Have you been recently diagnosed with fibromyalgia and are wondering what’s next? May 12th is Fibromyalgia Awareness Day and a collection of bloggers are sharing their top tips for the newly diagnosed.
In August of 2000, I started feeling achy all over, was exhausted, and I couldn’t even drag myself off of the couch to change my daughter’s diaper. At first I thought I had some flu bug, but a week later my exhaustion, pain and fatigue hadn’t gone away.
I finally went to my family doctor who couldn’t find anything wrong, but ran a series of blood tests. Everything kept coming back normal, except the ANA, or Antinuclear Antibody, test. High ANA counts are typically markers for an auto-immune disorder, which fibromyalgia is NOT considered. My ANA count was high enough for concern, along with my symptoms, that my family doctor referred me to a rheumatologist, who gave me the official diagnosis. Fibromyalgia.
Before that blood test came back, however, my mother said it sounded like fibromyalgia. She had read about it because she had similar symptoms (although she was never officially diagnosed). So I started reading whatever I could. Bear in mind in 2000 we didn’t have Facebook and internet access was still on dial-up modems, so there wasn’t a lot of content back then. I relied on library books for reference. I read everything I could, but there wasn’t much.
MY TOP TIPS
These days there are so many resources available for you to get information you need to learn how to cope with your condition. Here are My TOP TIPS if you’ve just been diagnosed:
- Plug into an online community – There are plenty of Facebook groups where you can learn how others cope, ask questions, etc. There are also many great bloggers who blog regularly on the topic of fibromyalgia and chronic pain. You are not alone in your journey. Check out www.fibrobloggerdirectory.com
- Educate yourself and your tribe – Be it your family, friends, boss, co-workers, help those people around you understand your condition so they know how they can help you on bad days. And educate yourself to know what triggers a flare and the best way to cope with it. I kept a food diary and a health diary for a long time to figure out my triggers. Knowing what to avoid can be a big help to keeping the flares and pain to a minimum.
- Don’t be afraid to ask for help – We cannot do everything ourselves and expect to be OK. I found early on in my diagnosis that with a job and two little kids, cleaning house would put me in bed for a day or two to recover. I was fortunate to hire a couple to clean my house – and 20-something years later they are still with us. But if you can’t afford a cleaning service, here are some ideas: make chores for your family to do to help you; pace yourself and do a little bit each day, rather than everything in one day.
HOW I COPE
I have learned over the years major triggers for me – stress, pushing my body too hard, lack of sleep, or eating the wrong foods. It will take time for you to figure out your triggers, but when you do, that knowledge can be tremendously helpful.
I try to follow healthy habits to keep my flares at bay. Read more about my strategies in some of these past posts:
You can help spread awareness about this condition by sharing tips and articles, talking to others, and continuing to advocate for better research and treatments. This is how we can all shine a light on fibro.