themighty logo

The First Things I'd Do Upon Getting a Fibromyalgia Diagnosis If I Had a Do-Over


Getting diagnosed with fibromyalgia and living with the effects of chronic pain, fatigue and insomnia is difficult. This is why I decided to write my journey and everything I do to cope with the symptoms of fibromyalgia and myofascial pain syndrome in my book “Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Fatigue and Insomnia,” out January 29th, 2018.

Melissa vs Fibromyalgia book cover

Here’s an excerpt from my book about what I’d do upon diagnosis, if I had a do-over:

When you are first diagnosed with a chronic illness such as fibromyalgia or chronic fatigue syndrome, your brain has rather a lot to process. If you’re buried too deep in pain and fatigue, the enormity of the challenge may not hit you immediately.

You, like me, may have been diagnosed after a long battle in which you have learned to push through and assimilate the challenges into your life. Potentially making yourself even worse. Or you may have been struck down, as if by a lightning bolt of pain and fatigue.

Here are a few key things we need to do when we’re diagnosed, or ready to process:

Research

You are your advocate, medical coordinator, cheerleader and guru. You need to guide your doctor. You need to track your progress. Get a book, or open a digital file and write it up. Keep articles you come across. Because when you’re ready you need to experiment. Your doctor can only take you so far, if they want to come on this journey with you at all.

Experiment

There are many types of treatments: medicines, supplements, alternative options, physical therapies and diets. We all have different chemical make-ups, different genetics and different triggers. This means we need to find our lifestyle that gets us as pain-free and awake as possible. The complexity of this is huge, especially when you take in the fact that synergies, mixtures of multiple things, may be the solution. Your body may need a mixture of medicines, supplements, physical work and mental work.

Hit Your Lifestyle

You can’t keep going in the same way. That way didn’t work. Try to journal it out or talk it out, or whatever you do to think things through. You need to rebuild your lifestyle. Find what works for you, what your passions are (the non-negotiables of your life) and go from there. I spent a long time dreaming of working slightly less hours so I could rest more and try to recover – and reducing my work hours was only the beginning of my journey to better wellness.

Find Your People

If there’s no one in real life, find a virtual community. You need to be exposed to new ideas and you need to be able to ask questions. There are many people struggling along with chronic illnesses sharing their journey. Just try to keep it positive – we’re all facing a tremendous burden and sometimes that makes it hard to keep our emotions on an even keel. Having a search through the articles written by other people with chronic illness on places like The Mighty is a good start.

We want to hear your story. Become a Mighty contributor here.

Photo via AntonioGuillem on Getty Images