Being home-bound is not unusual for many chronic illness fighters. But being absolutely unable to leave the house is new for most of us.
So in this post I am going to compile a list of things that you might like to do while you are home-bound. As new ideas come my way, I will add to it.
Please remember, that even if you are busy with small children or working, as I am (both), you still deserve to take time out for your own self-care.
Affiliate notice: Please note that some of my links are affiliate links. If you make a purchase using these links I may make a commission at no extra cost to you.
Would a massive list of low histamine recipes help with some ideas for cooking and baking? I have you covered with this list from Through the Fibro Fog.
Would you like to do some learning while you are at home?
Alison -Their About page says, “We believe that free education, more than anything, has the power to break through boundaries and transform lives.” And living with chronic illness is definitely a barrier to further learning.
I have my eye on a few of their free courses for some future up-skilling. With options for 2-3 hour certificates or pathways for diplomas there is a lot to search through. Subjects range from touch typing to French to graphic design to project management.
If you would like my entire repository of online, on-demand yoga, breathing and meditation classes and courses then you are welcome to come and join Yoga for the Chronic Life virtual studio. I have been building this for several months now.
Hello friend, are you new here? I am Melissa a mama, fibro fighter and yoga coach. Join the newsletter list for updates, my free resources library and check out the archives – there are over 200 articles here to help you. My free course You vs Fibromyalgia is also here.
Let’s chat central nervous system, restorative yoga and 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).
Having lived it for over 15 years, I would be inclined to agree.
It is not the sole problem, but it certainly causes
physiological flow on effects, even after we have learned to calm it down
Like perhaps a switch gets flipped in our brain from some kind of trauma – an illness, childbirth, experiencing abuse of some kind, experiencing a natural disaster etc. and then it is very hard to turn it off.
The simplest way to
Simply put – we are too often in “fight or flight” mode and
struggle to active the “rest and digest” mode.
Fight or flight is that response
we have to stressful stimuli – a bear chasing us? Energy is diverted to the
functions that are needed to fly, or run really fast! We experience that belly
full of butterflies on crack, feel shaky, anxious and fearful.
The rest and digest response is that delicious restful
feeling when we are totally relaxed – like during a good, gentle massage.
When you have a central nervous system over activation it is
like you are stuck in the fight or flight mode. A chronic, low level anxiety
that persists that you live with for so long you might not recognize it as
anxiety – because you try to adapt.
This causes real problems in the body. If our energy is constantly diverted to scanning for threats and getting to run or protect ourselves, how can we have energy for normal functions? Digestion itself takes a lot of energy. Then being unable to drop into deep sleep because our brain is watching for threats, even more energy is drained. It is a big, vicious cycle.
What are some of the
symptoms of a central nervous system over activity?
From personal experience, I can tell you it is not a quick
fix either. I have meditated, done yoga, worked on sleep, removed myself from
perpetuating factors (as best as I can) and it is still a work in progress.
And – although my central nervous system is MUCH calmer, I
am not magically healed. But with my whole of life plan in place, including a
heavy amount of the above treatments, I am feeling much better.
For a long time meditation was my thing, particularly yoga
Nidra guided meditation, because I needed the profound rest it offered
Gentle breathing was a great tool to reduce some of the
constant tension in my chest, shoulders and neck. It is also fantastic at
helping to calm the central nervous system when it gets flared again.
Right now, though, my jam is restorative yoga.
Why? Because it is a little less passive and easier to
access for those who find it difficult to just sit still and breathe.
What are the benefits
of restorative yoga?
Total relaxation of body and mind
Improves capacity for healing
Balances the central nervous system
Helps us tune into our body
What is restorative
Well this is a big question. Because a lot of people get it
confused with yin yoga.
Restorative yoga is a passive practice that utilises props
(cushions, bolsters, blocks etc.) to achieve total support. Yin yoga also holds
poses for longer than other yoga traditions, around five minutes or so, but it
is looking for deep sensation and it is energetically more strenuous (while
still being relatively gentle).
In a restorative yoga class you will have your props around
you, it will be a calm atmosphere and you will like only do a few poses. There
may or may not be calming music and essential oils.
Would you like to learn restorative yoga with me?
Restorative Yoga for the Chronic Life. Join us for my signature blend of poses and classes designed to be as accessible as possible and specifically for people with chronic pain and fatigue. I am super passionate about this and cannot wait to share this with you.
In this post I have taken my combined knowledge and written
it up as you see. For some sources and further reading see below…
Have you thought about your self-care plans for this year yet? Self-care is as vital as it is undervalued. Especially for busy women juggling multiple priorities. Add in chronic health issues and it should be compulsory.
Accidental multi-tasking is one of my favourite things – a two for one on your energy levels. When self-care doubles as something that also manages my health, I’m pretty stoked.
Here are my top five self-care plans for 2020 that also double as part of my chronic illness management plans.
If you’ve read my blog for any amount of time, you will know that meditation saved my life. I do it every single day, and if I must miss a day it’s very rare. It gives me deep rest my body doesn’t even achieve during sleep. It tops up my energy levels for the afternoon. It calms my central nervous system. It is just for me. 15-30 minutes of pure self-care.
Do you meditate? Tell us about your practice in the comments!
Ya’ll know I LOVE Yoga. Yoga is simultaneously mindful movement (gentle exercise), relaxation, stretching, strengthening, pain management and a sleep aid (for me). It balances the central nervous system which has been key for me. I have shared extensively how I use it to help me. Here’s the short of it: One off poses, “micro yoga” formal practices (of 10-20 minutes) and a bed time class I made to help me wind down for sleep.
Have you tried this challenge? Please tell me if so!
Getting to bed on time
Sleep is way too underrated. Seriously, lack of sleep will kill you (slowly) and make you feel terrible. I’ve written extensively about it. Going to bed around the same time each night is a key part of good sleep hygiene aka practices that help you sleep.
(Who just went, “What? I can’t treat myself. Ain’t nobody got time or money for that! It need not take much money or time!)
What is something that makes you feel super special that doesn’t cost the earth? This year I’d like to attempt something different each quarter: a manicure, a massage, a weekend away with the husband etc. With three kids 5 and under we’ve been snowed under and going to the physiotherapist every month has been the extent of it for me.
Try: Schedule something right now! A manicure? Book one once a month, schedule a time to do it yourself, or swap with your friend to do each other. Massage? Book one once a month, swap with your partner, or get out that lavender oil and give yourself a hand and foot massage. A Saturday morning lie in? Negotiate with the partner if you have kids, or send them to grandparents/aunts/uncles and grab at least one a month.
I am an analyst, a thinker, a written processor. So taking the time, even just five minutes to process with my pen is helpful for me to work through things. Even if you’re more of a talker, research shows journaling to be useful. You can have free reign to vent. To get things out of your head. Write down memories. Whatever works.
Try it: You can make a habit of giving yourself 1 or 5 minutes a day, a gratitude journal of just three good things or maybe you could draw in your journal.
Do you journal? Tell us how you do it in the comments.
Want to jump in and get some real, concrete help with your self-care in 2020?
Restorative Yoga for the Chronic Life is open for enrollment now! But only until the 6th of March 2020. We are going to learn some super gentle, relaxing stretches to activate our rest and digest mode so that we can sleep better, relax, reduce tension and more. I’d love for you to join us!
So these were my top five self-care plans for 2020, I’d love to know what are yours?? Tell us in the comments below.
Do you enjoy this work? Want to help me ensure people with fibromyalgia receive the tools, encouragement and hope that they deserve? When you join the team to support my work in the pay what you can (starting at just $5 per month) Melissa vs Fibromyalgia membership you will immediately access an exclusive members library of resources and tools.
I am super passionate about sharing the tools yoga offers with people with chronic pain, chronic fatigue, fibromyalgia. The thing that often gets in the way is what people think it means to “do” yoga.
Today I am going to share with you all sorts of raw pictures of me “doing” yoga because I want you to start to get a sense of the fact that “yoga” has been usurped by the perfect poses on Instagram. If you have a teacher who gets your situation, then they can help you adapt yoga to your needs.
A visual representation of the below points:
Yoga can be adapted for almost anybody (if you have been cleared to move gently and the teacher “gets” your needs)
Breathing is a central part of yoga (and many of us don’t do it optimally)
Meditation is my favourite part of yoga (yoga Nidra guided meditation is my jam, I do it in bed with my heat pack)
You can do one pose
I have several poses I enacted whenever I need them during the day
Chair yoga is a great way to make yoga more accessible
You can do yoga in bed
Classes can be 5 minutes, 10 minutes, 15 minutes, 20 minutes or more
You don’t need to be super bendy, in fact, I am not
If you are curious about restorative yoga (a passive, very gentle practice) then come and check out this free workshop Restorative Yoga for the Chronic Life, it’s available from the 28th February until the 6th March.
One that can be done in bed
A multi use tool
Adapting to my needs
Using the chair
My all time favourite that can be done almost anywhere
I hope this gave you a sense of how “yoga” can look and hopefully hope that, if you want to, you could try it in one way or another.
Show me how yours looks
In Foundations of Yoga for Chronic Pain and Fatigue, I have students who take one or two of the poses in the opening module and use those as a “class” to start. There are two full class options in module three, chair and a flow class. Many students choose only the chair class.
“For the first time I’m in a yoga class that I feel like I’m actually going to get it…I really can do this and I love how it feels.”
– Student of Foundations of Yoga for Chronic Pain and Fatigue
I’d love to see how your yoga looks. Comment below, tag me on Instagram @melissanreynolds or come and join the inner circle on Facebook.
Tackling fibromyalgia is a mammoth task. It is a complex illness requiring a holistic approach. Getting our mindset right is key for helping us to improve.
If we want to get better we must truly believe we can.
The tools for a cure do not exist yet. But I do believe we are close.
In the absence of a cure, we do need to ask ourselves two questions:
Do I believe I can improve?
Am I willing to do the (hard) work to achieve this?
You need to believe you can improve and you need to do the work. Or you’ve sabotaged yourself from the beginning.
Take some time and play with these questions. Write them in your journal, or a blank piece of paper and write through all the thoughts that come up with them. When you’ve worked through that, perhaps you could write yourself an affirmation like, “I will decrease this pain and fatigue.” Or if that seems too far for you right now, “I will take one small step each day to improve my life.”
There is no magic pill. Nothing a doctor can dispense will eradicate symptoms or stand alone.
It will more than likely be a multi pronged attack in the broad areas of:
Pacing and energy management
Nutrition and food intolerances
Central nervous system/meditation
It is a big task that will take time.
You need someone on your team who:
Helps you look at the big picture, holistic management
Enabling you to focus on small, sustainable changes
Can provide accountability and support
Whether that is yourself, a coach, a family member or another suitably experienced person – you need support. PS. I offer coaching, check that out here.
It sounds hard, right? Like perhaps you could never do all of this while in such pain and so exhausted?
Let me encourage you. Because I did it. Over several years I have halved my pain and fatigue levels and improved my quality of life – far exceeding my expectations.
How did I do it? One step at a time with the belief I could improve just a little more.
What are the mindset shifts for improving fibromyalgia?
Not I can’t…but how can I? From I’ll never be cured…to I will improve. Not this is so overwhelming…but what area can I tackle right now?
A positive mindset is not going to cure us but it sure as heck will keep our hope kindled and keep showing us the way forward. One step at a time.
What can help us cultivate a positive mindset?
Each day try to find three things you are grateful for. Track your progress, however small and be thankful for it. Some days you might only find gratitude for the fact that you survived it. On others you might notice that you felt so nice for a few minutes in the hot shower. Or how sitting in the sun on your deck was so calming.
For some things that might make you feel nice see this post.
Let me know, do you have a gratitude practice? Do you believe you can improve?
Nutrition is important for optimal health. What “healthy eating” means exactly varies from person to person. I have been researching food as a gateway to good health recently and while I haven’t settled on a massive lifestyle change such as paleo or plant-based etc I have formulated the below four key healthy eating choices you can start enacting right now.
Affiliate notice: Some of my links are affiliate links. If you make a purchase using my link I will make a commission at no extra cost to you.
Here’s the video about it
I still don’t believe in making food a battleground or making massive changes without a lot of preparation, but these things I have managed while nursing with three children five and under and chronic pain and fatigue.
So here are my eating healthy eating changes you can make right now:
Lots of fruit and vegetables.
I am aiming for eight servings a day with most from a colourful array of vegetables.
What are my secret weapons? Soups and smoothies. I have used my Nutribullet to make many types of smoothies with a mix of vegetables, fruits, healthy fats and dairy free milk. I also make my dairy free milk using it! You can get your own Nutribullet here, I’m obsessed with mine!
3. Less grains – there’s a lot of discussion around grain. Having done a gluten-free trial a few years ago I know I am not allergic or intolerant but I am keen to reduce my reliance on grain based carbohydrates. By prioritising vegetables and fruits I have managed to de-prioritize grains. When I have them they are wholegrain and well soaked.
4. Avoid what you are intolerant to
If you suspect something doesn’t agree with you, avoid it for 30 days then add back in. Eliminating lactose has helped me a lot. If you suspect there are many issues in your diet and these four things are not helping then you might consider doing the Whole30 elimination diet or a similar idea. They remove the most common intolerances and then you add them back in one at a time to challenge them. This way you can eat what works for you.
Checking your intolerances
You can also check for intolerances with testing. IntoleranceLab provides Food Sensitivity Testing and is a quick start way to identify your intolerances. You just send them a sample of your hair. I have not used this lab personally because I am in New Zealand, but I have done intolerance testing using my hair and it was surprising what came up. I vaguely knew at the time that dairy was not good for me and that bananas were difficult to tolerate – and my test confirmed it. Simple!
So these are my four tips you can work on right now. I am actually finding subtle benefit from my changes. I am less bloated and uncomfortable and I am noticing that I am experiencing less reactive hypoglycemia (physical reaction to hunger such as dizziness and being hangry.) I am also able to eat slightly less often than I used to, which is a relief as I am over figuring out what to eat all the time!
What would your tips be? What have you worked on and found made a difference?
Do you miss learning? Or want to up-skill but don’t have any spoons leftover after life to go to class? Online learning options might be the way to go.
I have found online learning options to be excellent for filling that gap as a mama with chronic illness. I’m not expected anywhere at any specific time. I can access lectures while wearing the fussy baby in the wrap. And while I am tired from the baby waking regularly in the night, since I have experienced the improvement in my symptoms from low dose naltrexone, I can’t bear not to indulge my love of learning.
Affiliate notice: Some of my links are affiliate links, if you make a purchase using my link I will make a small commission at no extra cost to you.
Benefits of online learning for those with chronic illness
You can lie or sit however you need (in bed with your heat pack?)
You don’t have to leave the house at a specified time
You don’t have to do the work at a specified time
You can do as little or as much as you can fit in (around energy, children, etc)
You can use your phone, laptop, tablet or computer – whatever works best for you
Keep your brain active
Up-skill yourself no matter your current employment status
You can learn a hobby you have been curious about
Online courses are the most useful when you do the work and can demonstrate what you’ve learned. So if you want to put it on your CV, be prepared to talk about how it helped you and relate it to your work.
How to get the most out of online learning
Complete all of the work offered, the reading, the quizzes, the videos, the extras
Ensure you understand it all
Participate in forums provided
Practice what you have learnt
Ensure you understand what you have learnt and how it can help you in your career (if you intend to use it on your CV)
Below I share some learning platforms I have come used.
When I was off work while pregnant due to severe pelvis issues last year I did a course on SEO (search engine optimisation) through Lynda.com. I had free access to this as my public library has a bulk membership which was awesome. The app was easy to use and there is a great selection of both longer and shorter courses. As a bonus it shows the certificate of completion on LinkedIn. There were no assignments but I practiced everything on my blog.
Earlier this year I completed a life coach certification through Udemy. I paid just $11.99 USD (down from $200!) for my course in the January sale and it is a fairly comprehensive one. After this one I moved on to mindfulness certification and group coaching. Once I had completed my courses I received my certificate. I also joined the networking group associated with my course provider (The Transformation Academy) to learn even more. I also practiced my new skills as I went. I have loved every minute of the training, the practicing and then using my skills in this blog. It will also be useful when I go back to part time work. The beauty and tricky part of Udemy is that the courses are run by different people and are not necessarily vetted by Udemy. I highly recommend the Transformation Academy though.
Their About page says, “We believe that free education, more than anything, has the power to break through boundaries and transform lives.” And living with chronic illness is definitely a barrier to further learning.
I have just found Alison and have my eye on a few of their free courses for some future up-skilling. With options for 2-3 hour certificates or pathways for diplomas there is a lot to search through. Subjects range from touch typing to French to graphic design to project management.
You can choose the premium (paid) option and gain access to all courses for as long as you need, or you can enroll in courses and complete them within a designated time frame without paying (but you won’t receive a completion certificate). You can choose short courses up to online degrees.
Subject ideas you may like to explore as a start
pretty much anything you like!
Have you embarked upon any online learning? Do you have one you recommend?
If you are curious about up-skilling yourself for your fight to be well you might like to look into my learning options. To learn from the comfort of your bed, couch, or comfortable chair with your phone, tablet or computer. Take my shortcut – all my years of research, personal learning, trial and error to make your plans.
As we know, fibromyalgia is a painful condition that many suffer from. In fact, it’s believed that in the United States alone, over 10 million people have some form of it. While medications might help calm symptoms, they don’t always have the best side effects or lasting results. Because of this, many often look for other methods they can use to help ease their symptoms.
This is a guest post from Dr. Brent Wells, a chiropractor who founded Alaska-based Better Health Chiropractic & Physical Rehab. There is more detail about his work below.
Surprisingly, one of the best ways to help with fibromyalgia pain is to stretch. This is because it will reduce inflammation in the body and help to keep it active. Because of this, it will keep the body calm which can significantly reduce the symptoms of this medical issue. Below you’ll find more about why stretching is so important for those with fibromyalgia and some stretching options you can use to help with it.
Benefits of Stretching for Those Who Suffer From Fibromyalgia
There are many benefits that come with stretching if you have fibromyalgia. Below are some you’ll find if you do.
It Increases Serotonin and Endorphins in the Body
When you suffer from fibromyalgia, it can decrease the levels of serotonin and endorphins in your body. Serotonin and endorphins are neurotransmitters in the brain that help with emotions. When they have low levels, they cause the body to feel drowsy and irritable which can affect your mood and physical wellbeing. Stretching can help by boosting the levels of these two chemicals in the body. It will help to improve your overall mood which can lower the side effects of fibromyalgia, like anxiety and stress.
It Can Help with Muscle and Joint Movement
Stretching works to help increase muscle and joint movements in your body. This can prevent nerve pain as you will keep these areas active. It also helps you to be more flexible.
It Works to Improve the Heart
You might be surprised to learn that stretching can actually help to improve the heart. This is because it will expand the surrounding arteries and keep them open and pliable. It also reduces any fat around the heart and can help you to maintain healthy cholesterol levels.
It Can Improve Your Sleep
Stretching can improve your sleep because it reduces tension in the body. It also helps to release endorphins which can make you feel better both mentally and physically. This will encourage your body to stay calm which can help you to get a better night’s sleep.
Stretching Options for Those with Fibromyalgia
If you suffer from fibromyalgia, you’ll find there are a few simple yet extremely beneficial stretching options you can consider trying out.
Make Circular Motions with Your Joints
One simple stretching option for those with fibromyalgia is to make gentle circular motions with your joints. For instance, move your ankles around in circular motions and then counterclockwise ones. This will help to awaken your muscles and joints in the area but do so in a simple and pain-free way.
Do Calf Stretches
Calf stretches are very important as it helps to relieve tension in the Achilles tendon. To do a calf stretch, place your hands on a flat surface, ideally a wall. After doing so, press and bend one leg forward while keeping one leg back. Lean gently against the leg that is forward and then switch it with your other leg. You can continue this stretch for a few minutes.
Try Aerobic Stretching
Aerobic stretching can be very simple and helps to keep your heart healthy. There are a few different types of aerobic stretching you can consider:
Circular arm motions: stand straight and hold your hands out sideways. Then, move them in circular motions forward and then backward.
Jogging in place: you can stand in one place and start doing a gentle mini jog. This doesn’t have to be intense, just a few minutes of you slowly running in place.
Do Pool Exercises
Stretching in a pool can help you to move around more freely because the water doesn’t mix with gravity. This can make it feel as if you’re floating and give you more mobility. There are plenty of pool exercises to consider doing that are very easy to do. Some include:
Sidestepping: hold on to the pool’s wall and then take about 20 steps to one side while holding on to the wall. You can then reverse the direction.
Knee lift: hold on to the pool’s wall and carefully lift one knee up to your chest. Hold this position for about five seconds and then switch to the next leg.
Hip kicks: stand with your body sideways to the pool’s wall while holding on to it. Then, lift one leg up in the water as if you are kicking something and then switch to your other leg. Continue this motion with both legs for a few minutes.
Keep in mind though that if you feel any pain when doing stretches, stop immediately. This could not only worsen your fibromyalgia pain, but cause muscle strains and injuries. Fibromyalgia doesn’t have to overtake your life. By doing simple stretches, you can work to naturally relieve many of its symptoms. Better yet, most of them are very easy to do so everyone can try them out no matter what stage of fibromyalgia you might have. Because of this, stretching is ideal to implement into your lifestyle to help give you relief.
About Dr. Brent Wells
Dr. Wells is a chiropractor who founded Alaska-based Better Health Chiropractic & Physical Rehab. This practice offers numerous services to help those with everything from mild to severe pain and is designed to provide great care to those on the search for top Anchorage chiropractors in AK 99515.
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?
Step four discusses using the breath as an energy source, “Pranayama can increase your fitness and energy levels – without getting out of bed!”
Step five is the actual yoga! Kuran provides a more active routine, a gentle restorative routine and discusses yoga Nidra.
“Like other forms of meditation, yoga Nidra helps release serotonin and decrease cortisol which lowers your stress response.” I adore yoga Nidra and it’s a vital part of my coping when I’m tired, especially when I have tiny babies and am not sleeping much at night – so I always enjoy learning more about it.
I loved the suggestion that even in a flare up we can do yoga. Practicing yoga doesn’t mean a big routine or even physical movement – Kuran points out that even visualizing yourself doing yoga poses can be useful. A breathing practice while lying in bed is sufficient. This makes yoga such a useful tool for those fighting chronic fatigue – its adaptability.
If you enact the action points suggested at the end of each step you will be a long way toward a holistic healing process.
I highly recommend this book and yoga if you struggle with chronic fatigue.
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