My Story with Fibromyalgia

Before my diagnosis, and in fact before a lot of my symptoms started to appear I was a working singer-songwriter. I was doing hundreds of gigs a year, hours upon hours of stage time and then running that as a business behind the scenes, booking the gigs, invoicing venues or agencies, talking with brides about what music they wanted at their wedding… At one point I was also studying at university full time and on top of all that I was a single mother, sometimes having to busk for extra money to support our little family of two.  I was definitely burning the candle at both ends and perhaps that contributed to the onset of my condition.  I am one of those ‘type A’ personalities. I’ve never really been happy unless I’m achieving something or working towards achieving something, one thing is generally not enough and for some reason all my goals have been ridiculously huge. I do mean ridiculously huge.  I like to work hard. I like to aim high. I like to feel like I’m making a difference. I like to work to deadlines and push myself. What I wasn’t so good at was listening to my body, stopping and resting when I needed to… so perhaps it was a perfect storm of contributing causes along with the fact that I simply pushed my body past breaking point without making sure it had what it needed to be healing and functioning well.  I have a number of theories about my own condition but I’m afraid that’s all they are - theories.

I think from memory it started with me getting tired.  Tired isn’t as easy to remember as the pain and once the pain started pain and tired went hand in hand.  I can push past tired. I can push past some levels of pain and I certainly did that. However eventually, working together persistently and over time, the pain and tiredness rendered me useless.  Some days I found it hard to function at all. My brain was mush. I was forgetting things. I couldn’t speak properly. I would think something and go to say it and it would come out gibberish.  I felt stupid and weak and powerless. Sometimes I would take painkillers and just push through whatever I had to do. Other times I just cancelled things and cried because I had let people down. I wasn’t the type to cancel because of illness - namely because I needed the money and if I couldn’t work then I didn’t have any.  I still remember doing gigs so sick that I was running off stage to go and vomit and then going straight back into it. Gross, but true. I was committed, that’s just how I was.

I was with my now husband for about a year before fibromyalgia kicked into full gear.  When we met I could sustain adding an extra human or three into my agenda. Having two extra children to worry about didn’t seem to be any extra strain on an already hectic lifestyle.  I was happy to be sharing my life and doing all the things a mother and a step mother does. Slowly but surely however, the pain in my body and the accompanying fatigue started to take over my life.

My social life went first, as it does.  After everything else I just didn’t have the energy.  I couldn’t travel to see my friends or make the two hour drive to see my family. Sometimes it took me six hours to do that two hour drive simply because I had to stop so many times so I didn’t fall asleep at the wheel.   It got to the point that I had to stop doing gigs and performing live because if I did that on the weekend it meant I had nothing left for the rest of the week. I would have nothing left for my husband and children. Eventually I also stopped going to Uni because I was too tired to function by the time I got home and before that even after the travel to get there I was too tired to take in the classes properly.

By this stage I was living with my husband who, very thankfully, had a job that sustained us financially once I couldn’t work anymore.  There were days when I couldn’t function that he did everything.  From cooking and cleaning to getting the kids ready for school the next day.  When it was at its worst all I managed to do was lie there, crying, and wishing I was my old self.  It was breaking my heart and it was only made worse by seeing the effect it was having on the people I loved who were doing their best to be patient with me and getting constantly let down by me bailing on fun things or not being able to do the normal things a mother and a wife does, like… oh I don’t know… smile…  I still feel sorry for him occasionally. He fell in love with someone completely different to who he ended up with. I hate feeling like I’m disappointing people and I was very often left feeling like a major disappointment to everyone including myself.

I knew something was seriously wrong with me and I knew I wasn’t just depressed (as depressing as the situation was I still had the desire to do things just no energy or ability to do them). I knew I needed to do something.   I wasn’t getting answers from the doctors.  My iron levels weren’t low. Vitamin B12 levels were fine.  No rheumatoid arthritis… Lucky I’m the type that just naturally has a researcher mindset and I’m also as stubborn as they come once I’ve made my mind up and I had made my mind up to find some answers.  I actually like reading (thank God), I like knowing how things work and I like figuring things out which is a very fortunate thing. Turns out it’s probably even a fortunate thing for other people as well now that I have my own practice helping people with chronic illness. I can’t even imagine what would have happened if I didn’t have that sort of mindset and personality type.

I had a gut feeling I had Fibromyalgia.  I didn’t think it was any of the other conditions that were possible with my symptoms but I also knew that Fibromyalgia had no cure, was widely misunderstood and could get progressively worse.  Yay. When I went through all the tests (which basically just rule everything else out until all you’re left with is Fibromyalgia), I refused to take the diagnosis and went through the whole entire process again to get a second opinion.  The first doctor was the one who told me that it was long term and that there was no treatment - none. Like there was absolutely nothing I could do about it. Just give up. Thanks a lot for that. I’m glad that I was stubborn enough to not take that for an answer.

The second doctor wanted me to try a low dose, tricyclic antidepressant (the theory being it coates the pain receptors thereby bringing your pain levels down).  I explained that I was super sensitive to everything (at that stage I couldn’t even go outside without sunglasses on) and that in the past I didn’t gel too well with antidepressants. She assured me that the dosage wasn’t even equivalent to what you would give a child, it was 10% of the dose you would give an adult for depression and the absolute lowest dosage and I should be ‘absolutely fine’.  Famous last words. No. I was not fine.

That feeling of stupid that I explained earlier just got so much worse with the medication.  I couldn’t drive. I couldn’t think. My husband would ask me something super simple like “have you seen my red shirt”?  And I would stand there with my mouth open until I got angry at myself for not even being able to speak. I could have told him I didn’t know. I could have simply said no, but the pressure of being asked a question just made my brain freeze and I couldn’t even speak. It was like the man in my head that does the filing (who goes and gets the right file out when someone asks a question), had gone on a coffee break and never came back.  That, and the pain didn’t actually get any better. At least not enough to make a real difference. So I stopped taking the medication. Without the medication my ability to read was better (on some days), so I started to research. I figured the whole ‘no treatment’ thing had to be crap. There had to be something I could do. Thankfully that determination and researcher mentality paid off big time.

I started with a nutritionist who helped me to figure out what foods were contributing to my pain levels.  Apparently gluten was a major trigger for me and if I had of been trying to figure that out on my own and without an elimination diet I wouldn’t have figured it out because strangely, the reaction I have is quite delayed.  So I might eat a chicken schnitzel for example, and not have any reaction until the next day OR the day after that! In some cases I wouldn’t have any typical stomach reactions either (no bloating or gas or feeling yuck) - the main and sometimes only  reaction I have with gluten tends to be delayed joint pain. I often talk to people about the impact that gluten can have so take note - you might not notice what it is doing to you until days after you’ve eaten it. It makes it so hard to figure that out.

I also started to do a low fodmap diet and I found that there were a lot of other triggers for my pain - garlic, onion, eggplant, tomato… I was beginning to think that I would never eat good food again!  My stomach was thinking my throat had been cut. It was extremely hard to begin with but once I figured out a lot of the food that I could eat and ways to substitute some of my favourite foods that I couldn’t eat, it became easier and thankfully my pain levels begun to really decline which made the whole thing feel worth it at least.  

Around this time I also went to see a renown naturopath, Mim Beim.  We went through my blood tests and discovered that while I wasn’t technically low in vitamin D, my levels were still on the lower side of the spectrum and certainly far from optimal.  I will explain a LOT about this later in the book as vitamin D plays a massive part in my life these days and is a major contributor in keeping my pain levels down. Mim started me on a Vitamin D supplement and also started to look at healing my gut.  High levels of garlic tablets (funnily enough) to kill bacteria in my digestive tract combined with super duper magical probiotics to reintroduce the good bacteria along with steering clear of the things that were contributing to damaging my gut. I also took a supplement called Fibroplex which is a super high dose of magnesium along with a bunch of other vitamins and minerals.  

Mim was a godsend (you can find her website HERE).  Not only did she give me life changing supplements, she also suggested that I see a therapist or psychologist to bring my stress levels down.  Mim also introduced me to a thing called Buteyko Breathing, explaining to me that often fibromyalgia is heavily linked to your sympathetic nervous system (your fight or flight mechanisms), and in a lot of cases it’s almost like your internal alarm system is set too high, making you oversensitive.  Seeing a therapist could hopefully introduce some ways to bring my stress levels down and consequently decrease my pain, but Buteyko Breathing is one of the best ways to engage the opposite system - the parasympathetic nervous system (or rest and digest). I will cover this in later posts but the more you can evoke your parasympathetic nervous system the less you are in fight or flight and the less stress hormones pumping through your body means less pain. Believe me, you want this.

I finally began to see some real results. Hallelujah.  My pain levels started to drop, and the occurrence of really bad days decreased as well.  I began to have hope. When you have fibromyalgia hope can be scary. When you feel good (especially after not feeling good for so long), you can overdo it and then cause the next ‘fibro flare’ from simply overexerting yourself before your body is ready.  I had to learn where the balance point was for me. Holding myself back from staying up too late, doing too much, pushing too hard was a whole new learning curve as well. I’m still learning that. Biting off more than I can chew seems to be inherently embedded in my personality.  Exercise would also come to play a part in my recovery but not before learning about my limitations.

These days I am in a whole new place.  I am back at it with my music finally, having just released my new single and appearing on The Voice Australia (for the record you can find my music at michellecashman.com/music) and I am continuing my journey into the science behind fibromyalgia, currently studying a Bachelor of Health Science majoring in Nutritional Medicine.  The end goal is simply to continue to create content for people with chronic illness who are trying to get their health back and help others on their journey back to health and wellness. A lot of the answers really do lie in what you put into your body. Our bodies are inherently designed to heal themselves and often if they can’t do that it’s because they either are not getting the things that they need to do that (essential nutrients, vitamins, minerals, fats, and energy), OR they are being poisoned by the things we are putting into them (chemicals, pesticides, additives etc).  I will also cover things like that in later posts so if you want to stay in touch and get some of this stuff sent directly to your inbox sign up for my mailing list HERE. You’ll also get my top ten tips for triumph over fibromyalgia there as well.

I hope that my story has done something for you - even if it’s simply to make you feel less alone on your own journey. Please know that even if an ill-informed health practitioner tells you there is nothing you can do that is truly not the case. There are plenty of things that you can do and my aim is to help people to learn just that.

I hope I can help you on your journey too.

xomc