If you have read through my blog a little, you will see I have found meditation to be immeasurably useful. Especially in my second pregnancy.
The thought of furthering my meditation practice was a highly appealing one. In addition, receiving some assistance after doing this (mostly) alone for most of my life, was a nice emotional boost.
Having a tool that can help my body and mind relax so thoroughly has been a lifesaver. I have spent many many hours miserable, exhausted, sore and wishing I could sleep. When Nu was small and I was desperate for sleep, my body still refused to nap. And when I lay down, exhausted, hoping I’d pass out, I’d not only not sleep but become upset that I couldn’t. Now I can lie down for 15, 20, 40 or 45 minutes, depending on the mediation I choose, and feel rested and calm. Sometimes I fall asleep for 10 minutes at the end. This is one tool I seek to utilise every day.
In addition to this, I have found, through biofeedback therapy that I am able to effect my central nervous system through my meditation. As a person with Fibromyalgia, a central nervous system disorder, my parasympathetic nervous system needs some support. The emerging research around heart-rate variability is shedding light on just how important teaching our parasympathetic to activate is.
My two plus years of practice has made a big difference. Through deep breathing, visualisation and meditation I am able to activate my parasympathetic system (rest and digest) which I believe leads to less pain and more energy. I am definitely in a better place than I was prior to beginning my meditation practice.
So when I was offered biofeedback therapy with a health psychologist at the pain clinic after a non-event follow up with a pain specialist, I jumped at the chance.
A biofeedback therapy session involves having a heart-rate monitor placed on your thumb that sends your heart-rate to a laptop. The newer systems have fancy graphs and many things to look at, at it’s simplest, it provides beeps to let you know how high or low your heart-rate is.
In two sessions I tried two types of guided meditations led by the health psychologist and employed deep breathing and visualisation on my own. I was able to conquer the medium setting on the machine (apparently they don’t usually tell people with chronic pain that there are higher settings than low because without practice it can be very difficult).
I do need to practice relaxing my shoulders and neck as my heart-rate obviously kicked up when we got to those parts in the relaxation meditation. This is unsurprising as these parts are tight and sore all day, every day. A physio can make them relax a little through neck tractions and acupuncture needles in key points, heat can help too, but nothing makes them feel nice. So this is my homework, I’ll keep working on visualising and relaxing these body parts.
Biofeedback therapy has provided a useful check in with how my meditation practice is going and provided some areas to work on. I feel so empowered to have a tool that can not only initiate short term relief, but has long term effects (which are only just starting to be researched).
Has anyone else had experience with biofeedback therapy? Does anyone else find meditation to be so helpful?
Like many areas of living with Fibromyalgia, I have found there to be little information on nursing with Fibromyalgia.
There are a few articles, like this one on Fibromyalgia Symptoms that mentions research but provides no links, “Numerous studies have been done evaluating how fibromyalgia influences breastfeeding. These studies all indicate that it is very hard to breastfeed with fibromyalgia.”
The Fibromyalgia Health Center on WebMD posted an article in 2004 referencing a new study about nursing with Fibromyalgia. This study was very small, with just nine mothers included:
“All nine women felt that they were not successful in their attempts to breastfeed, and felt frustrated,” Schaefer writes. Difficulties included muscle soreness, pain, and stiffness; fatigue; a perceived shortage of breast milk; and sore nipples.”
The article lists a few tips from the study which includes good nutrition, proper rest and paying attention to where and how you are nursing.
Please do remember that we are all unique, how we experience fibromyalgia and how we experience pregnancy or nursing. My story will not reflect yours. Before I give you my experiences, I’d like to show you some information from a survey I undertook when I was writing my book Pregnancy and Fibromyalgia.
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In response to the question, did you manage to nurse? 40% responded that they did for 12 months or more! 20% managed for both 12 month and 6 month periods (that’s 40% for 6-12 months!). 15% didn’t manage to nurse. 5% exclusively expressed. There were 20 respondents, so the sample size was small, but these are encouraging results.
Some advice from a respondent about nursing:
“The two hardest things for me have been lack of sleep, and being forced to sit in the same position for long periods of time while nursing, or while my son slept. I kept five different pillows on the couch, and used them to prop myself and him up at every angle. Really helped.”
Having had three children now, I thought I would share my experience. As with all areas of this illness, my experience may not be the same as another’s with Fibromyalgia, so my difficulties do not translate to all women with Fibromyalgia.
I found nursing extremely painful with my first two children, I had cracked and sore nipples from the second day cluster feeding with both babies. Both times, it took a long time for them to recover. Expressing was less painful, but still resulted in sore breasts.
The differences in situations were extreme.
With Nu, we found he was excessively windy and by week two we were going back and forward to doctors at the after hours centre. At last, at week three, we were sent to the hospital and there they found that he had pyloric stenosis – a thickened sphincter that wouldn’t let food out of the stomach to be digested, so it was forced back up and out of his mouth in projectile vomiting. After several days in hospital and a small operation, we came home and found that he doubled the amount he was taking at each feed. My supply couldn’t keep up, despite pumping three hourly the entire time he was in the hospital, my supply decreased in real numbers and relative numbers. I managed to keep him exclusively on breast milk until eight weeks. At this point whenever it was time to express, I would cry, so I knew it was time to finish up. I was just tired and sore and Nu was not a very settled baby and so cried the entire time I tried to express.
I was so relieved when parenting no longer needed to include my breasts. I am proud that I managed to give him such a good start in life, but I also wish I had given up sooner, but the pressure on mothers to breastfeed is enormous, even my expressing rather than feeding directly was seen as failure. My doctor and my Plunket Nurse were both supportive as they understood the Fibromyalgia and how hard I had tried.
With W I managed to persevere a little longer. My right breast got so sore and cracked from the second day cluster feeding that when I first tried to express, I expressed blood in the milk, it was a frightening sight! I persevered with the one side for another week before that became too sore (this guy is a rough feeder and liked to pull away with it clenched between his gums). I expressed four hourly during the day and once in the middle of the night (that was hard to leave baby sleeping after giving him a bottle and stay awake). My supply stayed static no matter what I did to try to increase it, so by week four, I was only just producing enough from both breasts for one feed. Luckily I had a lot of frozen milk from the first weeks of expressing.
This time I knew it didn’t have to be all or nothing (this is an important message for all mamas, you can mix feed!), I had more knowledge and therefore more power. I also ignored any messages of my being deficient or not trying hard enough. I managed to add in a physical feed each evening after he had spent the previous few hours having more regular bottles in his nightly cluster feed, this meant I didn’t have to worry about him not getting enough and he got some comfort from it at the end of a long day. It hurt, but swapping which breast I gave him each night helped me to cope. I worked with my midwife to reduce to a few feeds a day of my milk and add in formula for the shortfall. My plan was to give him whatever breast milk I could, for as long as I could.
As we know, plans do not always work out. Little W developed reflux and vomited my milk and got very sore. Through long weeks of trial and error we found that I could feed him directly (my measly 40 ml or so) followed immediately by a bottle of thickened formula, reducing the vomiting to spills and the gas pains greatly decreased. At seven weeks I was still managing to mix feed, with the miniscule supply I produced.
Due to the very different positions in my health and a lot more knowledge and confidence, I believe it was slightly easier the second time around. However, by 12 weeks my supply had completely dried up. I was really happy that I had been able to provide him with these vital nutrients for that long. I was also happy to not have to deal with expressing, feeding and bottles – it had begun to feel like my whole life revolved around his feeding. And at this time my life turned to revolving around his sleep, or lack of!
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One thing that helped me both times was my breast-pump. I used the Unimom Hospital Grade Double Expressing Machine (not currently available in US or UK Amazon) for these two. With my third, I have decided that I will not be able to express more than once or twice a day given that I have two other children four and under so I have the Avent Electric Pump (single, but you can get double) on my Amazon Baby Registry. FYI: 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 (I did).
I also only used Avent bottles because I liked the teat shape (it mimics the breast-shape) and found that helped my boys to avoid nipple confusion. We introduced bottles of expressed milk very early, so please don’t worry when people talk about waiting until breastfeeding is “fully established” – because of all the women I have heard of who have done this, they never got their baby to take a bottle. This may be alright for you, but for me, I needed that ability to leave someone else to do a feed.
Baby Three (2019 update)
I have finally got a more successful story for you! After a much more comfortable pregnancy (even with severe pelvis issues that resulted in my being put off work at week 23 and on crutches and is still causing trouble at nine months postpartum) nursing was not such a kick in the pants. I had gotten my health into a much better place prior to pregnancy and reaped the rewards in pregnancy and nursing. This was due to low dose naltrexone and my ability to sleep in more than one hour blocks. You can find my post here about LDN.
My doctor and I agreed I would stay on it because the potential risks were minimal and the benefit of my sleeping and managing my pain were astounding. That was a personal decision, made by reading the research, listening to other women’s experiences and talking with my doctor.
We did have a bumpy start with the nursing. For three months we battled thrush and it was so distressing as in those early months every time I nursed I would have to stomp my feet and grit my teeth with the initial pain. I had to really push for people to take me seriously and realise it was not just me (or the fibromyalgia). So please do explore continued pain when breastfeeding. If I weren’t so committed to my personal goal of three months (at that stage) I would definitely have given up in those early weeks. I also got mastitis. I felt suddenly worse and I thought the fibromyalgia was just catching up with me, thankfully I went to the doctor and realised I had a bad case and needed antibiotics immediately.
We got through all of this and at about four months I realised that there was no trepidation about having to feed him and no pain! We nursed exclusively until he started solids and were still going at 9.5 months (August 2019). I have no end date in mind. We will see how it goes.
My tips for nursing with Fibromyalgia are what most nursing women are told:
Try to rest as much as you can
Eat as well as you can
Drink lots of water
Make yourself as comfortable as possible when you feed
Know that whatever you manage to give your baby is awesome and that you cannot fail. You will be a great mama whether you feed physically, by expressed breast milk or by formula. A fed baby and a happy mama are both minimum requirements. (Your well being counts as much as baby’s and don’t let anyone tell you otherwise!)
Advocate for yourself – check out any pain (do not just chalk it up to the fibromyalgia – sure, it might be, but check it out)
I’d love to hear about your experiences with nursing with Fibromaylgia, if only so that others have something to read when they Google about it.
I love research and reading about potential treatments for fighting Fibromyalgia. But there are so many options and so many variabilities that it’s hard to have a sense of what may work for me. I have managed to glean a list of what works for me and of things I would like to try. There are also some great blog posts outlining what other chronic illness fighters do. In this post, I wanted to share a few examples.
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 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.
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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:
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.
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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:
It can be handy to have an unreliable memory. I forget just how bad it can get when I have a flare up.
This morning, I woke up after a night of extremely restless sleep (after a string of similar nights) with very tight muscles in my neck and upper back, the pressure wrenching my trigger points tighter. I felt on the verge of vomiting all morning.
But instead of getting lost in the pain, today I was able to put small coping mechanisms into place.
I thought I would share them just in case others fall into a quiet panic when they flare up too.
The first thing I did wastake appropriate medicine. Unfortunately I did force myself to go to work because I had an important workshop. When I found that it had been cancelled I took the opportunity to go home. It was a good call.
The second thing I did was lie down with myheatpackwith my legs up on the couch in half legs on the chair pose.
After that I went to bed and did a 20 minute Yoga Nidra meditation sequence. Then I felt ready to quietly continue my day, still in a lot of pain but able to cope.
I’m so grateful that I have these mechanisms in place, so that I know what to do when I get so sore that I could fall down and not get up.
Opportunities to give up when you have Fibromyalgia come often, but with them opportunities to fight arise also.
Starting a new job is both a time of increased fatigue and an opportunity to begin good habits for managing yourself.
In my first few weeks of a new job that bears more responsibility and has required a lot of fast learning, the fatigue levels have increased.
I have been experiencing some of the old brain fog side effects such as loosing words (they’re right there but you just can’t reach them -so frustrating and really obvious!), muddling things up and just plain forgetting things.
Luckily there are a few ways to work with this:
Plan. I make sure I have a master list of the key projects, a date schedule for key tasks/deadlines and a daily to-do list. I work off this through the day and spend 10 minutes before I leave writing the next day’s to-do list.
Prioritise. I have had a few pressing projects that I didn’t feel I could prioritise yet in hindsight I see one that could have waited a little longer!
Rest. This is a hard one with the baby, my morning is rushed and there isn’t much time for an afternoon rest. The weeks that my husband is on nightshift I try to take advantage and have him pick up baby so I can rush home and actually lie down with the heatpack. The weeks he is working until 6pm I just have to try to grab snippets of time to sit down.
Sleep. Sleep is a problem for most people with Fibromyalgia, and it is a big struggle for me. If I’m lucky, I can spend about 9.5 hours in bed and achieve 8-8.5 hours of sleep. I have been making a point of getting to bed by 9.30 as often as I can to maximise sleep opportunity. I have found a relaxation technique where I imagine warmth and relaxation creeping slowly throughout my body starting at my toes, I rarely get to my head, and I find it really useful when I’m starting to get frustrated by my awakeness or discomfort.
Exercise. It can slip when you’re exhausted, learning a new routine and it’s cold. My knee problem hasn’t helped. However, even a 15 minute walk is counted as success at the moment. Keep it managable and positive (build yourself up for what you do, don’t beat yourself up for what you don’t.)
My boy is 15 months old! I’m shocked at his growth. It seems like he is mastering new skills daily. He will babble to himself while turning the pages of his favourite books. He gets his shoes when we ask for them. His eating has finally gotten better, he is eating a lot more and more widely.
For better or for worse, there have been more than a few alarming signs that he’s turned into a high-spirited toddler:
*The plank when we try to put him into the pushchair or carseat
*The tantrum when he doesn’t get something he wants
*Only one nap
*Feeding time resembles the zoo more than a civilised dinner table – there is food on the floor, wall, table and down my sleeve
*He has more energy than me
*Toys hold appeal for about 30 seconds
*He gets bored when we go for a walk with the pushchair
*He is super excited by couch cushions on the floor
Here are some things I’ve found to help cope with a (super) busy toddler:
*Encourage physical activity – let them walk outside, take them to a park or find a cafe with a play area suitable for younger toddlers. My guy loves it when I put the couch cushions on the floor, he will throw himself on them and roll around happily.
*Take multiple things to keep hands busy when you have to go out (walks, lunches, supermarket) from food to toys.
*Preempt bad behaviour -notice what sets them off and avoid it, plan ahead and don’t give in to tantrums, even in public (we had a situation in the chemist but I held my ground and let people look while I strapped him in and distracted him).
*Have a safe zone, our lounge is almost “no free”, he has plenty of toys and there is little damage he can do while I go to the bathroom (if he doesn’t come too!) etc.
*Sensory play can be helpful. Water, bubbles, squishy balls, anything to utilise the senses.
*Take rest for yourself. It’s tempting (read: I always do) to squish the chores or things you need to get done into that blessed one hour or so of nap, but you’ll feel nicer if you rest. I also like to spend some time on the floor, letting him play around, while I read – mental time out.
I have come so far in trying to live well with fibromyalgia, but sometimes I get stuck and don’t look after myself the way I should. Here are a few lessons I need to learn:
Don’t be too proud to take pain relief. Sometimes ibuprofen can kick a neck ache that’s evolving into a heachache, dizziness and nausea, in the butt. I keep tying the concept of “surviving without pain relief” to the concept of “living well with fibromyalgia”. Not so, I shouldn’t have to cope with pain when there is help.
Don’t be afraid to stand up for yourself. When someone says “only” and you feel it’s too much, tell them.
Incorporate rest into the day. Every day. It makes the day nicer.
Sometimes, do the “selfish” thing. The other night, I was fighting my baby to sleep (he had gotten overtired) and I was sore and overwhelmed, so I took a five minute shower. When I came out, he was asleep and I felt better!
Always experiment, always hope, but don’t get sucked into the promise of a cure.