Tag: fibromyalgia

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Normal Human Needs to Help Manage Fibromyalgia -Fibromyalgia Framework Series Finale

I can’t believe it is the last part of the Fibromyalgia Framework Series! Normal human needs are an often overlooked component in our wellness journey.

In this series we have talked:

I hope that you have learnt heaps and have lots of things to try.

Today we are going to delve into normal human needs and a little deeper into how yoga helps me.

Fibromyalgia Framework Series Part Eight Managing Normal Human Needs to Help Fibromyalgia

NORMAL HUMAN NEEDS

I have held this belief for a long time, that we are human beings first and foremost, so there are some crucial keys to wellbeing that ought to be followed, whether we have a chronic illness or not. We cannot heal an illness such as fibromyalgia without having an overall healthy lifestyle. We cannot throw pills at this problem while not looking after our body. Our body is an interconnected being – what effects one area will effect another.

It is far beyond the scope of anything I can go over here, but I will I briefly outline some general lifestyle tips that will help us to live well, especially once we have begun to address the other parts of this series.

Address other health issues

For me this includes managing myofascial pain syndrome as it definitely contributes to the fibromyalgia and vice versa. For some this will be thyroid issues, other nutritional deficiencies, other conditions such as migraines etc.

Gentle exercise

Gentle exercise is very useful in helping our body to move and loosen up. Every human being is recommended to exercise for wellbeing. I will go into this in more detail below.

Healthy eating

Avoiding any foods we are allergic or intolerant to and making good choices to fuel our body.

Getting enough sleep

Although this is more difficult for us than most, it is a vital human need.

Address trauma

Some of us might need to address any emotional issues that may have contributed to our situation including childhood trauma or very stressful events that have occurred. You could tackle this alone through expressive writing or mindfulness. You may benefit from finding a counsellor.

Managing stress

This is going to be an ongoing and vital part of helping us to manage our condition. We are even more susceptible to stress due to our overactive nervous system.

Human relationships

Human beings are social creatures, even introverted people need some level of social proximity. I was able to make up for the lack of people in real life who understood the fibromyalgia with virtual connections in a couple of great Facebook groups. If you have people who don’t understand in real life, try to find some online. But try to keep it positive, venting can be useful, but so can solutions-focused discussions.

Hobbies

Just because we are limited in our energy envelopes, doesn’t mean we don’t deserve passion. Find what makes you happy and pursue it. Even if you have to adapt it for now, or ongoing.

If you would like help working through all of these areas and getting some action plans in place – check out my Kickstart Your Fight Against Fibromyalgia programme options!

Below we will chat about yoga and gentle exercise.

YOGA (OR GENTLE EXERCISE)

Yoga is one of many gentle exercise options for people with chronic pain and fatigue. One of the golden rules for fighting Fibromyalgia is to keep moving. Walking is my go-to form of movement, a gentle walk in the sunshine has multiple benefits for mind and body.  There are a ton of ways to move besides yoga and walking: a simple stretch, tai chi, Pilates, swimming, aqua jogging, weight lifting… the list is long.

We shouldn’t be doing so much that our pain and fatigue levels skyrocket, the aim is for better quality of life, not worse. If walking is currently out of reach, then stretch or wander around in a warm pool or try yoga.

Type “Yoga for Fibromyalgia” into Google and you will find a wealth of information trails to follow. Countless blogs and articles cover the benefits of yoga, meditation, and mindfulness for people with Fibromyalgia.

Find an entire post here  about yoga benefits, how I utilise it and some links to get you started if you’re curious.

Yoga for fibromyalgia my experience research with podcast video

Non-Yoga Workout
Here is the YouTube channel of a person who makes fitness videos especially for people with chronic pain and fatigue.

ACTIONS: Come and chat about any or all of these things at Melissa (you) vs Fibromyalgia Facebook group.

I would LOVE your feedback, so please take a couple of minutes to fill in the survey here. Your feedback keeps me on the right track when I create resources.

So that completes our series!

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If you have loved this series and would like all of the content and templates in one place, with space to write notes as you go…find it physically here (affiliate) and digitally here.

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Baby Wearing with Fibromyalgia

Baby wearing has many benefits for baby in addition to keeping mum’s hands free. My second son basically lived in our frontpack due to his reflux. It kept him happier and helped me spread the distribution of his weight. With my third son, I have delved even deeper into baby wearing. I have tried several now and can recommend a few.

Baby wearing with fibromyalgia

Benefits of baby wearing:

  • Helps baby feel secure (my son didn’t even startle when I used the blender when he was sleeping in the wrap)
  • Promotes breastfeeding
  • Enables baby get more rest
  • Babies who are carried cry less
  • Aids in bonding between mama and baby
  • Can help with colic and reflux

What to look for:

  • Holds baby close to your body for optimum comfort
  • Keeps baby high to your chest, you should be able to kiss baby’s head
  • Keep baby’s face clear
  • Protect baby’s hips
  • Get help putting it on when you are learning
  • Don’t overdress baby as they get super warm all cuddled up

Tips for wearing with fibromyalgia:

  • Baby is close to your body
  • Check the straps do not sit at high pain points
  • Maintain good posture
  • Sit when you can
  • Try to alternate between carrying and other means of keeping baby happy
  • Avoid one-sided carriers

Types of carriers

Affiliate notice: Please note that some of these links are affiliate links and I will make a small commission at no extra cost to you if you purchase using these links. Every little bit helps me make these resources. 

Wrap

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The stretchy wrap, one long piece of fabric that you tie up was so amazing for our newborn/fourth trimester stage. It seems tricky but after watching a YouTube instruction video twice, I had the hang of it. Plus, you set it up before putting baby in, so it is safer when you are a newbie. It keeps baby close to your body which really helps with back and neck issues. I found this super comfortable to wear.

 

Semi-Structured

20190304_103619Once the stretchy wrap became a bit too stretchy for his weight, we moved to a semi-structured wrap, like this one. Again, it looks fussy, but one YouTube video and I was a pro. It did take some getting used to as you have to hold baby while tying the wrap up. It keeps baby closer than the below option so is useful for back problems. My picture looks a bit fussier than it needs to be as I wrapped it one last time to tie at the front rather than the back so I could sit down comfortably once he was asleep.

Fully Structured

IMG_20170408_100432

This is the simplest of all baby carriers I have ever tried and my favourite for bigger babies. You can use it from 3kg and there is no need for an infant insert, which means all of my children were big enough from birth (we carried baby legs in initially). My second son lived in this carrier due to his reflux. It was his happy place. My husband was also happy to use this one. Whereas the others he had no interest in at all. It is as simple as clicking the waist belt, putting baby in and putting your arms in the arm holes and clicking the back belt. It takes about a minute! It doesn’t hold baby as closely as the other two options so it is tricky for me to hold for an entire nap but it is so great to throw on when we are doing the kindy run and I have a four year old, two year old and the baby to wrangle.

I never tried a ring sling as it is too one sided for my shoulders to handle, but it could be worth a try. I didn’t bother with any that weren’t suitable from birth to toddlerhood, but you can get some structured carriers that require infant inserts for the littlest babies.

Did you baby wear? I’d love to hear your favourites. 

If you are considering grabbing your baby carrier or any other baby product from Amazon, you might like to sign up for the baby registry – it’s like the world’s most portable registry! 

Want more information about pregnancy and parenting with fibromyalgia?

Come and join the Pregnancy and Fibromyalgia Facebook Group.

Check out my book Pregnancy and Fibromyalgia 

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Coaching for Fibromyalgia: Why a Fibromyalgia Coach?

Have you heard about the concept of using a coach to help you with your wellness goals? Specifically a coach to support you in your journey fighting fibromyalgia? In this post I summarise why, benefits, what life coaching is and isn’t and how to choose one.

Why a Coach for Fibromyalgia?

Struggling with pain, fatigue, insomnia, brain fog and the host of other symptoms that come with fibromyalgia can mean daily life is difficult enough without trying to figure out how tackle these symptoms.

If I had had someone who could have said “I believe you. Here is a place to start. How are you, really?” My journey would have been much shorter. I would not have lost the entirety of my twenties to the fight.

Have you heard of the analogy of most health services being an ambulance at the bottom of a cliff? I envision coaches to come and walk beside you from the top of the cliff down the (tricky) path on the other side.

Benefits of a coach for those with fibromyalgia

Benefits of Fibromyalgia Coaching

Dr Liptan promotes the concept in this article…because she knows a doctor cannot possibly help put the jigsaw puzzle together with you in their tiny allotted appointments. She also discusses coaching with Tami Stackelhouse (founder of the International Fibromyalgia Coaching Institute) in this video.

An article about a study on health coaching in 2016 states that “Telephonic coaching has been found to be an effective means for behavior change while also providing a convenience for the patient and clinician. Appel et al.”

In the study, nine patients participated –
At the conclusion of 12 months results included that Revised Fibromyalgia Impact Questionnaire scores improved by 35%. Illnesses interference in function was reduced by 44%.

The benefits:

  • Fill the gap in the current healthcare system that people with fibromyalgia are falling through – helping patients to enact what doctors suggest but don’t have the time to show them how to do
  • Reduce the time it takes to put together a wellness plan
  • Increased functionality (you do more)
  • Decreased impact on your life
  • Support
  • Understanding

Coaching is

A partnership between coach and client where the coach supports, encourages and provides accountability while the client works toward their goals.

In future models healthcare for chronic illness is likely to include partnerships between client, doctor, physical practitioners, coaches and more. The current healthcare system where patients rely on doctors is not working. We have to realise we have control and start working collaboratively.

Coaching is not

Therapy or the coach taking control for the client. The only expert in your body and condition is you.

Why I Chose to Become a Coach Specialising Fibromyalgia and Mindfulness

At the beginning of this year, I was wondering what to do next in my career. With three small children and fibromyalgia it was becoming clear that I could no longer balance work, life, health and making the resources I have made to help others fight Professional_Coach_Logofibromyalgia. When I visualised my ideal job, it was fibromyalgia coaching! Except that it took me a while to put the pieces together.

I have since studied to become a Certified Life Coach and Certified Mindfulness Coach through the Transformation Academy.

I am supremely passionate about helping others take control of their healing journey – because I believe self-efficacy is vital. We make small decisions all day every day which add up to impact our quality of life.

How I work

We work together to set your vision for what “thriving despite fibromyalgia” means for you, set goals and I will walk beside you as you achieve these.

I provide research, advice on how to find more information, my personal experience and help you work through the information and your own goals and ideas.

My philosophy is very positive but realistic. I have done the work myself and dragged myself from miserable and barely coping to thriving despite the fibromyalgia and I expect anyone who works with me to be ready to do the work.

In short, I empower you to take control of your healing journey.

Coaching for fibromyalgia

If You’re Considering Working with a Coach

Go through their blog, books, products, videos etc. To see if their style gels with yours. Coaching generally takes place over a longer term period, unless you have a smaller goal so you want to be comfortable with the person you choose.

Ask yourself what you would like to achieve – I am able to help you break big goals down into manageable chunks but we do need to have reasonable expectations.

Where Can You Get More Information?

My blog has around 200 articles. I have two Facebook groups you are welcome to join – Melissa (you) vs Fibromyalgia and Pregnancy and Fibromyalgia. I have written two books – Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia (affiliate link) and Pregnancy and Fibromyalgia (affiliate link).

Have a look at my Work With Me page – you can sign up for a complimentary chat where we discuss what your goals are, how I could help and if you are in a good place to begin coaching.

Curious about coaching for fibromyalgia?

Will I Still be Making Resources?

Absolutely! I will continue to write my blog posts and run my groups! How much I can do might look different while I have three children five years old and under, but I will continue to do my best.

What if I am Not in a Place for Coaching Right Now But I’d Like Some Help?

Go through all of my resources as listed above including the blog (over 200 posts) and Facebook groups (two).

Try Fibromyalgia 101 Foundational Programme or Mindfulness for the Chronic Life programmes. These are completely self study at your own pace offerings.

Have you ever worked with a coach for fibromyalgia? I’d love to hear your experience.

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Fatigue and Energy in Fibromyalgia -Fibromyalgia Framework Series Part Seven

Welcome to part seven – fatigue and energy in fibromyalgia! I hope you’re enjoying this series and have made some progress.

Fibromyalgia framework series part seven fatigue in fibromyalgia

We have discussed: 

The Fibromyalgia Framework
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress
Sleep
Central Nervous System
Pain Management

FATIGUE AND ENERGY IN FIBROMYALGIA

I hope that by improving your sleep, managing pain as well as possible and meditating that fatigue is also reduced. In this part we will discuss some extra energy boosters, energy saving pacing and supplements that may help. Severe, ongoing fatigue issues that are not mitigated by good sleep and management of pain will need a real partnership with a doctor to work through.

PACING FOR FIBROMYALGIA

Pacing simply means to alternate rest with activity in a manner congruent with your pain and energy levels.

Before I had begun my journey to wellness, when I was still just trying to cope with being a young woman in terrible levels of pain and fatigue, I had this glimmer of hope in the form of reduced work hours. I had begun to conceive of the idea of pacing and boundaries before I knew anything else. Reducing my work hours to ¾ time and cutting the two hours of commuting each day was the beginning of my wellness journey and such a vital step.

HOW TO ASSESS YOUR BOUNDARIES AND IMPLEMENT WISE PACING?

  • Write it down!
  • Write down what you do each day and track your pain and fatigue levels – look for the patterns over a two week period.
  • Listen to what your body is telling you. Grab an empty piece of paper and a pen and free write about your ideal day, see what your intuition is telling you.
  • Or, to start, take what you can get. Perhaps the first step you can make is to drop one afternoon or one day off work? Start there!

THE CFS/FIBROMYALGIA RATING SCALE

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?” (My italics) 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 small children as opposed to being able to rest. You need to take into account your symptom level and your situation.

These articles are from the website CFIDs and Fibromyalgia Self-Help. They run a free course that takes the idea of pacing into more detail.

SUPPLEMENTS FOR FATIGUE AND ENERGY

See this blog post for more information about supplements for Fibromyalgia energy.

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

Some things that might be useful for fatigue:

Action: I’d love to hear your favourite energy boosters, feel free to come and join Melissa vs Fibromyalgia Facebook group and let us know.

Do you wish that you could have all of the parts of the Fibromyalgia Framework Series, along with the templates to help you plan with space for notes in one place? There is! The Fibromyalgia Framework Series Workbook is available here. Find it physically here.  Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

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Healthy Practices I’m Doing with Three Tiny Ones and a Chronic Illness

I’m right in the trenches of the war known as infant reflux. In addition to this I have a 4 year old, a two year old and fibromyalgia. It can be difficult to remember to look after myself. I have developed some healthy practices to help me stay as well as possible in amongst it all.
healthy practices while parenting three children under five with a chronic illness

Here are some healthy practices I’ve been managing and some I want to begin:

Stretching

Sometimes it’s just my legs and neck while I stand with the baby in the wrap. Other times it’s a very modified yoga practice for my pelvis issues. It’s always a healthful thing to do.

Teas

Peppermint for my tummy. Chamomile to relax. Chai tea latte for a treat.

Shower or bath

Every single day. This is not negotiable as I need the pain relief and the time out (in addition to cleaning up!)

Gratitude

Usually I do my best to notice and be thankful for the good, but I am currently formalizing the practice with a journal book I purchased for 100 days of gratitude. All you really need to do to get started is to write down three things you are grateful for each evening. It can be as simple as you survived! I talk about gratitude as part of the mindful practices you can incorporate to help you manage chronic pain, fatigue, anxiety, overwhelm and more. See the free workshop here.

Water

Lots of water is required for nursing. I would like to start adding fruit and herbs for even healthier hydration.

Essential oils

I have an essential oil pain cream that I adore, especially for my neck and shoulders. Lavender and german chamomile for pain relief and sleep aid. Peppermint for headaches or tummy aches. I’d like to learn more and diffuse them during the day.
Action: tell me your favourite types and what you use them for!

Eating (as healthily as possible)

While I am mostly one-handed carrying a baby all day I am just trying to eat enough. When I can I priorotise salad, fruit and smoothies. Check out four healthy eating practices you can start right now.

Meditate

This is big, especially when your sleep is being interrupted more than usual. Having a tricky napper means that the old saying “sleep when your baby sleeps” is irritating and impossible. So I will get everything set up (heat pack, earphones and YouTube video I want that day), get baby to sleep and quickly lie down. I love this 15 minute one for when I’m not game enough to try for this 30 minute one.

Hobbies

Reading! I’m an obsessive reader and usually have more than one book on the go at a time. I also like to scrapbook and colour – although I haven’t had the time for these recently. My blog is also something I spend time on.

Do you have any healthy practices you do to sustain you in busy seasons?

Are you pregnant, trying to conceive or parenting with fibromyalgia? Come and join Pregnancy and Fibromyalgia Facebook group. pregnancy and fibromyalgia def ed angle

Check out my book Pregnancy and Fibromyalgia (please note that this is an affiliate link, I will make a small commission at no extra cost to you if you purchase using this link).

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Fibromyalgia Framework Series Part Six – Pain Management for Fibromyalgia and Chronic Pain

Welcome to part six of the Fibromyalgia Framework series – pain management for fibromyalgia and chronic pain fighters! I hope you’re enjoying this series and have come to join the conversation in You vs Fibromyalgia Facebook group.

The fibromyalgia framework series has been presenting my (evolving) view of managing fibromyalgia. In 2018 some of my strongly held theories were proven true by experience and research.

fibromyalgia framework part seven pain management

We have discussed: 

The Fibromyalgia Framework
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress
Sleep
Central Nervous System

PAIN MANAGEMENT FOR FIBROMYALGIA/CHRONIC PAIN

We could spend a long time going through pain management options in depth, but that is outside the scope of this series. I will give you a brief introduction to the multiple options and give you extra reading you can follow up on. As you will recall from my fibromyalgia puzzle, low dose naltrexone and physiotherapy are key pain management options for me. Yours might be entirely different.

LIFESTYLE FOCUSED PAIN MANAGEMENT

  • Sleep
  • Gentle movement
  • Rest
  • Seeing food as fuel
  • Observing your work/life balance

SPECIFIC FOR PAIN – WHAT I DO:

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

  • Heat pack. This is my first line of defense, I use it on my neck first thing, whenever I can during the day, in the evening and at bedtime.
  • Essential oils – lavender is my all time favourite for sleep, pain and relaxation.
  • Deep Heat, a non-medicated heat producing rub that eases muscle pain, especially when combined with a good massage.
  • Biofreeze – a cooling pain reliever, especially good for during warmer weather.
  • A hot bath is my best treat and the first thing I want when the pain increases.
  • I see the physiotherapist every three weeks and they do neck tractions and place acupuncture needles in trigger points in my neck and shoulders. This is the only thing that keeps the neck free and keeps the severe headaches, dizziness and nausea that accompanies the severe neck pain away.
  • A Theracane trigger point massager for self-trigger point release. You can use your fingers, but mine get too sore for this now, you do have to push rather hard.
  • Magnesium oil on my back and shoulders at bedtime.
  • Low dose naltrexone. Over a period of 12 months, it has decreased my neck pain levels more than anything ever has. It is not a miracle drug – if I don’t take it, the fatigue skyrockets, and if I overdo it, my neck pain increases. It is not a standalone treatment. But I am super thankful for it!
  • It helps me get to sleep where nothing else has ever worked. I do have to combine it with a heap of sleep hygiene routines, but it’s the base of the plan. In addition to helping me sleep (and thereby, reducing pain), it reduced the wider spread pain and near constant headaches.
  • MSM (Methylsulfonylmethane) for muscle and joint pain. It helps with the pain in my index fingers as well as a little difference in my neck.
  • Slow release, high dose ibuprofen for period pain, for about four days – it’s pretty severe.
  • Ibuprofen or paracetamol (Acetaminophen) for headaches or low level pain that breaks through.
  • A muscle relaxant for spasms in the neck or back – the frequency of these has decreased since I began LDN.

OTHER PAIN RELIEF OPTIONS:

  • TENS machine
  • Foam roller
  • Essential oils
    • Lavender
    • Chamomile
    • Peppermint
  • Herbs
    • Thyme
    • Devil’s Claw
    • Jamaican Dogwood
    • Cayenne
    • White Willow Bark
    • Corydalis
  • Supplements
  • CBD oil

For medicinal pain relief, please discuss these options with your doctor and do your own research. Do always check for interactions between herbs/supplements and medicines that you are on.

LOW DOSE NALTREXONE

I haven’t been quiet about the benefits of low dose naltrexone (LDN). Since beginning it in 2017 I have experienced the best improvement of any single thing I have ever tried. I believe it is all down to sleeping better. The offshoots of this have been many. I have decreased pain levels, increased stamina, decreased fatigue, dramatically improved quality of life.

Find my Low Dose Naltrexone One Year Experiment post here. It includes a full write up of how it is changing my life with some links to further information.

For an overview of LDN see this website.

You might like:

Do you wish that you could have all of the parts of the Fibromyalgia Framework Series, along with the templates to help you plan with space for notes in one place? There is! The Fibromyalgia Framework Series Workbook is available here. Find it physically here.  Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

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Health Update 4 Months Postpartum with Baby #3 and Fibromyalgia

I haven’t given you a proper health update for a long while. I kept you updated about the pregnancy and have given a full rundown on my low dose naltrexone experiment. But nothing about my general health recently.

Being consumed with children and nursing and surviving has impacted my health, but not as badly as I feared it would. I had a bad flare after Noah, pretty much his entire first year was a flare. With Wyatt I did better thanks to starting low dose naltrexone (LDN). But this time I am fully established on LDN, and the difference is huge.

Parenting with fibromyalgia: How I am doing four months postpartum with baby #3

Pain

Average pain levels are sitting at 4/10 for my neck and shoulders. These trigger points are irritated by carrying my 7kg baby and lying on my side to feed him in the night. I have had several bad headaches and one so bad I had to go to bed for an entire morning. I am not taking pain medicines regularly, only paracetamol/acetaminophen during the worst headaches (I take the water soluble one as I cannot swallow pills when the headaches are bad and cause nausea so paracetamol is the only option at these times). My pelvis, glutes and legs are getting very sore at the end of days that I have had to carry the baby more and nights where I have had to lie on my side with baby for a long time. I have a feeling that this is due to active trigger points from labour. But generally, day to day, I am doing much better. I am using my heat pack, topical, un-medicated creams and hot showers daily.

Talking about trigger points – I have put more effort into researching and treating them. I have been using my Targeted Symptom Plan template (part of this kit in my Etsy store) to work on these.

Fatigue

Living on 6-7 broken hours of sleep is difficult for anyone and I am so thankful at how well I am coping. A 20 minute meditation makes all the difference on the days when I can. I cannot wait for baby to consistently sleep in four hour stretches!

New things to try

A person in a group I am in on Facebook suggested a brand of magnesium to try called Magnesium L-Threonate (please note this is an affiliate link and I may make a commission at no extra cost to you). Apparently it crosses the blood-brain barrier effectively. You might like to research this.

Baby product that has been saving my life

I have been so grateful for my baby wrap (affiliate). The day that I first put it on the baby stopped an hours long fussing spree! This holds baby closer to your body which reduces the strain on your back and shoulders. It also sits around your waist, not near your pelvis, this relieved the pressure that the normal front pack placed on it. At first I had to use it for all naps. Then just for naps that he woke up early from (read: all) and needed extra sleep time to be less fussy. I also use it when I am taking the four year old into kindy with the two year old and baby. I prefer my Beco Gemini front pack (affiliate) for this as it is much faster to put on, but it was stolen with our car a couple of weeks ago.

Stress

Speaking of cars. First, I was rear ended while driving one car with the baby in it. That car has been written off (in a very slow process) so we are hunting for the ideal replacement. Then the second car was stolen (with my baby carrier and three car seats in!). Very stressful. On the day of the accident I had to practice careful breathing and some relaxation techniques. I dealt with it much better than I would have several years ago. But it hasn’t been much fun navigating all this.

What’s next?

I am studying a life coaching course on Udemy to support my mission here on the blog. Do come along and join my Facebook group if you want access to super special discounts while I am setting up this service. I am trying to get baby to begin taking a bottle so I can catch a break one day. I am also considering how and when to get back to work with three tiny children – one of whom seems destined to be breastfed forever!

How are you doing? Do let me know if these health updates are useful for you.

You might also like these articles:

Baby Wearing with Fibromyalgia

Healthy Practices I’m Doing with Three Tiny Ones and a Chronic Illness

Tips for Coping with a Newborn and Fibromyalgia (Chronic Pain and Chronic Fatigue)

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Fibromyalgia Framework Part Five: Central Sensitivity and How Meditation Can Help

Welcome to part five – central sensitivity! I hope you’re enjoying this series! Did you catch the last one Sleep? It was pretty meaty and I hope very helpful.

The fibromyalgia framework series is going to present my (evolving) view of managing fibromyalgia. In 2018 some of my strongly held theories were proven true by experience and research. I’ll share this with you.

Fibromyalgia framework series part seven pain management for fibromyalgia and chronic pain

We have discussed:

The Fibromyalgia Framework
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress
Sleep

CENTRAL SENSITIVITY/OVERACTIVE NERVOUS SYSTEM IN FIBROMYALGIA

A lot of research suggests that Fibromyalgia is the result of central nervous system dysfunction – specifically an overactive nervous system, stressing and exhausting the brain (Dennis W. Dobritt, Fibromyalgia – A Brief Overview)[1]. Other literature suggests that the chronic pain causes the central nervous system to go into overdrive. However you look at it, the nervous system appears to be involved.

The theory of autonomic nervous system dysfunction resonates with me as a big part of the puzzle – not the entire answer.

Many of programmes are popping up and claiming to “cure” chronic pain (Lightning Process, Curable app, the CFS Unraveled programme, various books with similar programmes) based upon the idea of retraining the brain. If these programmes are the entire answer for someone, I am happy for them. But mostly they are going to be one part of the puzzle.

MEDITATION

Meditation promotes a calming of the central nervous system, allowing the parasympathetic nervous system to activate. In the short-term that meant achieving deep rest during meditation, in the longer term it meant a dramatic reduction of the misfiring of my fight or flight response to minor stimuli.

The benefits:

  • Complete rest
  • Calming the central nervous system (Martinez-Martinez et al, 2014[2])
  • A break from stimulus
  • Focus on the body, accepting it as it is (mindfulness).
  • Not trying to nap, which can be frustrating for those who can’t.
  • For those who have trouble with orthostatic intolerance, just lying down can make you feel better.
  • A boost in energy (however temporary).
  • Improve the immune system (University Health News Daily, 2018)
  • Treat depression
  • Reduce pain

MEDITATION OPTIONS

You can:

  • Simply focus on your breath for a few moments. How you breathe in, how the breath feels a little warmer on the way out. How your body feels when you exhale. How your breaths get a little longer as you relax. Don’t push anything, just observe.
  • Do your own body scan meditation – by quietly thinking of each part of your body in turn, noticing the feeling in each, accepting it, willing that part to relax and moving to the next.
  • Do progressive relaxation – by tensing and releasing each part of your body in turn you can encourage it to relax deeply. As an example you could start with your feet, tense and release, your lower legs, upper legs, glutes, abdomen, arms, face.
  • Guided meditations – YouTube has a heap available including Yoga Nidra, mindfulness meditations, meditation specific to pain or fatigue etc.

As an extra form of rest, you can lie down or recline in a chair with a heat pack.

Blue one way traffic sign

MINDFULNESS FOR FIBROMYALGIA

A working definition for mindfulness is to be observant of thoughts and feelings without judging them. To allow our body to be as it and accept it as it is.

A research paper (Cash et al 2016) found that mindfulness meditation “ameliorated some of the major symptoms of fibromyalgia and reduced subjective illness burden.” Other studies have also shown the effects to be sustained at three year follow ups, with consistent practice.

There are plenty of courses and books around learning mindfulness. One such book is by Vidyamala Birch, founder of Breathworks (a UK based organization that teaches mindfulness) and chronic pain warrior, You Are Not Your Pain: Using Mindfulness to Relieve Pain, Reduce Stress and Restore Wellbeing – an Eight Week Program. I enjoyed this book immensely.

The concept of mindfulness can follow you out of the practice of mediation and into daily life.

FURTHER READING

Books

  • You Are Not Your Pain: Using Mindfulness to Relieve Pain, Reduce Stress and Restore Wellbeing – an Eight Week Program by Vidyamala Birch and Danny Penman (2013)
  • Back in Control: A Surgeon’s Roadmap out of Chronic Pain by David Hanscom
  • Cure: A Journey into the Science of Mind over Body by Jo Merchant (2016)

Articles

Activities

  • Free writing for 5-15 minutes per day, then destroy the paper.
  • Deep breathing (minimum of five quiet breaths when you feel the need, up to 10 minutes of specific mindful breathing a day) this is a nice 3 minute
  • Write down your happiness level and social connection level each day, keep a gratitude list and remember your people.
  • Do a loving-kindness meditation each day like this one
  • Do a chronic pain relieving meditation like this one.

If you are curious about central sensitivity and using mindfulness and meditation to help you with this, sign up for my free meditation workshop here. 

central sensitivity and meditation

[1] Dennis W. Dobritt, DO, DABPM, FIPP. Fibromyalgia – A Brief Overview (a presentation). Retrieved from https://www.michigan.gov/documents/mdch/fibroacpsm_246421_7.pdf

[2] L.A. Martínez-Martínez, T. Mora, A. Vargas, M. Fuentes-Iniestra, & M. Martínez-Lavín. (2014). Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/24662556

Impatient? Want to work through the content now? The Fibromyalgia Framework Workbook is available to purchase, with all of the templates (freebies and templates recommended from my Etsy Store) with space for notes to work through the content as a course. Find the Fibromyalgia Framework here (digital). Find it physically here

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Tips for Coping with a Newborn and Fibromyalgia (Chronic Pain and Chronic Fatigue)

Having done this three times, I have formulated some tips for coping with a newborn and fibromyalgia. They are split into the key areas for dealing with fibromyalgia in general – sleep, general health, pain management and expectations.

How to survive with a newborn and chronic illness

Sleep is king (always) and for coping with a newborn with fibromyalgia

  • Give baby to your partner/support person with a bottle (formula or expressed breast milk) and go to bed early. With our first I expressed at 8.30pm and went to bed at 9pm. Husband would hold sleeping baby, feed him when he woke, wind him and bring him into the room. Those precious hours of sleep made a huge difference, especially as I flared the worst with him. Unfortunately we haven’t managed this with our second (reflux and colic, we had to keep each other company in the storm) and third (I’m breastfeeding and he refuses the bottle) and I so wish for those three or four hours of sleep!
  • Find a person each day to visit and hold baby while you nap or meditate. Unless you are lucky enough to have a baby that naps in their own bed for more than 20 minutes at a time, I never got one of those!
  • If you don’t have a visitor to hold baby and baby isn’t napping in their bed for you, lie down while holding baby (meditate, pray, read, watch television -just don’t move) -they will probably sleep better and you can rest.
  • Help baby sleep. With all three babies I fell into the trap of doing all the things and just made it harder to fall asleep.With our first we waited five overtired months to sleep train and after much trial and error we found he needed a good 15 minutes alone to decompress before he slept 7-7 with a 10pm dream feed (anything we did just prolonged it and made it super difficult for him to sleep).With number two at 22 months (the reflux made us nervous to sleep train) we started ignoring him in the night, he would grizzle for 10 minutes, go back to sleep and wake in the morning so much more refreshed than us going in and out all night.

    With number three I was standing, jiggling, patting and shhing and it took ages to get him off. Then I noticed my husband would sit on the couch, jiggle him a little, baby would cry for a few minutes and then go off to sleep! If I catch him before he’s overtired, ensure he is well winded, swaddle him, sing his songs and put him down awake he will go to sleep himself with literally a minute of grizzling. I haven’t figured out how to get him to do longer than 20 minutes of sleep but it is much nicer for both of us. We are setting the foundations for later sleep. Sleep is important for mama and baby.

Physical health

  • Drink lots of water
  • Eat healthily and regularly
  • Take a multivitamin
  • Check your iron levels and address low levels
  • Stretch
  • Massage yourself with lavender oil regularly
  • Take a hot shower or bath every day
  • Get into the sun for at least five minutes
  • Go for a gentle walk, even if it’s five minutes in your garden or down your street

Pain relief

  • Do all of the above
  • Enact your natural pain relief mechanisms from pregnancy
  • Discuss medicines for breastfeeding (if you choose to/are able to nurse) before baby comes (and there are medicines that are alright for nursing – see this article).

Other tips for managing a newborn with fibromyalgia

  • Aim for one or two tasks a day outside baby that are crucial and let the rest slide (ie dishes and washing).
  • Keep in touch with your family and friends, even if only by text.
  • If something doesn’t seem right, ask for help (excessive wind etc).
  • Know that the newborn that takes two hour naps every 45 minutes and sleeps from 7-7 with two or three feeds is NOT the norm.
  • Enjoy that baby and take lots of pictures, they will grow and this stage will pass.

I’d love to hear your tips?
If you are managing a newborn with fibromyalgia, or will be soon do come and join Pregnancy and fibromyalgia Facebook group.

More articles for you:

Baby Wearing with Fibromyalgia

Healthy Practices I’m Doing with Three Tiny Ones and a Chronic Illness

Nursing with Fibromyalgia: My Experience and Some Research

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Fibromyalgia Framework Series Part Three – Tracking Your Progress Fighting Fibromyalgia

Welcome to part three of the Fibromyalgia Framework Series – tracking your progress fighting fibromyalgia!

The fibromyalgia framework series is going to present my (evolving) view of managing fibromyalgia. In 2018 some of my strongly held theories were proven true by experience and research. I’ll share this with you.

Fibromyalgia Framework Series Part Three Tracking Your Progress Fighting Fibromyalgia

In this series we will address the components of my framework including diagnosis and misdiagnosis, tracking your progress, sleep, basic human needs, pain management, the central nervous system and fatigue.

Did you grab your free Fibromyalgia Framework Puzzle and Grid templates in the first part of  The Fibromyalgia Framework?

TRACKING YOUR PROGRESS FIGHTING FIBROMYALGIA

As you may have noticed, I firmly believe we have the power to impact our quality of life. Our daily choices make a big impact on our wellbeing. Only we know our bodies so intimately. So we need to take charge in order to help our doctors to help us.

Fibromyalgia is complex and unique, so good record keeping is an important step in managing the myriad of symptoms and potential treatments.

By tracking our symptoms and things that we have tried we can notice patterns and make informed choices. Relying on fogged brains is not the easiest way to go. I have tried a great many things that I cannot remember! By keeping track you have created useful data to discuss with your doctor at appointments, it can help you see clearly what you need to discuss first and to give feedback for any changes they have previously suggested.

You can track notes in a journal, make a bullet journal, find an app or try a template.

It is good to keep track of:

  • Your sleep quality and quantity
  • Key symptoms and severity
  • Any medicines or supplements you are taking, and
  • Any self-care and exercise you manage.

I personally love printed templates to physically write on and have created several options that are available in my Etsy Store. Below are a couple of them. The one on the right includes the option to write down the top five things you are thankful for each day, which I find is a nice way to add some mindfulness to our day. Some days it might only be that you are still breathing. Others you will have trouble limiting it to five. The one on the left is gives the option of two to a page or a full page tracker.

My daily health log blueMy spoonie daily log

You don’t need to be tracking all of the time, but it is especially useful for identifying patterns periodically and for tracking experiments. It is important to know if things work. Especially over the course of this series!

Impatient? Want to work through the content now? The Fibromyalgia Framework Workbook is available to purchase, with all of the templates (freebies and templates recommended from my Etsy Store) with space for notes to work through the content as a course. Find the Fibromyalgia Framework here (digital). Find it physically here.

Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

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