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?

Low Dose Naltrexone: An Experiment

There are three little letters that are causing a craze in the world of Fibromyalgia at the moment – LDN (low dose naltrexone). This is the last (for now) major experiment I can engage in.

Research has been showing promising results. Dr Jared Younger started with a tiny study and found positive results, approximately 65% of patients included experienced clinically significant results. He’s doing a bigger study this year.

How LDN works is well explained in this article, which includes many links to research.

It is meant to help with so many issues, including Fibromyalgia, chronic fatigue syndrome, gastrointestinal troubles and more.

If I could experience a 30% (this is considered clinically significant and therefore as success) decrease in pain and fatigue, my life would change! I could be a mama, a wife, do my work and have some form of a life outside that and not pay with such significant levels of pain, fatigue and other side effects of the Fibromyalgia.

I can only share research and what works or doesn’t work for me. We are all unique and react differently. If you’re interested in LDN then read the research/information and then discuss it with your doctor.

Key things I learnt:

  • It works best for me when taken at 9 (not earlier).
  • My main side effect was vivid, crazy dreams.
  • Titrating up 0.5mg at a time with four day gaps between increases, until 2.5mg when it was beneficial to wait a week or more.

I’ll update on this experiment when I’m closer to the four month mark – this is when most people I’ve read about in the LDN groups on Facebook find it shows the best effects.

Have you tried LDN? Any success?

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.
  –
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.
 –
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).
 –
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!
 –
Hannah Radenkova at Superpooped: Adventures for the Exhausted wrote about her diet for managing ME, including a daily meal plan.
 –
 –
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.

Second Trimester, The Second Time

The second time around I truly found a distinction between the first and second trimesters, a real diminishing of symptoms. The nausea vanished, the more extreme fatigue receded and my low back pain eased. For a time.

second-trimesterThe relative lack of stress, limited work hours and the totally different place in my health journey all helped immensely. I had my coping mechanisms well in place. I already had a plan for coping with the third trimester, labour and the first weeks.

Sleep, of course, was difficult as my neck and shoulders hate (with a capital h!) lying on my sides. Every time I changed position, which was often, I woke. But meditation around lunch time for 20 or 30 minutes really helped me to cope.

Nu was really excited and shared the journey with me day to day, so that was really special!

Here’s what I did to be well:

  • Energy Revitalisation Formula – a general multivitamin to support nutrition for those with Fibromyalgia, any pregnancy multi is a good idea
  • Making better food choices – once I wasn’t so sick
  • Exercise as I could – this meant walking 20 minutes several times a week, being generally active (using 8000+ steps a day) and some gentle resistance work (superman, pelvic tilts and lots of pelvic floors)
  • Stretch – often!
  • Heat pack – not only does it ease pain, but I had to sit or lie down with it for it to stay on my neck or back.
  • Sleep and rest – bed at a good time, meditation about lunchtime
  • Journaling – taking time to write “mama notes” documenting the toddler and the pregnancy
  • Physio – every 2 weeks

As the trimester progressed and sleep deteriorated (due to worsening back pain) it did become more of a slog. But a heavy dose of acceptance helped – pregnancy is a trying time for any body, it is finite and I do all I can to help myself.

It also helped to be able to say things like, “these are my last first kicks,” “this is the last time I will have to cope with pregnancy-caused backache” and “this is my last second trimester”!

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?

What it’s Really Like to Live With Fibromyalgia

I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue).

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.

Here’s the thing – I manage this illness well.

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.

Amitriptyline – Off and On Again

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. medicine-thermometer-tablets-pills

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.

Things I’d Like: 2016

It’s 2016! That happened quickly. There are more than a few things I’d like from this year, from the profound to the trivial. A sort of goals list. I’ve compiled them below and will come back to them throughout the year when I need a reminder of my intentions.PhotoGrid_1451589339246

  • I’d like to challenge the perception that one must just “do their time” when they have kids, that sleep deprivation and self-denial is some sort of rite of passage.
  • I’d like to find a way of socialising that doesn’t involve my pain and fatigue levels spiking. We could have rocking lunch parties.
  • I’d like to be unashamed of my preferences and needs and wants. Especially when it’s contrary to those around me.
  • I’d like to stop feeling guilty for what I’m not doing for my family’s sake. Especially when I’m already suffering the consequences of overdoing it for their sake. I’m always going to feel bad when I hold them back, but it costs me so much more when I push myself too far than it does for them to compromise. Which leads to the next one:
  • I’d like to get a better balance of overdoing it and not pushing it (in the right direction) enough. Enacting my cost/benefit analyses better.
  • I’d like to create a toolbox of options to help me sleep well. This doesn’t include permanent medicine, if I can help it, I plan to be off amitriptyline by next week.
  • I’d like to lose a few kilograms and increase my exercise tolerance.
  • I’d like to go to Fiji. This is a few hours of flight time from here and a different climate, a toe in the water for further afield.
  • I’d like a regular date night with my husband. This has been an aim since we were married, but between his shift work, the baby and other commitments, it gets shoved aside too easily.
  • I’d like to get my B12 and iron levels to a better level.
  • I’d like to keep learning.

The list isn’t exhaustive, but enough to keep me moving in the right direction. Do others have a similar list? What sort of things are on it?

Curamin

I was becoming rather despondent about my neck pain and the effects it has on my life.Curaminb

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).

When I came across Curamin, I was curious and also wary. Nothing ever seems to give me the effect advertised, or noticeable positives.

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 enables me to get better blocks of sleep and this has translated into more energy – it lasts me longer into the day.

I still, however, start 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.

Has anyone else tried this? Or other things that have a similar effect?