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What My Fibromyalgia Flare-Ups Feel Like

Anything can cause a relapse. It could be a physical injury or stress from a break-up. Sometimes you’re doing everything the same, eating well, exercising enough, trying to stay “healthy” and you still get sick. For me personally, an emotional roller coaster seemed to kickstart my fibromyalgia and caused me to drop out of school at the beginning of grade 11. Since then there has mostly been no apparent reason for my relapses or flare-ups.

It usually starts with flu-like symptoms and a couple weeks of no voice and limited movement. Sometimes I lose my appetite, sometimes I will eat everything in the house and order take out. Then there is months of relearning how to walk because my legs don’t get it, shaking because my muscles are a lot less muscled, having almost no balance, depression, everything aching inside and out, not being able to be touched because it hurts, itching beneath the skin, and struggling to have conversations or read because my brain has switched off. It’s hard.

Generally, every time you get sick again the doctors, osteopaths, neurologists, dietician and anyone else who sees you will want to do more tests. And unfortunately for a fibromyalgia patient and most other people with chorionic illnesses, the tests come back with normal results. There’s nothing out of the ordinary or anything that could point to what might be happening with your body. The first year I was sick my doctor at the time had no idea what was going on with me and just kept sending me for a different set of tests each week. Nothing came of it but a lollipop and Disney Band-aid. It does help to know that someone believes that you’re not just making it up, though.

It takes a while for family and friends to adjust, too. Often parents have a more old-school way of seeing invisible illnesses and they need proof. It took my dad getting locked in the doctor’s office with me (the door handle broke!) before he could accept what was happening. It’s not necessarily that they don’t believe you, but it might just be that they need more information. Give it to them! More often than not, they just want to help you feel better and they need your assistance to get there.

Ten years later I have a bit of a routine. I relapse every 18 months or so. I am not very useful for a couple months (this is my “just surviving” stage) then it’s a few months of trying to get back into life, finding a part time job, contacting friends again (“getting there” stage). Finally I’ll get about eight  to 12 months of leading a “normal” life. I’m able to work, socialize, volunteer, play with my nieces and nephews and be involved instead of watching life from the sidelines (this stage is “productively participating”) and this is what makes the rest of the illness worth fighting through.

I’m very lucky to have a supportive family who understand my limits and help me out as much as possible. It will get bad again but in the meantime there is so much to do!

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