Saturday, October 8, 2011
Living with Fibromyalgia
Fibromyalgia (new Latin, fibro-, fibrous tissues, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain; also referred to as FM or FMS) is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms. Fibromyalgia is estimated to affect 2–4% of the population, with a female to male incidence ratio of approximately 9:1.
(taken from Wikipedia)
SO THIS IS FOREVER? I was diagnosed with Fibromyalgia about 15 years ago, at the age of 15. I have, however, been living with the symptoms for most of my life. I remember the pain starting at around 8 or 9 years of age and doctors chalked it up to "growing pains," which we now know are mostly a fake diagnosis used when they have no idea what's wrong with children experiencing diffuse muscle pain. I have had sleep disturbances and anxiety all my life. I started gaining symptoms around the age of 13, and began seeing my pediatrician for them at that time. Two years and dozens of x-rays, blood tests, and specialist visits later, a rheumatologist finally came to the diagnosis of Fibromyalgia. While it was a relief to finally put a name to the problem, the fact that it was a chronic, incurable condition with few treatment options did not bring much hope my way. Fibromyalgia Photo
YOU HAVE WHAT? I thought that having a name for my ailment would bring relief in that teachers, school nurses, fellow students and others would finally believe that there was something really wrong with me and that I wasn't just "playing hooky." In fact, the opposite happened. I was often told that Fibromyalgia was a psychiatric disease and that it was all in my head or that it was just "the Yuppie Flu" and I needed to "get over it." It didn't help that at that time, 1995, Fibromyalgia was mainly treated with mild tricyclic antidepressants to help regulate sleep. If you take psychiatric drugs, it must be a psychiatric problem, right? Besides, I always looked fine, if a little tired. I have always thought that was actually one of the downsides of Fibromyalgia; if we looked sick, people would believe we are sick.
PAIN. That's probably what gets everyone with Fibro to go to the doctor for it the first time. And that's what keeps you going to the doctor, again and again and again. When I was first diagnosed, they flat out told me that non-steroidal anti-inflammatories (NSAIDs) don't work on Fibromyalgia because Fibromyalgia doesn't actually cause inflammation. Then they proceeded to tell me to treat my pain with Aleve (Naproxen), which is a NSAID. Now, I may have only been 15, but I was a pretty sharp kid and I knew that 2+2 does not equal 5! As expected, it didn't touch the pain, but I took it, as directed anyhow, for three years. When I went to university, at the University of Rhode Island, my pain got worse and I started taking more than the recommended daily dose, eventually self-medicating with over twice the daily dose. That barely touched my migraines let alone my bone splitting body pain. It wasn't until I started having constant burning stomach pain and it was determined that I was in the process of giving myself an ulcer that my rheumatologist was convinced that I needed something else to treat the pain. He prescribed Ultram (Tramadol), an opioid analgesic. For a while, this actually helped a great deal. Eventually, though, my body got used to it and I began having to take more and more of it until I reached an unhealthy dosage and had to discontinue use. It has been at least 10 years since I took Ultram, now, and I am hoping to ask my current rheumatologist if I can try it again as it was the only thing that has ever really helped my pain. No doctor has ever been willing to prescribe me any other pain medication, even though I have no history of drug use or drug seeking behavior. People with Fibromyalgia find that this is the case shockingly often because we have an invisible disease and doctors are reluctant to risk their reputation prescribing opiods or other narcotics to people who don't even look sick.
FATIGUE. This is probably the second most common reason to see your rheumatologist. No matter how many hours I sleep, I never feel rested. Never. I sleep 8 hours a night and still need to take naps during the day. Even with all that sleeping, I'm still exhausted. When normal people sleep they reach a stage of sleep where there is little brain activity other than what is automatic to make them breath, make their heart beat, and other natural functions of the body. That is when our bodies have time to repair themselves and really rest. People with fibromyalgia rarely reach this stage, their brains stay very active, almost as if they were awake, throughout the night. Also, people with Fibromyalgia rarely reach REM (Rapid Eye Movement) sleep, which is when we dream. When I was first diagnosed with FMS, I was prescribed Elavil (Amitriptyline), a tricyclic antidepressant which is used to treat chronic pain and insomnia. This worked for a couple of years, but as with most drugs and myself, it's effects diminished and I had to switch to another medicine. I went through a number of drugs for the purpose of sleep improvement until I finally had a sleep study done in 2008. The sleep specialist said it was clear that medication was not going to help me and prescribed more time spent outside in the sun and a regular sleep schedule to help me regulate my sleep. He also suggested only using my bed for sleeping, no lounging around, no reading. Just sleeping!
OTHER SYMPTOMS. The other symptoms of Fibromyalgia send us not only to our general practitioners and rheumatologists, but to psychiatrists, gastroenterologists, nutritionists, opthamologists, pain specialists, physical therapists, chiropractors, gynecologists and urologists, neurologists and cardiologists, among others. We have so many symptoms that we often don't know whether to blame them on Fibromyalgia or something more or less serious. It can be extremely frustrating! Symptoms can include but are not limited to tingling of the skin, prolonged muscle spasms, weakness in the limbs, nerve pain, muscle twitching, palpitations, functional bowel disturbances, cognitive dysfunction (known as "brain fog" or "fibrofog"), which may be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, impaired speed of performance, inability to multi-task, cognitive overload, and diminished attention span. Fibromyalgia is often associated with anxiety, and depressive symptoms. This is just an abbreviated list...it can go on, and on, and on! There are also many comorbid disorders (disorders that are also commonly found in conjunction with Fibromyalgia) including Irratable Bowel Syndrome, Tempomandibular Joint Disorder (TMJ), symptomatic hypoglycemia, Migraine headaches, multiple chemical sensitivities, etc...
Having said all that, Fibromyalgia has changed my life a great deal. It changed my high school experience because I missed a ton of school and got grief from a ton of teachers and administration even though I managed to keep an A- average, was in the National Honor Society, was my senior yearbook's assistant editor-in-chief, was second-chair clarinet in the symphonic band, and got into a number of colleges and universities for whom I didn't even write the essays for their applications! I think some of that harrassment also had to do with the fact that I had my eyebrow pierced my senior year of high school though! I was such a badass in 1998! (WOW, I'm getting up there in years!) It changed my college experience because I had to leave school, not once, but three times and have never been able to get my BA in philosophy and music like I set out to do. I have had to take time off from every job I've ever had because of Fibro, and had to quit my last job because of it. I eventually had to file for Social Security Disability because Fibromyalgia eventually made it impossible for me to hold down a job. It took me two years to get approved, but now I am officially disabled and while this affords me some benefits like Medicare, Foodstamps, and $577.80 a month, I still struggle both financially and emotionally. I struggle with the label "disabled" and being 30 years old. No one wants to be disabled. I hate hearing the question from older people, "So what are you up to these days?" or "Where are you working?" I hate seeing their faces sink when I explain to them that I, in fact, don't work; that the promising student from high school who won all those scholarships didn't amount to anything. I think that's part of the reason I started this blog; I still want to change the world. I struggle financially because my disability payments are not nearly enough to live on. I get in a month what many people get in a week. It doesn't go very far. Medicare is good insurance, but it doesn't cover eyecare or dental. And yes, it is embarrassing to use Foodstamps. I hate being part of a statistic. I hate having to depend on my family for somewhere to live. I am 30 years old and I will never have a job again. Do you know how strange that is to say? I will also never be financially stable. That is what living with Fibromyalgia does to some of us.
That having been said, Fibromyalgia will not break my spirit. I will continue to hope for new treatments, try new diets, read new books, try alternative therapies and more. I will believe in the possibility of the future. I may not be able to work, but that doesn't mean I can't have purpose. I may not be financially independent, but my spirit is. I hope to connect with more young people with Fibromyalgia and see how they cope with their struggle.
See you tomorrow with a lighter post. Have a great Saturday!