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.

Dysmenorrhoea – a pain in the….. uterus

I was inspired to write this series by a lovely young lady in one of my Fibromyalgia support groups. She is going through much more than a teenager should have to and I don’t think she realises quite how strong and brave she is. So for Beth, I am starting my series on the fibro-troll’s friends (co-morbid conditions of fibromyalgia) with dysmenorrhoea.

Dysmenorrhoea is the medical term for painful periods. I have heard that some women have regular 28 days cycles and barely miss a beat when they have their period. Maybe they feel a little uncomfortable, but can pretty much live their lives normally other than having to deal with a little bit of blood. If you are one of these women – I hate you. No, I don’t really, but I will admit to being very jealous.

For most of my life I have suffered painful periods. I think the first year or two wasn’t too terrible, but pretty soon I was curled up in a ball, taking very strong pain killers and missing days at school. I was always academically inclined – I didn’t particularly like or hate school, but I wanted to be a vet more than anything, so it was important that I do well. When I was fifteen I was put on the Oral Contraceptive Pill (OCP or “the pill”).

One thing many people don’t realise is that the bleeding you have when you are on the pill is not a real period. It is simply withdrawal bleeding. The pill causes your body to think it is pregnant so that you do not ovulate and the lining of your uterus is not stimulated to grow as much. When you take the sugar pills, your body responds in a similar way to an early stage miscarriage and you have a withdrawal bleed. For some women this causes no obvious problems and the OCP has been amazing for some.

There is no doubt in my mind that this fairly reliable form of contraception has improved the lives of millions of women. Much of the progress towards equality would not have been possible without the invention of the OCP. But I also think the potential side effects are very much downplayed.

For me, the pill turned out to be a disaster. For the first few months it was wonderful. I revelled in being able to postpone my “period” if I had a function or wanted to go to the beach. I had very little pain and my teenage pimples cleared up almost completely. My boobs grew very quickly which I didn’t like so much, but I learned to deal with that. (And I’m pretty sure my knight doesn’t mind that they did!) I stopped growing taller, so I’m a bit of a shorty, but that might have been my fate anyway. But pretty soon it stopped helping and my dysmenorrhoea returned.

So I headed back to the doctor. For the next few years I was on one different pill after another. I had no idea there were so many different formulations! Some of them helped the pain for a little while, some of them didn’t. But they all gave me one side effect or another. From constant nausea and stomach cramps, to weight gain, to extreme moodiness. Eventually I found one that seemed to be ok. My periods were manageable and I didn’t have any obvious side effects. Until I ended up in hospital with blood clots in my lungs. In the middle of university exams of all times! So that was the end of any type of systemic artificial hormone for me.

Since then I have been on quite a journey trying to deal with dysmenorrhoea. I have ended up in hospital a couple of times getting jabbed in the butt because I was in so much pain I was vomiting constantly. I have been diagnosed with Polycystic Ovary Syndrome – which means that not only are my periods painful, they are unpredictable too.

I also have endometriosis. This does explain my level of pain somewhat, but doesn’t make it any easier to deal with. I had an exploratory laparoscopy a few years ago to have the endometriosis confirmed and removed. It helped the heaviness of my periods, but didn’t make a significant difference to the pain.

Prior to the laparoscopy, I had a dilation and curette and had a Mirena IUD placed under a general anaesthetic. For a little while it seemed that this was the answer. It secretes a low dose of progesterone which is supposed to have little to no increase in blood clotting risk. Within a few months, my periods were almost non-existent. Everything seemed great. Then I noticed that I had very little libido and suffered from vaginal dryness. I was newly engaged, so this was a bit of an issue. Luckily my poor long-suffering knight married me anyway!

Unfortunately this was the least of my problems with the Mirena. I started growing haemorrhagic cysts on my right ovary. When these burst, the pain was horrendous. Pretty soon I learned to recognise the intermittent stabbing pain that signalled that another one was growing. It got to the stage where my doctor was willing to write a referral for an ultrasound without me coming in.

I started having Frequency Specific Microcurrent (FSM) therapy to treat the cysts.  Currently in Australia FSM is considered to be kind of like a tens machine and are only supposed to treat pain conditions. However I can tell you that over a period of about 16 months, when I had the FSM, the cysts would go away (confirmed on ultrasound), if I didn’t they would burst (confirmed by pain!).

As soon as I had the Mirena removed, the cysts stopped. My right ovary still feels the need to make a song and dance about it whenever it decides to ovulate, but I can deal with that level of pain.

So where does that leave me?

No OCP, no implanon, no depo provera injection, no Mirena IUD. Surgery didn’t help. So modern medicine has nothing left to offer me other than pain relief. Opioids mess with my head and make me constipated, so I take them very rarely. The only NSAID (Non-Steriodal Anti-Inflammatory Drug) that completely removed the pain for me was taken off the market.

It’s taken many years, and it is still a work in progress. But here’s what my naturopath and I have come up with:

  • A diet that is low in sugar and grains, but high in vegetables, healthy fats, grass-fed meat, chicken and wild caught fish, and loads of fermented foods. Since April I have been doing GAPS and this is working wonders for my IBS, which in turn helps reduce the amount of cramping I have during my period.
  • Chaste tree (Vitex angus-castus) in a liquid herb form every day, this helps regulate my cycles and reduces PMS.
  • A supplement called bioflam – This contains turmeric extract
    Bioflam supplement

    plus a blend of vitamins and mineral that help reduce pain and inflammation.

  • Magnesium – Epsom salts in the bath, magnesium oil spray and an oral powdered supplement.
  • FSM to help my ovaries to actually ovulate. If I have a relatively normal cycle (for me that is 35 days) then the PMS is not as bad and the cramps usually aren’t either. If I just let it go and I have a 40,50,60,70 day cycle, the PMS and cramps get progressively worse. I stopped doing this for a while and the pain has been progressively getting worse, so I’m headed back for a treatment this week.
  • Turmeric drinks – I have these as well as the bioflam. They taste good and reduce my need for other anti-inflammatory drugs.
  • Heat packs – I have a few of these in various forms. I have wheat and silicone bead bags that can be heated in the microwave. I also have some gel packs that have a disc in them that when you snap it causes a chemical reaction that produces heat. These can be boiled to be reset. These are nice and small and can be slipped under a pair of jeans if I have to leave the house.
  • Essential oil massage blend – I make this myself using the book “Like chocolate for women” as a guide. Some people argue that essential oils are just a placebo – I don’t really care. Even if it is only a placebo, they help a little and they smell nice.
  • Acupressure. I am not a trained reflexologist, but there is a point below the ankle either side of the Achilles tendon that when pushed firmly can help reduce cramping. I find it is most effective if I get my knight to do it as I struggle to keep a sustained pressure with my fibro hands.
  • Pain relief. Despite all this, I still need pain relief. I have tried lots of things over the years. Ponstan does next to nothing, Tramadol makes me completely loopy and significantly impairs my ability to function. There used to be an awesome arthritis NSAID called Vioxx, but it was taken off the market and the similar drugs Mobic and Celebrex just aren’t as good. I have found that Naproxen/Naprogesic (an NSAID marketed for period pain) and Buscopan (an intestinal antispasmodic)  in combination to work quite well. I discovered buscopan for period pain at one of my trips to hospital – incidentally it really stings as an injection! If I take these two drugs when I first start getting cramps, then I can usually avoid taking anything else. If I have to, I will take a paracetamol/codeine combination, but I try to avoid it as codeine is not my friend.

If you have made it this far – congratulations on your effort! And commiserations, as you probably suffer as I do. I hope you have found something that helps you and I send you virtual chocolate or ice-cream, heat packs, and lots of sympathy.

Co-morbid conditions

I am a member of a few online support groups for fibromyalgia. One re-occurring theme is that very few of us fibro-warriors have only fibromyalgia to deal with. Unfortunately, the Fibro-Troll has friends.  These friends are more accurately described as co-morbid conditions.

Co-morbidity is the presence of one or more additional diseases or disorders occurring together with a primary disease or disorder. It doesn’t mean that they are caused by each other, or that everyone who has one condition will automatically have the others, but some conditions commonly occur together.

Common co-morbid conditions of fibromyalgia include (but is not limited to) :

  • Myalgic Encephalitis/ Chronic fatigue syndrome – some specialists argue that ME/CFS and Fibromyalgia are slightly different manifestations of the same underlying illness, others regard them as two different disorders. Either way, they commonly occur together.
  • Migraines and persistent headaches
  • Dysmenorrhoea (painful periods) and PMS
  • Other pain disorders – arthritis and back problems are common
  • Irritable Bowl Syndrome and food intolerances – I’ve talked about gut health  and why I believe nutrition plays a role in our health a little already.
  • Sleep disorders – insomnia, restless leg syndrome and sleep apnoea are all common
  • Anxiety and Depression – to be clear, Fibromyalgia IS NOT CAUSED by depression or anxiety, but they are common co-morbid conditions.
  • Vestibular and balance disorders
  • Multiple Chemical Sensitivities

These are just the most common ones, some of them are so common among fibro-warriors that they are sometimes considered symptoms of the condition.

I personally have all of these to varying degrees. I also have PCOS (Polycystic Ovary Syndrome) and endometriosis and I am highly sensitive to many of the traditional medications used to treat most of these conditions.

As they are common co-morbid conditions, I am going to start a bit of a series on what I do to manage each of them. I will try to keep each post as specific as I can, but some things will overlap, as nothing in the body works entirely independently of the rest of it.

My aim is to help others with any of these conditions, whether or not you also have fibromyalgia. And also to help myself, sometimes by putting things down in words they become clearer. If I am suffering a bit more from one of them, or I’m having a fibro-flare, then I can remind myself and my wonderful knight in tarnished armour of what we can do to help.

Social life and Fibromyalgia

The FibroTroll interferes with every aspect of your life. He robs you of sleep, takes away your health, independence, energy, job, balance, and your social life.

It’s hard to explain to someone who doesn’t have a chronic illness. It’s really difficult for most of your family and friends to really comprehend how hard it is to be sick 365 days a year. Good days mean I can go to a function, but some days walking from the bed to the toilet is about all I can handle.

Even on a good day, I always have to think about the FibroTroll.

  • What time of day is the event? Personally, I know that an evening event is going to be much more difficult for me to make, and if I do, it’s going to use up more energy than at other times of the day.
  • How long is it expected to go for? An all day event is generally not an option for me. But if I know I can go somewhere and lie down in a quiet dark room in the middle somewhere, then I might be able to manage.
  • How much prep do I have to do? Hair and make-up for a wedding is more involved than putting on some sunscreen and a hat for a BBQ.
  • How far to I have to travel? Some days the nausea is worse than others. Most days 10-20 mins in a car is ok, and it’s only longer trips that trigger the nausea. Sometimes, I’m nauseated from the moment I get into the car until 30-60 mins after I get out. Plus travelling uses up energy. Even when I’m just a passenger.
  • What sort of temperature is the venue likely to be? Many people with Fibromyalgia have issues with thermoregulation. In my case, I get cold very, very, easily. If it’s summer, then I have to consider if the venue is air-conditioned.  On the rare occasion that I go to see a movie, I wear jeans, enclosed shoes and bring a cardigan – even in the middle of summer. I always have to be careful not to get too cold, or I will trigger a flare.
  • How loud is it going to be? Is it in an enclosed space with loud music? Or outside where joyful squeals of children will be diffused? I take earplugs to the cinema with me to dampen the noise. Too much noise stimulation triggers a sensory overload and I will run out of energy much faster than when there is less or no noise. Also, when there’s loud background noise and I am trying to have a conversation, it takes more energy to project my own voice.
  • Will there be much walking or stairs? I have to allow extra time for even a short walk from a car park. And stairs – I absolutely have to bring my cane. This generally comes with me anyway, but stairs make it a must.
  • Will there be much standing up? If the entire function is going to be sitting down, and the car park is nice and close, then I might be able to wear some cute kitten heels. Otherwise, I have to wear flats. (Which is most of the time.) I haven’t worn heels in years.
  • Can they cater for my dietary requirements? The answer to this is usually no. I don’t expect most people to go to the level of effort required for my issues. If it’s at a restaurant, often if they have said yes they can, it turns out that the food is either bland and boring and I get to pay extra for something that I can make better myself, or they got something wrong and I end up with an IBS attack a few hours later. So most of the time, I bring my own. This again uses up more energy. I have to plan and pack my food. I have to keep it cold and/or work out how to heat it up and I have to make sure I bring enough so that I don’t go hungry. But it’s better than eating something that makes me worse.
  • Is it at a time of day when I have to take medications or supplements? If yes, can they wait until I get home,  can I take them early, or do I have to bring them?

And that’s all the things I have to think about if it’s a GOOD day. In some ways, there are less things to think about on a bad day.

  • Can I get down the stairs and back up again? No. Well I’m probably not going then.
  • Is it a wedding? Yes. Oh shit. Take the meds that will give you a short boost, but make you worse, have a cup of coffee and try really hard not to think about how much worse you’ll be tomorrow and for the next week.

It’s hardly any wonder that many people with fibromyalgia end up completely cut off from friends and family. Most of the time I’m pretty lucky with my family.

For example, for my Mother-in-law’s big decade birthday this year, we had a small but fancy dinner. We hired a private chef, who easily catered for my dietary requirements. He came and cooked and served a three course meal and cleaned up afterwards. I cannot recommend Pierre highly enough.

It was absolutely delightful. Everyone came to our house, and I hardly had to lift a finger to set up with all the willing hands to help. I could see what was going in my food – and apart from eating too much, there were no unwanted side effects! There was no travel, hardly any walking or standing, I could lie down when I needed and even though no-one rushed out at the end, I was still in bed by 10pm!

Other things add to the difficulty. Many of our friends are reproducing. They are creating their own gorgeous little armies of mini humans. Our house is not child proof and this makes it really hard. I struggle to get out to see them, and they struggle to get out of the house with young kids and then have to monitor them if they come here. So there are many of my friends who I just haven’t seen for years. I worry that their kids will be in high school before I get a chance to catch up with them! And this is extra sad as I can’t make a mini-me of my own.

The FibroTroll really doesn’t want me to have fun or to nurture relationships. The only way I’ve worked out how to pre-pay the toll even a little is to have people come to my house. This means no travel, no packing food, no walking or stairs unless I go down the stairs at my own house and I can rest right up until people turn up. But that doesn’t work for everyone.

I wish there was an easy answer to this dilemma. But there isn’t, so I have to keep paying the FibroTroll.

 

 

 

Adding insult to injury – or injury to Fibro – either way, not much fun.

I’ve hurt myself.

I’m not even too sure exactly how I did it, but yesterday morning I ended up with stabbing pain all down the left side of my back. I did all the things you are supposed to do. Ice, anti-inflammatory drugs, gentle stretching, massage, I even got my TENS machine out.

I took extra care to be very good in my posture and rested all day yesterday. But when I woke up this morning I could barely wipe my bum (I know that’s probably TMI – but I assure you I managed with only a few four letter words).

So off to my physiotherapist I went. Bobby-Jo Strong at Pivotal Motion is a wonder woman. She does dress a bit more conservatively than the comic book hero, but I’m sure she could rock that costume if she wanted to! Honestly as long as she works her magic on my muscles, she can wear whatever she likes!

I’ve been seeing Bobby for a couple of months now, and I’ve been meaning to write about her, but it just hasn’t happened until now.

My first consult with Bobby was fantastic. The moment she told me that she was going to give me some gentle exercises, but that I was not to push myself to hard and cause a flare, I knew I had found someone who really got it.

She knows she can’t fix all my pain in 30 mins, so she works on the area that I ask her to – occasionally she does a little on somewhere else because she feels that I need it, and so far she’s been right every time!

When I rang today, she fitted me in quickly and spent the time I needed to release most of the tension in my back. As I write this, I still have a few twinges, but I am SO much better than I was. Since the physio this morning, I can get up without complete agony (plus I can wipe my bum without swearing!)

Unfortunately that much pressure on my muscles usually comes back to bite me the next day or two, but it’s still better than the amount of pain I was in this morning and yesterday. So I’m currently in my hyperbaric oxygen chamber, and I’ll be sure to get in again tomorrow.

Hopefully, I’ll manage to avoid a flare. But it remains to be seen if the FibroTroll was happy with his toll today.

What do you do when life adds an extra injury or illness to your fibro? I’d love to know.

Turmeric drinks for fibromyalgia

Turmeric lattes, Golden Lattes, Turmeric tea. Whatever you want to call them, turmeric drinks are all the rage right now. When we first discovered turmeric root in a community supported agriculture box, (thanks Food Connect), my darling Knight decided that turmeric was some kind of magical umami spice and tried to add it to everything he cooked. While I don’t mind turmeric in curry, I baulk a little when it’s added to bolognese  sauce. However, it does have some fantastic anti-inflammatory properties and can reduce pain. So I decided to try turmeric drinks.

I found that while it won’t touch a headache that’s already settled in, having a turmeric drink 1-3 times daily has significantly reduced the amount of pain relief tablets I need to take. This equates to pre-paying the FibroTroll’s toll somewhat, so I count it as a win!

The active component to turmeric that has all of these wonderful benefits is called curcumin. If you combine it with black pepper, some heat and some fat, it improves the bio-availability (which means your body absorbs it better). I personally think that combination on it’s own is not amazing in flavour, so I add in some other spices.

  • Black pepper – as well as improving bio-availability of other compounds, black pepper has anti-inflammatory properties of its own.
  • Cinnamon – because it tastes amazing and is anti-inflammatory, and may give relief to suffers of arthritis. Make sure it’s the Ceylon variety as it is the one with the most benefits.
  • Cloves – possibly my favourite spice, I just love the taste and smell! It also has anti-inflammatory properties and has been reported to assist in bone preservation and may have aphrodisiac properties – winning!
  • Cardamom – Also has anti-inflammatory properties and is reportedly antispasmodic and may have antimicrobial effects.
  • Ginger – Good for nausea, reducing inflammation and boosting the immune system.

Now because I’m having these every day, it gets very tiresome to mix up a little of every spice into a cup each time. So I make up a mix and it lives in the cupboard with our coffee and tea. Here’s the recipe for my FibroTroll fighting Turmeric Drink blend. Please note I use Australian metric standard measuring spoons – this means 1 tablespoon = 4 teaspoons. If using American tablespoons which = 3 teaspoons, then use 4 tablespoons of turmeric powder and leave the rest the same.

Recipe for my FibroTroll fighting Turmeric Drink

(makes approx. ½ cup)

Ingredients:
  • 3 TABLESPOONS Ground turmeric
  • 3 teaspoons Ground Cinnamon
  • 3 teaspoons Ground Cloves
  • 3 teaspoons Ground Cardamom
  • 2 teaspoons Ground Ginger
  • 1 teaspoon Freshly ground black pepper (As fine as you can)
Method:

Mix all the ingredients thoroughly with a dry spoon. Transfer to an airtight container and store in a cool dark place away from direct sunlight.

Then, simply take a teaspoon of this mix, pop it in a cup, add boiling water, some honey, and a generous blob of coconut cream and give it a good stir. It will leave sediment at the bottom, and this is full of awesomeness, so if you can handle it, swirl up the last bit of drink with the sediment and drink it all up!

If you are new to it, start with a ¼ teaspoon per cup and slowly increase. You could also add some to a cup of your milk of choice and gently simmer. The honey is completely optional, I just think it tastes amazing.
If you suffer from chronic pain, then it’s probably worth a try, if nothing else it gives you a tasty warm drink that is an awesome alternative to coffee if you are trying to cut down on caffeine. Be careful though – it will stain if you spill it on light fabrics!

If you don’t like or don’t have one or more of the extra spices, swap them out for something else. Use more of the spices you do like, or substitute in some powdered vanilla, nutmeg or allspice or just leave them out.

If you are on any medication, check with your health care professional regarding possible interactions. I shouldn’t have to say this but – if you are allergic to any of the ingredients – DON’T CONSUME THEM!

UPDATE: 24 Jan 2019

If you would like to read more about the benefits of turmeric and cucurmin, I found this article very informative. Lyfe botanicals has quite a few articles on the benefits of turmeric and curcumin including this one on the benefits of turmeric for Fibromyalgia. Cognitune also have turmeric in capsules, so if you can’t quite stomach a turmeric drink, then it might be worth having a look at their supplements. I haven’t tried them, but in this heat we are having in Australia at the moment, I am tempted!

Cheers!

Diet, Energy and Fibromyalgia

Food is such an important part of life. I know that sounds a bit trite, but hear me out.

Not only does it sustain life, but it forms so many social functions. What happens at a wedding? Two people pledge their lives to one another, then everyone shares a meal of some form. A birthday – that might be at a restaurant, it might be a BBQ or it might be afternoon tea in the park. A date with a potential lover? Dinner. Someone is sick or has a family member in hospital? Make them food. Funeral or wake? – again, there is food.

I love to feed people. I am a compulsive feeder. Turn up at my house and I will try my hardest to make sure you eat something before you leave. Feeding people was one of the best bits of our recent family holiday. I really think it should be a love language all of its own.

Somehow in today’s society food has decreased in importance. Convenience is valued over quality. Even a lot of medical practitioners fail to see the connection between food and health. Many of my fellow fibro-warriors are quite sure that the food and drink they consume has no baring whatsoever on their symptoms. Maybe for them this is true. But I doubt it.

Every function of the body requires energy to work. Even breathing requires the movement of your diaphragm and intercostal muscles. The energy required for this is manufactured by the body generally in the form of adenosine triphosphate (ATP). That ATP doesn’t just appear in your body, it has to be made. It is produced from fats, carbohydrates or proteins via different methods which essentially all end up in the Krebs cycle. If you want to know more about this, I recommend getting a hold of a good physiology textbook.

But the short version is, the body needs fuel. Hormones like insulin, glucagon, thyroxine and others help your body to convert food to fuel. Those hormones also have to be made by many organs in the body and they also use the food you eat to do this. 

Plenty of people say detoxing is crap. That your body does this naturally. That alkaline foods are useless, because your kidneys and your lungs will compensate for any changes in body pH. This is true. But again, this needs energy. Your kidneys and lungs will use up your precious reserves of ATP in regulating your bicarbonate stores and altering your respiratory rate.

People with Fibromyalgia and other chronic illnesses like Myalgic Encephalitis (ME/CFS) and related illnesses are usually running on low ATP. For reasons that are so far unknown, we Fibro sufferers simply don’t produce enough of it. We only have so much in reserve, and when it is gone, it can take days to build it back up. Most of the time, we cannot simply lie down and wait for the ATP levels to build up, so we keep going, using up every single molecule as soon as it is produced. Because even walking to the toilet needs ATP.

The more processed, chemical laden, sugary, transfatty food you put into your body the harder it is for your body to use that food. The more alcohol and caffeine and other stimulants that your liver has to process, then more energy it uses to do this.

If you feed your body good food. A variety of good fats, healthy carbohydrates in the form of lots of vegetables and fruit – and whole grains if your body can cope with them, and healthy proteins then it will make it easier for your body to produce ATP. You also will not be wasting as much ATP on regulatory functions.

Whether you believe in evolution or intelligent design – the result is that our bodies have a relatively small stomach, that produces hydrochloric acid and pepsin – these are things designed to breakdown animal products. My personal opinion is that meat and animal products can form a part of a healthy balanced diet. Out gut microbiome (the bacteria in our gut) digests our carbohydrates – so we need to be looking at this too.

Now, this is just my opinion. I’m not a medical researcher – I have a scientific background in the form of a Veterinary Degree, not human medicine. I am continually reading anything I can find that might relate to my fibro. I have experimented on myself and I KNOW that diet has a direct effect on MY symptoms. I stick to an organic or pesticide free diet, make everything from scratch and consume lots of bone broths and fermented vegetables. If I deviate from this too much, my symptoms are worse, so I stick with it. The FibroTroll wants his organic hippy food, so I have to comply.

I am not saying that diet alone will cure Fibromyalgia. But I do think that it can help, if you find the right one for YOUR body. I have tried many different diets, some helped a little – helped me to identify certain triggers. Some made me worse, like the low salicylate diet. Some made no appreciable difference. So far the one that has helped me the most has been GAPS. This is an intensive gut healing diet and it has allowed me to introduce foods back into my diet that I haven’t been able to eat for years.

There are many teams of researchers around the world who are researching the cause and potential treatments for Fibromyalgia and many other chronic illnesses. Some of these are looking at the intestinal microbiome and my gut feeling (pun intended) is that the answers will stem from here.

 

 

Hyperbaric Oxygen Therapy for Fibromyalgia

Fibromyalgia is a frustrating syndrome to deal with. The FibroTroll likes to hide out in dark places and beat you at every opportunity. One of the most difficult things to deal with, on top of actually having Fibromyalgia, is the lack of effective treatment options. There really is no medication or surgery or treatment that is known to help in all cases. There’s lots of drugs you can try, that might treat one or more of your symptoms, but they might also give you side effects that are as bad or worse than what you were trying to treat! Sometimes, it feels like all you’ve done is feed the Troll the equivalent of anabolic steroids and made him cranky!

When a new study comes out, I tend to read it with equal parts optimism and scepticism. I try to stay hopeful and I am incredibly grateful that there are healthy individuals who are willing and able to perform research into this condition. One such study was published in 2015. It explored the possibility of using Hyperbaric Oxygen Therapy to treat Fibromyalgia patients.

Hyperbaric Oxygen Therapy (HBOT) has been around for centuries. You may be familiar with it in reference to treating deep-sea divers with decompression illness (The Bends). In modern medicine HBOT is used to treat many conditions including (but not limited to) smoke inhalation, non-healing wounds, cancer and cerebral palsy.

The article I mentioned studied 48 women with Fibromyalgia and treated them in two groups with HBOT. They found that while some of the patients had an increased level of pain for the first 10-20 sessions, almost all the participants in the study showed a significant improvement in quality of life and pain levels. Many of them were able to stop or reduce their medications.

Encouraged by this study, I started researching HBOT. The study used HBOT at 2atm (2 x atmospheric pressure). This level of HBOT is only available in hospitals, and only for certain approved conditions, and Fibromyalgia is not yet on that list. However, mild HBOT (1.35-1.4atm) is readily available in many places and doesn’t need any sort of referral. I found that for HBOT in general there were very few side effects, especially at the lower pressure levels. There are some contraindications such as lung disease, claustrophobia, or ear problems. Not suffering from any of those, I decided to give it a go.

While the benefits of this level of HBOT might not be as profound, I decided I wasn’t willing to wait until further studies were done and HBOT finally got recognised as a treatment for Fibromyalgia before trying it out. After all, there’s only been a couple of pilot studies, and there will have to be a LOT more studies performed before anyone is willing to say it works with any degree of confidence. So, with a quick google search, I found Advance O2. Advance O2 currently have locations in Toowong, Brisbane and Maroochydore on the Sunshine Coast. I rocked up to my first treatment, a little nervous, but hopeful.

I started with a couple of 60-minute sessions, then soon increased it to five 90 minute sessions a week. The sensation of the chamber filling is not unlike flying in a plane, with the pressurisation and depressurisation similar to take-off and landing. If you yawn a bit, the blocked ear sensation quickly settles. For the first few weeks, I also noticed some drying of my nasal passages, which was easily relieved with some saline nasal spray after a treatment. During the session, you breathe concentrated oxygen via a mask like this one.

HBOT mask

Within a few short weeks, I noticed an improvement. The fact that I could leave my high set house, interact with people, have a treatment, and get back up the stairs to get home, five days a week, was an improvement on its own! Sometimes, following a treatment, I was able to go to lunch or shopping with my mum without being completely wiped out afterwards. After a couple of months, I tried reducing the frequency of my visits. Unfortunately, I found that the improvement did not continue if I reduced my days. So, my darling knight in tarnished armour came to my rescue again – he suggested we buy one!

Now, buying your own HBOT chamber is not cheap, and you need to have a place where it can be permanently set up. Luckily, there are chambers that are slightly smaller than the ones available at Advance O2. I sourced mine on Ali Baba and bought the oxygen compressor in Australia. Making a purchase this big from China is not without risk, so I’m not going to give you links, you’ll have to research it yourself. However, there are reputable companies that sell HBOT chambers in Australia – they cost a little more, but they’ve done the hard work for you.

This is my HBOT chamber.

HBOT chamber – aka “The Whale”

We call it the whale – I’m sure you can see why. It sits in the corner of my craft room and when I’m not using it, my dragon (cat), Terry, used to like to sleeping in it.

I can breathe the oxygen through a mask like the one pictured earlier, but I prefer the headset that came with my chamber – it looks like this.

 

Once the chamber is inflated, it is actually quite roomy. If you are claustrophobic I do not recommend it, but I am quite comfortable. Here’s what it looks like inside.

I get in my whale 5-6 days a week – in fact, I often write my blog posts in there! I tend to stay about 90mins, I’ve stayed longer, but I’ve found that seems to be a bit draining. I recently suffered a bout of sinusitis and if you’ve ever flown with blocked sinuses, then you know how uncomfortable increased pressure can be in that situation. So I had a couple of weeks off from my whale. I can tell you I missed it.

My conclusion on mild HBOT? It’s not a miracle cure for Fibromyalgia, but it does decrease my pain levels and increase my energy and therefore improves my overall quality of life. I think of it as another weapon in my arsenal for fighting the Troll

What I did on my holidays…

With a nod to my favourite author, I decided to write a post about my holidays.

I’ve just returned from a family holiday for a week in a holiday house on Bribie Island. It was lovely. I am lucky enough that I get along very well with my husband’s family. I have, in fact, hit the jackpot when it comes to in-laws. There were seven of us in total, my husband and I, his parents, his two brothers, and his older brother’s wife.

Going on a holiday when you have a chronic illness like fibromyalgia is not an easy task. There are dietary restrictions which making eating out almost impossible. There’s all the self-care you need to do to keep yourself running (Epsom salt baths, yoga, early bed time etc.). And then there’s the challenge of what you actually do while you are on holidays.

One of the main reasons for choosing Bribie, was my father-in-law’s love of fishing. So most mornings, he and a varying number of apprentices headed off to catch our lunch for the day. I would have loved to go, but walking through sand, casting and then standing for a few hours would have used up far too much energy.

So instead I did one of the things I love to do – feed people. I spent a lot of time in the kitchen! I made frittatas, waffles, parfaits, French toast and pikelets for breakfast (not all on the same day). I crumbed freshly caught fish in coconut, roasted chickens, marinated beef ribs, made peanut butter ice-cream and generally tried to make sure everyone went home a kilo or two heavier than when they arrived. The best bit? – I didn’t have to clean up! My knight in tarnished armour and all of his family happily cleaned the kitchen after every meal. (My knight was pretty happy that he didn’t have to do it all himself either!)

Another of my favourite things to do is to play board games. I was lucky enough, that this was something we had discovered prior to me getting ill. So we have been able to continue doing this and it is a relatively low energy activity that we enjoy. I’m not talking about Monopoly here. I’m talking games that win awards for design and gameplay and general all round awesomeness, like Puerto Rico and Carcassonne. We spent many, many hours playing games. The dining table (left) spent a lot of time covered in board game pieces.

 

 

Just as well there were plenty of other places to eat when the weather was fine – like this outdoor table (to the right) with a view over the canal.

 

I also started to learn calligraphy. My mother-in-law, Tricia, is a calligraphy artist and she very kindly gave me some one-on-one lessons and it has been wonderful to give my brain a new thing to do. If you want some work done or would like lessons of your own, her website can be found here.

I did spend a little bit of time in the pool. While it was lovely reducing the effects gravity has on my fibro, the Fibro-Troll was sitting and waiting when I got out. So I only went in the once. However, I did have some lovely relaxing company with my mother-in-law and sister-in-law-in-law (what do you call your brother-in-law’s wife??) sitting at the outdoor table, eating ice-cream and making things with yarn.

While I didn’t have as many adventures as Twoflower, I did thoroughly enjoy my week away and am hoping it will become an annual event.

What do you do on holidays that doesn’t use up too much energy? Let me know, I’m always looking for more ideas. And if you know the book or author I’m referring to, feel free to chime in about that too!

Coping with Grief

Any form of stress has the potential to cause a flare. It could be physical in the form of having done too much or in the form of a cold or flu. Or it can be mental.

This is not to say that Fibromyalgia is “all in your head.” It’s not. But depression and anxiety are common in sufferers of chronic illness. After all, we have lost a lot. Our health, our independence, often our jobs, social lives and ability to care for others. Once upon a time, we were house-proud, enjoyed gardening, walking the dogs, social activities and work. Now there are days where getting from the bed to the bathroom is a struggle. It’s bound to get you down.

Add to that an extra stress and the Troll rears his ugly head – and brings the family. In my case, we have recently lost our fur-baby Terry. We knew we didn’t have much time left with him, but his loss has still hit me hard.

So I allowed myself to take a few days to indulge. Personally I am a bit of an emotional non-eater, but I love to cook. So, I baked cakes that I can’t eat, I made toasted muesli (that I also can’t eat), 2 vegetarian lasagnas (one of which I can eat!), GAPS friendly bread and GAPS friendly waffles. I also made an awesome brie stuffed chicken thigh, which I’ll post the recipe for soon.

Now I’m exhausted, but so far, I haven’t flared too badly. The Fibro-Troll is sitting in the background, thumping his club on his hand in a very threatening manner. Last time I lost a fur-baby I had a flare that lasted weeks, so I have to make sure that I take it a little easier. I’ll hop in my HBOT chamber, have a long soak in the bath with Epsom salts and try very hard to take it easy.

I have given myself permission to grieve, and I think that this is part of the key to not having a massive flare this time.

My very non professional advice for dealing with grief is fairly simple.

  • Give yourself permission to grieve
  • Find something you enjoy and do it at least once
  • Keep up with self-care. Remember to eat healthily, have a long bath, go for a massage if you can
  • Take the time it takes to heal.

Now, I’m going to try very hard to follow my own advice.

How are you? What not to ask a person with Fibromyalgia

Only someone with a chronic illness knows how truly terrifying this question is.

When it is just a platitude, or coming from someone I barely know or probably won’t see ever again, then it’s not so bad. I can plaster on my fake smile and say, “fine thanks, and you?”

But when it’s family or a friend, someone I care about (and who cares about me) then I dread it. Partly because they really do want to know. I don’t like lying to people I care about. I also don’t like to whine. Also, I don’t really want sympathy. I want people to understand, but I don’t want their pity.

If I’m at the BBQ, birthday party, casual catch-up or whatever, then I’m probably having a good day. That doesn’t mean I am symptom free. It means that my dizzy spells are short and don’t make me too unstable. It means my pain levels are at around a 3 on most people’s pain scale. It means my IBS is under control and that low-grade nausea that I regularly deal with is currently abated. It means I had the energy to have a shower and put on make-up. I might have needed to sit down for an hour after that, but I managed. It means I have taken extra medications and probably did nothing productive the day before. It means I got down the stairs of our high set house and I’m reasonably sure I’ll be able to get back up them.

So how do I answer that dreaded question? I try to be as honest as possible. I say it’s a good day, I smile and change the topic. If they ask again, usually because they are genuinely concerned, then I talk about the latest thing I am trying in my quest to battle the FibroTroll.

I don’t tell them that it means that I’ll have a soak in the tub with Epsom salts and a session in my HBOT chamber to try to avoid having the Troll send me to the debt collectors! I don’t explain that my poor Knight in tarnished armour will have to pick up his shield and sword and tackle all the things that will need doing when we get home. He’ll run the bath for me, then he will have to help me out of the bath, and probably help me dry myself and get dressed. He’ll help me get in and out of my HBOT chamber. He’ll make dinner and clean the kitchen, and if he wants some music on, it will have to be through headphones, so the noise doesn’t aggravate the Troll.

If the function is a big event like a wedding, then I’ll be there even if it’s not a good day. On those days, I dread the question even more. How do you tell the happy couple on their special day that it feels like your skin is on fire, your joints and muscles ache, noises are making your ears throb in a way you never thought they could before you got sick? That you couldn’t even get your own shoes on and your sense of worth is hovering down somewhere near the Titanic? How do you say that, really, all you want to do is curl up in bed and cry?

Those days, I lie. I plaster on that fake smile, tell them I am doing well, and change the topic. It’s easy to do at a wedding, you comment on how beautiful the venue is, how lovely the service was, how great the bridal party looks. There’s endless things you can change the topic to at a wedding. If there’s one thing the FibroTroll has taught me, it’s how to change the topic away from my health.

But long-term, that’s not going to help. Fibromyalgia is becoming more and more common. I regularly hear of someone’s friend or cousin who has either had it for years or just got diagnosed. I am a part of several support groups where people don’t have friends and family who are as genuinely caring and understanding as mine are. For these people, I need to learn to tell the truth more often. I need to answer that dreaded question, in a way that spreads understanding. So, I’m going to try.

The first step in that journey was to start this blog. Partly, I’m writing for myself. I am uncomfortable talking or writing about myself. I dislike dwelling on the pain, the isolation, the sense of loss that comes with giving up your job and independence. My psychologist has been helping me find a new, meaningful life that works with my Fibromyalgia not against it. In writing this blog, maybe I can form a semi truce with the Troll and we can work out a more consistent toll. And partly, I’m doing it for the other Fibro-warriors out there. If something I do helps one person get a little bit of relief from their symptoms, or if something I write helps one partner, friend, or family member of a warrior understand, then it will have been worth it.

People who do not have a chronic illness cannot empathise with the struggle of being sick EVERY SINGLE DAY. But the more people know about Fibromyalgia, and the more awareness there is of this bloody awful illness, the more understanding there will be of the struggles we face. If you are a “normie” (a person who is not chronically ill) please stop before you ask that question. If your chronically ill friend or family member looks like they are struggling, maybe ask if you can get them a chair, ask them if they’ve read a good book lately, or seen the latest episode of that show you like. Give them something other than that dreaded question to answer. If you really want to know how their health is going, ask if there’s been any new research published, or if there’s a new treatment they are trying. Giving them a gentle hug and saying, “I’m so glad you made it, I was hoping you would be having a good day today!” will do so much more for a chronically ill person than forcing them to find a suitable answer to “How are you?”