Once you have learned you have been diagnosed with fibromyalgia, you find relief for a split second. You have a diagnosis. Then complete fear as you realize, you have no idea what this diagnosis means? Fibromyalgia Syndrome, a chronic disease. This is where we all separate on our individual paths on our journeys through the ups and downs of dealing with jobs, family, partners, kids, friends… all while trying to determine how to fight this disease.
I have a degree in Criminal Justice and Social work. I had witnessed adversity my entire working career. Well, my whole life was a study in adversity as I was born with a birth trauma. Once I had a diagnosis for the symptoms I was experiencing, I was thrilled. I thought now that I know what this is I can fight it! Chronic? No cure? That part I refused to believe!
I will tell you straight out the first few years are the most excruciating and painful years you will face. You fight through the pain. You fight against medication. You fight to keep your job. You fight to keep your home in order. You fight to make others understand fibromyalgia. You are already exhausted and in pain because of fibromyalgia but you fight! Chronic… no cure… remember this?
The best thing you can do when you find out you have fibromyalgia is to arm yourself with necessary skills! Read everything you can! Find a doctor who believes you and make it to every appointment they set up for you. Take medication as prescribed to help you feel as normal as possible (you will still have pain). Find a mental health therapist that deals with chronic illnesses. Keep track of all your medications, practitioners you see, and medical records from day one of diagnosis! You will need this information in the future.
Let’s break this down a bit, the first thing I did was find a book written by a doctor who has fibromyalgia, and I bought that book. This was almost 20 years ago, and I have not found a better book! It is entirely my survival manual. It covers everything from diagnosis, mind, and bodywork, co-existing conditions and what to do if you are no longer able to work. It is my fibromyalgia bible. Here it is…
I carry two lists with me to every doctor appointment. A list of my medications (current and discontinued) and a list of the doctors I have seen with the procedures I have gone through. Always. This is especially helpful when you need to change medications because they have stopped working or they had no effect. You do not want to go back on a medication that you did not tolerate very well. Be active in your medical appointments, know what medications you are taking and why. Really try to understand what a particular medication is supposed to do.
There is no one right way to be treated for fibromyalgia. Every person reacts differently to every medication, every treatment, even different kinds of exercise and therapy. So, just because it works for one does not mean it will work for another.
One other book to get to help you through your journey is an interactive journal I co-wrote! I only wish I would have had access to a book like this when I was diagnosed. However, newly diagnosed or years into your disease, you will find this book helpful. This journal will answer many of the questions you have while encouraging you to seek out the options that work for you! You will learn to live your best life with fibromyalgia.
You will learn to manage this disease!