Author: Sonja

One woman’s journey as she comes to terms with living with Fibromyalgia. Living with her knight in tarnished armour, with a small flock of chickens, and pair of Tawny Frogmouths and a homicidal Butcher Bird in the backyard.

Vestibular and Balance Disorders

Vestibular and balance disorders are another of the many co-morbid conditions that are often associated with Fibromyalgia.

The vestibular system is the parts of the brain that assist with balance and eye movement. It’s the system that allows you to move your head while walking and not fall over (most of the time). It is also the system that will cause motion sickness and can be responsible for feelings of dizziness.

The prevailing theory behind motion sickness is an incongruity between what the inner ear is sensing and what the eye is seeing. For this reason it often helps to look out a window in a car or at the horizon when on a boat.

I used to be one of those annoying people who most of the time could read a book in the car or hop on a boat without the slightest twinge of sickness. Since the FibroTroll came to stay, this is definitely not the case anymore.

I get regular dizzy spells, or “head spins” when I stand up. I usually get nauseated if I’m in the car for more than 20 minutes – sometimes from the moment it starts moving until an hour after it stops.

For my mother’s 60th birthday we went whale watching and Oh My Goodness, that was an experience! They are simply the most amazing creatures and fascinating to watch. Unfortunately, it just wasn’t enough to stop the horrendous seasickness from taking hold. I failed to get any really impressive pictures as I spent much of the trip vomiting into those little bags.

Whale Watching

Having issues with my vestibular system also affects my balance. I can no longer safely climb a ladder or even pick something up off the floor and stand straight back up without having something to hold onto while the dizziness passes.

I’ve had all the tests, and with the usual results for someone with Fibromyalgia, that is, nothing abnormal showed up. Even my MRI showed a perfectly normal brain – much to the disappointment of my brother, to whom I can now prove that not only do I have a brain, but it is normal! Ah sibling love, it’s one of the best kind 🙂

So my GP referred me to a vestibular physiotherapist. I had no idea such a specialist even existed. I had no idea what to expect, but I figured I would give it a go.

She was a pleasant lady, who seemed as though she really knew what she was on about. She ran through some testing of my balance and moved my head while I looked at a stationary spot and a few other tests. She gave me some exercises and patiently walked me through them so I knew I was doing them correctly. She included print outs and little laminated cards to do the exercises at home. To start with everything went well.

But as with many things, I pushed to hard. I so desperately wanted to get better, even if it was just this one thing, that I did the exercises. I went straight from none of them, to all of them, the number of repetitions she told me to do, and the number of times she told me to do them. And I triggered a flare. I also managed to get sinusitis and an inner ear infection, which made doing the exercises incredibly difficult and even painful. So I stopped. I went through a lot of guilt about not doing them and kept trying and failing. I now realise that I was also struggling with depression.

I’ve learnt a lot about myself and about pacing since then. My regular physiotherapist, Bobby-Jo (who I talk a little about here) is much more understanding about the FibroTroll. She doesn’t want me to upset the FibroTroll any more than I do. She gives me very simple exercises and she is always happy if I have managed even one rep a day. If I have done more general exercise and don’t do her specific ones, then she is also super encouraging about that. I have complained about set backs and she gives me just the right amount of sympathy – then points out that six months ago, I struggled to do one rep a day of each of the exercises, now I do 3-8 reps, sometimes multiple times in a day. And if I have to drop back to 1 rep after a flare, then that’s ok, but I’ll probably build back up faster than I did the previous time. And you know what? – She’s right. The other thing that Bobby-Jo reminds me of is that:

Progress at a crawl is still progress.

So, with that in mind, I’m going to dig out the print outs I have from the vestibular physiotherapist. Only this time, I will start with one exercise, once per day and build up from there. And hopefully, in the months to come, I’ll build up to the number the vestibular therapist wanted me to do – and then I’ll feel brave enough to go back!

Mango & Coconut Pudding (GAPS friendly, Gluten free, Dairy free)

I’m going to be honest here. I’m not having a great fortnight (for anyone from the USA – a fortnight is 2 weeks). I’m more sore than normal, I’ve had more headaches than normal and I’m tired. The thing is, when a FibroWarrior (or anyone with a chronic illness) says they are tired, it’s more than just needing a nap or a cup of coffee.

“I’m tired” really means I’m exhausted. Just the effort of holding my head up in order to watch TV or crochet is draining. I’ve got to decide if drinking that delicious cup of Crio Bru is really worth the fact that I’m going to have to get up in order to go to the toilet later. Getting in and out of the bath is a massive effort and going downstairs and back up again? think rock climbing with a hangover. The FibroTroll is really having fun at the moment.

I had to make my knight work from home one day this week as I was really struggling to do anything. I needed help getting food, having a bath, getting in and out of my hyperbaric oxygen chamber – almost everything really.

What makes it worse is due to my current dietary restrictions, I can’t even  have a pity party and eat a packet of chips and a bar of chocolate. So imagine how pleased I was to discover that there was still some GAPS friendly mango pudding in the freezer!

I mentioned this pudding in my last post and promised the recipe, so I had to make it again (just to test of course!) and luckily there was still some in the freezer when I needed a treat to cheer me up.

Here is the promised recipe:

Mango and coconut pudding. (Makes 4 large or 8 small servings)
  • 2 ripe mangoes – about 400-450g of mango flesh
  • 1 (400g) tin coconut cream
  • 2 tbsp honey (or to taste)
  • 3 egg yolks – beaten lightly
  • 1/2 tsp ground cardamom
  • pinch of salt
  • 1 tbsp grass-fed gelatine

Now, I’m lucky enough to have a Tefal Cuisine Companion, so for me it is super easy to make this (I’m sure it will work in a thermomix too, but I haven’t tried), but I will include directions for those who don’t have any sort of thermal blender.

  1. Peel mangoes and remove skin, blend until smooth (if you don’t have a blender, then chop it really finely, you might get some chunks of mango in your dessert, but it won’t affect the flavour). (CC- ultrablade, speed 10, 20 sec, scrape down half way through if needed). Skip this step if you want there to be chunky bits of mango in your pudding.
  2. Blend a small amount of the coconut cream with the gelatine – this will help avoid clumps, then place all ingredients into a saucepan. Mix well and cook over a low heat for 8 mins stirring regularly. Make sure the gelatine is completely dissolved. (CC – add remaining ingredients to mango in the bowl,  dessert setting, speed 6, 8 mins, stopper out.)
  3. Transfer mixture into ramekins or pretty dessert bowls or whatever you like. Allow to set in the fridge.
  4. Serve with extra slices of mango and toasted coconut, or just eat as is. It freezes and defrosts perfectly, so you can save some for later if you manage not to eat it all at once!
Mango & Coconut pudding – Tasty golden deliciousness!

This recipe also works beautifully with peaches and cinnamon – double the amount of peaches, as they are usually much smaller than mangoes. I imagine that it will work well with other fruits like berries – if you try it please let me know!

Walking on the handrail

Every now and then it feels like maybe I’m trying to cross the troll bridge by walking on the handrail. It’s harder, more exhilarating and there’s a fantastic view. But one step wrong and everything is going to come crashing down and then there’s going to be a troll stomping.
What I mean by this, is that I still need to cross that bridge everyday – I need to do all the things that sustain life and basic hygiene. I need to cook, eat, drink and wash myself. Ideally, I’ll do some cleaning as I don’t like to live in a pigsty. But sometimes, I just want to do fun things.
I want to bake six types of Christmas cookies. I want to sort my craft room and sort all my yarn and fabric into types and colours. I want to have a dinner party and feed people.
Especially that last one. I love to feed people; it gives me joy. Unfortunately, it uses up quite a lot of energy and usually means I don’t have enough left for the next day or two.
But here’s the thing; if I don’t do things I enjoy – if I don’t bring gluten-free Christmas cookies in to my old workmates, if I stop feeding my brother-in-law when he’s over helping the knight build chicken coops or other projects, if I don’t crochet the cutest little mermaid tail for my friend’s baby, if I never have another dinner party or any number of other things, then my happiness well will dry up.
So I do it anyway. I get up on that handrail and cross the bridge in the more fun way. I’m learning to pace myself, so that when I inevitably slip off the handrail, hopefully I’m still on the bridge the next day (rather than wallowing in the gully with a troll’s foot on my back).
It’s a work in progress, but I’m getting much better at it. I had some of the knight’s family over for dinner the other week as my brother-in-law is off overseas for six months. I kept it simple (for me), and allowed my knight’s aunt to bring a salad. I made mango & coconut pudding a few days before (find the recipe here) and put them in the freezer. I made quiche crusts the day before and blind baked them, and made an olive focaccia and baked it to just cooked so it could brown a little more when I warmed it up. Which meant that all I had to do on the day was throw a GAPS friendly salad together, make the quiche filling and bake them (and this was super easy because of my Tefal Cuisine Companion), warm up the focaccia, and take the puddings out of the freezer.
I then had a very enjoyable dinner with my knight’s family. They are wonderful people and I enjoy spending time with them. I had a tiny glass of wine and enjoyed myself.
Yes, that used up way more energy than normal. It meant that the next day was spent doing very, very little. I had a bath, got in my HBO2 chamber and basically used as little energy as I could.
But it was worth it. And I’ve learned that making a fuss about the people I love is part of who I am, and if I stopped, then I would stop being me. I just have to learn to do it in a way that works.

I’m going hairy!

I’ve decided to let my body hair grow. For this month at least, the razor will be put away and the tweezers left in the cupboard.

My knight is totally supportive of this. Partly because he is awesome, and partly because he really doesn’t mind if I’m a bit hairy (let’s just hope that at the end of February he still feels this way!)

Why?

It’s for a fantastic initiative called Get Hairy February. The idea is to raise awareness for gender equality and to raise money against domestic violence.

It’s only been 100 years since it became “normal” for women to shave. Some marketing guru’s who wanted to sell more razors launched a campaign to make women feel bad about their body hair. Within 10 years, the number of women who shaved their legs and underarms had gone from 20% to 80%.

So it’s a way to challenge gender stereotypes and maybe start a conversation. It’s a visible reminder that although we’ve come a long way in closing the gender gap, there’s still a way to go.

So, with the encouragement of my knight, I’m not going to waste energy on shaving this month. Who knows? Maybe I’ll decide to stop completely. It will save money and energy that can be used on something else!

If you are interested in finding out more about this campaign, or you want to donate to my fabulous hairy legs, you can follow this link.

 

I had an epiphany!

I was at my Psychology appointment today and I had a sudden moment of complete clarity.

My physical symptoms do not define my self-worth.

I wrote that in nice big red letters because I don’t want anyone to miss it. Logically, I already knew this. If you had asked me six months ago, (and I have a feeling that maybe my Psychologist did) if I believed that a person’s physical health or ability defined their self-worth, I would have said; “Of course not.”

But logically knowing something is true, and applying that belief to oneself is not the same thing.

Today as I chatted about surviving Christmas, my writing – in particular about my post on anxiety and depression and my various new undertakings, it suddenly dawned on me.

I am not defined by my physical symptoms. Yes, I have pain and fatigue, but they are a part of my life, not who I am. I am so much more.

Yes, having to share my life with the FibroTroll sucks. It’s an uninvited houseguest that steals my energy and never picks up wet towels from the bathroom floor. It insists on being involved in every single thing I do. Going to brunch? Think about the Troll. Shower vs bath? Will the Troll let me stand up or will I need to soak? Hang a load of washing? What is the Troll doing to my shoulders today? What to have for lunch – yep, you guessed it, think about the FibroTroll.

But that’s just it. It’s the FibroTroll that is the problem. Not me. I didn’t invite it, and so far my track record of surviving what the Troll throws at me is 100% success. I’m still here and I’m going to keep fighting. I am lucky enough to have my knight in tarnished armour (shiny armour is totally over-rated) fighting right next to me. The FibroTroll might win the battles, but it will never, ever win the war.

So my fellow FibroWarriors, I want you to take this message. Write it down on a post-it note and stick it somewhere that you will see every day.

I AM NOT MY ILLNESS AND MY PHYSICAL SYMPTOMS DO NOT DEFINE MY SELF WORTH.

We are all so much more than an illness. We have value simply because we exist.

Keep fighting fellow warriors. The FibroTroll is an arsehole. That doesn’t mean you are less of a person.

Anxiety and Depression

I have a confession to make. A lot of the time, I fake it. No, not my fibromyalgia. When I go out, most of the time, I fake being well. I usually tell people it’s a good day, and I let people make whatever assumption they like. I pretend that I’m not hurting, and that it’s not a struggle to  follow the conversation.

I’ve been doing this for a long time. The downside is, that I started to get very good at hiding things. I was hiding my fatigue behind make-up and medication. Hiding my pain and anxiety behind happy chatter and my depression behind a fake smile.

I had noticed that I was having the occasional flat day, but I figured that having a chronic illness I was bound to feel a bit down from time to time. I smiled and said c’est la vie when people asked how I was. They marvelled at how well I was dealing with things and inside I wanted to scream and cry.

I did it so well, I didn’t even realise how bad I was. Until one day, I had to make my knight stay home from work because the mower man was coming and I was having a panic attack. He’s a nice man and has been mowing our lawn for years, and other than liking to talk too much he isn’t the slightest bit threatening. I realised that I needed help.

It still took me a few months to find the right person and actually take that step of booking an appointment. But it was a step worth taking.

I have been seeing my psychologist, Julie, for about six months and she is worth her weight in gold. I had not realised just how far down the depression slope I had slid. I realised that the occasional flat day was actually the days that I was aware of my mood – and that the problem had been running much deeper than that.

Now I want to be completely clear. Fibromyalgia IS NOT CAUSED by anxiety or depression. It is very common that sufferers of any chronic pain or health condition will also suffer from anxiety and/or depression. It is a very common co-morbid condition.

While I don’t think it has made much of a difference in regards to my pain or fatigue, I am certainly in a better head space. The advantage to this, is that then I am more able to do the things that do help me with pain and fatigue. I am more motivated and organised to make GAPS friendly foods that are also tasty and interesting. I am doing my yoga and the exercises my physiotherapist gave me. I survived Christmas, by having a plan (but dropped the ball after that, so it’s still a work in progress).

And I started writing this blog. The only reason this blog exists, is because Julie encouraged me to start using writing as therapy. I extended that out to writing a blog. Partly because if I know that someone might be reading this, then I’ll actually get myself motivated to write something. And partly because it would be great if something I wrote, actually helped someone.

Mental health does not get the positive attention it deserves. There is a negative stigma about seeking help with mental health in the general community. This stigma becomes a double-edged sword for Fibrowarriors. Too many people are told that their fibromyalgia or chronic fatigue symptoms are ‘all in their head’ and dismissed. This sometimes leads to a backlash against seeking mental health. When you know that your symptoms are real, but the very person you are trusting with your health tells you that they are not, that trust becomes weak.

People retreat behind their defensive wall, and decide that because their symptoms are real (AND THEY ARE!) then they don’t need mental help, they just need physical help.

And this is where I strongly disagree. Suffering from constant pain and fatigue is draining, both physically and mentally. Losing your independence, your identity, your job and your ability to see friends is heartbreaking. For some, they lose their partner and/or children. Having cognitive dysfunction reduces confidence and the ability to interact. Having a disease that is poorly understood, with treatment currently consisting of a trial and error regime of symptom masking medication is not an easy burden.

Remember, the ability to laugh at something does not mean you are not well on the way to a potentially serious depressive state.

So get some help.  Go to your GP. Ask for a mental health plan (in Australia) and a referral. Plug “Psychologists for chronic pain in (insert your city here)” into google. Pick up the phone and make an appointment. It might just be the most important phone call you ever make.

 

 

 

 

 

Surviving festivities

I love Christmas time. I mean when else can you paint your toenails alternating green and red and people smile about your Christmas spirit instead of trying to back away from the crazy lady??!

But surviving Christmas when you have a chronic illness is another challenge entirely. My knight in tarnished armour and I are lucky enough that most of both our families live in the same city as us. We also are lucky that my family comes from Viking stock. Which means that we have always celebrated Christmas on Christmas Eve (don’t ask me how that works with Santa, because I don’t know!) This means we have never had an argument about where to spend Christmas. We celebrate with my family Christmas Eve, and with the knight’s family Christmas Day.

But in that also lies a problem. If I do an evening function, even if it is a short one, it uses more energy than a longer one would during the day. So if I have an evening function, I absolutely have to allow for doing nothing the following day to avoid a flare. So that makes it very hard to do two functions, even over two days. This Christmas just past, I managed to make it work. I had my whole wonderful family at my house for Christmas Eve lunch. Then my knight’s wonderful family for Christmas Day lunch.

I didn’t have to go anywhere, no travel, no stressing about packing food, supplements, medications. I knew my own bed was just on the other side of a door. I had a lie down just before everyone turned up and again while everyone cleaned up. My in-laws stayed and we played games all afternoon – which is one of mine and my knight’s favourite things to do. And both nights I was in bed at my regular time.

So while I managed the FibroTroll very successfully for our Christmas celebrations. I didn’t go so well after that.

I decided to hit the post-Christmas sales. And while I got some great bargains, it used up more energy than I really had. Then it was my birthday, so I splurged a little and had a glass of wine and a creamy cheesy seafood marinara. I made it into a GAPS friendly version with zucchini spirals instead of pasta, but I may have gone a little overboard with the parmesan. Lastly, it was New Years Eve. The knight and I sat in the air-conditioning, eating peanut butter ice-cream (GAPS friendly again) and watching Dr Who(I know, awesome, right?!). But at 10:30pm the Troll decided there was no way I was seeing in the new year, so I went to bed.

All of that proved to be a bit too much and the FibroTroll invited his best mate the Migraine over. So I’ve been a bit flat for a few days, and only now am I on the upswing.

On the plus side, I found an app for my android phone called Migraine Buddy. It helps you to track your migraines and potential triggers.  I have only had it for 2 days, so I will have to let you know how it goes.

 

 

Migraines and persistent headaches

The FibroTroll has another group of regular friends (co-morbid conditions). They have a whole little gang of their own. They come in the form of migraines and multiple different types of headaches.

Here’s a little breakdown of the most common members of the Troll’s headache gang:

  • Tension headaches: These commonly start at the base of the neck and will work their way forward so they eventually encompass the whole head. If I get one of these, I tend to reach for the ibuprofen and get my knight in tarnished armour to massage my neck.
  • Dehydration headaches: Can be any part of the head, usually they will improve if you bend over or lie down. Movement will usually aggravate them. I rarely get these as I make a conscious effort to avoid become dehydrated. The best treatment is to rehydrate. Do this in stages, if you drink a litre of water in one go, it will not be as effective as if you drink a small glass every 10 mins. You will also need to replace electrolytes, I do not tolerate the artificial flavourings in commercial electrolyte drinks, so I prefer coconut water. There’s also loads of recipes online for homemade rehydration drinks.
  • Allergy headaches: Often seasonal. They are usually generalised and accompanied by sore, itchy, or runny eyes, and a runny nose or sneezing. Antihistamines can be of more use than analgesics for this type of headache.
  •  Hunger headaches: Mine are usually accompanied by being “hangry” (so hungry that you are cranky). Low blood sugar can be the cause of these. Having a sweet drink, then eating some food is the best treatment.
  • Medication or Caffeine withdrawal headaches: Best managed by not being too reliant on medications (easier said than done). Early on in my FibroTroll fighting days, I had to cut out the caffeine and the resultant headaches were not fun to get through. Analgesics and rest got me there eventually.
  • Eyestrain headaches. Commonly in and around the eyes. Often caused by spending too long staring at a screen or driving long distances.
  • And one I call The Troll headache: I haven’t found an official name for this headache, but it is a distinct one that I recognise as different to the others. It has the neck tension, but also tends to sit in around the back of the eyes. It feels as though someone has stuffed my head full of cotton wool, but without taking anything out to make room. The only things that help this one are caffeine and sleep. I usually try sleep first, but it can hang around for a few days and if it does, the only option is caffeine.

There are many more members of the headache gang, far more than I realised when I was younger. They include (but are not limited to): Cluster headaches, vascular headaches, TSS, altitude headaches, brain tumours, fever, trauma and the list goes on. But the big Mob Boss of headaches is the good old Migraine.

The Migraine is a good friend of the FibroTroll. They both have the same great enjoyment of effing your life up as best they can. My migraines manifest as an all over headache, including severe neck tension, I am sensitive to movement (mine and those around me moving too fast) light and noise and if I don’t get analgesics into me ASAP, it will progress to vomiting.

There is a very good article that goes into migraines in much more detail. I wouldn’t do it justice if I tried.

A migraine is one of the few times I will resort to codeine. I will have panadeine together with ibuprofen (check with your doctor if this is ok for you to do before you do it!) and then lie down in a dark room with as little noise as possible. I’ll use an icepack and heat packs and move them around my head and neck. I can’t explain why this helps, but it seems to for me.

These are the things I do to help reduce the occurrence of headaches and migraines.

  • Try to get adequate sleep. Read more about improving sleep quality here.
  • I see my chiropractor every 2-3 weeks and my physiotherapist every 3-4 weeks.
  • Move regularly. I don’t mean go for a run. I mean get up, stretch, do yoga or Tai Chi.A sedentary lifestyle can predispose you to headaches, yet it is hard to get adequate movement when you are battling the FibroTroll.
  • Meditate. This helps reduce stress.
  • Move your eyes. If staring at a screen, or anything that stays a similar distance away, regularly look around. Focus on things that are different distances away. Put your hand up in front of your face and focus on it, then focus on something in the distance.
  • Drink plenty of fluids. Have a drink of water every time you pee. And if you drink caffeine or alcohol, a glass of water for every one of those drinks.
  • Eat regular nutritious meals.
  • Avoid too much sugar and processed foods. Keep a food diary and try and see if there is a connection to your migraines. Many people find that food can be a trigger.
  • CoQ10 (co-enzyme Q10) is an enzyme found in the body’s cells. A few published research papers have shown that for some people supplementation with CoQ10 can reduce the frequency and severity of migraines. Some of the abstracts for these studies can be found here. CoQ10 can have serious interactions with some medications, so check with your health care professional before taking it.
  • Magnesium supplementation in the form of an oral powder and Epsom salts in the bath. the supplement I like is called Energy X, made by Metagenics. (I have no affiliation with Metagenics, I just really like this product.). It has a really good mix of B vitamins and other vitamins and minerals that I find helpful. As an added bonus it is flavoured with cocoa – yum!

There are medications available that can help to reduce the occurrence of migraines. I personally choose not to take preventative medications as I find that these management techniques mean I rarely get them.

I do get headaches often, but the more I learn to listen to my body, the better I am at identifying the type of headache and the treatment that is most likely to be effective.

For preventing allergy headaches though – I got nothin’. If you have any tips, I’d love to hear them!

 

 

 

 

Sleep Disturbances

Insomnia, Restless Leg Syndrome, Sleep apnoea and non-restorative sleep are some of the common sleep disorders that occur as co-morbid conditions with fibromyalgia. As you can imagine, having issues with sleep does nothing to help the fatigue that already comes with being in chronic pain.

Insomnia is the inability to fall asleep. Such a simple definition which does not convey the frustration and helplessness that comes with it. Combine it with chronic pain and it is soul breaking.

Restless leg syndrome is characterised by an overwhelming urge to move the legs, particularly when trying to fall asleep. It has no known cause or treatment as yet. Thankfully, while I had started to develop signs of restless leg syndrome, for me it seemed to be associated with a deficiency in, or a higher requirement for magnesium, as it does not happen while I am taking magnesium supplementation. If you suffer from this, it’s probably worth trying magnesium supplementation. I am in no way saying it will cure it, I am just saying that it might help.

Sleep apnoea is a condition where you stop breathing during sleep. Suffers might be aware of it, as eventually the brain, in a desperate attempt not to die, will wake you up. But sometimes it doesn’t wake all the way up. The brain might only wake you just enough so that you breathe again. Either way it contributes to not sleeping properly.  Treatment varies from splints to pull your jaw forward so you don’t block your own trachea, to CPAP machines that use positive pressure air to force your airways to stay open. As far as I know, I only suffer from this when I have a head cold.

For me, the main sleep problem I have is non-restorative sleep. I generally don’t have too much trouble falling asleep, but staying asleep and waking feeling rested seem to be beyond me.

I find if I nap during the day, I then am unable to fall asleep at night. So as much as I want to, on a regular day, I avoid naps.

The main treatment for non-restorative sleep is to improve sleep quality. I take a multi-faceted approach to this:

  • Cutting down/out caffeine. I found I was needing more and more coffee/tea for it to help. The more caffeine I drank, the worse I would sleep, so I would have more caffeine and the cycle would continue. Cutting out the caffeine means that when I really need it – like for a function or particular type of headache, then it actually does something and I can have it early enough in the day that it doesn’t affect my sleep.
  • A comfortable mattress and pillow. Get the best quality you can afford. We have a Zen mattress that has a latex top, it helps reduce pressure on painful joints. I previously used a foam pillow, but I’ve recently been trialling a buckwheat pillow. I get a thumping in my ear when I try to lie on my side, and I find that the buckwheat pillow lets me dig a little hole for my ear to sit over and that stops the thumping so I can relax.
  • Use bolsters and cushions. Use as many as you need to improve comfort. Put a pillow between your knees if you are a side sleeper, or under them if you sleep on your back. I have issues with my shoulders, so I have a small cushion that I prop my hand up on when I lie on my side, and this relieves most of the pressure on my shoulder joint.
  • Quality linen in natural fibres. I choose bamboo or cotton. It really does make a difference. Also change them regularly. This can be hard when you have a chronic illness, but it really is worth it overall.
  • Comfortable bed-clothes. Gone are the cute little slip nighties that used to bunch up around my waist and leave my shoulders out to the cold. Now I have comfortable cotton or fleece PJ’s (depending on the time of year). The bonus to this, is I can answer the door when the courier delivers parcels at 7 am without a mad dash to cover myself up! In winter time, I wear socks and a beanie. I don’t care what others think, I just want to be warm.
  • Appropriate bedding for the temperature. My darling knight needs the air-conditioning on pretty much from October to April. I however, get cold super easily. So we have separate single sized doonas. In summer, I have a light bamboo one (balances out the tarnished knight’s air-con), the knight uses just an empty doona case, and in winter I have a lovely wool one (and sometimes blankets as well) and the knight gets the bamboo one. It works beautifully for us, plus, there’s no fighting over the linen!
  • Regular bed time. I try to make sure that I get to bed between 9 and 9:30pm. Any later than that and I know I’m adding to tomorrow’s toll. Sometimes it’s unavoidable, but if at all possible, I try to avoid evening functions. I usually wake up multiple times throughout the night and in the morning around 6 or 7 am, I generally can’t sleep any more – regardless of when I go to bed. So 9:30pm is the limit.
  • Reducing blue light at night. I’m not very good at this one. I’m a bit addicted to technology. I do have blue light filters on all my devices, which reduces the damage of screens, but doesn’t completely stop them. I won’t allow a TV in the bedroom. If I wake in the night and can’t get back to sleep, then I am very strict about not using any devices. As tempting as it is to go online and see who else is out there suffering from insomnia, it is actually the worst thing you can do. Light inhibits production of melatonin in the pineal gland and melatonin is the hormone the regulates sleep.
  • Which brings me to – melatonin. I take a drug called Circaden every night, which is a slow release formula of melatonin. Since taking this, I have noticed that when I wake up during the night, I usually manage to get back to sleep.
  • In the morning, I try to get some sun on my face. This inhibits production of melatonin at the right time of day and helps the body to regulate many of the other hormones that are needed for homeostasis.

When I am good about my sleep routine, and nothing else goes wrong (storms, barking dogs, neighbourhood parties, etc.) then I usually get a reasonable level of sleep. I wake up with my pain at a manageable level and I can usually manage to get a few things done about the house.

If I get slack or have a function on, or something outside my control interferes with my sleep, then I tend to find that the FibroTroll is much more demanding. When this happens, I have to learn to give myself permission to rest. To not get anything productive done and simply pay the toll. If I don’t then the FibroTroll will invite his family over, and it won’t be pretty.

Chronic fatigue and Fibromyalgia

Myalgic Encephalitis / Chronic Fatigue Syndrome is a common co-morbid condition of fibromyalgia. Some specialists argue that the two conditions are slightly different manifestations of the same underlying disease process. Others consider them to be two very separate entities – to the point where many suffers have been diagnosed with both as separate diseases.

Either way, it is very common for fibro-warriors to also suffer severe fatigue. (As if chronic pain wasn’t enough on its own!)

Most people have tried being over tired. It might be due to study, working too much, partying too hard, a newborn or a sick child. Any number of things might lead to being overly tired. So you would think that other people would understand. But while you might be able to understand bone weary tiredness, for most people this can be remedied with enough caffeine in the short-term, and a good long sleep to get you back to normal in the longer term.

But to truly understand fatigue in the sense of chronic fatigue, I think you have to actually experience it. It is being so tired that you are unable to keep your eyes open as soon as the lights dim, where it’s a struggle to put one foot in front of the other, where your muscles are so tired that you shake as soon as you stand up and you can’t lift a glass up to your mouth. Sometimes, it’s being so tired that sitting up in bed for 30 mins means you have to lie back down and have a nap to recover. But that sleep you get is not restorative. It might get you back to zero energy rather than negative. It is that horrendous sap of energy that a bad bout of influenza will give you, but it lasts for weeks or months, or for some people years.

Thankfully, I am not that bad most of the time. It takes a lot of management to avoid being that bad. Before I stopped working, that was pretty much my days off. Now it will only happen if I push too hard or the Fibro-Troll invites some friends over in the form of an extra injury or cold/flu.

So what do I do to manage fatigue?

I stopped working. This is not an option for everyone and it was a decision I really struggled with. For me, being a Vet was part of my identity. It wasn’t just what I did, it was who I was. Giving this up was one of the hardest decisions I ever had to make. And guess what? The world didn’t stop turning. I had 2 years of income protection insurance, which was a huge hassle and stress to get. But since then we have only had my Knight’s income. We’ve made sacrifices, but we manage. I’m a lucky woman.

Pacing. If I had to choose just one thing that I do to help manage fatigue, it would be pacing.

One thing that is very common among Fibro-Warriors and others with chronic illnesses is the boom and bust cycle. I was guilty of this (and sometimes still am). I would push until I had finished something instead of just going to bed. Or I felt a little better, so I would decide to clean the house or go shopping. I wouldn’t feel too terrible while I was doing it, but the next day or week the Fibro-Troll would have the whole family over for a reunion. I would barely be able to walk to the bathroom, let alone do anything remotely productive.

So I have had to learn to pace. This means setting a timer – on a good day this might be 20 or 30 mins. On a medium day, it might only be 10. On a bad day, I give myself permission to get nothing done. I do my housework or physical thing until the timer goes off. And then I stop (most of the time) and REST. If I do this, then some days I can do an hour or two of physical work spread out over the day and not end up crippled for the next three days.

Improve Sleep Quality. Non-restorative sleep or insomnia is very common and only adds to the fatigue. My issue is more the non-restorative sleep, although I do have occasional bouts of insomnia.

I will go into this in more detail in a post dedicated to sleep.

Vitamin and mineral supplements. I take quite a few supplements, but only one stands out as being specifically for fatigue, and that is vitamin B12. I take a sublingual (under the tongue) methylated version of B12. I accidentally ordered the non-methyl version recently and it simply doesn’t do the same job.

The other supplements I take that are partially for fatigue are:

  • Magnesium – I take a powdered oral form that has other vitamins and minerals
  • Vitamin D – one of the symptoms of low Vitamin D is fatigue, but it is important to have this tested before starting any supplements
  • Bioflam – I mentioned this in my recent post on dysmenorrhoea, it has a bunch of B vitamins in it that are supposed to help with fatigue.
  • CoQ10 – Co-enzyme Q10 is supposed to assist with ATP production (the body’s main source of energy) so it theoretically helps with fatigue. I’ll talk more about this when I write my post on migraines and headaches.

Hyperbaric Oxygen Therapy. I have an entire post dedicated to this. You can read more about it here.

Diet. A healthy diet avoiding processed foods and too much sugar is vital for me to manage my fatigue. If I let some “crap” sneak in, then the fatigue (and pain!) is much worse. I go into my reasoning in more detail here.

Chronic fatigue is a complicated and difficult symptom to manage. It is much more involved than just getting some more sleep. I still haven’t got it perfect, but it is a work in progress.