a brief introduction to yourself

I’m Brandi, the writer and creator of Being Fibro Mom and My Fibro Journal. Being Fibro Mom was created in 2013 with the intent of helping fibromyalgia sufferers become fibromyalgia thrivers and advocating for parents enduring the hardships of fibromyalgia. I also host a live show each Friday called Fibro Live in which I discuss the latest fibromyalgia topics, news, research, and more.

In addition, I am a regular writer for the international magazine, The Fibromyalgia Magazine. My column is candid and as real as it gets when writing about the perils of fibromyalgia as both a fibromyalgia thriver and fibro parent.

As a fibromyalgia advocate, I am the Secretary and Fibro & Families program director for the non-profit organization, International Support Fibromyalgia Network.

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What are your diagnoses?

I was diagnosed with fibromyalgia, generalized anxiety, and depression.

How many children do you have, what are their ages?

I have four children – 11, 10, 8, and 6.

Were you diagnosed when you were pregnant?

Sadly, no. I went through all four of my pregnancies not knowing I had fibromyalgia. The symptoms were worse during those times of pregnancy, but I attributed it to being pregnant. Had I known I was living with fibromyalgia, I could have taken steps to ease my pregnancies.

Knowing what you know now, what advice would you give to parents with chronic illness who are, or want to get pregnant?

Keep an open line of communication between yourself and physician, spouse, loved ones, and friends. Establish a solid support system and do not hesitate to say no to any tasks that will cause overexertion. And just as important, learn to ask for help.

And what is your favourite blog/book/social media about pregnancy, nursing or parenting with a chronic illness? (What resources would you recommend to support parents with chronic illness)

Shelley writes at Chronic Mom about living with fibromyalgia and lyme disease. Her sarcastic humor and straightforward ways with fibromyalgia are articles you don’t want to miss!

I would recommend joining a support group either online or in person. Talking to others that understand the struggle will be a better help than to those that have not experienced it. In 2016, I created a closed Facebook group, Fibro Parenting. The group is focused on any parent or guardian looking for support while parenting with fibromyalgia. Fibro parenting is a creative form of parenting, and is easier with the support and encouragement from fellow fibro parents.

 


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.

Introducing my eCourse, Free MicroCourse and My Book – It’s All Happening

I have been hard at work this month, I have only weeks left to write all of the things I want finished before I head back to part-time work, always a tiring proposition when you have two kids and chronic pain and fatigue.

One of the things I’ve been working on is my eCourse Fibromyalgia and Pregnancy which will feature four modules and gives you the tools to plan for pregnancy, nursing and early parenting with chronic pain and fatigue.

MicroCourse Pregnancy&Fibromyalgia

As an off shoot of that I have made a FREE micro course – Pregnancy and Fibromyalgia Micro Course: Arm Yourself with Knowledge which will take you through pregnancy with Fibromyalgia information, nursing with Fibromyalgia and parenting with Fibromyalgia. This is an introduction to the first module of the full eCourse.

Click here to receive the four lessons of the free micro course direct to your inbox.

Never one to do things by halves, my book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia is back from proofreading and will be available on Amazon at the end of January. I am so excited about this as I really want to share what I have done to fight Fibromyalgia in order to help others put together their own lifestyle to live well in spite of the chronic pain and fatigue.

Please feel free to head over to my Facebook group Pregnancy and Fibromyalgia to join the conversation. This group is for talking through pregnancy, nursing and parenting with Fibromyalgia.

As always, my blog (170 posts and counting) is here with everything I’ve written over the past four years documenting this crazy ride.

Feel free to drop me a line to say hello, give me a suggestion to write about or give me any feedback, just use the form on the Contact page.

2017 – Melissa vs Fibromyalgia in Review

What a year! My second baby has been in this first year, learning to roll, crawl and, now, trying to walk. My first has been in this third year, learning and growing so fast.

I’m in a period of healing, that phase where you feel like things could get better. The low dose naltrexone (LDN) seems to be helping with stamina, pain and fatigue. I’m not sure how far it will go, but I am grateful for a renewed sense of hope.

Despite extended sleep deprivation due to the baby with reflux, I have coped excessively well. I’ve also had a separate health issue that drained on me for more than two months and I managed to cope and keep going forward despite it.

New Medicine

I began low dose naltrexone in April. After nine months and many dose varieties, I am holding at 4mg with improved stamina, slightly reduced fatigue and a slight difference in pain levels. I look forward to further improvements.

Supplements

MSM supplement has been a useful addition to my arsenal. It is supposed to help with muscle, tendon and ligament pain in addition to healing the gut.

Magnesium oil right before bed around my neck and shoulders. I’ve taken magnesium for a long time, and it’s nice to not have to take it in tablet form.

Moringa powder provides 18/20 amino acids in addition to being a good source of iron and other nutrients. I am not very good at remembering to take it as it’s best taken with juice or in a smoothie – I dislike juice and I usually share smoothies within my three year old.

Exercise

After dealing with symphisis pubis disorder for several months after having Wyatt last December, I am pleased to be walking 20-30 minutes a few times a week (it’s a time thing with two small children, I’d love to do it more). I’m also back to my sun salutation sequence whenever I can.

Work

I’m looking at going back to work and am trying to find something that won’t demand too many hours, too much energy. I am looking forward to it.

A life goal
I accomplished a life goal when I published my book Fibro Mama: Pregnancy and Fibromyalgia. Since I was a young teenager, I have loved writing. When I wrote my life goal list up in my early twenties (doesn’t everyone do this, write it up physically?), publishing a book was on there. As I researched and shared my journey with pregnancy for the past four years, my mission became to help even one person not feel so alone in this vulnerable time. Now that I’ve felt some concrete results of the past several of real work on my health – I’ve compiled a large list of things I do to manage my illness, and I will be writing about this in a book due out early next year, Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue & Insomnia 

 

It’s very exciting, I’m so glad to be able to share this journey with you.

I hope you have a restful and lovely Christmas holiday period and a happy New Year.

To stay up to date and receive access to my free resource page – sign up here.

 

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.

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).

 

 

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.