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Living With Fibromyalgia – Understanding What It Is and How to Move Forward

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Fibromyalgia (FM) is a musculoskeletal disorder that is currently getting a lot of social media attention with Lady Gaga speaking up about her diagnosis, but what is it and how does it affect us as parents?

Diagnosis for Fibromyalgia happens after all other similar diseases have been ruled out by testing and has become well recognized as a life impacting illness that affects a person’s mind, nervous system, muscular functions, and energy levels.

Common symptoms for FM are:

  • 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 three 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 were no results. My backache was so bad that I needed to support myself against a wall to stand up at times. I complained for five years that something was wrong. But there were 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 during the day – not something a mother of three young kids can allow to happen. But all my levels were fine. I did these tests annually for three years.

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. I couldn’t hold a broom with one hand … but the exams showed nothing.

I was having headaches constantly, 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.

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 three-year-old at all some days without fear of dropping him because my arms felt so weak.

I found myself some days needing to stop mid-way climbing the stairs from our basement to our top floor because my legs were throbbing as if I’ve completed a marathon run the day before. But it was just doing laundry, I would think to myself.

I was getting snappy at my kids. I was getting snappy with my husband. I felt terrible most of the day and I started feeling like I was slipping away from myself and my family. But as much as I was trying to find answers, it just didn’t seem to lead anywhere.

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’s 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.

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

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.

They can’t help it. They can’t stop it. They can’t cure it. They can’t just get over it.

There is no known cause of FM, but it is believed for about one-third of persons the onset may be attributed to a triggering event, such as a severe illness, a traumatic incident, or a stressful, emotional experience.

So what we can do if we have FM?

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 like obesity and suicide.

If you were a runner who now gets tired and achy after a mile, then run that mile and walk the other four – or however far you like to go. And if you have days where even just running one mile seems too much – then simply walk for 30 minutes.

We can rest when we need it. But we can’t give in to it. We can’t let it beat us or take our passions from us.

We can adjust our lives.

We can still do this. But you need to be determined to kick butt every single day. You need to be determined to prove the statistics wrong. You need to be determined to remain as much YOU as possible.

More resources on understanding Fibromyalgia that I found helpful:

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