3 Things I Wish I Knew When I Was First Diagnosed with Fibromyalgia

Shock. Uncertainty. Fear. My first reactions to my diagnosis. But I was missing some key information. MY FIBRO IS DIFFERENT THAN YOURS. The first thing after diagnosis was to read as many things as I could about Fibromyalgia. I also talked to everyone about it. People I knew who had it for many years, those […]

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Shock. Uncertainty. Fear. My first reactions to my diagnosis. But I was missing some key information.

  1. MY FIBRO IS DIFFERENT THAN YOURS.

The first thing after diagnosis was to read as many things as I could about Fibromyalgia. I also talked to everyone about it. People I knew who had it for many years, those who knew people, those recently diagnosed, family doctor, acupuncturist, massage therapist, naturopath, osteopath, others in the fitness industry…you name it, I talked to them. There are so many commonalities among people who have Fibro, but the one thing that was glossed over was the fact that everyone has a different experience with their Fibromyalgia. Yes, we may have similar triggers and even symptoms, but the way they manifest, feel or dissipate is different for everyone. Response to medication can vary as does the response to exercise intensity and various therapies. So while you and I may both have Fibromyalgia, our experience of this condition can be very different. If you’re lucky, there may be some similarities to provide guidance, but most likely you’ll have to figure it out on your own. 

2. THE EXHAUSTION IS OVERWHELMING.

Yes, there is pain in my trigger points which can flare up for various reasons, but the extreme exhaustion I have felt since my diagnosis is unbelievable and unexplainable. Tiredness is mentioned in all the resources as one of the leading symptoms, but I truly believe that its magnitude is glossed over. To make it even worse, no one understands how truly exhausted you are. They say they do, but they can’t, not unless they have Fibro. Trying to explain your level of exhaustion is futile though you never stop explaining. Everything I do makes me tired no matter how much I sleep or rest. I’m still tired. It’s like Fibromyalgia is using sleep deprivation as a form of torture! If you’ve got a baby who doesn’t sleep well or kids who wake you up, it is utterly exhausting….now imagine that’s your life, all day, every day, forever….that’s the exhaustion you have with Fibromyalgia and it never goes away.

3. I HAD TO GRIEVE MY FORMER SELF.

The literature mentions that you aren’t the same person you used to be. My friends who have Fibromyalgia also mentioned that they had to change a lot of things in their life, but no one mentioned the grieving process that I would have to go through. Now, maybe some people haven’t or don’t want to go through this process…..because, honestly, it’s truly horrible and emotionally taxing. Not only do you have to grieve the person you used to be, but you also have to grieve the loss of your future dreams. The things that you had hoped to achieve may not be possible anymore. The image you have of your body and its abilities also needs to change. In one moment, you are strong and capable and the next you’re unable to take a shower without having to sit down and rest before you get dressed. You can’t do multiple things in a day because you’re just so exhausted. Grieving who you were is a huge step that I believe must be completed before you can start to redesign your life around living with Fibromyalgia. This is the chance to rewrite your story your way. 

My Fibromyalgia journey has been challenging, but it’s also given me some blessings. 

  1. I’ve been able to redefine what movement means to me and discover my love of QiGong, yoga, walking and moving in ways that makes my body feel energized and healthy.
  2. I’ve learned to say no and not feel guilty about it. There are so many times that I pushed through when I shouldn’t have. I now realize saying no is sometimes the best option for myself and everyone around me. 
  3. Changing my mindset and nutrition has made a vast impact on my pain and Fibro flare ups. I am able to predict when the flare ups will come and in many instances avoid them completely because my nutrition is healing my body instead of hurting it. 

Here’s a video with a some additional tips on how to deal with these 3 things: Video Link

My final thought for you if you’re dealing with chronic pain: It doesn’t have to be that way. You don’t have to be in a chronic state of inflammation and cycle of pain. There is a way out. I know this because I’ve made it to the other side and so can you. Get your free “What’s Holding You Back From Living Pain Free?” quiz today. Learn how to conquer your Fibro instead of letting it control your life! 

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