Hello! My name is Erin and I’m from Victoria BC, Canada. Thank you so much for reaching out and letting me know you have a space to share my story. Fibromyalgia has left me feeling very much alone, especially during these scary times
I honestly can’t remember the last time I wasn’t in pain. If I could guess, my struggle with pain was first noticeable around 2013. I would squat down, and my knees felt like they were tearing when I would stand up. This would be a week-long issue, then they would ‘heal’ over time, yet would still be painful when going up stairs or hiking. As time went on, I noticed similar pains in my elbows … then my shoulders, wrists, hips, and ankles. This progressed into every single joint in my body.
I have also struggled with chronic migraines. From the moment I wake up, to the time I fall asleep, my head is aching in many different forms. I constantly have, what I now know is ‘fibro-fog‘, but before my diagnosis I had no explanation for being constantly confused and forgetful. As if my body didn’t have enough going on, I also have bilateral Occipital Neuralgia, endometriosis, provoked vestibulodynia, undiagnosed bladder issues, GERD, and depression.
I felt like my doctors were getting sick of seeing me. I always had a new complaint, always worried I had some rare disease that someone randomly googled and linked my symptoms to.
Since my sibling has rheumatoid arthritis, I asked my GP for a rheumatologist referral to investigate RA. In January 2020, the doctor did a simple physical exam, ruled out RA out via blood work, and diagnosed me with Fibromyalgia. After she explained it to me, it totally made sense. I have all these unexplained pains that seem unrelated but fit together like a puzzle. She said managing it really comes down to diet and exercise and everyone has their own personal concoction for managing symptoms.
I had to give up my love for kickboxing but picked up my new love for yoga. Now that I am diagnosed, I have been taking my time seeing what causes flares. These are stress, intense exercise, and lack of sleep. I have also been finding out what helps. THC/CBD, stretching every day, meditation, and Yoga.
At first, I thought, “I have a diagnosis, things will be so much better from now on!” Right?
I fell much further into my depression thereafter. I was extremely thankful that I didn’t have a degenerative disease or had to take more medications than I already took. However, felt stuck. I knew that it was going to take a while to feel even 1% better. The stress of my neurologist finding a low-grade glioma on my scans didn’t help either. But here I am, 3 months after my diagnosis and slowly figuring things out.
On my bad days, I often find myself saying, “At 24 years old, I shouldn’t be in this much debilitating pain. I should be able to go for a walk without my hips and knees aching to a 9/10 pain level. I should be able to sit at a restaurant without plugging my ears because any loud noises are too much. This isn’t fair!”. But I am also lucky in a lot of ways. THC/CBD helps me more than any medication does. I am able to work, have a great partner, family that supports and understands me, and I do have good days where I can go on epic hikes and see beautiful views in nature.
If you made it this far into my story … Firstly, thank you for reading! Secondly, if you are struggling, know that you are not the only one. Take things day by day, be forgiving of your body, give it rest when it needs it, and you WILL find what works for you. Have an open mind and try new things if you’re able to. Connect with fellow fibro friends, follow support pages on social media. A few of my favorites are @fibro_women and @whyfibromyalgia
I have lost friends, have had to cut my work hours, missed out on many events, and more due to Fibromyalgia. I know that this makes being patient and forgiving exceedingly difficult. But it’s easier if we do it together
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