By: Vikki Patis
When I was diagnosed with fibromyalgia, I was equal parts relieved and upset. At the time, the prognosis wasn’t great. In the weeks leading up to my appointment, I’d been speaking to a colleague who has rheumatoid arthritis, and I had worked myself into a funk. Why me? I thought, as I dragged myself through each day. The early months of 2015 seemed to take decades to go by. Time stood still for me, as each day was harder than the last, each day I was more tired, in more pain. Each day I was that bit closer to giving up.
Finally, my appointment came. Explaining my symptoms was hard – I’d read advice online to make notes prior to the appointment, in case I forgot anything, and I went armed with lists of how I was affected.
Fibromyalgia is, of course, categorized by chronic pain and fatigue, but there are several lesser-known symptoms that can also affect someone with fibro. Did you know that fibromyalgia can make menstrual pain feel worse? I’d always had horrible periods, and had been on the contraceptive pill since I was 12 years old, but I wasn’t diagnosed with fibromyalgia until I was 24. This pill, a progesterone-only pill (POP), stops my periods completely, which then leads to perimenopausal symptoms, including hot flushes, trouble with memory and loss of sex drive. Fibromyalgia can mirror some of these symptoms, so you can feel like you’re getting them twice as bad. Great, huh?
Irritable bowel syndrome (IBS) is another symptom of fibromyalgia. What’s more, around 32 percent of people who have IBS also have painful bladder syndrome (PBS). Anyone else with fibromyalgia constantly need to pee? Yup, me too. And does anyone else constantly have a dry mouth? Sjögren’s syndrome is an autoimmune disorder that mainly affects the saliva and lacrimal glands (otherwise known as tear ducts), leaving your eyes and mouth dry. Sjögren’s can show up as a secondary autoimmune disorder, which is when you already have an autoimmune disease, such as fibromyalgia.
Are you starting to see a pattern? The thing is, although there is a set criteria in order to diagnose fibromyalgia, it’s actually quite a unique disease. It can affect me in one way, and you in another. We might overlap when it comes to the “traditional” symptoms, but in many ways, the range of symptoms of fibromyalgia can be unique to each individual. My GP once said that we may as well call it “Vikki’s disorder,” because my symptoms won’t necessarily be the same as the next person’s. I’m not sure “Vikki’s disorder” has the right ring to it, but I suppose it’s less of a mouthful than fibromyalgia.