A Message From A Fibromyalgia Patient

I want to thank Maja Iten for her insightful e-book and newsletters on fibromyalgia. I have been in a rut for quite awhile and her works have given me new hope.

In order to understand this little article about fibromyalgia and me you have to understand that I am an organizer. I don’t see myself that way; but when I look back at things I have accomplished, I see the organization that grew out of having too much data and not being able to process it without organizing it.

When I brought my daughter home to homeschool her in the mid 1990s, I didn’t have a clue about homeschooling. I quickly found myself on the internet emailing a group of homeschoolers with whom I shared religious beliefs. We didn’t just discuss homeschooling, we emailed about other things as well. That’s how I learned about fibromyalgia. It was quite an “ah-ha” moment for me to realize that what I had been battling and being depressed about for most of my life was something real—more or less. In the mid 1990s the diagnosis was like Dr. House trying to figure out what was going on, except that fibromyalgia wasn’t supposed to kill anyone.

I’d spent much time and money going to my doctor with weird lists of symptoms. He would pick one to try to help and let the rest go. After all what do you make of headaches, sciatica and plantar faciitis all at the same time? He sent me to an allergist and a podiatrist while trying to figure out the back ache.

After finding out that all these could come under one problem, I was much relieved, at least temporarily. From there I got one of the few books available at the time on the subject and read it cover to cover, making notes as I read. The main idea I got was in order to get a doctor to pay attention to more than one symptom at a time, I would need to write extensive notes on my life, symptoms, diagnoses, etc.

So I wrote about two pages single-spaced and went looking for a doctor. The first one I found came from a big city down our way once a month. I gave him the pages. He poked me in lots of places that all hurt. He said I had fibromyalgia and needed to do three things: get good nights’ sleep, exercise and lose weight. Of course, he didn’t offer any useful advice about how to do those things.

I saw him for awhile and then went to another doctor. I asked the first doctor for my records and got them in a sealed envelope. This was my problem and he wanted me to ignore his remarks? No way. I opened the envelope and was shocked by what he had written. He called me “a nut job” because of my two page single-spaced report. I only did what the book told me to do. What kind of doctor makes those kinds of notes anyway?

The next doctor saw me every month or so, took blood, asked how I was and told me he didn’t give pain medicine. He didn’t give me anything to help me do the three needful things, either. I finally quit going and gave up.

I was very depressed much of the time, but I also would become jazzed up from lack of sleep and get a lot accomplished for a few months. One time I got so hyperactive, loud and obnoxious that a friend of mine told me I needed to see a psychiatrist right away. I went and suddenly I found someone who was willing to help me with the fibromyalgia because it overlapped what she said I had—bipolar disease. Suddenly I had help with the sleep problems and also with the pain.
I had been wondering for years if I was depressed because I was in pain or in pain because I was depressed. When I was no longer as depressed, I realized I still was in pain. So maybe I had been depressed because of the pain. I still wasn’t convinced. When I then couldn’t sleep because I was in pain, I would get hypo-manic. I’d get things done, but I was still in pain. So, it appeared that the pain was separate from my mental state. The psychiatrist gave me some pain pills. I still take them, but only when I am in severe pain. I hoarded the pills because I was always afraid the doctor would stop giving them to me. Later I found a family doctor willing to give me the pills as long as I don’t ask for them very often.

I sleep very well now, but I have gained weight because I have been eating unhealthily and I don’t exercise. When I hurt, I don’t want to go for a walk or ride my stationary bike. I try to do what I know is right, but I find myself being very noncompliant after a short push to be good.
So I am focusing on one thing at a time. I am currently experimenting with natural remedies for dealing with the pain. Health food stores are full of products for pain made of different nutritional ingredients. If I can feel better, maybe I can work up the enthusiasm to exercise.

I’ve learned a lot in the past 15 years about myself and my relation to doctors. I have too much respect for myself to put up with doctors like the first ones I had ever again. I still need to respect myself enough to work on feeling better. Works like those of Maja Iten have given me new encouragement.

I have also learned that I am not my dis-eases. I am not bipolar or fibromyalgiac.

I am me.

--Ann Mullen, Texas