Fibromyalgia – What is it? My Story Of Diagnosis

Fibromyalgia is a musculoskeletal disorder that is currently considered one of the most mis-diagnosed diseases in north america. On average it is believed people will be looking for answers and fight improper diagnoses for five years, and for some as long as a decade!

Up till a few years ago it was still considered by many a ‘head case’ illness, similar to lyme disease as there wasn’t an established cause for it.It has since become well-recognized as a life impacting illness that affects a person’s mind, nervous system, energy levels and muscular functions.

Diagnosis for Fibromyalgia typically only happens after all other similar diseases have been ruled out by testing and through an exam to determine how many pain and pressure-sensitive points a patient is experiencing across their body, as well as a discussion on general symptoms.As a patient, we often head to the doctors expected to talk about “1” problem… so we just pick one to focus on. But when it comes to Fibromyalgia the symptoms can often seem unrelated to one another and it really comes down to having a large number of markers. Which means for proper diagnosis you need to speak do your doctor about all of the problems you are having, not just “1”.

Fibromyalgia is estimated to affect about 2% of Canadians, with about 80% of those diagnosed being women between the ages of 20-50. And while treatment is available, like antidepressants, there is no cure and no complete relief of the symptoms. Pain becomes your normal. Weakness becomes normal. Tiredness is normal. Every day.

Take a look at this list, these are the common symptoms for Fibromyalgia:

  • widespread body-wide pain
  • jaw pain and stiffness
  • pain and tiredness in the face muscles and adjacent fibrous tissues
  • stiff joints and muscles, especially after any kind of workout.
  • headaches (more than 3 a week)
  • irregular sleep patterns, or even what seems like insomnia.
  • irritable bowel syndrome (IBS) and uncomfortable gas and bloating that lasts for weeks
  • painful menstrual periods (similar to the pain experienced in endometriosis)
  • tingling and numbness in the hands and feet (often times the first symptom of Fibro)
  • restless leg syndrome (RLS)
  • sensitivity to cold or heat (and temperatures can increase your other symptoms as well)
  • difficulties with memory and concentration known as “fibro-fog”  that can affect your ability to speak or form sentences
  • exhaustion – or severe levels of fatigue
  • problems with vision
  • nausea
  • pelvic and urinary problems
  • weight gain
  • dizziness
  • cold or flu-like symptoms
  • skin problems
  • chest symptoms
  • depression and anxiety
  • breathing problems

This does not mean everyone with Fibromyalgia will walk around looking like they are struggling – quite the opposite. We look fine.

And maybe that’s part of the problem and why misdiagnosis happens so often.

As a patient I had gone to see a doctor about backache various times – and got sent to physiotherapy and given pain medications, but there was no results. My backache was so bad that I needed to support myself against a wall to stand up and I couldn’t lie on my stomach at all – for 5 years I have not been able to sleep in any other position than flat on my back. And even that kept me up at night from pain. But there was no answers.

I had also gone at a different time to have my hormone levels checked and to find ways to boost my energy levels as I was passing out constantly during the day – but all my levels were fine. I did these tests annually for 3 years. But there was no answers.

I had gone for x-rays on other occasions to check for arthritis in my feet and hands as the pain became unbearably bad, to the point where I wouldn’t be able to walk comfortably or do simple tasks like opening the peanut butter jar. My fingers just lost all strength. I couldn’t hold a broom with one hand... but the exams showed nothing.

I started to have extreme cramps during my menstrual periods. The pain was so bad that I would feel nauseous and dizzy. I would be extremely bloated for weeks at a time where I would need to wear at least one size up in clothing – and even those would feel tight. But there was no apparent reason.

I was having headaches constantly, to the point where I was reaching for ibuprofen daily. I kept blinds shut and sunglasses on at all times to see if that would help, but it didn’t. I started to call them my exhaustion headaches as they typically hit me mid-day when I had to force myself to stay awake when all my body wanted to do was fall asleep.

So here I am, for years going in-and-out of the doctor’s office with “1” symptom at a time. Never really finding answers. After years, you stop complaining. Part of you start to think maybe you’re just being silly, a wuss.

I struggled with whether or not to write this article, I didn’t want to seem like I’m looking for sympathy or attention. But I was reminded that oftentimes this struggle in self advocating is one that too many people lose. 

You give up on yourself. You start believing others who tell you there is nothing wrong.

So I am writing this article for those of you who might be feeling lost right now.

There are answers and there is help.You just need to know your own body and you need to believe in yourself enough to keep advocating for it. But doctors can only help you when they have all the information. Don’t make the mistake of only giving them the “1” problem you’ve been taught to present. Talk to your doctors about your life.  About how your whole body’s system is changing inexplicably.

Talk to them about how YOU are changing.

I believe my diagnosis finally hit the right mark because I did all of these things. I finally got to the point of just letting go with my doctor. No holding back.

I told the doctor that I felt like I was losing myself. (I have another article here on that)

While that may not be the feeling everyone experiences, for me the diagnosis of a musculoskeletal disorder meant exactly that. My whole life I had been a very physical person. I’ve played sports. I was an avid walker/hiker/swimmer – you name it. As a mother, those are things I did all day with my kids. If I had to carry a toddler on a 2-hour hike, it was no problem. I’d do it twice a day. When I hit the swimming pool for a workout I’d jump in and do 5 km easily.

But with Fibromyalgia the muscular impacts are severe and the stiffness and pain is worsened with every bit of physical activity. It’s a double-edge sword of this disease – movement is your best medicine, but it is also the thing that makes you feel your worst (?)

All of a sudden, a 100 meter swim felt like 800 m. By the time my body took a turn on the fourth length of a 100m my neck, shoulders and arms would be seized up to the point where it felt like every muscle was being ripped apart.

I went from being the mom always running around the basketball court with a kid held up above my shoulders so he could ‘make net’, to not being able to pick up my 3-year-old at all without fear of dropping him because my arms felt so weak.

I find myself some days needing to stop mid-way climbing the stairs from our basement to our top floor because my legs are throbbing as if I’ve completed a marathon run the day before.

My life is changing. Who I am and will be is changing. And these same things may very well be happening to those you know with this disease – or to you if you have Fibromyalgia.

What I want to help raise awareness of for those friends and families of us fibro warriors, is they can’t help it. They can’t stop it. They can’t cure it. They can’t just get over it. And it is certainly not a head-case disease that anyone chooses to have for attention.

And for us with Fibromyalgia, we can educate ourselves on what works best for us. From dietary changes to the various treatment possibilities. Self education and experimentation is a must. We can work on keeping our minds as positive as possible and focus on things that makes us happy – because any way you can boost serotonin in your brain is a good thing for the rest of your pain. We can also talk to our support system and let them know when we may need a break. We can stay active – in a way that helps our bodies, not worsens it – and not give in to some of the statistics that surround this disease. We can rest when we need it. We can adjust our lives. 

Learn what Fibromyalgia (FMS) is and how diagnosis is made.

More resources on understanding Fibromyalgia that I found helpful:

Keep the discussion going! What do you have to say?