You vs Fibromyalgia eCourse my research your plans to fight chronic pain chronic fatigue and insomnia

You vs Fibromyalgia Equipping You to Fight

I am super excited to announce that I am running You vs Fibromyalgia: Helping You Fight Chronic Pain, Chronic Fatigue and Insomnia full eCourse!

 

You vs Fibromyalgia eCourse my research your plans to fight chronic pain chronic fatigue and insomnia

While my micro course You vs Fibromyalgia: Arm Yourself with Knowledge is a free introduction to some of the modules in the full course, it isn’t exhaustive. This course has a lot more information, so if you’re ready to dive in for more and create your own pain management plans, trial some sleep tips, learn about low dose naltrexone for fibromyalgia and more – then come and join us!

If you learn only one thing from anything I ever write, I hope it is that you can impact your quality of life. I have made a huge difference to my quality of life through research and personal trial and error. But it took a lot of time. I want to save you that time.

See below for my brief introduction video about You vs Fibromyalgia

I have just enough time to run this course before baby comes in November, so it won’t be offered again until next year.

The stats of the course aka what you get

  • Seven modules with
  • Short video lessons
  • Templates to make your own pain management plans, a sleep diary, a list for keeping track of the things you’d like to try and a form for working out how you could create some space and make the most of your life despite fibromyalgia
    information sheets
  • The workbook – with all of the lessons, information sheets, templates, heaps of extra reading with space for notes!

Between this course and my book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia (affiliate link) and my free resources pages – I am content that I have shared everything I can to help you not suffer as long as I had to. Obviously I am not a doctor and there are often more issues than just the fibromyalgia at play. A doctor and medicine definitely have their place in treatment, but I want to also share all of the things you can do yourself – today – to fight the fibromyalgia.

Yes, I am just as ecstatic to join the journey!

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The Pain Companion book review by Melissa vs Fibromyalgia

The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain by Sarah Anne Shockley

Recently I was lucky enough to be given a chance to read and review Sarah Anne Shockley’s book The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain.

I was given a copy of this book in exchange for my honest review.

Please note that some of my links may be affiliate links, if you make a purchase using one of these links I may make a small commission at no extra cost to you.

Synopsis of The Pain Companion

The Pain Companion cover image

In the twenty-first century, one might wish that pain were an easily treatable nonissue. It is not. Millions of doctor and emergency room visits stem from pain, and addiction to pain medications, rampant in the United States, often takes root in an attempt to manage unremitting discomfort. 

In The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain (New World Library, June 12, 2018), author Sarah Anne Shockley, who has personally lived with chronic pain since 2007, offers fellow pain sufferers a compassionate and supportive guide for living with pain that can be used alongside their ongoing medical or therapeutic healing programs

“I cannot know your personal suffering, of course; only you can,” writes Sarah. “But I do understand the experience of being in significant and relentless pain for long periods of time, and I understand the fear, sadness, and frustration associated with long-term physical debilitation. So I can say that this book has been written from inside of pain, a perspective on the experience and the healing of pain that we are seldom offered.”

Further reading you might like:

For more about meditation and Fibromyalgia see my post about it here.

My Review of The Pain Companion

In this sensitive, beautiful book Sarah Anne Shockley explores what it means to live with chronic pain and how she manages it using meditative approaches.

The book is divided into parts: The pain moves in, the emotional life of chronic pain, meditative approaches to physical pain and when pain is a teacher.

Shockley defines chronic pain early in the book: “Chronic pain is a very complex condition involving much more than just the physical symptoms of the body. It includes emotional and psychological aspects as well, due to the incredible stresses of living with pain on a daily basis, and the ramifications of basically losing one’s life to pain.” P18

The Pain Companion book review by Melissa vs FibromyalgiaAnd she hits the nail on the head. The emotional and psychological aspects are just as important to address as the physiological ones.

Shockley explains how she came to understand this and how it ultimately helped her cope with the pain: “This practice of extending understanding and compassion to myself was more than just a psychological wellness exercise. It was a crucial interior movement that created space for real healing and unexpectedly began to relieve my physical pain as well.” P22

In part three Shockley talks of meditative approaches and not fighting the body and the pain so hard (extending understanding and compassion to herself and the pain). She explains how she began to listen to the pain, to see what it was trying to tell her. And in doing so she reduced the intensity.

We need to ask ourselves: What is this pain trying to tell us? What is its origin?

We are given 12 meditative exercises to work through starting with the breath. Now I have been a meditator for several years now but I still find visualisation and the idea of talking to my pain difficult. However, there are many exercises here that are excellent gateway approaches, especially the noticing the breath and learning to relax this way.

Usually I devour books, but this one I savoured. I read it in sections and really absorbed what she was saying. This is not a guidepost for curing chronic pain, or even how to overcome it, but more about how one woman managed to coexist with it in a way that ultimately reduced her suffering.

If you want to see an interview with the author about this book, see here.

You can get your copy of The Pain Companion here.


For more information:

Come and join my free You vs Fibromyalgia micro course.

pain relief in pregnancy with fibromyalgia

Pain Relief in Pregnancy with Fibromyalgia

Pain relief is a big issue for those who live with chronic pain. It becomes an even bigger issue during pregnancy. For those of us whose symptoms worsen during pregnancy, it’s a minefield.

Author’s Note: This article appeared first on The Mighty

pain relief in pregnancy with fibromyalgia

My fifth tip for pregnancy with Fibromyalgia is to get a pain management plan in place – preferably prior to becoming pregnant.

There are some medicines that are categorically unsafe for pregnancy. There are a lot of medicines that they just don’t know enough about, performing experiments on pregnant women, particularly involving something that may harm a baby, would be unethical. So literature relies on data provided by pregnant women. This website Mother to Baby  provides fact sheets, access to professionals about medicine in pregnancy and more.

The first thing to do when considering pregnancy with a chronic pain-based illness would be to discuss plans for pregnancy with your doctor. With my first pregnancy, we didn’t talk to the doctor before conceiving, and then when we were discussing the only medicine I was on (amitriptyline) I nearly had a panic attack at the thought of going off it. My doctor called a specialist and they agreed that the benefits outweighed the potential risks – for me and my unique situation.

Sleep is a big battle for me, I enact a long list of sleep hygiene tactics every day; take a low dose of amitriptyline at 8pm, take a low dose of naltrexone (I only started this after I had my second baby, prior to this I would take pain medicine at this time) at 9pm, get into bed with my heat pack, do a body scan meditation, and if I’m lucky, fall asleep for a few hours at a time. A good night sees me fall asleep relatively quickly and only lose an hour to awake or restless times. It would appear that the second the pregnancy hormones enter my body, sleep runs away screaming. Pain also becomes a much bigger issue when I have to lie on my side (as you must once baby gets big enough to put pressure on an important vein when lying on your back).

More articles about pregnancy with Fibromyalgia

Pregnancy with Fibromyalgia The First Trimester Diaries
Necessary Baby Items for a Fibro Parent
Fibro Mama Pregnancy Diaries: The Delivery
Pumping or Expressing for Your Baby: Parenting (Fibromyalgia or Not)

You do not have to be miserable, there’s also research that suggests that under treated pregnancy and fibromyalgia def ed anglepain can negatively affect the pregnancy.[1] So if your doctor refuses to help you with pain relief, get a second opinion. Do some research for yourself and present it to them. I provide what I did during pregnancy to be as well as possible in my book Pregnancy and Fibromyalgia.

Here are a few natural pain relief mechanisms that I enacted during my pregnancies:

·         Heat pack
·         Warm shower or bath
·         Essential oils such as lavender and peppermint (for external use only and with a carrier oil after the first trimester) – see my Resources page for my free report about Essential Oils for managing pain
·         Magnesium oil (I never got a calf cramp in my second pregnancy using this)
·         Gentle walks and stretching
·         Meditation – especially ones specifically for pain relief on pregnancy, there’s heaps on YouTube to search up
·         Massage – either for yourself, or from a partner, friend, or therapist
·         Rest and sleep as much as you can
·         Belly support belt – I had symphysis pubis disorder (my pelvis basically widened too far) and this really helped.

If you want to learn even more information about pain relief during pregnancy, then Pain Managementmicro coursecheck out my 15-page printable PDF Pregnancy with Fibromyalgia Micro Course Workbook. It goes through the existing information about pain relief during pregnancy, my experiences, a list of natural pain relief options, a list of further reading, a template to make your own pain relief plan (pregnancy edition) with space for notes and the brand new Advanced Pain Relief sheet with links to research about medicine use in pregnancy. I have gathered the information and created these printables to make it easier for you to make the best decisions for yourself- it took me years to get it all together.

I always recommend remembering that pregnancy is finite, there is an end date and a beautiful baby as the pay off. I also was a bit smug in my second pregnancy because I knew that I am one of those very rare women who actually sleep better with a newborn baby than pregnant, the pain levels are just so high that sleep is almost non-existent in the final trimester. Last year, once I delivered my second baby, my bed that had previously felt as hard as a rock seemed luxuriously soft. So in those one, two or three hours that the baby was asleep – I slept like the dead, which is a very rare occurrence for me.

I really hope that this post helps you on your way to relieving some of the pain involved in pregnancy with a chronic illness.
[1] Malaika Babb, PharmD, Gideon Koren, MD FRCPC FACMT, and Adrienne Einarson, RN. Treating pain during pregnancy. Can Fam Physician. 2010 Jan; 56(1): 25, 27. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2809170/


For more information about pregnancy and Fibromyalgia:

This article is also available as a free PDF printable in my free Resources page.

Pregnancy andFibromyalgia_resources

 

 

6 Books for those with Chronic Illness and a Giveaway!

Are you ready to spring clean your healthy habits in 2018?

We’ve compiled a list of books perfect for people living with chronic illness who want to make impactful changes to their health and life.

6 Books about Chronic Illness and a Giveaway!

Enter to WIN 6 BOOKS!

If you would like a chance to win all of these books, then head on over to the giveaway page!

The books are:

Affiliate notice: Please note that some of my links are affiliate links. If you make a purchase, I may make a commission at no extra cost to you.

yoga for chronic pain coverYoga for Chronic Pain: 7 Steps to Aid Recovery From Fibromyalgia Through Yoga by: Kayla Kurin – In this book Kayla tells us how she utilises the benefits of yoga for chronic pain. See my review here!

Thriving in the Workplace with Autoimmune Disease: Know Your Rights, Resolve Conflict, and Reduce Stress by: Holly Bertone – “This is the first book ever to educate individuals specifically with autoimmune disease on their legal and disability rights in the workplace.”

Melissa vs. Fibromyalgia: My Journey Fighting Chronic Pain, CMelissa vs Fibromyalgia book coverhronic Fatigue, and Insomnia by: Melissa Reynolds – This is my book! This is where I share everything I have researched, learnt and do to fight Fibromyalgia.

Radical Health: Insightful, Humorous, Compelling by: James Lilley – “This book will help you get from simply surviving to thriving in easy to understand steps.”

The Complete Guide to Crohn’s Disease and Ulcerative Colitis: A Road Map to Long-Term Healing by: Alexa Fredrico – “There is no clearly defined path that newly diagnosed people should follow and therein lies the author’s motivation for this book.” Alexa is another chronic illness blogger who found a disappointing lack of whole-person health-focused information for her illness and so created it!


If you love reading you can try Amazon Kindle Unlimited! Just sign up here Kindle Unlimited Membership Plans. Amazon Kindle Unlimited gives you unlimited reading (say what?), unlimited listening to their audiobooks.


The Easy Anti-Inflammatory Diet: Fast and Simple Recipes for the 15 Best Anti-Inflammatory Foods (HARDCOPY) by: Karen Frazier – “Chronic inflammation has been linked to just about every health concern out there, and research indicates that certain foods are the root cause. But with the plethora of information available on the Internet, it can be difficult to know exactly which foods an anti inflammatory diet consists of—and moreover, how to easily incorporate it into your daily life.”

If you would like a chance to win all of these books, then head on over to the giveaway page!

Sharing is caring, please feel free to share this post so that your friends can have a chance to enter too!


For more information

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To purchase your own copy of my book

Melissa vs Fibromyalgia book cover

necessary baby items for a parent with Fibromyalgia

Necessary Baby Items for a Fibro Parent

There are a multitude of nursery items and almost as many articles about which ones are necessary. Here’s my recommendations for a fibro parent, or really, any parent!

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.

necessary baby items whether you have fibromyalgia or not

Below are some the items I found indispensable for a mama with Fibromyalgia:

My boy in his bouncy when he was teeny tiny

My boy in his bouncy when he was teeny tiny

  • Cot. With an easy to put up and down side, or an opening in the front.
  • Bassinet. We tried a different option with each baby. Both were easy to move and that was very helpful. I wished for a beside bassinet with fold down side so I didn’t have to get in and out of bed so much and to make co-sleeping a safe option. This 3-in-1 is a great idea, it is a bedside crib and a pack and play.
  • Changing table. We weren’t going to buy one, I had thought that I could get by without one. But, being given one has been a lifesaver. I have everything I need to change them on the shelf and can lay them down at the right height for changing. You could even use a set of drawers that are the right height with a change mat on the top and the top drawer full of your supplies.
  • A rocking chair. My husband and I clashed about this one. He didn’t think it was necessary. I believed with all my heart that it was. I ended up getting a second hand one and it has been so useful. For nursing, expressing or just rocking when you’re too tired to stand, it was worth it. Nursing for a mama with Fibromyalgia can be tricky, so a comfortable place to nurse is a good idea – check out my post on nursing with Fibromyalgia here.

Other parenting posts:
Pumping or Expressing for Your Baby: Parenting (Fibromyalgia or Not)

Pregnancy Diaries 2018: The First Trimester of Pregnancy with Fibromyalgia
Coping with a Toddler (Fibro or not!)
Fibro Mama Interviews: Natalie from Surviving Lifes Hurdles

IMG_5471

Out and about with our City Mini

  • Infant capsule seat with folding pushchair frame. We didn’t get one before Noah was born because I thought it would be too heavy for me to lift. I was right, very quickly it became a real burden to carry. However, with the frame and the fact that Noah was not a good napper, it turned out to be invaluable. At some stage early on I noticed that he was tired by about 9 in the morning, but struggled to get to sleep. So we began leaving the house (rain or shine) either via the car or walking. He learned to nap this way. The seat and frame meant that I could seamlessly move from car to shops to car to home easily.
  • A Boppy pillow/feeding pillow. I loved this, it was so useful for nursing and to let the boppy feeding pillowbaby’s lie down and watch the world go by. It was a real lifesaver when the boys were small to sit them on it and let them watch me potter around the living area. It was also great for Wyatt with his reflux, he took some of his naps on it. We always used it with supervision because there is a chance of baby slipping down and cutting their airway off by pushing their chin forward.
  • A front pack. This is a difficult one. On the one hand, you are going to hold the weight anyway, so why not distribute it more evenly. On the other, from about six months my little guys became too heavy for my shoulders to bear for too long. I would like a sling for the first few months if I do it again.

I loved the Gemini Beco – it goes from 7 pounds/3kg, which both of my babies started off at!

  • A bath seat. This has meant that I don’t have to hold their weight while they were in the bath and it’s far more easy to wash them.
IMG_20140905_165421

Noah enjoying his bathseat

  • Jolly Jumper. We used this once his neck was strong, at about four months. This was lovely for me when he was super fussy and I was super tired. It gave me ten minutes of time out from holding him.
  • Portacot. We didn’t get one until Noah was eight months old as we thought it was unnecessary once he outgrew the bassinet stage. We were wrong. It has been invaluable. The portacot means that my boys could sleep at either grandparents house, so we don’t have a to squish a visit in between naps or push out naps. This one is lightweight and easy for travel, I like Phil and Ted’s brand but the prices in New Zealand are prohibitive. This one is actually similar price to what we paid for a very basic one.
  • One thing they can use to pull themselves up with. When he started to develop the ability to pull himself up, we got a table type toy where he can stand and play. This is a useful thing to let them stand without you holding them.

We got one similar to this. Again, this lasted for both of our boys.

  • Baby seat. This was something I wanted but didn’t purchase until he was already baby bumbo seatsitting on his own. It would have been useful before this as he loved to sit and see so it could have bought me more non holding time. Now we use it, strapped to a chair as his highchair. We can also take it when we go away. He will be able to use this until he’s tall enough to sit on a chair at the table, without the space a highchair takes.

We used a seat very much like this. We bought it for Noah and now use it for Wyatt when we are out.

  • Bouncinette/Electronic Rocker. This was one of those things that buys you some non holding time that you so desperately need when they’re clingy or your sore or you need to get stuff done.
  • Breast pump. This was a lifesaver for me with nursing my children. I had to exclusively express for my first and then expressed a fair amount for my second. For my third, I have chosen the Avent breast pump in the above link because I will only express once or twice a day – with three children four years old and under, I won’t have the ability or energy to express more. Our favourite bottles were Avent too – because the teats were shaped more like breasts and therefore helped us to avoid nipple confusion.
IMG_20140716_130256

Noah in his electronic rocker

Did you know that Amazon has a baby registry? You can sign up here Shop Amazon – Create an Amazon Baby Registry It’s basically a mobile registry (available anywhere!)and you will be eligible for discounts and rewards. If you’re going to purchase some of your items from Amazon, you may as well sign up.

Is there anything else to add? Was there one awesome thing you would not do without?


For more information about pregnancy and Fibromyalgia:

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Pregnancy andFibromyalgia_resources

definitive edition pregnancy and fibro

My book is everything I have researched and learnt over two pregnancies.

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

Living the Best Life with Fibromyalgia: A Book Review

At this point, I’ve read a lot of the research and books by doctors with Fibromyalgia, what really perks my ears up is a book written by a fellow fibro fighter.

Alisha Nurse interviewed me for her Overcomers series recently and I began reading her book Living the Best Life with Fibromyalgia. She gave me a free copy in exchange for an honest review.

Affiliate notice: Please note some of my links are affiliate links, if you make a purchase, I may make a small commission. 

It has a pretty and inspiring cover:

living your best life.PNG

Image from GoodReads

In the introduction, Nurse shares how she was diagnosed – after years and years of being fobbed off by doctors (sounds familiar).

The chapters are broken into: Challenges, Diet, Recipes, Medication and Supplements, Lifestyle, Meaningful Living with a summary at the end.

In challenges Nurse presents some of the key issues we face.
The symptoms

“Each of us battles our demon symptom, the one symptom that is king above all else. For me, that’s the chronic exhaustion. But my GP says there is nothing she can recommend for me except exercise.”

I can relate to this, my demon symptom is my neck and doctors have been generally unhelpful.

Other challenges include: the people who disbelieve us. The impact of stress. The invisibility of our illness.

In Diet, Nurse outlines how she (step by step) implemented dietary changes. She provides a list of healthy foods.

The recipe section includes some nourishing teas to try and some delicious, nutritious foods.

In the medicines and supplements chapter she discussed an important point around medicines:

“When I consider how fibromyalgia steals our dreams and lives, I staunchly decided that I would have some quality of life on medication than have a longer life in a worse off position.”

I want to thank Alisha for this piece of honesty with which I wholeheartedly concur.

In Lifestyle, Nurse lists some good, practical tips for living well with fibromyalgia. Including eating well, Epsom salt baths, exercise, pacing, managing stress.

Meaningful Living – help others, have empathy and faith.

“Have faith, believe and work without ceasing.”

In this compact handbook, Nurse provides you with some of the things that have helped her. Hopefully you can find something here to help you on your journey.

Find her book here.
Find her website here.

If you love reading, like me, you can try Amazon Kindle Unlimited! Just sign up here Kindle Unlimited Membership Plans. Amazon Kindle Unlimited gives you unlimited reading (say what?), unlimited listening to their audiobooks


For more information:

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Find my book, which is everything I know and do to fight Fibromyalgia:

Melissa vs Fibromyalgia book cover

 

You vs Fibromyalgia: Helping You Fight Chronic Pain, Chronic Fatigue & Insomnia

I got a bit excited about sharing my knowledge and went ahead and began planning a full eCourse –
You vs Fibromyalgia: Helping You Fight Chronic Pain, Chronic Fatigue and Insomnia.

You vs Fibro full ecourse

It is for anyone wanting to fight chronic pain, chronic fatigue and insomnia. Most of my recommendations are self-actionable – you make choices every single day that effect your quality of life, so you have the most power to live well with Fibromyalgia.

It will have seven modules:

  1. Knowledge (knowledge is power)
  2. Pain management
  3. Sleep
  4. Meditation
  5. Yoga (or gentle exercise)
  6. Pacing and Boundaries
  7. Brain Fog

What you get:

  • Five modules
  • Four (or more) videos
  • Four templates to make your own plans for pain management, sleep and things to try
  • Four (or more) information sheets – including my list of further reading – this is from my spreadsheet of articles, research and information about Fibromyalgia/Chronic Pain/Chronic Fatigue and Insomnia over the past five years broken down by subject!
  • A lot of further reading for you to follow up areas that interest you and take your learning further
  • The workbook with all of the lessons, information sheets and templates with space for notes.

A course is a lot of work – there is a lot of information here, so I will run this course from 1 April 2018 if 10 people enroll before March 15th.

As a special offer, I will give early bird enrollments at $69 (value $125!) PLUS all early bird enrollments will receive the free bonus lesson Support.

You vs Fibro full ecourse

Learn more and enroll here (you can also see a free preview of the first lesson)

I hope you will join us in this journey.

 


If you’re not ready for a full eCourse, what else can you do?

you v fibro e courseTry my free micro course You vs Fibromyalgia: Arm Yourself with Knowledge this is an introduction to the information available in five lessons.

 

 

sign up to newsletterSign up to my free resources page which has free PDF printable reports, templates, micro courses and more.

 

What I’d Start with upon Diagnosis with Fibromyalgia (If I got a Do-Over)

Getting diagnosed with Fibromyalgia and living with the effects of chronic pain, fatigue and insomnia is difficult. This is why I decided to write my journey and everything I do to cope with the symptoms of Fibromyalgia and myofascial pain syndrome in my book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Fatigue and Insomnia.

Author’s Note: This article appeared first on The Mighty.

What I'd start with upon diagnosis

Here’s an excerpt from my book about what I’d do upon diagnosis, if I had a do-over.

When you are first diagnosed with a chronic illness such as Fibromyalgia or Chronic Fatigue Syndrome, your brain has rather a lot to process. If you’re buried too deep in pain and fatigue, the enormity of the challenge may not hit you immediately.

You, like me, may have been diagnosed after a long battle in which you have learnt to push through and assimilate the challenges into your life. Potentially making yourself even worse. Or you may have been struck down, as if by a lightning bolt of pain and fatigue.

Here are a few key things that we need to do when we’re diagnosed, or ready to process:

Research

You are your advocate, medical coordinator, cheerleader and guru. You need to guide your doctor. You need to track your progress. Get a book, or open a digital file and write it up. Keep articles that you come across. Because when you’re ready you need to experiment. Your doctor can only take you so far, if they want to come on this journey with you at all.

My course You vs Fibromyalgia: Arm Yourself with Knowledge is a good start. This is a FREE five lesson eCourse to help you fight Fibromyalgia. Sign up here. This is what I wish had existed when I was diagnosed.

Experiment

There are many types of treatments: medicines, supplements, alternative options, physical therapies and diets. We all have different chemical make ups, different genetics, and different triggers. This means we need to find our lifestyle that gets us as pain free and awake as possible. The complexity of this is huge, especially when you take in the fact that synergies, mixtures of multiple things, may be the solution. Your body may need a mixture of medicines, supplements, physical work and mental work.

Hit Your Lifestyle

You can’t keep going in the same way. That way didn’t work. Try to journal it out or talk it out, or whatever you do to think things through. You need to rebuild your lifestyle. Find what works for you, what your passions are (the non-negotiables of your life) and go from there. I spent a long time dreaming of working slightly less hours so that I could rest more and try to recover – and reducing my work hours was only the beginning of my journey to better wellness.

Find Your People

If there’s no one in real life, find a virtual community. You need to be exposed to new ideas and you need to be able to ask questions. There are many people struggling along with chronic illnesses sharing their journey. Just try to keep it positive. Most people would have brushes with depression/sadness when they’re in daily pain and exhaustion. Having a search through the articles written by other people with chronic illness on places like The Mighty is a good start.


For more information:

This post is available as a PDF printable in my free Resources page.

Free eCourse sign up you vs fibromyalgia

 

Running on Empty

I’ve been running on empty since my pregnancy with Nu.

Thinking that I was fighting Fibromyalgia, I actually engaged in a drawn out raid and burn on my body. Any leeway I made was immediately voided by my overreaching ways.

PhotoGrid_1459840537711

Tired… Just tired

There’s no denying it, a family with a mortgage in a big city can’t live on one income forever. So I rushed back to work, not realising how deep the deficit caused by pregnancy and the first year of parenthood was. I thought that “only 20 hours” was a fibro friendly compromise. And I have managed, but at a cost.

My neck has deteriorated to the point that it stops me from obtaining many whole sleep cycle most nights (90 minutes, necessary to reach the deeper sleep state and repair). We’re meant to have about four a night. No pain relief can mute the pain and it’s always tight and stiff.

So, at the conclusion of my work contract, I have chosen to take a break. There are many things I need to do, but I will hopefully have the freedom to rest as well.

Here are the self care practices I plan to engage in:

  • Rest and meditation
  • Pacing
  • Swimming and spa soaks
  • Good, whole food

I’m really hoping I get another appointment with the pain clinic and that they might have something, other than medicines that don’t work or have severe side effects, to help. If I can control my neck, I can sleep. If I could sleep, properly, regularly, the possibilities are endless!

what it's really like to live with fibromyalgia

What it’s Really Like to Live With Fibromyalgia

I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue). Usually my writing is very positive and I try to look at the bright side – what I can do, not what I can’t. Today I am going to share what it’s really like to live with Fibromyalgia, as someone who has lived with it for more than ten years.

what it's really like to live with fibromyalgia

The definition of Fibromyalgia, chronic widespread musculoskeletal pain, chronic fatigue and sleep disturbances, doesn’t convey the depth of the impact of this illness. In addition, the body is a whole – therefore one system acting up has effects on others, for example my tummy tends to get upset when I’m very sore.

Could a person imagine that they had one or two hours less sleep than their body needs, never sleep in a block of longer than one or two hours (that’s rarely completing a whole sleep cycle), spend some time awake (alone, in the middle of the night) in too much pain to sleep, need a medicine to help them get to sleep but still struggle to do so, and never wake feeling well or refreshed (whether they’d had four or nine hours sleep) EVERY DAY for ten years, they may understand my illness.

People who are just tired don’t get this level of exhaustion. This level of fatigue causes brain fog – loosing words, swapping words, memory problems and clumsiness.

I do everything possible to maximise sleep. It just doesn’t seem possible for me to sleep well.

In addition to the sleep problems and soul crushing fatigue that accompanies this, there is the pain. Chronic pain seems so tidy a term. What it means is that I have pain levels of 4-6/10 every day.

My neck takes the centre stage, interrupting sleep, being extremely stiff in the morning and generally tight and sore. When it gets worse it causes secondary symptoms – severe headaches, dizziness, nausea and vomiting. I have to see a physiotherapist every three weeks for neck tractions and acupuncture to keep it away from the worst end of the spectrum. Working at a computer, sitting still, and moving too much aggravate it.

My back is a close second, it often feels two moments away from spasm – like the back of the ribs are electrocuting it. When my lower back gets sore it radiates down into my glutes and upper legs. All down the spine are tight, angry muscles. I have to put a pillow under my legs in order to lie down.

There are more transient pains that come and go, such as my wrists and lower arms when I’m at work. My upper arms always feel bruisy, if I bang into a door frame (brain fog steals spacial awareness) it can hurt for ages, people grabbing my arm hurts far more than it should (hyperalgesia). Severe period pain for a week every month (dysmenorrhea). My knees have recently decided to join the party and have caused some problems – on some days the pain gets so bad that I can’t walk and walking is one of my daily pain management techniques.

Fibromyalgia also causes flare ups – a temporary exacerbation of one or more symptoms lasting from a day to several months. My entire pregnancy and my son’s first year were a giant flare up, all of my symptoms were wildly worse (pregnancy symptoms are like mild to moderate Fibromyalgia symptoms – so I had a double dose).

Sleep deprivation doesn’t help pain. There’s been studies on this – healthy subjects subjected to minor sleep deprivation develop Fibromyalgia symptoms. Luckily for them they could have a few good night’s sleep and recover. Severe sleep issues has been widely researched and is extremely detrimental to health .

Every day requires multiple pain management techniques. Including stretching, meditation, resting, pacing, walking, trade offs and judicious use of pain medicines. My pain specialist has recently made me see that by not controlling the pain as well as I can I am causing physiological damage – chronic pain changes the body – and I am leaving myself susceptible to more pain and fatigue. The neverending cycle of Fibromyalgia.

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Here’s the thing – I manage this illness well.

I, mostly, kick fibro’s butt. I work 20 hours per week, have a toddler, a hunky hubby and hobbies. I do a lot while in a lot of pain. There are people far worse off than me. There are people with milder symptoms than me. But for my level of symptoms I cope remarkably well. The pain specialist, my doctor and the rheumatologist are impressed with my progress. The pain clinic has nothing but medicines to offer me because I do everything else they suggest.

I wish, with all my heart, that I didn’t have these limitations. I fervently pray for healing. I feel more guilty than anyone could know about the effects of these limitations on my family.

So when I make a call to miss out on something, to go to bed or ask for help – I’m far past the point I can push through.

I have exhausted every avenue I have and know I can’t afford the consequences coming to me if I don’t rest. I’ve been doing this for ten years. I have lived it, researched it and constantly push myself. So all I ask of the people around me is to respect it when I say I can’t do something or that I need help. Trust that I am just trying to live well. It’s incredibly hard and I survive only by my faith in God and incredible willpower.


For more information:

melissa vs fibromyalgia book angled shadowed

My book is everything I do and have researched to fight Fibromyalgia