If you love reading, like me, you can try Amazon Kindle Unlimited! Just sign up here Kindle Unlimited Membership Plans. It’s also available for those of us who use Amazon.com.au *squee*.
If audio books are more your speed, as they are for me with three little ones, you know you can get a free trial of Audible on Amazon here. I’ve recently started reading a lot more audio books as the hands free option is far easier to access with the wee ones. You will get access to two audio books, plus two Audible Originals, and other cool membership options for 30 days. Cancel anytime if you don’t want the full subscription.
Find my book, which is everything I know and do to fight Fibromyalgia:
It is for anyone wanting to fight chronic pain, chronic fatigue and insomnia. Most of my recommendations are self-actionable – you make choices every single day that effect your quality of life, so you have the most power to live well with Fibromyalgia.
It will have seven modules:
Knowledge (knowledge is power)
Yoga (or gentle exercise)
Pacing and Boundaries
What you get:
Four (or more) videos
Four templates to make your own plans for pain management, sleep and things to try
Four (or more) information sheets – including my list of further reading – this is from my spreadsheet of articles, research and information about Fibromyalgia/Chronic Pain/Chronic Fatigue and Insomnia over the past five years broken down by subject!
A lot of further reading for you to follow up areas that interest you and take your learning further
The workbook with all of the lessons, information sheets and templates with space for notes.
A course is a lot of work – there is a lot of information here, so I will run this course from 1 April 2018if 10 people enroll before March 15th.
As a special offer, I will give early bird enrollments at $69 (value $125!) PLUS all early bird enrollments will receive the free bonus lesson Support.
Author’s Note: This article appeared first on The Mighty.
Here’s an excerpt from my book about what I’d do upon diagnosis, if I had a do-over.
When you are first diagnosed with a chronic illness such as Fibromyalgia or Chronic Fatigue Syndrome, your brain has rather a lot to process. If you’re buried too deep in pain and fatigue, the enormity of the challenge may not hit you immediately.
You, like me, may have been diagnosed after a long battle in which you have learnt to push through and assimilate the challenges into your life. Potentially making yourself even worse. Or you may have been struck down, as if by a lightning bolt of pain and fatigue.
Here are a few key things that we need to do when we’re diagnosed, or ready to process:
You are your advocate, medical coordinator, cheerleader and guru. You need to guide your doctor. You need to track your progress. Get a book, or open a digital file and write it up. Keep articles that you come across. Because when you’re ready you need to experiment. Your doctor can only take you so far, if they want to come on this journey with you at all.
My course You vs Fibromyalgia: Arm Yourself with Knowledge is a good start. This is a FREE five lesson eCourse to help you fight Fibromyalgia. Sign up here. This is what I wish had existed when I was diagnosed.
There are many types of treatments: medicines, supplements, alternative options, physical therapies and diets. We all have different chemical make ups, different genetics, and different triggers. This means we need to find our lifestyle that gets us as pain free and awake as possible. The complexity of this is huge, especially when you take in the fact that synergies, mixtures of multiple things, may be the solution. Your body may need a mixture of medicines, supplements, physical work and mental work.
Hit Your Lifestyle
You can’t keep going in the same way. That way didn’t work. Try to journal it out or talk it out, or whatever you do to think things through. You need to rebuild your lifestyle. Find what works for you, what your passions are (the non-negotiables of your life) and go from there. I spent a long time dreaming of working slightly less hours so that I could rest more and try to recover – and reducing my work hours was only the beginning of my journey to better wellness.
Find Your People
If there’s no one in real life, find a virtual community. You need to be exposed to new ideas and you need to be able to ask questions. There are many people struggling along with chronic illnesses sharing their journey. Just try to keep it positive. Most people would have brushes with depression/sadness when they’re in daily pain and exhaustion. Having a search through the articles written by other people with chronic illness on places like The Mighty is a good start.
Half, or sanding, sun salutations – sun salutations are my base routine when I’m doing a 10-30 minute yoga routine and this is a great half version for times when you can’t get through the whole thing.
You’re turn, what’s you’re go to for spoonie friendly yoga?
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.
I have been exploring the benefits of meditation for those with chronic illnesses recently. I am curious because Yoga Nidra, a guided meditation, makes a real difference to my day. After a 20 minute session my pain levels can drop to as low as 4/10 and decrease my fatigue levels to a similar place. The effects help me get through the busy evening period with my toddler.
It’s not easy to carve out 20 uninterrupted minutes between work and the toddler. But when I see a gap, I snatch it up.
Want more about natural options for fighting fibromyalgia?
A theory about Fibromyalgia, is that the sympathetic nervous system (fight or flight response) may be stuck in overdrive. Meditation promotes a calming of this system, allowing the parasympathetic nervous system to activate.
The benefits of meditation are probably due to 20 minutes of:
Using my heatpack on my neck
A break from noise
Complete focus on my body, accepting it as it is
Not struggling to nap, which I can’t, so using the time calmly and effectively
The body’s response to complete relaxation, allowing the sympathetic nervous system to slow down
It is a tool for well being that I keep close, it is something that transcends simple pain/fatigue relief and gives me time to focus on myself as a whole – my san culpa (mantra/goal of practice) is, “I am well; physically, spiritually and emotionally.”
And it’s vital that we don’t neglect our spiritual and emotional components of self in the quest for relief from physical issues. I feel there’s a close tie between my emotions and my pain/fatigue levels – fear or sadness have an effect on my sympathetic nervous system, which affects the body physically. So I am researching both body and mind effects on Fibromyalgia.
When you join my newsletter list you will receive access to my free resources which includes a report on Meditation for Fibromyalgia and my You vs Fibromyalgia micro course which includes a section on the central nervous system!
Meditation and Me
It took me a while to appreciate meditation, years, in fact, for me to consider giving up precious reading time for it.
Suddenly, in 2014, I read a book about mindfulness meditation, found a YouTube video of a Yoga Nidra session that I particularly liked (avoiding the spiritual/religious aspects of it) and then I was away running.
I have meditations, body scans and Yoga Nidra of varying lengths that I switch between as I like. I also use the body scan technique most nights to relax into sleep. The focus on the breath is like second nature to fall into.
Funnily enough, when I am more fatigued, I need the short and sweet practices – to avoid falling asleep and feeling groggy and gross when I wake. When I have slightly more energy (and time), I opt for longer ones. My usual best length is 20 minutes.
20 minutes seems to be a good number for me, I respond well to 20 minutes of yoga or Pilates, 20 minutes of walking and 20 minutes of meditation.
For some links to get your practice started see this post:
The last few weeks have been difficult but illuminating.
I went to the pain clinic and did some physical testing that left me with a knee flare up.
I dealt with it fairly well, but it was hard. I couldn’t walk due to the severe pain. The not walking caused my back to flare up too. The extra pain caused extra fatigue.
But I did what I do best, I coped. On the first few days I rested and took medicine as the pain was rather severe. I used the space the pain relievers bought me to do my leg strengthening exercise (essentially leg lifts focusing on engagement in my thigh – my physio gave me this specifically for the knee pain). I also used an ice pack on it as I couldn’t bear the thought of heat on it.
After a few days I went to the pool. I walked across the pool in hip/chest height water holding my son (I had no childcare, plus he loves the water!). We managed 10 times across and then soaked in the family spa. It was bliss. We have done this three times in the past two weeks.
As my knees calmed down I slowly increased the amount of incidental walking I did during the day. When that brought less pain, I walked to the shops and back (20 minutes with a break in the middle).
Eventually that led to me resuming our usual 20-30 minute walks.
Now I am still sleeping with a pillow under my legs and stretching my legs like a maniac, but my knees are better and my back is under better control.
In a nut shell here’s how I dealt with the knee flare up:
Stretching and gentle strengthening
Walking in the pool (any exercise tolerable!)
Soak in the spa
Gently resuming old activity level as pain stabilised
Interestingly, my physio doesn’t think the knee pain is just Fibro. This means I need to get it checked out to ensure it’s not actually causing damage. Exercise will almost certainly keep it in check, but once it’s sore, if it is causing damage, I may need another plan to deal with it. I will keep you posted about that!
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?
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.
Here’s a few tips I’ve gleaned in dealing with a toddler:
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 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. 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.