“You won’t be in pain if you learn to cope with things properly”. No. That’s a lie. That is not how Fibromyalgia works. Let me explain it to you.

Part 1 of this complicated disease

There is so much out there about fibromyalgia. I was first diagnosed 13 years ago and totally resisted the diagnosis. It didn’t help that I immediately developed gruesome side effects from the medication for the fibromyalgia. I told myself that it was a sign. I was not going to continue with this. It was just a psychological thing so, no. I did not have fibromyalgia. The lack of research 13 years ago made it very easy to poo poo the idea, even though I was living with extreme pain. Going for so many procedures and treatments. I was under the care of an Orthopedic Surgeon. Yes, my problems didn’t just start 6 years ago when I was diagnosed with Lupus and Fibromyalgia. 13 years ago I was diagnosed with osteoarthritis. My neck was really bad. I had a nuclear scan which showed alot of weak points. So all the pain was put down to my osteoarthritis until I was diagnosed. A butterfly rash saved my life. You can read the story in one of my previous blogs. Here is a great article to read on the ins and outs of Fibromyalgia!

The link : https://www.healthline.com/health/fibromyalgia

Life with fibromyalgia is a life with pain. There is no cure. All you can do is manage your symptoms. I like to say that I am always in pain it’s just the level that varies! The pain and lack of sleep associated with fibromyalgia can interfere with your ability to function at home or on the job. The frustration of dealing with an often-misunderstood condition also can result in depression and health-related anxiety.

What triggers your Fibromyalgia to act up?

  • You would be suprised! This bizarre disease, do you expect anything less? Let’s look at some of the things that can trigger your Fibro to flare.
  • Overdoing it. We might feel okay and go out and do lots of things or perhaps you decide to give your house a deep clean. BOOM. Pain flare
  • Physical and Emotional Stress. Even though you think you have your stress under control, you feel emotionally okay and in control. BOOM. Pain flare. It’s almost like it’s a physical manifestation of your stress. This one is a biggie for me. I’m working on it. There are times when I let stress get to me and almost immediately my neck muscles tighten up and BOOM. There we go. Pain.
  • Traveling. Weird one right? I am not allowed to travel internationally yet because my health isn’t where it’s meant to be at. So I go home to Cape Town mostly because all hubs and I’s family live in Cape Town. I go visit my little squad and teach them more of my ways. Diva Squad! Much to the chagrin of the parents and granny. It’s nice to get showered with love and be treated like a fragile flower. Funny that, I become fragile. It’s just a 2 hour flight but it takes so much out of me. Inevitably by the time I leave I am in so much pain and completely out of sorts. Go figure. In December we changed our tickets and flew back two days earlier. You might think 2 days? That’s stupid. Not when you have your Lupus and Fibromyalgia flaring. It helped so much. I physically couldn’t anymore.
  •  Reduced sleep or non-restorative sleep. Yes, sleep is extremely important. I don’t reach “level 4” sleep so I don’t reach deep sleep. Sleep is imperative for me as it a restorative part of my life. I have to take a sleeping tablet every night. Quite a strong one along with my antidepressant/anti-anxiety/sleepy and sleepy pain meds. Mess with my sleep and we have a problem. We were going to leave at 4 am when we were going to hit the road for the 4 hour drive to our holiday destination so I actually skipped my meds. I knew taking my meds would mean disrupted sleep and yes, BOOM, pain.
  • Any kind of trauma, including injury, surgery, or getting a tattoo. Even a tattoo. BOOM. Pain. See what I mean about fragile flower!
  • Weather changes: Temperature sensitivity is also common. Yes, change in the weather can cause extreme pain. Went out in Cape Town and it was a nice day, the weather start changing and BOOM. Pain. This is why my baggage is always overweight. I have to pack for all seasons! That’s my story and I’m sticking to it!
  • Sensory overload. This might sound strange but it is so real. This is a massive one for me. I cannot stand too much noise. I cannot stand bright/strobe lights. Certain smells are intolerable. Poor hubs has learned a long time ago that when he sprays his deodorant, he has to do it outside. To give you an example of how extreme it is, I have been a Guns and Roses fan since the age of 13. I even have their albums on my phone now. FINALLY they came to South Africa! 25 years later! Well, I couldn’t go. Over the years I’ve learned to ask myself if it was worth the pain. I did not buy tickets. Just the thought of walking to the stadium, the masses of people, the noise, then the music I love but so loud. I knew it was pointless. I’d probably want to leave 30 minutes into the show. So my dream came true but I couldn’t take part. This is my life now. Here is a little infographic to help you understand.
Please be sensitive. We might seem weird or full of crap but there is a reason behind it.

It is clear that there are a range of psychological, physical, behavioural and environmental factors that may trigger or aggravate flares. .

We looked at what Fibromyalgia is and what triggers it. Tomorrow’s post will be about how it is treated and what it’s like to live with this demon constantly on your back!

If you know someone that needs to understand your disease, please direct them to this post. Let’s spread awareness about Fibromyalgia. The demon on our backs. It’s there but we are not going to give it power! It’s gonna be a pretty, damn bored demon!

ONE LOVE

12 thoughts on ““You won’t be in pain if you learn to cope with things properly”. No. That’s a lie. That is not how Fibromyalgia works. Let me explain it to you.

    1. Ah man! I needed to see this now. I had a rough day. Pain management clinic. More than 10 steroid injections in my neck and shoulders. Then off to ER for serious meds via IV to “break the pain”. Must admit I was probably snoring again because I don’t remember much. I had told hubs to go back to work and I’d call him to collect me. Not my first Rodeo and just pointless him being there. Had ECG and full blood work. Morphine or something stronger I think was given to me. Now I know I’m a snorer… So that happened but let’s just have a moment of silence for the fact that I did NOT drool! No wet pillow! Small wins! I’ll take that!
      I will do a blog about this pain flare that I silently had.
      Thank you so much for believing me. A nomination! If I could jump and scream for joy I totes would!
      Again thank you! It’s just little old me! Thank you for seeing things in me that I don’t see. I’ve lost alot of confidence in myself but this kind of thing… man you have no idea what you just did in someone’s life.
      You’re amazing.
      Thank you!

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  1. This such a good summary of fibro . Do you meditate for the stress,? I find my mind slows now naturally with focus on body breath objectcsustauned and slowing down means less reactions . I started 7 years ago every day after 3 mental breakdiwns and years of chronic neuralgia pain i figured out it was TIME ! The pain may bit go away but the reaction s subtle or gross of thought can. I love the analogy about 2 arrows . The first one pain strikes the target. The next is how we twist it in more unconciously by reacting to it . Not easy to train mind not to i know im gradulally improving ๐Ÿ˜‚๐Ÿ˜‚

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    1. I’m such a work in progress! That’s why I love this kind of feedback! I find guided meditation helps. I have difficulty quietening my mind. I do love Yoga though. That acts as meditation for me because I focus on the yoga flow. I’m far from great at yoga. A work in progress there too ๐Ÿ˜ just got back from pain management and ER re: pain. What a day. I may go silent for a while. This pain even has my spirit messed up!

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  2. Hi Tracy, dont you find that flares are more prevalent if you consume lots of bad carbs…like bread, taties etc?
    I have Ankylosing Spondylitis which is more or less same and if I stay away from carbs …my flares are much better or less shall i say.
    Best Loren

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    1. Hey Loren! I don’t consume carbs. It’s funny because it’s not something I like anyway. Occasionally yes (CAKE) when I visit home but in general I have a protein and salad. I’ll make carbs for hubs but not for myself. Thank you for asking/caring!

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