I don’t remember the day that I was diagnosed with fibromyalgia, but I was about twenty-six years old. It took one concerned doctor and a series of tests to rule out other conditions. He finally diagnosed me, instead of telling me it was all in my head.
I had been seeing doctors since I was thirteen years old. I actually remember one doctor telling my mother, I seemed like a very tense child, and that there wasn’t anything wrong with me. He couldn’t diagnose me with anything, because my pain wasn’t obvious.
Then again, this was the Caribbean in the late 1990s. Knowledge of fibromyalgia was probably non existent to the medical community in the Caribbean at that time. A child talking about tingling sensations to her hands and some body aches didn’t trigger a medical need.
As time went on I kept listening to my body and I knew something was wrong. It took me over thirteen years to finally get diagnosed and by that point, the pain was beginning to take a toll on me physically and mentally. Thanks to a very supportive doctor, I was able to feel like I would be fine.
I still deal with hand spasms, Raynaud’s Disease, widespread pain, fatigue, occasional migraines, lower back pain, temporomandibular disorder (TMD), sleep issues and cognitive difficulties commonly referred to as “fibro fog.” Fibromyalgia goes beyond chronic fatigue and widespread pain; it affects your thinking ability.
So many times during a fibromyalgia flare or just an episode of fibro fog, I had to reread one paragraph of an assignment for about 15 minutes before I could grasp the meaning of anything it said. As someone who excels academically, feeling this happening to my mind was extremely difficult and made me anxious.
So many times I found myself asking My doctor if I may be at risk for Alzheimer’s, but he assured me that the data shows no correlation—for now. This illness is so debilitating at times, that during really severe flare ups, I told my husband (then boyfriend), that if he wanted to walk away, he should go away now. He decided not to.
Before I became a mother, I questioned whether I wanted to have children. I came to the conclusion that there is no way I am going through life without having children. I always knew I wanted to be a mother, no matter how daunting it could be with fibromyalgia.
I had my first daughter at thirty one and the next about two years later. It was the best decision I made. The physical demands of motherhood, has been very taxing on my body, but I have no regrets. With that said, there are a few ways that I have been doing to keep my flares to a minimum.
1. Exercise A body in motion stays in motion. For a fibromyalgia sufferer it is a little more complex than that. Fibromyalgia can manifest itself in so many ways and it has the potential to create a vicious cycle. When you’re in pain, it’s hard to exercise and the lack of exercise can create more pain.
I also recently got diagnosed with idiopathic angioedema induced primarily by exercise among other things. With that said, I go at my own pace and I don’t engage in any strenuous exercises. I stay active with my girls and I try to stretch daily.
2. Eat well It goes without saying that a balanced diet is important for everyone, especially those of us who battle invisible illnesses. The one principle I follow when it comes to food is portion control. I am also aware of what foods make me feel worse, so I restrict that. Many people have specific diets that they swear by. If you choose to do so, be sure that your body is well nourished and you do not become deficient in important nutrients.
3. Yoga, massages and/or acupuncture I did yoga for quite some time, and I have to say it was very beneficial to my wellness. I also get massages—though not as often as I would like—and have also done acupuncture which truly worked wonders with blood flow in my legs. Finding whether all or one of these works for you is very important. Some people can’t do massages, but can handle acupuncture. You know your body.
4. Consult with your doctor I have been able to control my fibromyalgia really well without a heavy reliance on medication. I’m at one flare about every three months. Unfortunately, there are so many of us who are not so lucky. Consult with your doctor and devise a plan that leaves you empowered.
5. Create a network of support No man is an island, especially when you suffer from fibromyalgia. There will be times that you need help. Lots of it. This morning, I woke up in widespread pain and my husband has the kids. I also know I can vent to him, my mom and my best friend about a rough day. Having people who are sympathetic and sometimes let you vent is so healthy.
To anyone who suffers from fibromyalgia, I would love to hear from you. Gentle hugs and have a restful day.
(Photos from Shutterstock)