4 Lessons I have Learnt While Living With Fibromyalgia

Lessons I have LearntAfter more than a decade fighting Fibromyalgia, I couldn’t imagine that the last two years could bring as much learning as it has.

I have stepped up the fight. I am trying Low-Dose Naltrexone and an MSM supplement at the moment. I am using yoga as therapy (targeted poses to keep my body moving). I am devouring research and books and articles about fighting the symptoms and the illness.

A large school of thought in the cause of Fibromyalgia, is that it is caused by underlying issues that need to be resolved. For example thyroid issues, Candida, viral infections, allergies etc.

Lesson one: Don’t be surprised, or discouraged if one avenue of potential healing doesn’t produce results.

Many Fibromyalgia bloggers/writers/doctors blame Candida overload for Fibromyalgia problems. They recommend cutting dairy and sugar and gluten and taking varying supplements. There are entire articles devoted to clearing Candida. Well, I have zero Candida in my system at the moment and my neck has been worse and the fatigue has been higher.

I also have “optimal” results in the usual blood tests (thyroid, iron, antibodies etc). All worth checking and noting that “normal” does not always mean “optimal”.

I don’t give up, I store this in my “don’t worry about it” column and move on.

Lesson two: Fibromyalgia is a massive undertaking of trial and error, which feeds into lesson three: you have to do the work yourself.

I have had precisely one doctor who is willing to listen to me, work with me and trial things with me in the 15 plus years I’ve been dealing with chronic pain. That Dr still doesn’t have a lot of avenues to offer me, but he is willing to let me trial things I research.

I turned up with research papers prepared to be persuasive about a trial of Low -Dose Naltrexone, he agreed immediately.

I have tried a multitude of things to fight Fibromyalgia. Physical therapies like osteopathy, chiropractic, massage and physiotherapy (neck traction and acupuncture needles in trigger points help me). Supplements like MSM, magnesium, multivitamins, iron, olive leaf extract, probiotics and a truckload more I can’t remember! (A helpful note here, using powders dissolved in water seems to absorb better than tablets for me).

Yoga, walking, stretching and swimming are helpful exercises that I enjoy. I have to modify for my neck and knees though. There’s also a clearly defined line that I must keep to, 25 mins of walking is enough, less causes pain in the lower body and more causes pain also!

Avoiding allergenic foods specific to me (bananas and dairy are occasional foods, corn and wheat are once per day foods according to my test). This was the one good thing that came out of hundreds of dollars spent on a naturopath. I trialed gluten-free eating a couple of years ago and found no effects while off or adding them back in. However, I do prefer non-glutenous grains like quinoa and millet as they have extra nutrients too.

There is a mind-body component. Meditation simultaneously helps me rest (I cannot nap) and teaches my central nervous system to calm down. Gratitude practice keeps me looking for the silver lining. Prayer helps sustain my hope (and hope is crucial, without that I’m done for). Colouring is calming and enjoyable. Reading is my favourite hobby and doesn’t require physical activity. You need hobbies and you have a right to enjoy these even with a limited energy envelope.

Almost every time I read a book written by a Fibromyalgia doctor, I have found that I have made my way to an approximation of their protocols myself.

This is all by time consuming, expensive, roller coaster of emotions, trial and error.

Lesson four is that you can do All The Things and still have Fibromyalgia.

Clearly I do a lot to manage my health as best as I can. I have learnt a lot and do a lot, daily. But I still struggle everyday with these symptoms. Mostly my neck and sleep. However, until a doctor helps me with my neck, my quality of life and my sleep will not improve. 

I have come a long way since I was struggling through the day, so sore I wondered how my body was functioning, so exhausted I was nauseas most of the day and only managed by holding on to the glimmer of hope that getting enough work experience would mean I could earn enough per hour to reduce my work hours. But there is more to go until I am healed and I fight on.

New Name, Same Mission

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I have spent a long time thinking over the name of this blog. I don’t claim ownership over the Fibromyalgia. It is not mine. I will never say “my” before Fibromyalgia. However, when you name a blog, people need to know what it is about in order to find it.

So here it is, Melissa vs Fibromyalgia. This encapsulates my mission perfectly. I am fighting Fibromyalgia. Not just for myself, but for my two beautiful, busy boys and the love of my life (Husband).

This site is the compilation of my learning from my own journey and from my research.

Here’s a post that I wrote about: The Whole of Life Change Anniversary

Here’s where I write about What it’s Really Like to Live With Fibromyalgia

Here’s a recent post of what other bloggers and I have found to help with fighting Fibromyalgia: What Works: A Roundup

I am trying to come to terms with the idea that this could be a progressive illness. I cannot give up that nugget of hope that I will find some measure of relief one day.

Welcome to the continuation of my journey.

“Normal,” Relatively Speaking

I thought I was relatively “normal,” physically speaking. Just with some extra pain and fatigue.

But as I have come back into the workforce (physically) after Nu and two years of contracting, I have realised that it’s not so.IMG_20150927_145928

I can’t sit still. My neck begs to be stretched so regularly but I fight it in order not to stand out in meetings. I have to stand for some periods of time. I have to stretch. I get up often.

At a physical job it’s not as easy to take breaks at odd times because you just need to. You can eat at random times, you just look like you are always eating.

You can’t lie down with your heat pack as you need.

On frosty mornings I need gloves to cover sore, cold fingers.

Sometimes, when I am very sore and tired I am Emotional. With a capital E! I have been so tired that I just want to cry and crawl under my desk more than a few mornings recently.

After work I am wiped. I need to sit with my heat pack before I can keep going. A 20 minute walk, dinner and getting Nu to bed is all I am capable of. No ” school night” outings!

Despite all this. And more. I do it. Despite a bad back and neck, intermittently aching knees and fingers, tight, over reactive muscles, extreme exhaustion, fluctuating emotions, high energy needs, dizziness and nausea – I DO IT.

I spend a couple of hours with Nu, an hour travel time, six hours at work and several more hours with Nu each day. Except Wednesday and the weekends when I get to take work out of the picture.

People with fibromyalgia work so much harder than others to live “normally” (and we are expected to live “normally”, forever competing in an endurance race we just can’t win) and I’m so damn proud of myself for what I accomplish.

Whatever your normal looks like right now, you should be proud of what you accomplish. One foot in front of the other.