I hope that by improving your sleep, managing pain as well as possible and meditating that fatigue is also reduced. In this part we will discuss some extra energy boosters, energy saving pacing and supplements that may help. Severe, ongoing fatigue issues that are not mitigated by good sleep and management of pain will need a real partnership with a doctor to work through.
PACING FOR FIBROMYALGIA
Pacing simply means to alternate rest with activity in a manner congruent with your pain and energy levels.
Before I had begun my journey to wellness, when I was still just trying to cope with being a young woman in terrible levels of pain and fatigue, I had this glimmer of hope in the form of reduced work hours. I had begun to conceive of the idea of pacing and boundaries before I knew anything else. Reducing my work hours to ¾ time and cutting the two hours of commuting each day was the beginning of my wellness journey and such a vital step.
HOW TO ASSESS YOUR BOUNDARIES AND IMPLEMENT WISE PACING?
Write it down!
Write down what you do each day and track your pain and fatigue levels – look for the patterns over a two week period.
Listen to what your body is telling you. Grab an empty piece of paper and a pen and free write about your ideal day, see what your intuition is telling you.
Or, to start, take what you can get. Perhaps the first step you can make is to drop one afternoon or one day off work? Start there!
THE CFS/FIBROMYALGIA RATING SCALE
For a long time, I prided myself on being a 60 on the CFS/Fibromyalgia Rating Scale, “Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms” despite pain levels more in line with a 50, “able to do 4-5 hours a day of work or similar activity at home. Daily rest required. Symptoms mostly moderate.” (My italics)
I pushed myself to 6-7 hours per day minimum and suffered moderate symptoms. I had missed the key as suggested in this article on understanding our situation: “What is the highest level of functioning I can sustain without intensifying my symptoms?” (My italics) If my pain is at a moderate level, then I should not be striving to work the hours of a person with more mild symptoms, especially given that I go home to small children as opposed to being able to rest. You need to take into account your symptom level and your situation.
These articles are from the website CFIDs and Fibromyalgia Self-Help. They run a free course that takes the idea of pacing into more detail.
SUPPLEMENTS FOR FATIGUE AND ENERGY
See this blog post for more information about supplements for Fibromyalgia energy.
There are a multitude of nursery items and almost as many articles about which ones are necessary. Here’s my recommendations for a fibro parent, or really, any parent!
Some of my links are affiliate links, I receive compensation at no extra cost to you if you purchase using these links. I never promote anything I don’t 100% support myself.
Below are some the items I found indispensable for a mama with Fibromyalgia:
Cot. With an easy to put up and down side, or an opening in the front.
Bassinet. We tried a different option with each baby. Both were easy to move and that was very helpful. I wished for a beside bassinet with fold down side so I didn’t have to get in and out of bed so much and to make co-sleeping a safe option. This 3-in-1 is a great idea, it is a bedside crib and a pack and play.
Changing table. We weren’t going to buy one, I had thought that I could get by without one. But, being given one has been a lifesaver. I have everything I need to change them on the shelf and can lay them down at the right height for changing. You could even use a set of drawers that are the right height with a change mat on the top and the top drawer full of your supplies.
A rocking chair. My husband and I clashed about this one. He didn’t think it was necessary. I believed with all my heart that it was. I ended up getting a second hand one and it has been so useful. For nursing, expressing or just rocking when you’re too tired to stand, it was worth it. Nursing for a mama with Fibromyalgia can be tricky, so a comfortable place to nurse is a good idea – check out my post on nursing with Fibromyalgia here.
Pushchair. We loved the City Mini Baby Jogger (we have it in black). I found it very easy to steer and lightweight to put up and down. You can also get the universal baby jogger parent console for phones and drink bottles, this goes over the handle. I have recommended this pushchair to everyone, but especially fibro parents as it is so easy to lift, put up and down and steer. I am so sad that we got the last of the old model which means the handle is shorter so we can’t employ the glider board – it would have gotten so much use as each time we had a new baby the older one was not quite old enough to walk everywhere.
Infant capsule seat with folding pushchair frame. We didn’t get one before Noah was born because I thought it would be too heavy for me to lift. I was right, very quickly it became a real burden to carry. However, with the frame and the fact that Noah was not a good napper, it turned out to be invaluable. At some stage early on I noticed that he was tired by about 9 in the morning, but struggled to get to sleep. So we began leaving the house (rain or shine) either via the car or walking. He learned to nap this way. The seat and frame meant that I could seamlessly move from car to shops to car to home easily.
A Boppy pillow/feeding pillow. I loved this, it was so useful for nursing and to let the baby’s lie down and watch the world go by. It was a real lifesaver when the boys were small to sit them on it and let them watch me potter around the living area. It was also great for Wyatt with his reflux, he took some of his naps on it. We always used it with supervision because there is a chance of baby slipping down and cutting their airway off by pushing their chin forward.
A front pack. This is a difficult one. On the one hand, you are going to hold the weight anyway, so why not distribute it more evenly. On the other, from about six months my little guys became too heavy for my shoulders to bear for too long. I absolutely loved having the Boba wrap with number three and I was so sad that I hadn’t heard of it for the first two. For more about baby wearing see this post.
I loved the Gemini Beco – it goes from 7 pounds/3kg, which both of my babies started off at!
A bath seat. This has meant that I don’t have to hold their weight while they were in the bath and it’s far more easy to wash them.
Jolly Jumper. We used this once his neck was strong, at about four months. This was lovely for me when he was super fussy and I was super tired. It gave me ten minutes of time out from holding him.
One thing they can use to pull themselves up with. When he started to develop the ability to pull himself up, we got a table type toy where he can stand and play. This is a useful thing to let them stand without you holding them.
Baby seat. This was something I wanted but didn’t purchase until he was already sitting on his own. It would have been useful before this as he loved to sit and see so it could have bought me more non holding time. Now we use it, strapped to a chair as his highchair. We can also take it when we go away. He will be able to use this until he’s tall enough to sit on a chair at the table, without the space a highchair takes.
Bouncinette/Electronic Rocker. This was one of those things that buys you some non holding time that you so desperately need when they’re clingy or your sore or you need to get stuff done.
Breast pump. This was a lifesaver for me with nursing my children. I had to exclusively express for my first and then expressed a fair amount for my second. For my third, I have chosen the Avent breast pump in the above link because I will only express once or twice a day – with three children four years old and under, I won’t have the ability or energy to express more. Our favourite bottles were Avent too – because the teats were shaped more like breasts and therefore helped us to avoid nipple confusion.
Something to make baby food with. My nutribullet has been a lifesaver for the puree stage. It is so easy to steam up some fruit and vegetables (say, silverbeet, apple and kumara) and then puree it in the nutribullet with some of the cooking water. I also use it for my plant based milks too so it is far more than just a baby essential.
Did you know that Amazon has a baby registry? You can sign up here Shop Amazon – Create an Amazon Baby Registry It’s basically a mobile registry (available anywhere!)and you will be eligible for discounts and rewards. If you’re going to purchase some of your items from Amazon, you may as well sign up.
Is there anything else to add? Was there one awesome thing you would not do without?
For more information about pregnancy and Fibromyalgia:
Some of my links are affiliate links, I may receive compensation at no extra cost to you if you purchase using these links. I never promote anything I don’t 100% support myself.
A lot of protocols/treatment plans/advice for Fibromyalgia advise starting with a high quality multivitamin.
The Energy Revitalization Formula is a high potency multivitamin that focuses on the key vitamins, minerals and amino acids that research shows people with Fibromyalgia can benefit from. You can find the full list of ingredients here
It costs approximately $30 for one to two months supply – I take half a dose as I find it difficult to get a whole dose down. It is jam packed with nutrients. I get mine from evitamins.com as it is difficult to get these things shipped to New Zealand.
Dr Jacob Teitelbaum is one of a few prominent physicians who treat Fibromyalgia and Chronic Fatigue Syndrome. He wrote From Fatigued to Fantastic! And has developed the SHINE protocol to help manage the illnesses. An important part of the SHINE protocol is nutrition. Based on research, Dr T found that people with Fibromyalgia/Chronic Fatigue Syndrome tend to be short on some key nutrients, including B complex, vitamin C and D and magnesium. http://vitality101.com/health-a-z/simplifying-nutritional-support-in-cfs-and-fibromyalgia-2015-10
He has written an article on coping with pregnancy and suggests this is suitable to continue with for pregnancy. The doctor will probably recommend iodine, folic acid and iron to make up the full schedule. http://www.ei-resource.org/expert-columns/dr-jacob-teitelbaums-column/pregancy-in-chronic-fatigue-syndrome-and-fibromyalgia/
I am loving the combination in this supplement and will continue to take it to make the base of my nutritional plan.
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:
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?
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.
When I came across using curcumin for chronic pain, I found the specific product Curamin, I was becoming rather despondent about my neck pain and the effects it has on my life.
It felt like my neck was getting worse and progression is the closet worry of a mama with Fibromyalgia (it’s not supposed to be progressive, but it developed over a period of ten or so years before plateauing for several).
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I was curious and also wary. Nothing ever seems to give me the effect advertised, or noticeable positives.
The ingredients in Curamin
Curamin “is a blend of all natural ingredients such as DLPA, boswellia and nattokinase which are proven anti-inflammatory compounds. DLPA boosts the effectiveness of endorphins and enkephalins (pain relievers already in the body), nattokinase boosts circulation and alleviates muscle pain by balancing fibrogren levels in the body while boswellia has been known to remove pro-inflammatory compounds.”
Dr Teitelbaum recommends it as one of his favourite 10 supplements for Fibromyalgia/Chronic Fatigue Syndrome.
From the first day I noticed a change in my neck, it brought the pain levels down a point on the pain scale.
It also helped me in the night. Recently my neck was becoming so bad that I woke several times and needed to change pillows multiple times. I was waking with extreme stiffness causing severe headaches.
The Curamin enabled me to get better blocks of sleep and this has translated into more energy – it lasts me longer into the day.
I still, however, started to get sleepy very early. I have learnt that there’s a difference between fatigue and sleepiness.
I have revelled in feeling just a bit less soul-crushingly fatigued.
The true test for the difference it makes came when I ran out before the new bottle arrived, I slept poorly (the restless/awake time shot back up to an hour with less blocks of sleep), felt super exhausted upon waking and my neck pain went up a level.
It is so nice to have found something that helps. Unfortunately, neither curcumin nor boswellia is recommended for pregnancy or breastfeeding, so mamas who are going down that path will have to give it up for a time.
For me, the cost is worth the effect. I completely understand that nothing works for everyone, but, if you’re not allergic to these ingredients, then it may be worth a try.
Curamed is curcumin without the three bonus ingredients (DLPA, boswellia and nattokinase).
Update August 2019
Having been pregnant and nursing for the past 1.5 years I have not been able to take this (turmeric in food doses is all that is recommended). I have been taking MSM, you can check out my post about this here.
Has anyone else tried this? Or other things that have a similar effect?
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.
By the time I was diagnosed, I had already been on amitriptyline (a tricyclic antidepressant taken at a lower dose to help with sleep and pain) for a couple of years. A doctor prescribed it for my extreme struggle with sleep.
So I already had a base when I was diagnosed, which was lucky because I got no other information, advice or help when I got the word.
If I could go back in time and help myself out, here’s what I would say:
Research, research, research. Back then, there wasn’t much information around, but there was some. Our own research is what will help us the most. It will eventually lead to the best pain management options which are:
Acupuncture by a physiotherapist
Panadol and nurofen taken together for a few doses
Trigger point release, both for yourself and by a physiotherapist or massage therapist
Meditation – a guided meditation called Yoga Nidra will be one of the most amazing things you will find, much too late to benefit from it in the miserable “full time work” years or the early baby days.
Nutritional supplementation – high dose magnesium is super important. Along with iron supplementation – the doctor will say it’s “normal” but it’s at the end of a super long range – aim for ferritin levels of 60. Research and experiment. There’s D Ribose, Acetyl L Carnitine, COQ10, B complex, vitamin C and more.
Keep walking, one good thing you did was keep moving. Just go a little more easy, it’ll reduce the tightness in the muscles. Pilates and yoga are king.
Some other key things that help:
Learning to rest.
Believe in yourself, sometimes you’ll be the only one and that’s OK.
Don’t let yourself fall down the rabbit hole, allow yourself time for grief and then carry on.
Always hope for better, it’s attainable.
So this is what I would tell myself. Perhaps it is of some use to those who have been recently diagnosed.
Chronic illness is like having an invisible box surrounding your life. Noone can see the confines, not even you at times. Yet they are all too present. Constricting when you least expect it. Never seeming to widen.
You can see others and what they can do, but you can’t keep up. And they can’t see why you can’t.
Your significant other’s (and children’s) life becomes constricted also. So that you must fight your own box and theirs.
Your guilt over the effect of your illness on them can eclipse even your grief of what illness has taken from you.
It can be a double sentence.
The only way out is through. Some days are harder than others, but you have to keep going. Because there’s no other way, and noone can truly help. It’s you, your body and God.
When you’re having a tough day (week/year/life) it’s useful to rememeber to seek fellowship (I belong to two fantastic Facebook groups and have a few key people) and gratitude. Try to remember the things you are thankful for. Because pain and fatigue and fog and headaches (the list goes on) cannot take that from you.
I’m thankful for my son, my husband, my family, my dog, my home. I pray these will never be taken from me by my invisible box. That my people will bear with me and endeavour to help me reach outside of the box.