I want to take this time to talk about my illness and how it has forever changed my life. The butterfly is the symbol for Fibromyalgia Awareness!I was diagnosed with Fibromyalgia, during the Fall of 2007, so I am fast approaching 1 year. This has been a very hard year for me as well as for the ones that I love and who love me.
I don't have the energy I use to have to do all the things that need to be done. I had to leave my job last year due to my illness and I have felt at times that I don't contribute to my family as I have in the past. Like I said, I don't have the energy! Somedays the fatigue is so severe that I could just lay in the floor and sleep for hours, however it's getting to the floor that is also a problem.
I am a member of an online support group on Yahoo and it has been a life saver for me at times. There I have met many people from all over the World and we have one thing in common, Fibromyalgia. We referr to Fibromyalgia as the Beast! There is a very sweet lady in the group who lives in Lufkin, which is only a short drive for me. I went and visited with her on day and she is such a joy. She still continues to work and has 2 kids who she just adores. I admire her so much because even on those days that it takes her 3 hours just to get to where she can walk and function she still goes into work as an RN. I am sharing the following letter that she has put togethter and shared with us Fibromites. I think it really hits on all of the aspects of how we feel and some of the things that we have to deal with daily. This doesn't mean that I feel the readers of my Blog think Fibromyalgia is not real. I just thought I would share this so that you would know and understand the hardship that is placed on many each day.
I am very fortunate to have a group of doctors who believe in Fibromyalgia, as most still don't. I am also very fortunate that I have a loving husband who has been there for me through it all and has been there to wipe my tears and tell me it's all going to be okay. I am very fortunate to have a wonderful support group of family and friends who have been with me at doctor appointments, test and have driven me where I needed to go on days that I had such a fear of driving. I love each of you so very much and I don't know what I would do without you! May God Bless each of you and may He continue to be with each of you. We are all so loved by our Lord and Savior!
You can also visit the following websites for more information regarding Fibromyalgia.
www.fmaware.org www.lyrica.com www.nfra.net www.fibromyalgia.com
The following is written by Debra V of Lufkin, Texas. I have her permission to post this to my blog.
I am a 44 year old registered nurse. I want to share a few things about my experience with fibromyalgia and add a few known facts about this illness. I never ever desired to become ill. I have always been a worker and have worked since the age of 18 years old. I use to consider myself healthy. I had the ambitions of becoming a nurse and fulfilled that ambition. It is not the easy way out to earn a degree. As a matter of fact many that enter nursing school fail or quit because of the constant stress and knowledge it requires to graduate. I graduated with a 3.8 GPA with honors in 1992. I went to work as a nurse and have continued until this day. (I tell you this because if you think that most of us are "do nothings" and are lazy or crazy... you are wrong). During my course of study, I never had the word "fibromyalgia" mentioned. It still falls short of the curriculum in most nursing schools now. However, the Medial Association has just recently added fibromyalgia to the medical school curriculum. So, I did not make this illness up and never just decided one day to become a lunatic or a lazy hypochondriac to "get out of life's" responsibilities. I also am NOT a druggie. I had ONE prescription drug until the age of 39 years old. This illness is very real. It is stigmatized worse than AIDS ever was. We (the approximately 10-15 million Americans with this illness) are laughed at, gossiped about, and are made the subject of skepticism. So, fibromyalgia would not be the diagnosis one would make up if they wanted any sympathy. Think to yourself...WOULD you want this diagnosis? I suspect not. Many of us affected by this illness would rather not even tell about it because we know that at least half the people we discuss this with will label us, ostracize us, doubt us, and just plain not believe us. I would make up something else if I wanted to lie about being ill. I would make up something that people would believe if it was all a big hoax. From a young age I noticed I required more sleep than others. I just brushed this off and paid no attention to it. I went to my doctor in my early twenties about "being tired" all the time. He just told me to "exercise more". I did that. It made no difference. (Tired has now progressed to chronic exhaustion). This illness was mild back then. I also developed numbness and tingling in my fingers that would come and go. I ignored this too. I would experience times when I would ache everywhere and would just say "I must have a virus". I never once thought I had a chronic life altering disease. This illness affects people in very different levels of severity. Mine progressed. They say it won't, but it does. In my late 30's while I was still working just like now, I became very ill with a flare. I had no idea what was going on. I felt like I was going to die. I had pain in my hands that lasted for about 4 weeks so severe I would cry. The numbness and tingling I had for years turned to burning pain. I was more than tired. "Tired" would not describe the exhaustion no matter how much I slept or how little I slept. My knees began to hurt to the point I could not get in and out of a tub without help. I was hurting all over to some extent. The stiffness of fibromyalgia also sat in about that time. Stiffness all over to the point I could not get out of bed without help. "Fibromyalgia" was a word I had NEVER heard. But I was diagnosed by my family practice physician a few weeks later. I am one of the lucky ones inthat I have a doctor who knows that fibromyalgia is real. Many suffer this without anyone to help them. I have never been the same since that flare that lasted about 6 weeks. I still work with much difficulty and have to support two young kids that came late in my life. Believe me, if I could quit work, I would. I push my body beyond its limits. I suffer pain now on some days that is probably equal to that of a cancer patient. I look like I have a hangover at work most days. (I do not drink). And believe me, these symptoms were all there before I ever went on any medication. The balance and coordination problems were there. The concentration problems were there. But without medication, I would not be able to work. Not because I enjoy paying for all the meds and doctor appointments out of pocket with no insurance. Not because I am "addicted" to pills. But if not for the medications, I would be bedbound now. The meds do not get me "high" and they actually help me to function with this disease. So, just because you cannot see this disease does not mean it is not real. Research is putting pieces of the puzzle together now. There are facts out there which are documented by research. The whole picture has not been put together yet. But it is a disease of the Central Nervous System. FIBROMYALGIA is REAL. Sleep studies show that fibromyalgia patients never reach the deepest level of sleep. Stage 4 sleep is absent. Studies also have shown images of the brain in people with this disease. Those images prove that even light touch or pressure on our body IS interpreted by the brain as PAIN. They have also proven by brain imaging that every stimulus such as light, sound, touch, and smell are magnified in people with fibromyalgia. It is described as the "volume being turned up" in our central nervous system. Studies also show that something called "substance P" in the spinal fluid is present in higher amounts than "normal" people. Substance P is a chemical that has to do with processing pain in the central nervous system. I would urge you to please, out of humanity, to read some facts about this illness before you assume your co-worker, friend, or family member is a hypochondriac. And please consider also that most of us do not fit the mold for being a liar or lazy. Many many of us have educations, have had or have businesses that are lucrative, and have worked all our lives. Many of us have burned the candle at both ends for years. We were not sitting on the couch eating bon bons. Also, many many I have talked to the past 5 years have lost homes, relationships, and careers because of fibromyalgia. None of us enjoy losing life as it once was so we can "make up" an illness that you cannot see but WE certainly can feel. I do not enjoy the inability to participate in my children's lives as they grow up. I have to stay home and rest while I miss countless activities in their lives due to severe pain and exhaustion. All I can do is work to make the living and come home and collapse most days. I do not enjoy handing all the resposibilities over to my husband because I am too damn sick to take care of my kids after working. I am not a hypochondriac, a liar, a "drug seeker", or an attention seeker. I am a victim of a disease called "fibromyalgia" . I get no sympathy. I carry the same load at work that any other nurse does. I get no assistance from the government and CANNOT even apply for disability. No one can apply for disability while they are requred to keep PUSHING their body to work. So what do I gain from this illness? Nothing but the risk of skepticism and redicule. Debra,R.N.
