Biofeedback Therapy, Another Tool

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.Biofeedback Therapy

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?

What Works: A Roundup

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.
What Works-
I have written extensively about my experiments, my whole of life change and what I hope to try.
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Essentially, I have found that in order to be well (or the most well I can be) with Fibromyalgia is what any good health guidelines advocate:
  • Sleep as well as you can
  • Exercise gently
  • Eat healthily
  • Rest, meditate, pace
  • Practice safe posture on computers
  • Find your work/life balance
  • Nurture your passions
Donna from February Stars has recently written about what she is doing to counteract her three worst symptoms.
Bonnie Wagner-Stafford from BClear Writing wrote about how clean eating has helped her symptoms, including a serious gut cleanse. On the flip side of that, she posted about the six worst foods for Fibromyalgia.
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Veronique Mead writes about her top 10 Under-Utilized Tools for Treating Chronic Illness, I particularly like #5 Making Room for Resources and Pleasure, and #8 Meditating.
Donna Gregory Birch at Fed Up With Fatigue wrote about her Six Favourite Things For Fibromyalgia Relief (this blog is where I first read about low dose naltrexone, which I’m currently trying).
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Katarina Zulak at Skillfully Well and Painfully Aware wrote the Top 3 Things I Do Every Morning to Manage My Fibromyalgia, the stretches she provides are delicious!
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Hannah Radenkova at Superpooped: Adventures for the Exhausted wrote about her diet for managing ME, including a daily meal plan.
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What are some of the best ways you have found to cope with the myriad of symptoms that come with Fibromyalgia?

Fibro Mama Baby Diaries: The First Month

I fell in love the moment they put him on my chest. Despite the doctors dealing with my excessive bleeding and then stitching me up, I was lost in my son. He calmly laid on my chest and looked at me as I drank him in. fibro-mama-baby-diaries-month-one
I didn’t get that with Nu because he had been taken for some medical attention immediately.
I was blown away by these first precious moments. My boy, who I had worked so hard to meet, was here. After some time cataloguing all his fingers and toes and marvelling at this creature, we managed a full first feed. I thought things would be easier this time.
But again I found that after nearly 39 weeks of pregnancy and 32 hours of labour, breastfeeding is a real kick in the pants!
The second day cluster feeding led to a mangled nipple on one side, so I had to feed the baby from one and express from the other from day three.
It didn’t fully heal and the other side got very sore from overuse, so by week two I was expressing exclusively.
My energy levels and pain didn’t help production, so baby outgrew the amount I could produce per feed by three and a half weeks. Far from being stressed, I knew that it didn’t have to be all or nothing. I had the tools to mix feed so that he could continue to have breastmilk for as long as I could produce any.
Far from being the “easy” baby I’d hoped for after Nu and his being hospitalized for week three, W didn’t like to sleep in his Moses basket and only slept in my arms or on my husband’s chest for the first couple of weeks. By week three we did manage to get him to sleep in the basket after his last feed and until his 4am feed (when he wanted to stay with mama).
My body coped really well until both my husband and I hit the wall at three and a half weeks. Baby had a few days of extreme fussiness, hungry but gassy is not a good combination.
But I persevered with my coping mechanisms – quick meditations whenever I could, heat pack, ibuprofen, stretching and hot showers.
In addition to the Fibromyalgia, general post-birth pains and sleeplessness, I received a name for the severe low back and pelvis pain I had been experiencing: symphisis pubis disorder. Basically, my pelvis spread a little too far, probably due to the prolonged labour and having to use the stirrups. This made things difficult as I couldn’t spread my legs very far apart – no squatting, no stepping over things, keeping my legs together when getting out of bed etc. I had been so looking forward to being able to sleep on my back again, but this wasn’t possible yet. My physio suggested pelvic tilts and to see my doctor if it hadn’t gotten better by six weeks.
Nu adjusted really well to being a big brother. The sleep habits we instilled in him saved us as he slept from 7.30pm to 7am and then had a nap in the afternoon. Our constant refrain was “quieter!” As he speaks so loudly and gets very excited. He gives many kisses to baby and likes to help to feed him.
Pregnancy, labour and the first weeks seem much like rugby…You can plan all you like and utilise all the tools at your disposal, but in the end you have to put your head down and run in! I’m just super thankful for Husband and his help, because I don’t know if I could have coped without him.

Fibro Mama Tools for Managing Early Pregnancy Symptoms

fibro-mama-tools-for-early-pregnancy-1Motherhood for a person with Fibromyalgia and Chronic Fatigue Syndrome is not a short sprint, it’s an epic marathon spanning pregnancy, labour and baby’s first year. So it’s really important to get your pregnancy wellness plan underway fast.

Here are some things I have learnt for tackling the early pregnancy symptoms:

Sleep – I tried as best I could, but I had a lot back pains which made lying down difficult. I needed pain relief to get to sleep and woke often either in pain or to go to the bathroom. I had pillows to alternate and utilised brief body scans to encourage certain parts of my body to relax. I found that the Chronic Fatigue was greatly flared up and the amount of sleep I got was almost directly related to my nausea levels.

Pacing – The second time around, I was super lucky that a work contract ended at week four so I had week five off to get into a routine of rest/errand. The first time around, I had little choice and needed to work the entire time, however I worked from home and was able to schedule lie down breaks regularly – for a while there I napped at 10am and 3pm (and my body’s a rigid non napper usually!) The work/rest cycle is really best for managing pain, fatigue and pregnancy. Sometimes it may feel as if the rest needs to be longer than the work portion, but try to allow that as best you can. Some days I was so (miserably) tired but couldn’t nap and  resting was the difference between coping and not. I actually lay down with my eyes closed and listened to Pride and Prejudice audio book which was a lovely treat.

Meditation – as a stubborn (my body, not me!) non napper and a troubled sleeper meditation was a lifesaver. It is useful first thing if you wake too early and cannot get back to sleep. It can be used midday, or whenever you need a lie down. Or it can be used right before bed. You can choose simple breath focused meditation, you can listen to guided meditation or do body scans. You can choose meditations specifically for pain or pregnancy. There’s a heap available on YouTube to try.

Exercise – walking is a big part of my usual pain management plan and this is no different in pregnancy. I had to pause my experiment to see if I could increase the amount I could comfortably walk without increasing the pain or fatigue. But I was able to continue gentle 20-30 minute walks all around our neighbourhood after the hardest weeks were over. During the worst weeks I managed about 10 minutes a day. Yoga was off the menu for me due to post exertion malaise, but this could return in the second trimester for me and may be useful for others in trimester one. Your body will tell you. Anything you did before is usually okay during pregnancy.

Here are three cool yoga poses for your entire pregnancy that I found https://m.youtube.com/watch?list=PLoLbQHZNNqOrHOyfkvlDDvKMi1Clz309c&v=5XKaDOYUpiw

Fuel – I needed smaller amounts of food more often, so I adjusted my meals to suit this and this helped stabilise my energy levels and avoid the more severe nausea. When I was the most sick and unable to eat I found that gently coaxing my tummy back to food with diluted orange juice, small amounts of milk, toast and then whatever I fancied worked. Crackers by the bed for midnight or 3am snacks was a handy hack!

Pain management plan – my doctor helped me to put together a system for dealing with the pain using as minimal medicinal input as possible. My big struggle has always been my neck, so I needed a dose of pregnancy suitable pain killers before bed. I took a combination paracetamol and low dose codiene mixture. I allowed myself one dose per day unless my back pain was severely breaking through the more natural methods of management. You may like to look into homeopathic remedies, using an experienced practitioner’s advice – my doctor is a big fan and I used Crampmed by Naturo Pharm.

There are a ton of natural pain control mechanisms that I have written about before (links) but a snapshot: heatpack, warm bath or shower, meditation, self massage or partner massage or paid massage, herbal topical relief cream (like arnica), gentle walk (seems counterproductive but often helps my neck and back the key word is gentle), a swim, distraction (funny videos, phone a pick me up friend), self trigger point, foam rolling, yoga poses (restorative poses for pregnancy), stretch (seriously, do this several times a day!).

Nausea – this is pretty much unavoidable but I have a few tricks for reducing it: 1. Keep your tummy from getting empty, 2. Don’t get too fatigued (using tools above), 3. Ginger lozenges or mints, 4. Acupuncture for nausea in the wrist point or the seasickness bands that hold pressure in the same point.

Going to the bathroom ALL the time – I can’t really help with this, but I do avoid anything other than water after 3pm and, otherwise, just go with the flow!

Plan – if you’re at all like me, you will find comfort in planning ahead. And write everything down because it may fall out of your head. Figure out potential parental leave options.

Enjoy – you’re growing a tiny human! Revel in that a little. Also enjoy the things you can do now and will have to give up later (weird fact, I do certain stretches and legs on a chair pose like crazy because I know I’ll have to give them up from week 16 or so!)

Do you have any tips for getting through the first trimester?

Running on Empty

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.

PhotoGrid_1459840537711

Tired… Just tired

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:

  • Rest and meditation
  • Pacing
  • Swimming and spa soaks
  • Good, whole food

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!

Giant Meditation Post

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.
Blue one way traffic sign

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.

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:

  • Lying down
  • Using my heatpack on my neck
  • A break from noise
  • Time alone
  • 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.”

Elaine R. Ferguson, in her book on holistic healing agrees: “Practicing this [mindfulness] meditation affects your mind, brain, body and behavior in ways that promote whole-person health.” P83 Super Healing: Engaging our Mind, Body and Spirit to Create Optimal Health and Well-Being.

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.

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.

Meditation provides true rest for body and mind and I think that is what I so desperately need in my day.

Yoga for Fibromyalgia: A Giant Introduction with Links

Type “yoga for Fibromyalgia” into Google and you will find a wealth of information trails to follow.yoga-20647_640

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 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.

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.

Some yoga tools:

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?

Tensions, Accepting Life as it is

The tension of chronic illness, aside from any symptoms, is the desire to fight it and the need to accept it.

I’ve been reading Simply Tuesday: Small-Moment Living in a Fast-Moving World by Emily P. Freeman.

It has been a breath of fresh air.

Freeman speaks of fighting the city builder within and nurturing the bench sitter instead. The bench sitter is the one who sits in the moment. Who sits with others in their moments, a witness, not a fixer. Who allows themselves to process their own moments.

Frequently I’ve had to combat my runaway desire for achievement, to reorient myself to what success means for me.

More recently my challenge is to accept things as they are. Accept my body as and where it is. Accept the day as it is. Not to stress over it.

The yoga instructor who helped me to create a sequence reminded me of it, accept your body where it is. (Not where it used to be).

I’ve been trying to take stock of my actions and reactions. Just notice.

And to increase my time to relax and release.

No Tiny Mission here, just an attitude adjustment and a commitment to take all practicable steps to reduce stress in my life. And to try to be more accepting.

Panicker

I lost sight of the mission.

I do that. Often. I get buried by fatigue and pain and then spiral into a steadily descending panicky chaos.

Hi, I’m Melissa and I am a panicker. Before I even realise I’ve gone into survival mode, before I’ve realised the pain and/or fatigue have ramped up so much. I panic.

After two weeks of barely surviving – new job, bad cold, baby’s first birthday party, baby spurting more teeth (and still not on daylight saving time) and husband on night shift, I was feeling more than a little sorry for myself. The negativity spiralled with the fatigue.

I ended up crying on the shower floor. And then analysing things relentlessly.

Now I’m back.

I’ve remembered why I’m doing this. Why I’m trying to make this job work. What my goals are. What my mission is (to live, love and be well despite the fibromyalgia – this prong is to have a meaningful part-time career).

Some things you could do, once you realise you’re in the spiral:
-Ask for help
-Meditate
-Go to bed
-Keep track of what you’re mission is and a list of what makes you happy.
-Keep putting one step in front of the other.

I’m not sure this situation is going to work for me and my family, but I’m able to think more clearly now that I’ve identified my spiral.

The Case for Meditation

I feel like it always comes back to stress, to my body’s extreme “fight or flight” reactions.
When I’m observing myself, I notice it. The increase in heartrate, that feeling in your stomach, the general all over heat. Sometimes it happens for very mild reasons. Other times, stressful things occur and I’m excellent in the moment and freak out after. I’m freakishly calm in some situations that I would expect anxiety.

When I’m reading/researching about fibromyalgia/chronic fatigue/ME etc. Stress comes up frequently.

Meditation is supposed to help. Breathing. Resting. Things which I am not good at, unless you include reading in your definition of rest (some fibro/CFS experts do, some don’t).

Meditation, in the small form that I did it, after a practice, disappeared with said practice. It’s bliss to do full body relaxation after a good yoga workout. But the post exertion malaise is at it’s worst after yoga, since I had my baby, so I can only do portions of the routine.

the art of stillness

“Testing many others who had meditated for ten thousand hours or more and many who had not, [they] felt obliged to conclude that those who had sat still for years had achieved a level of happiness that was, quite literally, off the charts, unseen before in neurological literature.” (P.25) The Art of Stillness: Adventures in Going Nowhere, Pico Iyer.

Iyer goes on to mention that some employees at a giant healthcare company experienced a reduction in stress, by a third, after an hour of yoga a week! (P.45)

“In an age of speed, I began to think, nothing could be more invigorating than going slow.
In an age of distraction, nothing can feel more luxurious than paying attention.
And in an age of constant movement, nothing is more urgent than sitting still.” (P.66)

And this resonates with me, deeply. To go slow, to sit still, to pay attention.
So, I can’t keep ignoring it. When something keeps smacking you in the face, you should probably listen.
Some articles for encouragement/guidance:
Why Meditation is a Powerful Medicine 

I began small with a Tiny Mission to do Total Relaxation Pose every day, and fell in love, although I have not been very diligent lately. I plan to bring myself back towards it with another Tiny Mission – to do child’s pose every evening.