Fibromyalgia Experiences

The doctor that diagnosed me believes that I have had fibro and many of its related illnesses the majority of my life. I agree. For years and years I have felt inexplicably crappy innumerable times. I simply accepted it. I thought that I just had a body that was a lot more defective than most peoples' -- I felt like my body would normally be the body of an unhealthy person a dozen years older than me. As it turns out, because of my illnesses, that is a rather apt description. In years past, I never imagined that there could be a couple illnesses -- mainly fibro, with CFIDS, a rather mild case of MCS, and possibly MPS -- that would explain almost all my symptoms under an umbrella diagnosis. Almost everyone else that I have met who's around my age and also has one or more of these diseases felt the same way as I did for years -- they just accepted their body as being below par, never imagining that there could be a disease or two which would explain almost all their symptoms. Please, if this fits you, schedule an appointment with someone knowledgeable about these diseases to see if you have one or more of them. Relief is possible. Believe it or not, you don't have to feel as crappy all the time as you are used to feeling. Heh. :-) It's not all in your head, it's not "just because" you are depressed (who wouldn't be depressed with any chronic pain disease?!), and it's not that your body is "just defective."

For many, many years I have had chronic headaches, bad stomachaches, tense and aching muscles, great difficulty sleeping, frequent and urgent urination, a sensitivity to temperature variations (it turns out that my body has more trouble with temperature regulation than "normal" bodies), some cognitive problems (explained by "fibro fog"/"brainfog," as it's rather affectionately called *heh*) , tingling in my body sometimes, and on and on. I never imagined that all these varied symptoms could be partially explained by a single disease -- fibro. Once, a couple years ago now probably, I read a novel in which one of the main characters redeveloped cancer, which the doctors thought had gone into remission. The author wrote (approximately), "For the second time in her life, she considered her body her enemy." I remember utter puzzlement that most people apparently didn't consider their body their enemy. Mine had felt like my enemy for as long as I could remember -- for lots of reasons, including the symptoms that would one day be classified as fibro and fibro-related (I was forever frustrated that they kept me at a lower level of activity and enjoyment than I felt most people must experience), being a survivor, and my extremely low body image, which resulted in an eating disorder.

Following my move to a new city and climate, my fibro symptoms (I didn't know I had fibro yet, though) began to be exacerbated. A job that I took working with children further exacerbated it, because I had to stand up most of the time and I had to carry children on my hip a lot. Over a month after quitting that job, I still have terrible hip pains, which I did not have before taking that job. I believe that the poor air quality of the city has also exacerbated my fibro and my allergies. (I could never live in L.A.!)

So, in May 1998, after hearing that a friend's girlfriend had been diagnosed with fibro and realizing that her symptoms sounded similar to mine, I began researching fibro in health books and on the net. I talked with my therapist, who told me that she has an autoimmune disorder and referred me to her rheumatologist. I went to see the rheumatologist within the week and she diagnosed me with fibro, and the related disorders of irritable bowel syndrome (IBS), chronic headaches, and a sleep disorder (I actually believe I have more than one sleep disorder). CFIDS (chronic fatigue immune dysfunction syndrome) almost always comes with fibro (some consider them to really be different sides of the same disease), so I believe I have that too. I also think that I have a relatively mild case of MCS (multiple chemical sensitivity); I have long had sensitivity to things like paint fumes, exhaust, and cleaner fumes. Interestingly, fibro, CFIDS, and MCS often come in a package. In spring 1998, I had also been diagnosed with asthma by my primary-care physician after a long battle with acute bronchitis. (I didn't know before that day that you can get asthma later in life.) My allergies and asthma appear to exacerbate each other sometimes.

The rheumatologist that diagnosed me started me on a very low dose of amitryptaline, suggested that I start taking Metamucil daily, and also asked me to start a daily aerobic exercise program. Interestingly, since I have begun sleeping even minimally better, my stomach aches have generally been far less frequent and far less severe, leading me to believe that they were rooted in the lack of sleep instead of any other problem. Amitryptaline has not been working the best for me, and the rheumatologist significantly upped my dose, a trial dose of which left me very groggy and very ill the entire next day. (I recommend that anyone with fibro try the same thing I did when a doctor wants to up their dose -- try the upping with the pills you already have first for a day to see if the side effects are severe. I did this because my health insurance had been cancelled and I didn't want to waste the money on the pills if the side effects would be too severe for me to take that level of dose. I ended up very glad I h hadn't spent the extra money.) She also wanted to put me on a prescription-strength level of ibuprofen, a drug which has not been shown to significantly help fibro patients in research studies, and which can actually hinder progress because it can interfere with sleep. I am rather unhappy with her attitude and lack of knowledge on the subject, and am currently looking for someone that specializes in fibro.

top | continued

home | about me | about fibromyalgia | my experiences
share your experiences | treatment | family-friends | resources |