Welcome to my Fibromyalgia Lifeline blog! I am so glad you are here. I thought I would start with telling you about my experience in getting a diagnosis. I was pretty lucky. It took less than six months to get a diagnosis. I have read it takes the average FMS sufferer up to seven years. I can’t imagine!
On the “About” page there is a little bit about me. Please, introduce yourself in the comments below. If you would, I would greatly appreciate you telling me what you want to read about, and what troubles you in having FMS or another chronic pain issue. Whether you have FMS or some other type of chronic pain, it is likely invisible to others, so it has many of the same characteristics and effects on your life. This blog is for you, too.
Here is the story of my diagnosis.
One day in the latter part of 2003, I woke up in horrifying pain that completely consumed my body and mind. I had no clue what to think! I felt that, at just 40 years old, my life was over. Part of me wished, in that moment, that it was. Similar things had happened to me since my 20s, but it was never as severe and debilitating. I was so fatigued that I couldn’t really move even if I weren’t in so much pain, and I had slept so long I missed a day. This was definitely different, and in the past ten and a half years it hasn’t gone away. But, I have learned what my body and mind needs to keep the pain and fatigue from overwhelming me like it did on that day in 2003.
From that day in 2003 to about April 2004, was a series of tests, along with extreme fear, and a cycle of uncertainty and elation. I had no idea what was going on with my body, I knew I wasn’t imagining it, and I knew the purpose of the blood tests. The blood tests were going to tell my doctor if I was going to die or not. All those test results were normal! Okay. So. I wasn’t going to die any time soon from any type of cancer, virus, or any of a host of other diseases. But I still didn’t know what the hell was wrong with me! I also wondered how many times I could get poked with a needle in a few weeks time and not have some kind of ill effect. Apparently, more than I had been poked. One benefit of $15,000 worth of tests, without the benefit of insurance, is that I don’t have to lie down to have blood drawn anymore.
All the while I had this terrible pain to contend with. My primary care doctor was on sabbatical, so I had to see someone else, a doctor who didn’t know me. She would not give me any pain medication because she didn’t know what was wrong with me and she was concerned I would become addicted. Neither of those concerned me! I was taking leftover narcotics from dentists for nearly a month and, while they weren’t helping all that much, they didn’t seem to be making anything worse. The narcotics soon ran out. Then I started drinking. That only helped for the time I was completely inebriated. I found that the next three days weren’t really worth it. The hangovers made me even more miserable, since hangovers are worse when you have FMS. Plus, I once got so drunk I did a face plant in the dirt and chipped a tooth. Grrrrr. I was at a complete loss. I was just so desperate for relief I didn’t know what to do.
Eventually, I was referred to a rheumatologist who diagnosed me with Fibromyalgia. Hot damn! I knew what was wrong! He helped me, through trial and error find the right traditional medication. I helped myself, through trial and error find the right diet, exercise, and alternative methods to help me the rest of the way. In the future, I will talk about the things I do, the things I’ve tried, and the things I believe to be helpful to all of us who suffer from FMS and other chronic pain syndromes (as long as they are okay with your doctor!!!).
It took several months to get the medical help I needed, and to get well enough to learn what I could do to heal my now completely screwed up body and life. Ten and a half years later I am still learning, but am happy that I feel well enough to live a happy life on my own terms.
Yes, I made some mistakes along the way to my diagnosis. Probably the worst was drinking like a fish because the pain and fear were unbearable. I should have gone to a different doctor to see if I could get some type of pain control. (The rheumatologist told me there was no reason I should have had to suffer like that without medical help.) I had, also, never learned to be an advocate for myself with regard to my healthcare because I never had to before, and I didn’t feel well enough to stick up for myself and ask the right questions. Between not being well and being so independent, I didn’t know how to ask for help from a friend or family member. I had yet to learn that being independent means knowing when to ask for help.
I now have an amazing support system, with my husband, friends, family members, and a great healthcare team. These are the things I want for you, and I will do what I can to help you get them. Please leave comments letting me know how I can help you. I look forward to getting to know you!
Sending you wishes for a bright future!