"I only get one life and I will not let Fibromyalgia take the joy from my living it."

Friday, February 19, 2010

My Diagnosis

To help you get acquainted with me, the following is a previous post on my personal blog from about a year ago:

I was recently diagnosed with Fibromyalgia. Everyone wants to know what that is. I hope this helps. It's going to start out technical, but hang in there, it will get personal. Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities. Although chronic, widespread body pain is the primary symptom of fibromyalgia, a variety of other symptoms are common in FM patients. Symptoms include: moderate to severe fatigue, sleep disorders, problems with cognitive functioning, IBS, headaches and migraines, anxiety and depression, and environmental sensitivities. Recent studies have suggested that FM patients have generalized disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals. Fibromyalgia often occurs following a physical trauma, such as an acute illness or injury, which may act as a “trigger” in the development of the disorder. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. What does that mean? The thingies in the brain that send the signals to the rest of the body have been injured. They are misfiring or over firing sending pain signals and confusion to the body. So what does my Fibro look like? A lot of people with FM say that they know when it was triggered. . . they fell or were in a car wreck. I can't pinpoint it. For me it seemed to come on slowly over the years. Although I now know that I have an old whiplash injury. I wonder if they are connected. I have been experiencing pain in the muscles and joints for a couple of years now. Sometimes the pain would radiate from the joints into my bones. Sometimes the pain was between the muscle and bone almost as if it was the connective tissue that hurt. Usually it was the worst at night. Everywhere that my body was in contact with the mattress would hurt. I would have to turn over every two minutes trying to relieve the pain. I have fatigue and muscle weakness. FM is often misdiagnosed as chronic fatigue. Some of you may remember that I have suffered for about 9 years with extreme sensitivity to light, sound and smells triggering migraines, vertigo and nausea. Evidently that is related to this as well. I also have "fibro-fog" which is a physical symptom of FM that can cause mental confusion, fuzzy thinking, short-term memory loss, inability to concentrate or pay attention, and language lapses. If you know me well, you know I have all of those. LOL Experts seem to agree that sleep deprivation is the primary culprit of fibro fog. Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency. My Diagnosis: Two years ago, during an episode & LOTS of tests, the doctor said that I may have Fibromyalgia. There is no test for FM, to date. You only test negative for everything else. He said he could send me to a rheumatologist who would do the same tests and then diagnose me. At the time there was not a lot they could do for FM patients. They give you pain pills. I figured, why get diagnosed with something they can't do anything for. What if we have to change insurance? This fall when I went in with my worst episode yet, he said that a lot had changed in FM treatment. He explained what was believed to be the cause. Then he told me about two medications that actually treat the disorder, not just pain medicine. What medication am I taking? The first medication that I was prescribed is Lyrica. Lyrica, which is a seizure medication, inhibits those hyperactive signals in the brain. It calms them down just like in the prevention of seizures. The second medication I was given is Cymbalta, which is generally an antidepressant that is also used to manage pain, which is how it is used for treating FM. I asked the doctor why, if the problem is in the signals and the Lyrica is supposed to fix that, do I need to take the Cymbalta for pain. He said that some pain we have had so long that it has left an imprint on our brain. The Lyrica can't help that pain, but the Cymbalta can and has for me. Taking these two prescriptions combined has made a world of difference for me. A month ago I thought "It's like I'm normal." But I'm not. I've learned that if I overexert myself, which is easy to do, I seem to have more problems with everything. Unfortunately, taking the medicine has a price, besides monetary. Both these medications cause weight gain. And I have. But usually when you gain weight you feel worse. I am feeling better even though I'm gaining weight. Hopefully the weight gain will stop soon as it is very discouraging. I also take Melatonin, a natural sleep supplement. What does this all mean for my work? I work in childcare. For seven years I have been caring for babies 6-12 months old. I was having too much back pain and lots of shoulder pains. I was reassigned to work with the babies birth to 6 months. That has helped me a lot since there can be a huge difference in their weights. So for now I can continue to work, although for next year I have just signed up for Tuesday and Thursday instead of Tuesday, Wednesday and Thursday. This will give me a day in between to rest and recover physically if needed. What is my course of action? I'm under the care of my physician, going to the chiropractor, taking my medicine, doing water aerobics, occasionally massage therapy, trying to pace myself physically and keep stress levels low. I know this is all a lot of information. But this is my what my fibro looks like and how it's being treated.


1 comment:

  1. They are also using the anti-depressant Savella just for fibro, too. That has been a miracle drug for me. It took a full 8 weeks to kick in, though, but once it did, I found myself sleeping better-much deeper and began to have dreams again. My pain comes and goes-unfortunately, I've got lumbar disc disease, too, so I'm always in pain. But the Savella has certainly helped with the fibro fog and other fibro-related maladies.

    It, too, is expensive-about $157 a month and my rheumatologist had to do a prior auth on it to my insurance. Luckily, he supplied with me lots of samples while it was being approved.