What is the best way that exists to improve fibromyalgia? In this post, I share the best information that exists right now. I am keeping an eye on the research being done by Dr Jarred Younger and the Neuroinflammation, Pain and Fatigue Laboratory and I encourage you to as well. They are at the forefront of the research on fibromyalgia.
I believe that everybody can improve their quality of life. Whether you are suffering from chronic pain, chronic fatigue, insomnia, myofascial pain syndrome, fibromyalgia – I believe there are steps we can take to improve our symptoms. I am not sure about complete recovery, yet, but I have personally halved my pain and fatigue levels. I have also dramatically improved my sleep – I no longer spend hours trying to get to sleep, sleep in one hour blocks or spend hours awake in pain in the night. It is just far and away better than before.
How did I achieve this?
By following the advice of the authors in the following two books. And by working away at lots of little steps every single day.
I also believe if we gave these books to people as soon as they were diagnosed and their doctors were willing to work with them through them, then they would not decline as far and would begin to improve sooner.
Affiliate notice: Some of these links are affiliate links and I will make a small commission at no extra cost to you.
This book was written by a doctor who has fibromyalgia herself and has dedicated her career to treating it. In a recent interview I saw with her, she said she believes herself to be around 80% better to what she was (following her own advice) and even works full time as a practicing doctor in addition to a lot of advocacy work and blogging etc. She also believes we may have the tools for complete recovery available in the next ten years!
This book is also designed to take the back portion to see your doctor and help them treat you. Especially the sleep section.
Another doctor who has fibromyalgia and who has dedicated his career to helping patients with it. A holistic protocol that begins with sleep. If you Google his name, you will find a multitude of resources, including videos and interviews and an entire website.
Both of these books are multi-pronged attacks and deal with more than just band aids for pain and fatigue.
Even if you only found one nugget in these books, you would improve your quality of life. These books are packed full of useful things to enact.
If you are able to follow instructions and try things yourself – then you will surely see results.
Dr Liptan also gives further detail about nutritional changes in The Fibro Food Formula book – so check that out!
All of these areas take time and trial and error. If you want to DIY it, write out a big list of goals or things to try from these books and slowly working through it
If you want support, then you can get some coaching (with me or another health coach). They can help you break it down into manageable chunks.
My Hypothesis
I believe if I was handed one or both of these books at the beginning (and had a doctor who would help me with their parts) then I wouldn’t have gotten so sick and it wouldn’t have taken so long to get better. The cascade of physiological flow on effects wouldn’t have occurred.
To Do List
Read one or both of these books
Write out the main list of areas (sleep, pain, nutrition etc.)
Fill in ideas to try under each area, including what you need to ask your doctor for help with
Work on each part slowly
If you can, engage a coach to help you with this work – it’s complex and there’s a lot to it
Do you think you can improve your quality of life? Have you done it? Followed one of these books, or another protocol? I’d love to hear from you in the comments below.
Do you agree with my hypothesis? That we can improve fibromyalgia now by following one or both of these two books?
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
Sleep
Perpetuating factors
Central nervous system
Fatigue and pacing
Pain relief
What works for me right now?
Find the video here
Sleep
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.
Pain Management
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.
If you would like to learn more about how to get a jump start on your journey then you can join You vs Fibromyalgia free micro course and my newsletter list (which will give you access to a heap of other free resources including printable templates, reports, micro courses, workshops and more).
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
Insomnia is:
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.
And:
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. [1]
Does insomnia cause pain?
“According to the majority of the studies, sleep deprivation produces hyperalgesic changes.”[2] (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:
Fatigue
Pain
Headaches
Attention problems
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).”[3]
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
Waking unrefreshed
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.[4]
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?
I finally sat down to tell you about my fibromyalgia origin story. Usually I focus on the positive and where my story improved from. There is a chapter in my book explaining the progression of the illness, but in this video I share how the illness progressed, how I finally got diagnosed, how I changed my life little by little and why I do what I do.
My Fibromyalgia Origin Story Video
I also introduce my next phase – in my recent update I discussed being unsure as to what happens next with my blog. I am moving to supporting people one-on-one so that I can make a bigger impact with all that I have learnt. See my work with me page for more detail and stay tuned as I fine tune this.
Contents of the video:
Progression of the illness (it took place over a long time) 0:33 seconds
When it got better (when I started my journey and the long way I took to get here) 5:40
Melissa vs Fibromyalgia book (affiliate) this is where I share my journey, a consolidated and highly edited version of the blog.
Fibro Framework Workbook (affiliate) this workbook is the framework by which I understand fibromyalgia now and helps you to work through your own plans for wellness.
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 melissa@melissavsfibromyalgia.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
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.
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.
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.
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.
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.
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.
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.
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.
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)
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.
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)
[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
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.
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
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.
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.
