I HAVE FIBROMYALGIA

If you think you have fibromyalgia, the internet has a plethora of information. Most sites dealing with fibromyalgia will define what it is, list the most common symptoms, tell you how it is diagnosed, and explain some of the most common treatments for it. Nearly all will use the FMS (Fibromyalgia Syndrome) trigger points model, like the diagrams below.

Unfortunately, most of these sites—albeit reputable and informative—tend to use a lot of medical terminology and are often too generalized, leaving one to wonder if there must be more information out there! There is such a wide variety in the way people experience it, and with varying symptoms, that the syndrome becomes impossible to describe in one easy to understand paragraph.

What I found to be the most helpful were support groups where people just like me were describing their day-to-day experience with fibromyalgia. It was on those sites that I found full and complete symptom checklists, practical symptom journals, advice about disability, and a lot of really friendly people who were eager to supply answers to my questions. Not surprisingly, I found people who like myself, have been researching this disease to the point of exceeding their doctor's knowledge on the subject.

I’m not one to talk much about my ailments- otherwise I’d be complaining every day and that would get old real quick! But here it is in a nutshell- every morning my day begins with pain and stiffness in the joints and muscles. It feels like the flu or as if I had an intense workout the day before. I take my morning pills with my coffee and wait for the meds to kick in. Even if I’ve slept for 8, 9 or 10 hours I wake up exhausted. Some days are better than others, and some days are worse. It’s usually worse when the barometric pressure is changing- I can always tell if a storm is coming 24 hours in advance. That’s when every muscle in my body feels like rubber bands that are being stretched beyond their limit and pain meds don’t help at all.

My body uses up its supply of serotonin for pain modulation, so I take anti-depressants that boost serotonin. It helps a little, but my depression is always there just under the surface. That’s why it’s so important for me to surround myself with positive people and work hard at keeping a positive attitude. In the past, both pain and depression were out of control when I had to deal with negative people on a daily basis. Nastiness at my previous job as well as a previous relationship left me really sick. Stress can change your chemical balance, so I cannot emphasize enough how important it is to reduce stress in your life as much as possible.

Pain, exhaustion and depression can be so overwhelming. Most days, it’s hard just to shower or take care of the usual daily tasks such as dinner and dishes. I used to feel really guilty about this, thinking I was just lazy but now I understand this is a common difficulty and am much more forgiving of myself.

“Fibro-fog” is another issue fibromyalgia sufferers struggle with. Memory and concentration are compromised, and I’ve recently read that it may be due to sleep deprivation. For some reason, fibromyalgia affects one’s sleep patterns so that sleep is not restorative. Personally, I suspect that sleep deprivation is at the root of this disease. I know that my muscles tense as I fall asleep, instead of relaxing like a normal person. It’s as if I spent my entire sleeping hours running a marathon.

“Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”

I’m pretty sure that I’ve had fibromyalgia since at least 1993. That is when I began using NSAIDS excessively. But now that I think back, maybe it began when I was very young. I remember sitting in my desk in elementary school, desperately trying to stretch my leg muscles to stop the ache. Back then I just thought it was because I was in gymnastics and over-worked my body. Nowadays I spend a considerable part of my day stretching in hopes of relieving the aches. At least I have remained flexible into my 40’s as a result!

I have recently applied for disability due to the increasing severity of my symptoms. I can no longer work at a regular job, in part because there were never enough sick days to cover my really bad days. And also because I could no longer do my job, physically or mentally. The application process for disability is a bit demoralizing, but I guess it's worth it to keep me out of the poor house.

One of the biggest frustrations is the fact that very little is known about fibromyalgia. Many doctors are not sure how to help you, and getting a diagnosis is a very long process. I spent years trying to find out what was wrong with me.The first step is having a discussion with your family doctor. From there you need to get a referral to a rheumatologist, or sometimes a neurologist may be a good choice.

Finding a good doctor who is knowledgeable about fibromyalgia is difficult, and often disheartening. There is no blood test to confirm fibromyalgia, and it is often a diagnosis of exclusion. Your family doctor and/or rheumatologist will need to run several test results to rule out other similar diseases and disorders. Some doctors continue to believe that the pain is all in the sufferer’s head, some part of a psychosomatic disorder. Thankfully, many doctors now understand that fibromyalgia pain is real and part of a syndrome with many symptoms.

Unfortunately for me, some of my rheumatologists, chiropractors and general practitioners were not very helpful. One rheumatologist told me, “You’re not as bad as my other fibromyalgia patients.” Another one said, “Your goal should be to reduce your pain by 10%. Any more than that is not realistic.” I’ve also been told that if I go on a dairy-free diet, that I might get better. Unfortunately, that didn’t work as hoped. My neuropsychologist suggested that I go on a gluten-free diet. I have yet to attempt that suggestion. My current doctor also would like me to try the “Elimination Diet” which is even more difficult, but I have a feeling that certain foods make fibromyalgia symptoms worse. I’ve also heard that sugar is a big culprit. So these are on my to-do list.

After many tests and a few years of trial and error with medications, I’ve finally attained a bit of relief through my current doctor. They really listen to me and know that what I’m experiencing isn’t all in my head. They also understand that I have a bad habit of under-reporting my symptoms. I’m also super impressed that my doctor does a lot of research for her patients. She’s always checking out new articles and medical journals.

I too have been reading many scientific journals, and there is evidence that people with fibromyalgia have some interesting commonalities. Research into elevated levels of substance P, insufficient levels of dopamine in neurotransmitters, abnormal serotonin metabolism, deficient growth hormones and other irregular compounds in the brain are introducing some interesting hypothesis. I think we’re getting closer to figuring out what causes fibromyalgia, and at the very least understanding how to relieve the symptoms. Never give up hope!