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 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?

Knee Flare Up – What I Did

The last few weeks have been difficult but illuminating.

I went to the pain clinic and did some physical testing that left me with a knee flare up.

I dealt with it fairly well, but it was hard. I couldn’t walk due to the severe pain. The not walking caused my back to flare up too. The extra pain caused extra fatigue.

But I did what I do best, I coped. On the first few days I rested and took medicine as the pain was rather severe. I used the space the pain relievers bought me to do my leg strengthening exercise (essentially leg lifts focusing on engagement in my thigh – my physio gave me this specifically for the knee pain). I also used an ice pack on it as I couldn’t bear the thought of heat on it.

After a few days I went to the pool. I walked across the pool in hip/chest height water holding my son (I had no childcare, plus he loves the water!). We managed 10 times across and then soaked in the family spa. It was bliss. We have done this three times in the past two weeks.

As my knees calmed down I slowly increased the amount of incidental walking I did during the day. When that brought less pain, I walked to the shops and back (20 minutes with a break in the middle).

Eventually that led to me resuming our usual 20-30 minute walks.

Now I am still sleeping with a pillow under my legs and stretching my legs like a maniac, but my knees are better and my back is under better control.

In a nut shell here’s how I dealt with the knee flare up:

  • Rest
  • Ice pack
  • Pain relief
  • Stretching and gentle strengthening
  • Walking in the pool (any exercise tolerable!)
  • Soak in the spa
  • Gently resuming old activity level as pain stabilised

Interestingly, my physio doesn’t think the knee pain is just Fibro. This means I need to get it checked out to ensure it’s not actually causing damage. Exercise will almost certainly keep it in check, but once it’s sore, if it is causing damage, I may need another plan to deal with it. I will keep you posted about that!

The Whole of Life Change Anniversary

Five years ago I left a stressful, full-time, computer based role that I spent an hour each way on the bus commuting to. I moved back in with my family and we relocated to a warmer city.

Once here, I took up a position that was challenging and fulfilling, but sliced a third off my work day.

I had been really struggling. The pain had been building to the point that I awoke in pain, spent the day in pain and tried to sleep in pain. It dominated my life. I was so sore that it made me want to vomit.

The fatigue was another story. After a debilitating bug at university I became progressively more exhausted. By that time, four years later, I was dragging. I needed a coffee first thing in the morning, an espresso on the way to work and an energy drink in the early afternoon just to keep my eyes open.

I could do little in the weekends. On Sundays I was barely able to leave my bed.

It was only in my dreams that I thought life could get any better. I was hoping that I’d get to a point in my career where I could reduce my work hours and still afford to live. I dreamed of warmer weather, of no busses and a little four legged love to potter around home with me.

Then the opportunity came and my whole life changed.

I’ve been meditating upon the components of my whole of life change that actually made a difference.IMG_20150927_145928

Change One – Reduce Work Hours

I reduced my time sitting at the computer by a third. Also, by finishing at 3pm I created two hours for other things without cutting into the evening (when I’m too exhausted to function).

Change Two – Cut Commute

I drove to work, half an hour each way, no sitting on a bus trying not to vomit, fall asleep or both.

Change Three – Love

I surrounded myself with people who loved me and who I enjoyed being with.
And then I met the love of my life and the human I most cherish (my husband and son). This has perhaps been the most instrumental thing to increasing my functionality, my hope and my reason for fighting the Fibromyalgia.

Change Four – Reduction in Activity/Pacing

The amount of walking and sitting and activity required of my whole life back then caused a lot of tight, sore muscles and worsened the fatigue. I cut everything right back. This made a huge difference in the wrench tight muscles in my lower back, glutes and legs. The fatigue has reduced dramatically.

Change Five – Passion

With the reduction in work hours and a year of rest and rejuvenation, I felt able to commit to a writing course that I had always wanted to do. I created energy to follow a passion. The reduction in fatigue enabled me to take back my love of reading – I began to read voraciously.

Change Six – Exercise

I met my four legged love (Coop the dog) and embarked upon a gentle exercise plan. I worked my way up from a meandering 15 minute block to an average 30 minute walk per day plus 20 minutes of Pilates three times per week. After the baby this changed, but exercise is super important.

Change Seven – Acupuncture

Quite by accident, I stumbled upon a fantastic physiotherapist who was experienced with Fibromyalgia. I found that acupuncture needles in key muscles, including neck trigger points, make a big difference for me.

Change Eight – Knowledge

With a reduction in pain and fatigue I was able to move from just surviving to living. I was able to begin researching. This one took the entirety of the last five years. With the most change happening in the last two years.

It’s still hard, I’m still in pain and I’m still exhausted. But I have enacted a heap of changes and won’t stop trying new things.

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I’m living my happily ever after, Fibromyalgia and all.

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?

Managing Brain Fog at Work

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:

  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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.)

Do you have any other suggestions?

Food, Body Image and Fibromyalgia

There are some serious struggles involved with having a chronic illness, especially one that heavily impacts your energy levels.

I have struggled with body issues for forever (don’t most women?). Before I was struck by the chronic fatigue syndrome in in my last year of university, I exercised a lot. I walked everywhere and I went to the gym. Sometimes I walked to the gym (20 mins each way).

Before I left my full time job I was forcing myself to walk as much as possible and do one Pilates class each week. But my legs, glutes and lower back were ALWAYS tight and sore.

When I changed my lifestyle, I allowed myself to find the balance between enough exercise but not so much that it hurt. I walked 20-30 minutes each day and did a 20-30 minute Pilates or yoga routine three times a week. But I was less rigid on “bad” days.

Due to my body type and my previous levels of exercise I have very muscular legs. So when my pregnancy forced me to slow down (a very slow 20 minute walk by my last day) my legs became less defined.

As I progress further from pregnancy and my baby sleeps a bit better, I am able to pick it up a little. I have been able to do more walking and exploring which I love to do. I love finding a new walkway or beach and I love sharing this with my boy and husband. Numerous family adventures include walking in new places.

With the tremendously low levels of energy and high levels of pain that I have experienced since I had my boy, I have come to look at food more as fuel. I am more relaxed about it. My husband loves that I am not super finicky about food (as I’d have to be to maintain a tiny figure). Though, he does love the idea of my having a flat tummy!

I have a better understanding of food and exercise for fuel and survival, rather than aesthetic reasons. But I still struggle with my body image and that is a work in progress. I am learning to be thankful for what my body can do. That it carries me through each day, even if some of those days are slower than others and all of them are slower than most people’s. Having chronic pain means that I am more aware of my body and all of the work it does to keep me alive. And for this, I am thankful.

This Week 22.02.2015

So much happens all the time, so I thought I’d provide a little roundup of the week.

I have been working on my experiments, following the windy threads that people throw out to ideas of things that could potentially help. This week I found this website which was founded by Dr. Bill Rawls and promotes his treatment plan. In addition to this, it provides some useful information and has suggested some new herbs/supplements to try in my next tiny mission. COQ10 has been reinforced from a few different sources, including in Chronic Fatigue Syndrome: What You Need to Know About CFS/ME by Dr. Megan A. Arroll.

I’ve been reading, more like devouring books, I’m in a non fiction mood and have rea

Superpowers for parentsd the above book, and begun:

Superpowers for Parents: The Psychology of Great Parenting and Happy Children  by Dr. Stephen Briars

The Way of Serenity: Finding Peace and Happiness in the Serenity Prayer  by Father Jonathan Morris

I’ve been racing around after my boy as he grows increasingly mobile and unable to tolerate sitting nicely in one spot. That’s been tiring!

In addition to work my few hours that I am contracted for, I have had a job interview for a more stable position of 24 hours per week. I am fretting because I know that it will mean an increase in neck pain (my neck responds extremely negatively to sitting at the computer, well, I am yet to find what it responds positively to!). I am hoping that this amount of hours will be a nice fit for our situation.

We set up our Nintendo Wii and played Grand Slam Tennis for the first time. Here are the key stats: 30 minutes of playing, burning approximately three calories per three minutes, one very sore finger from a meeting of the hands when both my husband and I went for the swing (mine not his) and 30 minutes to entice myself to get up again after I lay down on the couch at the conclusion of this! The next day, I felt muscles that I haven’t used for a while, so it wasn’t all bad!

We have begun the Lenten season, which means a significant increase in the amount of events I must attend for my Catholic conversion programme. That’s an evening a week and a Sunday morning mass commitment (me and my baby ready for 9.30am mass? Hard!) for the period.

My fatigue flared up for two bad days and clung up near 7/10 for most of the week, making the evenings with the baby almost impossible. But we have made it, seven days done!

Mindfulness

I recently read the book, The Mindfulness Solution to Pain: Step-By-Step Techniques for The Mindfulness Solution to PainChronic Pain Management (2009) by Jackie Gardner-Nix. Katarina from Painfully Aware wrote about it and I decided I needed to check it out!

One key idea from this book latched onto me and has not let go since. The idea of noticing my pain and, non-judgmentally, taking note of all the details. Where it is, how it feels, what may have caused it.

Through this idea, I have come to understand more and more the separate components of my pain. For example, I know that the pain in my neck and back is probably caused by the overreaction of my muscles to stimulus. Also, there may be a problem in my right shoulder that is causing some of the problems around there.

I have noted an interesting paradox with my leg muscles, they respond most negatively to exercise when they have had a break. Longer periods of exercise do cause more tightness, but it is the getting used to exercise again, even after a one day break that causes the most trouble. So I really need to make an effort to walk or do Pilates every day. Which is not easy with rain, the baby and not much sleep!

I have also noted, more clearly than before, that not enough sleep causes the most problems in my life. When I can get 8-9 hours per night, preferably uninterrupted, I can cope with it all. The pain, the fatigue and the resulting roller coaster of emotions that come with this. When I don’t get enough sleep, for a long time, I spiral. Neck flare ups, more general pain, more deep-in-my-bones fatigue, cold sores, ulcers and lethargy.

The idea of meditation has always appealed, but I have never been any good at the sitting still and focusing on the breathe version. I would take to the five minutes of lying down after yoga practice, happy for the rest after the work. I can enter a mindful, peaceful state while walking and just being. But I don’t just go and meditate.

One afternoon, I had an hour to lie down between finishing work and getting my boy, and I didn’t feel like struggling with myself to have a nap. Falling asleep in the day time, potentially because I use Amitriptyline at night-time to get to sleep, is very difficult. I get frustrated. So instead, I meditated. I breathed, I performed a body scan (mentally checking in with all of my muscles) and rested. I felt very nice afterwards.

One night, after several particularly bad nights with the baby, I found that my neck was too sore and my headache too great to fall asleep. So I attempted visualisation (the concept of visualising my pain receding and the muscles relaxing). I gave it a good effort and found it not to be a useful form of pain relief for me. I took Panadol, waited about 20 minutes and finally, when the medicine took the edge off enough for me, got to sleep.

Mindfulness and the tools that this entails are useful aids for dealing with my pain and help to lessen the effects of the emotions that come with the chronic pain. But they can’t replace medicine when it is bad, or my whole of life wellness plan.

Tips to Cope in the Third Trimester

It’s no secret, the third trimester of pregnancy is a trying time. Especially if you have fibromyalgia and any of the comorbid disorders that can go hand in hand with it.

I struggled so much that I’m very scared of the prospect of a second pregnancy.

But there were a few things I managed that helped greatly and that I have seen mentioned in my reading travels:

Acupuncture – this helped with nausea in the first trimester and then with the pain as the pregnancy progressed. In the third trimester I visited my physiotherapist (who performs acupuncture) weekly.

Keep moving – I walked until the last day of my pregnancy. It was slow going in the last few weeks, but it was for the good of my mind and body that I went.

Sleep – find what will help. I had a great full body pillow that I curled around. Sleep was still difficult, but it helped!

Rest – don’t stand when you can sit or sit when you can lie down! Don’t become a couch blob, but take it easy!

Eat healthily – I fell in love with semolina porridge (or sooji as my Indian family-in-law knows it), it became my power dish. Try to really think of food as fuel. Fruit, vegetables, whole grains, protein. This may be a good area to get some advice in as I have certainly found that nutrition has a big impact on health.

Write a journal – try to focus on the beautiful baby you will be given and that will help you to remember that this time will pass!

Stop work as soon as you can – if it becomes a real struggle and you are so sore that you can’t sit down, like I was, then try to give it up as soon as possible.

One thing you definitely need to do is check your iron levels. Ask the doctor, when your results come in, what the range is (it’s a large range), and if it’s low already ask for an easily digestible supplement. It’s standard here to wait until week 28 before testing and by then I had become so low that my stores were wiped, making life much harder than it needed to be. I was beside myself exhausted! And for good reason!

Finally, know that there is a finite time that you are pregnant for. Try to enjoy it! Stockpile the rest!

Good luck x