I’ve been running on empty since my pregnancy with Nu.
Thinking that I was fighting Fibromyalgia, I actually engaged in a drawn out raid and burn on my body. Any leeway I made was immediately voided by my overreaching ways.
There’s no denying it, a family with a mortgage in a big city can’t live on one income forever. So I rushed back to work, not realising how deep the deficit caused by pregnancy and the first year of parenthood was. I thought that “only 20 hours” was a fibro friendly compromise. And I have managed, but at a cost.
My neck has deteriorated to the point that it stops me from obtaining many whole sleep cycle most nights (90 minutes, necessary to reach the deeper sleep state and repair). We’re meant to have about four a night. No pain relief can mute the pain and it’s always tight and stiff.
So, at the conclusion of my work contract, I have chosen to take a break. There are many things I need to do, but I will hopefully have the freedom to rest as well.
Here are the self care practices I plan to engage in:
I’m really hoping I get another appointment with the pain clinic and that they might have something, other than medicines that don’t work or have severe side effects, to help. If I can control my neck, I can sleep. If I could sleep, properly, regularly, the possibilities are endless!
I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue). Usually my writing is very positive and I try to look at the bright side – what I can do, not what I can’t. Today I am going to share what it’s really like to live with Fibromyalgia, as someone who has lived with it for more than ten years.
The definition of Fibromyalgia, chronic widespread musculoskeletal pain, chronic fatigue and sleep disturbances, doesn’t convey the depth of the impact of this illness. In addition, the body is a whole – therefore one system acting up has effects on others, for example my tummy tends to get upset when I’m very sore.
Could a person imagine that they had one or two hours less sleep than their body needs, never sleep in a block of longer than one or two hours (that’s rarely completing a whole sleep cycle), spend some time awake (alone, in the middle of the night) in too much pain to sleep, need a medicine to help them get to sleep but still struggle to do so, and never wake feeling well or refreshed (whether they’d had four or nine hours sleep) EVERY DAY for ten years, they may understand my illness.
People who are just tired don’t get this level of exhaustion. This level of fatigue causes brain fog – loosing words, swapping words, memory problems and clumsiness.
I do everything possible to maximise sleep. It just doesn’t seem possible for me to sleep well.
In addition to the sleep problems and soul crushing fatigue that accompanies this, there is the pain. Chronic pain seems so tidy a term. What it means is that I have pain levels of 4-6/10 every day.
My neck takes the centre stage, interrupting sleep, being extremely stiff in the morning and generally tight and sore. When it gets worse it causes secondary symptoms – severe headaches, dizziness, nausea and vomiting. I have to see a physiotherapist every three weeks for neck tractions and acupuncture to keep it away from the worst end of the spectrum. Working at a computer, sitting still, and moving too much aggravate it.
My back is a close second, it often feels two moments away from spasm – like the back of the ribs are electrocuting it. When my lower back gets sore it radiates down into my glutes and upper legs. All down the spine are tight, angry muscles. I have to put a pillow under my legs in order to lie down.
There are more transient pains that come and go, such as my wrists and lower arms when I’m at work. My upper arms always feel bruisy, if I bang into a door frame (brain fog steals spacial awareness) it can hurt for ages, people grabbing my arm hurts far more than it should (hyperalgesia). Severe period pain for a week every month (dysmenorrhea). My knees have recently decided to join the party and have caused some problems – on some days the pain gets so bad that I can’t walk and walking is one of my daily pain management techniques.
Fibromyalgia also causes flare ups – a temporary exacerbation of one or more symptoms lasting from a day to several months. My entire pregnancy and my son’s first year were a giant flare up, all of my symptoms were wildly worse (pregnancy symptoms are like mild to moderate Fibromyalgia symptoms – so I had a double dose).
Sleep deprivation doesn’t help pain. There’s been studies on this – healthy subjects subjected to minor sleep deprivation develop Fibromyalgia symptoms. Luckily for them they could have a few good night’s sleep and recover. Severe sleep issues has been widely researched and is extremely detrimental to health .
Every day requires multiple pain management techniques. Including stretching, meditation, resting, pacing, walking, trade offs and judicious use of pain medicines. My pain specialist has recently made me see that by not controlling the pain as well as I can I am causing physiological damage – chronic pain changes the body – and I am leaving myself susceptible to more pain and fatigue. The neverending cycle of Fibromyalgia.
I, mostly, kick fibro’s butt. I work 20 hours per week, have a toddler, a hunky hubby and hobbies. I do a lot while in a lot of pain. There are people far worse off than me. There are people with milder symptoms than me. But for my level of symptoms I cope remarkably well. The pain specialist, my doctor and the rheumatologist are impressed with my progress. The pain clinic has nothing but medicines to offer me because I do everything else they suggest.
I wish, with all my heart, that I didn’t have these limitations. I fervently pray for healing. I feel more guilty than anyone could know about the effects of these limitations on my family.
So when I make a call to miss out on something, to go to bed or ask for help – I’m far past the point I can push through.
I have exhausted every avenue I have and know I can’t afford the consequences coming to me if I don’t rest. I’ve been doing this for ten years. I have lived it, researched it and constantly push myself. So all I ask of the people around me is to respect it when I say I can’t do something or that I need help. Trust that I am just trying to live well. It’s incredibly hard and I survive only by my faith in God and incredible willpower.
Anyone who follows my blog or Facebook page knows that I struggle the most with my neck. I may not have it under control, but I have a multitude of coping mechanisms for it. I thought I’d share some.
1. Swiss ball – if you have one, sit on it and gently lean backwards over it so that your back is laying on it and let your head relax. Good right?! You can also lean forwards onto it. These stretch out your upper back and shoulders which have a big impact on your neck.
2. Foam roller – this is a nifty tool that I haven’t yet come close to fully utilising. One good use for it is to put it under your neck and just chill out for a couple of minutes. Your head is heavy enough so you don’t need to apply pressure or move about. You can turn your head gently from side to side (like saying no) and hold for a time on each side. Google foam rollers for neck and back and you’ll find a few tutorials on the uses for a foam roller.
3. Stretching – I stretch a lot, it’s a natural coping mechanism for me. The ear to shoulder stretch and the chin to throat stretch are nice neck stretches. But full body stretching is great for general fibro management.
4. Yoga – you can really utilise all different parts of yoga practice for Fibro bodies – just see this post I wrote about it. But for my neck I like cat and cow pose, forward bend pose, downward dog pose and child’s pose. If my whole back is being an issue then half legs on a chair (or couch) pose is a goodie.
5. Heat – I have my heatpack every morning, whenever I can in the day and before bed. It’s a favourite. A hot bath or shower is also good.
6. Rubs and massage – I have an antiflamme cream with natural ingredients to massage into the affected area/s which can be useful. The cream and the quiet time massaging the area are soothing.
7. Rest – sometimes the neck and back pain means I need to rest and cut back. This is part of pacing and general management of fibro.
8. Medicine – this is relatively new for me, I have a difficult relationship with medicine, but I am trying to remind myself that if judiciously used, medicine can reduce my misery. I have several lines of defense from paracetamol, to ibuprofen, to a paracetamol/low-dose codeine combination, to muscle relaxants. I very rarely allow myself the muscle relaxants but it does help when my back and neck have gone to custard.
A mix of these combined with general living well mechanisms (exercise, healthy eating, reducing stress etc.) Are the best ways I know to try to cope with my neck and back. Do you have any others?
Coping with a toddler when you have fibromyalgia – this needs to be part of the parenting playbook when you embark on your fibro parenting career!
This post has been a long time coming. I haven’t felt like I was coping these past few months. But we’re here, so that’s winning.
Toddlers seem to have an abundance of energy that I could only dream of. If only Nu would lend me some, maybe it would be easier.
The big thing for me (on the days I’m not working) is to get him active in the morning, when I’m most able and he’s not so tired either. This way the afternoon can be a more relaxed affair.
I am slowly learning that I’ll never feel like I’m coping if I’m putting too much of my energy elsewhere (like work), so my balance needs to be kept in check.
Note: This post was written when my first son was a toddler, I have since had more boys and all of this advice still stands!
Here’s a few tips I’ve gleaned in coping with a toddler when you have fibromyalgia:
Accept help – my husband takes a turn in the morning when he’s not at work, I never get back to sleep, but it’s a break. If grandparents want a visit, give them the toddler and run away!
Enjoy them – this may be the sweetest age, Nu says things like “want some mama hug”.
Play dough, stickers, colouring in to keep them occupied for 10 minutes.
Outside – even checking the mail and watering the garden can seem exciting.
Park – even if you need to drive there, the park is a great and free way to burn off toddler energy.
Routine – my son is a routine boy and we have a loose but similar routine for each night, this helped when bedtime got foggy at the sleep regression.
Setting -first thing, before I get him up, I set up some of his toys seductively. This may buy 10 minutes of independent play! I also swap toys around regularly.
Rest when the toddler rests (if you’re home with them) – on the days I’m home I will do Yoga Nidra meditation before anything else when he naps.
Library, zoo, beach, local attractions – there are options for all energy ranges. Nu loves animals, so we’ve been to the zoo a few times.
Read – when you’re super exhausted and sore, lie or sit down (surrounded by cushions if need be) and read all of their books.
Movies – my guy won’t sit through anything longer than a minute, but if this diversion works for your kids then lie down immediately!
Play dates – another energetic creature can occupy yours! Mamas can chat. Win-win.
Pick your battles. Save your energy for the ones that count.
Consistency, set boundaries and always stick to them.
Don’t forget yourself, keep experimenting and keep practicing your wellness techniques.
The last few are the result of a thread on my Facebook page, some amazing fibro mamas gave me some advice:
17. Educational games on a tablet – lie down and rest while they sit with you and play. 18. Have a bath together – get some toys or bath paints and let them play while you enjoy the warmth on your muscles. 19. Create a toddler-proof room that you can let them free and self-direct their play, sit back and enjoy their gorgeousness (do you do that? I’ve been known to stare at my boy and just grin lol) 20. Don’t always tidy up. The toys will be back out! Sometimes let the laundry and dishes be. 21. Take time out. Go for a coffee alone. Or a massage. Or a walk. Do your yoga. Just go!
Mostly I think having a toddler is a bit like a newborn, in that you might need to just put your head down and push through, however there are definitely more tools in the arsenal to keep them occupied now.
Amitriptyline is a tricyclic antidepressant that, when taken at a lower dose, can help with the sleep disorder and the pain associated with Fibromyalgia. I had been on it for nearly 10 years, since before I was diagnosed.
Struggling with restless nights (losing 50-70 minutes a night to awake/restless times), I asked my doctor what else may help and he suggested I increase my dosage. But I didn’t want to do this.
I also wanted to be sure it worked, I had a fear of being stuck on it forever, without really knowing it worked. It was also a scary proposition to go off it and not sleep.
I sucked up the fear and started my experiment in November 2015 and tapered off by 5mg at a time. In the reductions from 50mg down to 30mg my sleep actually improved. But the fatigue increased, I became very fatigued and struggled to stay awake during the day.
By the time I got to 10mg at the beginning of January 2016, I was sore, sensitive and (more) exhausted. My sleep was light and it was difficult to get to sleep and back to sleep when woken.
On my first night completely off it, it took a little while to get to sleep, I slept deeply (I think, I didn’t take my Fitbit on holiday) from 12-6.30am and then my son got up. I was exhausted and sore.
As I continued it took longer and longer to get to sleep, except for the few nights when I was so miserable and exhausted I fell asleep fast and slept like the dead.
I tried 5-HTP and SleepDrops and lavender massage oil. I tried keeping the same bedtime routine, hot baths and no caffeine after lunch. I tried meditation, yoga and any pillow set up possible.
I was experiencing more wide spread pain, near constant headaches and worsening fatigue. I wasn’t coping.
I went back onto 25mg of amitriptyline and had a big sleep on the first night. And a normal sleep, albeit with a six hour block on the second night.
Within a week I was back to getting to sleep well, sleeping restlessly (mostly due to pain), but getting (a broken) eight hours. This doesn’t seem like a win, but it’s the same situation as before with half the dose of amitriptyline, which is a win. The headaches have mostly receded and the generalised, all over pain has quietened. The fatigue is more manageable.
I can only conclude that amitriptyline is working for me at the moment and I am happy enough with that. It has a valid place as the base of my wellness plan.
Five years ago I left a stressful, full-time, computer based role that I spent an hour each way on the bus commuting to. I moved back in with my family and we relocated to a warmer city.
Once here, I took up a position that was challenging and fulfilling, but sliced a third off my work day.
I had been really struggling. The pain had been building to the point that I awoke in pain, spent the day in pain and tried to sleep in pain. It dominated my life. I was so sore that it made me want to vomit.
The fatigue was another story. After a debilitating bug at university I became progressively more exhausted. By that time, four years later, I was dragging. I needed a coffee first thing in the morning, an espresso on the way to work and an energy drink in the early afternoon just to keep my eyes open.
I could do little in the weekends. On Sundays I was barely able to leave my bed.
It was only in my dreams that I thought life could get any better. I was hoping that I’d get to a point in my career where I could reduce my work hours and still afford to live. I dreamed of warmer weather, of no busses and a little four legged love to potter around home with me.
Then the opportunity came and my whole life changed.
I’ve been meditating upon the components of my whole of life change that actually made a difference.
Change One – Reduce Work Hours
I reduced my time sitting at the computer by a third. Also, by finishing at 3pm I created two hours for other things without cutting into the evening (when I’m too exhausted to function).
Change Two – Cut Commute
I drove to work, half an hour each way, no sitting on a bus trying not to vomit, fall asleep or both.
Change Three – Love
I surrounded myself with people who loved me and who I enjoyed being with.
And then I met the love of my life and the human I most cherish (my husband and son). This has perhaps been the most instrumental thing to increasing my functionality, my hope and my reason for fighting the Fibromyalgia.
Change Four – Reduction in Activity/Pacing
The amount of walking and sitting and activity required of my whole life back then caused a lot of tight, sore muscles and worsened the fatigue. I cut everything right back. This made a huge difference in the wrench tight muscles in my lower back, glutes and legs. The fatigue has reduced dramatically.
Change Five – Passion
With the reduction in work hours and a year of rest and rejuvenation, I felt able to commit to a writing course that I had always wanted to do. I created energy to follow a passion. The reduction in fatigue enabled me to take back my love of reading – I began to read voraciously.
Change Six – Exercise
I met my four legged love (Coop the dog) and embarked upon a gentle exercise plan. I worked my way up from a meandering 15 minute block to an average 30 minute walk per day plus 20 minutes of Pilates three times per week. After the baby this changed, but exercise is super important.
Change Seven – Acupuncture
Quite by accident, I stumbled upon a fantastic physiotherapist who was experienced with Fibromyalgia. I found that acupuncture needles in key muscles, including neck trigger points, make a big difference for me.
Change Eight – Knowledge
With a reduction in pain and fatigue I was able to move from just surviving to living. I was able to begin researching. This one took the entirety of the last five years. With the most change happening in the last two years.
It’s still hard, I’m still in pain and I’m still exhausted. But I have enacted a heap of changes and won’t stop trying new things.
I’m living my happily ever after, Fibromyalgia and all.
Just because the things I can do must be smaller, simpler and quieter – it doesn’t mean the joy I experience must diminish.
On the contrary, I think it means that I experience my joy more potently.
I am thankful for more and more aware of my blessings.
I am joyful in the smaller, but by no means less important, things. A hug from my son, a smile from my husband, a helping hand from my brother, a word of kindness…the list goes on.
My hobbies had to become flexible and gentle, but I prioritise them. I always have time to read, write, colour or scrapbook a little.
I find joy in nature, animals, babies, pretty books, and accomplishments (however small).
Yes, my life must seem smaller to those with normal energy levels. But it is abundantly joy-full (despite the grief and pain and fatigue).
When I chose to focus on what I can do, rather than what I can’t, I am choosing joy. I hope that those in my life, and in yours, see this. I hope they can respect that it’s not always easy. Sometimes we will slip and think of all we wish to do, especially for the sake of those closest to us.
We may not have much choice about the pain and fatigue and symptoms that accompany these, but we can choose joy.
The best, biggest, most beautiful thing our closest people can do is to recognise, witness and support this.
It’s 2016! That happened quickly. There are more than a few things I’d like from this year, from the profound to the trivial. A sort of goals list. I’ve compiled them below and will come back to them throughout the year when I need a reminder of my intentions.
I’d like to challenge the perception that one must just “do their time” when they have kids, that sleep deprivation and self-denial is some sort of rite of passage.
I’d like to find a way of socialising that doesn’t involve my pain and fatigue levels spiking. We could have rocking lunch parties.
I’d like to be unashamed of my preferences and needs and wants. Especially when it’s contrary to those around me.
I’d like to stop feeling guilty for what I’m not doing for my family’s sake. Especially when I’m already suffering the consequences of overdoing it for their sake. I’m always going to feel bad when I hold them back, but it costs me so much more when I push myself too far than it does for them to compromise. Which leads to the next one:
I’d like to get a better balance of overdoing it and not pushing it (in the right direction) enough. Enacting my cost/benefit analyses better.
I’d like to create a toolbox of options to help me sleep well. This doesn’t include permanent medicine, if I can help it, I plan to be off amitriptyline by next week.
I’d like to lose a few kilograms and increase my exercise tolerance.
I’d like to go to Fiji. This is a few hours of flight time from here and a different climate, a toe in the water for further afield.
I’d like a regular date night with my husband. This has been an aim since we were married, but between his shift work, the baby and other commitments, it gets shoved aside too easily.
I’d like to get my B12 and iron levels to a better level.
I’d like to keep learning.
The list isn’t exhaustive, but enough to keep me moving in the right direction. Do others have a similar list? What sort of things are on it?
No Type “yoga for Fibromyalgia” into Google and you will find a wealth of information trails to follow.
Countless blogs and articles cover the benefits of yoga, meditation and mindfulness for people with Fibromyalgia.
The crossover of yoga into the Western world has resulted in a more mainstream practice and scientific research backing up what practitioners have known for years.
There’s even research that has found encouraging correlations between regular yoga practice and decreases in pain, fatigue and sleep problems.
The Yoga for Fibromyalgia Podcast Video
The yoga for those with Fibromyalgia is relatively relaxing and breath-focused. Restorative yoga is highly recommended.
A sequence I created with a yoga instructor has given me the basis for regular practice, with modifications for days where I haven’t the energy or pain levels to cope with a full sequence and for days when I feel I can push a little further.
I have some gentle, restorative poses that I enact naturally. Especially legs on a chair and child’s pose.
After more than a decade of learning to live well with Fibromyalgia, perhaps the most valuable learning I possess is the ability to tune in to my body. I am constantly analysing what works, what doesn’t, what’s causing what pain, what helps which body parts.
I bring this into my yoga journey, which has had ebbs and flows over the amount of time I’ve dealt with the pain.
This article is a free downloadable PDF in my Resources page. Sign up here to find it.
The value of yoga for a body with pain and fatigue can be found in:
The awareness of what you are doing with your body in each pose, consciously engaging the correct muscles, taking the correct stretch or benefit on offer.
The basis of the breath. Breathing is key to yoga and to accessing the parasympathetic nervous system. Even the stretches encourage full use of the breath, offering relaxation benefits to stretches.
The invitation to be outside of usual mind chatter. It’s so easy to be lost in the movement, the breath and the experience of the pose.
The gentle strengthening. A favoured pose, Downward Facing Dog utilises all the key muscle groups.
The ease of fitting practice in. Some days it can be 20 minutes on the mat, engaged in a flowing sequence. Others it can be a few key stretches in snippets of minutes. On yet others it can be one restorative pose for 10 minutes. Corpse pose can be used when sleep is being elusive, with or without a body scan relaxation.
The practice of yoga includes many options and I definitely make use of the tools it offers.
I have been trying to fit Yoga Nidra in more often. I have been struggling with sleep for various reasons and my son has been getting up early and I believe the 20 minute sessions I manage to fit in really help. The other day my fatigue levels were around 5/10 for the rest of the afternoon! Here’s the YouTube video I’ve been using.
My ideal yoga practice would look like this:
Sun salutations first thing, gentle yogic stretches at work, yoga nidra after work and legs on the chair pose in the evening. Or any one of these in a day. I never do all of them.
Perhaps one of the best parts of yoga for Fibromyalgia, is that you can fine tune it to your experience, your day, your mood. If the fatigue is bad and post exertion malaise has been plaguing you, you can choose a few poses and take breaks. If a particular body part has been upset, you can gently stretch all the muscles around it to free it up. If you’re desperate for a break from your mind and it’s constant noise, you can do Yoga Nidra and let the voice take over for a time.
Has anyone else found benefit from yoga practice or parts of it?
I’m so into yoga for Fibromyalgia that I have created a lot of resources about it:
After declaring war on my sleeplessness, I have formulated a new series of Tiny Missions to attempt to get some sleep. To get 8-9 unbroken hours per night with as few restless/awake periods as possible.
Recently, I have tried chamomile tea, SleepDrops and altering the time I take my amitriptyline in order to see if I can effect better sleep.
Through my observations I have managed to learn that my neck tends to be what wakes me up and keeps me restless. So it’s part sleep, part pain that make sleep so elusive.
Having heard personal reviews from people in a Facebook group and coming across research in support of the use of melatonin in Fibromyalgia, I decided to give it a try:
“Melatonin has been reported to improve sleep, severity of pain, tender point count, and global physician assessment in patients suffering from fibromyalgia. One commentary describes how melatonin 6 mg was given to 4 patients with fibromyalgia. After 15 days of treatment, patients reported normal sleep and a reduction in pain. At this time, hypnotics were withdrawn. Other medications such as analgesics and antidepressants were withdrawn after 30 days. They continued to report normal sleep patterns, lack of pain and fatigue and improvements in behavioral symptoms, such as depression.”
On the first night I took 3mg of melatonin in addition to my usual amitriptyline dose. It was a pretty positive start to this experiment! I achieved 8.5 hours of sleep, with only 30 minutes wasted on awake/restless times. Both significant awake times were my husband’s fault. I felt like I slept soundly, so was surprised at the presence of any restless times. And while there were – I managed a few blocks of sleep long enough to be a full sleep cycle! I woke at 630 and was unable to get back to sleep, but unlike usual occurrences, I’d managed to get enough sleep already.
Night two was not as good as I hoped after such a good first night. My neck caused me to be quite restless until 4 when my husband woke me when he got up for the rugby final. I was stuck awake and in a lot of pain. I wonder if the melatonin wears off making it harder to get back to sleep when woken. It was a miserable morning.
Night three made me acknowledge that my sleep cannot get better until I can manage my neck. I had a few blocks of one or so hours sleep, but still lost an hour to awake/restless times. I felt a bit heavy in the head and didn’t want to get up. But otherwise quite relaxed (apart from the neck).
The fourth night was somewhat better. I had a five hour block with very few restless lines in it! My neck was very stiff and sore after this though, it took 15 minutes of trigger point massage to get back to sleep. My pain level in my neck was 7/10 when I woke at 630 and I felt extremely groggy.
The feeling of having slept soundly is a very nice one. On the fifth night I woke, earlier again, to a feeling of having slept and my neck wasn’t super tight, it was about a point below the usual first thing pain levels. My Fitbit sleep chart showed a block of four hours sleep and a block of three hours with only 45 minutes restless/awake in total. It did take half an hour to feel less foggy and be able to get up, but it was quite a relaxed feeling.
After a few nights of my son and a few other external factors interrupting my sleep, I was not feeling well. However there were continued periods of more thorough restful sleep spots – 2-4 hours of almost complete rest.
My sleep deteriorated over several nights, but I persevered for a few more nights, really wanting to see if I’d adjust, but I had to realise that sleep is paramount.
After 12 nights of increasing pain and fatigue, I checked with the pharmacist and agreed to reduce the melatonin to 1.5mg and leave the amitriptyline as it was in order to try and stabilise.
After two further nights of greatly interrupted sleep on 1.5mg, and days of headaches and extra tension, I took a break from the melatonin.
The first night off melatonin and I had a seven hour block of sleep! There was only 15 minutes awake/restless. I managed eight hours total. One thing that I did was have my husband help me to stretch my neck, so it felt less compacted, that made a big difference.
It was a worthwhile experiment, but, for me, melatonin is best saved for a once in a while sleep help and only for a couple of days.