When I was a teenager I was diagnosed with scoliosis like a lot of teens. I went to a chiropractor. I got physical therapy. I still ached. I remember complaning to my mom about my legs aching and my lower back. I kept having back problems and pains even after physical therapy. At first, she thought maybe I was still growing, but I complained enough that she took me to a rheumatologist. Being young I thought a rheumatologist was someone who treated “old people” for arthritis.
After an examination and listening to my list of complaints of pain in various places I was diagnosed with fibromyalgia. My mom asked what his recommendations were and he said “exercise”. Yeah, right. Besides being three sizes bigger than I am now, exercise with how I felt was the last thing I wanted to do. Even though my mom had been diagnosed with fibromyalgia years earlier, I kind of shrugged the diagnosis off. I really didn’t know what I was in for.
When I was 18 and had to become more responsable by getting a job and going to college I noticed I started to forget things. I had to start writing things down and putting the sticky notes on my purse or car keys so I would remember important things I needed to do. I should have invested stock in sticky notes for as many as I have wrote. I remember my grandmother saying “You are too young to forget things.” I didn’t understand myself. I thought there was something seriously wrong with my head. I had started writing things backwards, mostly numbers, even though I swore I saw it one way I wrote it another. My attention span and ability to concentrate was becoming impaired. I would have a hard time finding words. My friend’s didn’t understand my complaints of pain. They didn’t understand the nonsense coming from my mouth and quite frankly neither did I. I felt alone in dealing with such a life changing disease and I felt misunderstood. I eventually just tried to deal with it and not complain.
In my 20’s I decided to see what this fibromyalgia was about. I began searching on the internet and realized many other sufferers felt grossly misunderstood. I joined a online Christian fibromyalgia support group, a small group of women whom I am still friends with today. I found comfort in knowing I was not alone at all in this journey, just a bit younger than most people when they are diagnosed.
I have had fibromyalgia or “fibro” as I like to call it now for 16 years. It is not getting any easier as I get older. Most everything that I feel weird happen to my body I attribute to and blame on it. Some symptoms that I have encountered besides lumps in my lower back, writing and talking backwards, forgetfulness, attention problems, pain all over which can become worse with stress, weather, etc, chest flutters, stiffness, depression, fatigue, IBS, numbness and tingling in my extremities, sensitivites to my skin being touched, sensitivites to scents, dizziness, and TMJ just to name a few. (Yeah, a few).
I am lucky to have found support in my mom, friends and online communities. If you are dealing with this disease and feel alone, please remember there is support out there and you are definitely not alone.