So what would I keep in this list? What would I add?
My current understanding is that there are six key areas to fight chronic pain, chronic fatigue and fibromyalgia:
Knowledge and taking control for ourselves
Central nervous system
Fatigue and pacing
What works for me right now?
Find the video here
Sleep is the biggest component of my journey. I will discuss this more under Low Dose Naltrexone, below, but it is HUGE. See also my giant insomnia post for more.
Aside from sleep and physiotherapy I do a lot of stretching, self-trigger point work, yoga, meditation, essential oils, heat and more. I am employing more natural remedies than medicinal.
Low Dose Naltrexone– is now number one on my list. This one covers sleep and pain management . It helps me sleep in more than one hour blocks, which has been the biggest part of my puzzle. Now, when I sleep only six or seven hours (due to the baby) but a few hours in a row, I feel infinitely better than I ever did on my eight or nine broken hours. As a result I experience less pain, less anxiety, less brain fog. More health and a much better quality of life.
Physiotherapy – this is still crucial, more specifically the insertion of dry needles into trigger points and left for 15 minutes to rest to encourage blood flow and relaxation followed by stretching and mobilizations. I only have to go every three weeks at the moment, which is a big win as I pay privately for every treatment. Learn more about myofascial pain syndrome and trigger points here.
A combination of reduced work hours and reduced activity levels. Both are key. Reduced work hours is the first thing that jump started my journey to wellness and is still part of managing my energy envelope.
Perpetuating Factors/Normal Human Needs
For me, this means managing the myofascial pain syndrome and the fibromyalgia. Most of my six key ways hit multiple symptoms. Aside from managing my posture, avoiding triggers and sleeping as best as I can, these two are important:
Nourishment – I am learning about the importance of nutrition right now. I haven’t yet finalised my template for eating going forward but all of my research seems to suggest the number one thing we can do is prioritize vegetables and fruits. Then I am prioritizing healthy fats (olive oil, coconut oil etc) and good quality protein. This leads to a lower consumption of grains. As an offshoot, supplementation, is key. I am using magnesium and 5HTP to sleep (after finally getting off amitriptyline after years which precluded 5HTP). I also supplement with MSM as our soils are generally deficient in sulphur and this seems to help me. I am preferring whole foods over supplements – I am taking moringa powder or hemp powder for naturally occuring vitamins and minerals.
Gentle exercise – this is still key but I am able to do more than I was previously. I can now do 30 minute walks without pain hangovers. My exercise of choice includes yoga, walking and Pilates.
Central nervous system
Meditation– this has only become more integral to my daily life. I have meditated daily for more than five years now. I use it for rest (I can’t nap), for pain relief (or a break from it when it is bad) and stress relief. The benefits I have reaped since my initial post are so many that I am a mindfulness and meditation cheerleader. You can sign up for my free workshop Mindfulness for the Chronic Life here.
So these are the key things that are working for me now.
I know it is complex. It has taken me years and a lot of research and personal trial and error to figure out. I have provided many links in this post to help you in your research.
Insomnia is a serious and often ignored problem, especially for people with chronic conditions like fibromyalgia.
I would like to suggest that we need to take this more seriously.
This is a long post. You may want to grab a cuppa and get comfortable! If you have fibromyalgia and brain fog is an issue, there is a handy (free) PDF document below for you to download!
The video: Insomnia and Fibromyalgia
Key facts about insomnia and fibromyalgia
A key problem for people with fibromyalgia and many other chronic illnesses
Debilitating and makes other already incapacitating symptoms worse
A recipe for a shorter, less fulfilled life
Pain inducing – even for those without chronic pain conditions
A money drain – in health care costs from those who suffer the side effects, in absenteeism from inability to work, in lost income, if you could place a value on a fully functioning human being able to participate fully in life then multiply that by the 10 million people estimated in the US alone (and 3-6% of the world’s population) it would be a massive number.
Sleep helps pretty much every symptom of fibromyalgia
Sleep improves our quality of life and our emotional state
We can improve sleep! It might be multi factorial and a doctor needs to help in many cases, but we can improve sleep.
Shall we take a look into the literature that supports my statements?
Does insomnia lead to death?
Laboratory animals subjected to extreme sleep deprivation can die relatively swiftly of unknown causes — exactly what goes wrong is not clear, but their body temperatures start to drop and then they suffer rapid and widespread physiological failure. 
Does insomnia cause pain?
“According to the majority of the studies, sleep deprivation produces hyperalgesic changes.” (That means yes!)
What side effects does insomnia cause? A summary based upon all of the research I have ever done and experienced after more than a decade living with it:
Anxiety and/or depression
Sleep as a treatment for pain
“More broadly, our findings highlight sleep as a novel therapeutic target for pain management within and outside the clinic, including circumstances where sleep is frequently short yet pain is abundant (e.g. the hospital setting).”
Why is sleep a novel (or innovative) treatment for pain??
So we have found that research supports insomnia as life threatening, costing money, leading to pain (and sleep is a treatment for pain) what is the insomnia problem specifically relating to fibromyalgia?
What is insomnia, exactly?
Trouble falling asleep
Difficulty staying asleep
Waking too early
Not achieving good quality sleep
What’s happening for people with fibromyalgia and sleep?
Dr Ginevra Liptan, MD, writes about sleep in her book The Fibro Manual (2016):
“Sleep studies show that Fibromyalgia subjects show abnormal ‘awake-type’ brain waves all night long, with reduced and interrupted deep sleep and frequent ‘mini-awakenings’ (Brandi 1994; Kooh 2003). This deep-sleep deprivation leads to pain, fatigue, and poor brain function (Lerma 2011; Moldofsky 2008; Harding 1998). Treatment focused on increasing deep sleep is the key to improving all these symptoms.”
In plain terms, people with Fibromyalgia don’t tend to reach stage four of the sleep cycle (the deep, restorative stage), and therefore, they suffer from chronic, deep sleep deprivation, which causes all sorts of issues with the body: pain, fatigue, fog, anxiety, etc.
Insomnia—along with poor sleep in general—is believed to make fibromyalgia symptoms more severe, which means treating your sleep problems may have the secondary effect of improving pain, fibro fog, and more.
Let’s just repeat that – treating sleep should help with pain, fatigue and fibro fog.
How have I experienced insomnia?
Every single night for more than a decade (including my entire twenties), despite researching and using a lot of sleep hygiene tips and natural sleep aids, having trouble falling asleep, not staying asleep for more than one hour at a time, spending time awake in the night too exhausted to get up but too sore to remain lying still and waking feeling more tired than I went to bed.
This was while on the only option the doctor every offered me – amitriptyline.
Finally in 2017 I began taking low dose naltrexone and it helped me to start sleeping in blocks of up to a few hours. This made such a difference on my quality of life. But I still struggle with insomnia every single day.
I can’t imagine how much more I could achieve if I could sleep well. Or what it might have been like if my doctors had been willing to work with me to help me achieve more sleep. Even utilizing low doses of medicines for a short amount of time to achieve some rest, like two prominent physicians who have fibromyalgia and treat patients with it suggest (Dr Teitelbaum From Fatigued to Fantastic and Dr Liptan The Fibro Manual – thank you so much to these two doctors who have done so much for our community).
I was miserable and missed out on the usual things one does in their twenties. I couldn’t do my OE, I could hardly make it through the day let alone travel long distances.
Now, with the amount of sleep I’ve been able to reclaim I am managing day to day, but I still experience severe costs. I cannot stay up late, it is difficult to manage my children myself, I cannot work and when I do work I can only manage part-time work (so a cost of 30,000-80,000 per year lost there). Add the costs of things I need to manage such as the low dose naltrexone prescription, doctors’ visits, supplements, physiotherapy, and the many, many things I have tried to help myself. Add in the impact on my quality of life of dealing with chronic pain all day every day. I don’t know what a pain free day might look like!
And there are people who are worse off than me.
What do other people with fibromyalgia and insomnia say?
“Fibromyalgia insomnia is a very real issue for me. I am currently breastfeeding a six month old. She wakes for one feed a night and resettles quickly back to sleep. It then takes me two to three hours to get myself back to sleep. I am exhausted. I have not had a good night sleep in years.” – Amanda
“Where do I start? It’s a vicious cycle in so many ways. If it’s not the pain keeping me up, it’s restless leg syndrome or another of the plethora of symptoms and comorbid disorders that come with fibro. Otherwise, it’s pure anxiety from having night terrors brought on by my medication and the trauma that landed me with fibro in the first instance. The more I get into a terrible sleeping pattern, the worse my pain and other symptoms get, the worse my mental health gets, the worse my relationships get because I just cannot function or am not physically able or awake to conduct a “normal” life. And of course all of these things contribute to not being able to sleep or sleep well. Which perpetuates the issue.
While I was at uni my insomnia was seriously affecting my studies but I got flat out told by several doctors that they refused all students sleeping meds because they were so highly abused. I cried in Drs appointments, I cried as I lay awake at night in pain, I cried when I was forced to ask for extensions on my coursework, I cried when I got sub-standard grades because I knew it wasn’t a reflection on my ability but my circumstance. It’s such an underestimated burden that so many are forced to “put up with” because “everyone’s stressed” or “everyone’s tired” for one reason or another. I wish it was taken as seriously as my pain, which has had all manner of meds thrown at it. I’m sure it hurts me just as much.” – Rebekah
So for them, and for me, I want to beg doctors to take the sleep problem much more seriously. I want to beg researchers to look into how we can fix this (ideally without long term drug use).
If you are suffering from insomnia and fibromyalgia what can you do?
You may recall a few weeks ago I shared about what a coach is and why I became one. I shared about how my mission is to help other people improve their quality of life and thrive despite fibromyalgia. For several years I have been showing you how I fight fibromyalgia and now I want to help you do the same thing.
Today I want to share with you my programmes – Kickstart Your Fight Against Fibromyalgia.
These are for you if you would like to sleep better, calm your central nervous system, make the most of your energy, manage your pain and craft your vision of “thriving despite chronic illness”.
I want to also ask you a favour – if you know someone who is struggling with fibromyalgia could you please share this with them? I so wish these programmes existed when I was struggling to put one foot in front of the other as a 20-something person with nothing more than my heat pack and pain killers that hurt my tummy and didn’t help much. I definitely had no one who understood. I created these programs while remembering what I would have wished for, if I knew what to wish for!
The traditional coaching model where we sit down one-on-one and you set the agenda, we make goals and work on them. For 45 minutes at a time we focus on you and your well being journey – we discuss where you are at, your goals, what you are trying and would like to try and fine tune your plans with someone who has been where you are and gets it. We use the six key areas to fight fibromyalgia as our framework. Check out my work with me page to see how you can request your complimentary consultation.
“It [coaching] was like a reset point, where Melissa helped me to focus on the goals I have by breaking it down into smaller goals.” – A client
This is the self-study or group option. As soon as you sign up you will have access to all of my best resources to help you plan your fight against chronic pain and fatigue. From the Fibromyalgia 101 Foundational Micro Courses in the six key areas to fight fibromyalgia to the Mindfulness for the Chronic Life course to help you manage the central nervous system over activation and the many bonus resources that come with it. For the group options – you simply up level your membership to premium and gain access to the exclusive Kickstart Your Fight group.
“Melissa has a wealth of knowledge and tools to help others along with a passion to help.” – A client
Drop me an email at email@example.com. Or Schedule your complimentary chat if you would like to ask any questions, let me know your goals and be sure that these programmes might be a good fit for you.
To get an idea of how I work you can:
Look through the blog archives – my blog is featured as one of Healthline’s top Fibromyalgia blogs of 2019
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. I’ll share this with you.
Sleep is huge. I had theorized that sleep was a crucial missing component in my healing journey for a long time. Research is starting to bear this out. Doctors specializing in and writing about fibromyalgia know it. It still hasn’t trickled down to most practitioners.
Once I began low dose naltrexone I started to sleep in more than one hour blocks. Getting restful sleep has been the basis of all the improvements I experienced over 2017 and 2018 despite having tiny children and a third pregnancy.
There’s a lot of research about the sleep issue in Fibromyalgia and chronic deep sleep deprivation is no friend to our pain, fatigue or brain. We can do quite a few things ourselves to impact our sleep, but sometimes we need a doctor to step in and help. I am very lucky that a locum GP I saw once noticed my history of being very tired and not sleeping well and put me on amitriptyline. This was before I was diagnosed so I’m unsure if he suspected Fibromyalgia or not. This was the only way I could get any sleep for years. That doesn’t mean it helps me to sleep well or that I don’t have a list of sleep hygiene rules that I live by.
Based upon my reading of the research, books by my favourite fibromyalgia authors and my experience, my number one recommendation to anyone suffering from chronic pain or similar illnesses is to get your sleep.
SOME SLEEP HYGIENE TIPS
Manage pain – take prescribed medicines as directed.
Pacing during the day so you are not over-exhausted.
Don’t have caffeine after lunch.
Have a wind-down routine (that doesn’t involve technology).
Go to bed and get up at approximately the same time each day.
Dab lavender oil on temples, wrists and/or feet.
Do a body scan meditation.
EXTRA SLEEP HELP
Once you have tried the above sleep hygiene tips, it might be worth exploring natural sleep options such as:
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
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.
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:
Knowledge (knowledge is power)
Yoga (or gentle exercise)
Pacing and Boundaries
What you get:
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 2018if 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.
After reading The Whole Health Life I have decided to look into specific areas of my health in more depth, one at a time, at the moment it’s insomnia. One book recommended by Shannon Harvey is Night School: Wake up to the Power of Sleep by Richard Wiseman.
The research on sleep is fascinating. Based on answers around when we like to go to bed, get up and do our best work there is a table to sort us into chronotypes – larks or owls, (p41) I’m a “moderate lark”. Apparently larks are more likely to be introverted, logical and reliable while owls are likely to be extroverted, emotionally stable, hedonistic and creative. These would mostly hold true of my husband (an owl) and I.
What is also interesting is that I appear to follow the usual circadian rhythm, my body will start waking up at 7am, peak at 11am, decline to the lowest point by 3, climb and peak again around 7 with my body seeking sleep from 9. So I assume I just have slightly weaker ability to wake and sleep than others, while still following the natural pattern. I’ve filed this away for future follow up!
Another issue of timing is “social jetlag” for example during the week the owls will be tired from getting to work while their body wants to be sleeping. On the weekend (or any night for me!) When my owl of a husband wants to socialise I’m ready for bed. Causing each chronotype to suffer fatigue.
Wiseman references a lot of research. For example, in 2006 it was “estimated that around sixty million Americans suffer from a chronic sleep disorder” (p57) and approximately a third of Americans now get less than seven hours of sleep per night. In a British study more than 30% of participants had insomnia or another serious sleep problem. With this setting the scene, Wiseman goes on to explain what happens when you don’t get enough sleep – spoiler alert, nothing good.
“Belenskys’s study reveals the highly pernicious nature of even a small amount of sleep deprivation. Just a few nights sleeping for seven hours or less and your brain goes into slow motion. To make matters worse you will continue to feel fine and so don’t make allowances for your sluggish mind. Within just a couple of days this level of sleep deprivation transforms you into an accident waiting to happen.” (P67)
After all the bad news around not sleeping enough, Wiseman shares his secrets of super sleep and they include include:
1. Create a bat cave
Dark and silent room, right temperature, safe, only sleep and sex in the bedroom.
2. Set up during the day
Nap right, exercise but not too close to bed time unless it’s gentle yoga, use your brain and energy, know when you’re tired (don’t ignore sleep cues, unless you are tired all day, then don’t ignore your bedtime).
3. Prepare for bedtime
Warm shower/bath, write out your worries, snack right, lavender (unless it gives you a headache!).
4. At bedtime
Counting sheep, happy thoughts, fake a yawn, try to stay awake (reverse psychology on your brain!), set up some sleep cues (I have an eye mask, the dark and gentle pressure on my eyes now cues me to rest).
5. In the night
Get up (unless you physically can’t), don’t panic – apparently we get more sleep than we think, relaxing in bed is good rest and the closest the list comes to recommending meditation is to suggest progressive relaxation (I do a body scan meditation when I wake).
Nothing here is new to me, but it is presented in easily actionable chunks, if you want a list of sleep hygiene to follow, this is a good one. I would add meditation, I can’t nap and even if I do it’s only after a long time of trying and I feel gross afterward. So I meditate. Sometimes, if all the stars align, after a 20-30 minute meditation I’ll nod off for 5-10 minutes and wake up feeling nicely rested (very unusual). I use guided meditation during the day, at bedtime and in the night I do a body scan meditation (I visualise each body part individually relaxing, sometimes I’ll imagine it’s warm and tingly and relaxed, other times I’ll just imagine each part in turn).
Again as I delve into the research around sleep I am flummoxed at the lack of worry the doctors I have come into contact with have shown for my sleep. They should know how desperately humans need it, let alone people with chronic pain and fatigue already. I’ll keep you updated if I find anything useful in my research and experiments.
Love to read?
If you love reading like me try Amazon Kindle Unlimited Membership – you can try your first month free and access unlimited reading or listening on any device! They now have magazines too! It’s also available for those of us who use Amazon.com.au *squee*.
If audio books are more your speed, as they are for me with three little ones, you know you can get a free trial of Audible on Amazon here. I’ve recently started reading a lot more audio books as the hands free option is far easier to access with the wee ones. You will get access to two audio books, plus two Audible Originals, and other cool membership options for 30 days. Cancel anytime if you don’t want the full subscription.