FIBROMYALGIA
FIBROMYALGIA
I finally got a diagnosis! It isn't life threatening, or even life shortening so it looks like I can expect to suffer to approximately the age of 83.5 and that is part of the GOODMy story starts in the middle. It is starting now. I have had the big *F* for at least 4 years but probably much longer (even as far back as my early teens if not younger) than that but only recently got diagnosed. February 18, 1998 is a new anniversary date I can circle on the calendar. I knew nothing about this syndrome, (I thought I was going to have the diagnosis of Chronic Fatigue Syndrome confirmed) except for how it made me feel and that is definately BAD.The prognosis is theUGLY it is chronic which means forever! There is no cure, and that is pretty ugly too!. The best I can hope for is that I learn to live with it. I recently saw a cartoon, of a lady looking at cards in a card shop in front of her were two choices *GET WELL* and *learn to Live with IT*. What a choice I have.But the good news is, that I did find the cartoon funny.:)Because the diagnosis, is so new to me, and basically out of left field I am overwhelmed with all the information I have to sort through. There is a lot of information out on the web, but unfortunately it takes some effort to find it.:)) At first, I was angry, then came demial. I thought if I ignored it, it would have less of an effect on me. That is just not true. I am slowing coming to terms with it. I have left the *WOE IS ME PARTY* but have not quite become a member of the *PASSIVE ACCEPTANCE CLUB*. I have decided that I will have to work extra hard to be happy, and to be content with spontanaity as I never know from day to day what it will be like, so planning seems to be a wasted effort.:)) I sincerely had high hopes of being an inspriation to anyone looking for hope and at first I was hopeless and could only think of the negative things but I am coming around. Yes there are a lot of things that I can not or no longer should do, but with proper rest and treatment I can still have a good and useful life. I do take more pleasure now out of the little things. Like dancing with my three year old son. For all of his life I was told not to do too much and would conserve my energy but now we occasionally get to *cut the rug*. Maybe not as often as I would prefer but it sure beats never being able to do it.
My husband and I have started *ONCE A MONTH COOKING* and the rewards from that is tripled. We spend the day together cooking and cleaning for the entire month. It has been good quality time for us and two, we have cut our grocery bill by about 60% and the very best reason of all is that I don't have to slave in the kitchen every day and we always have a good dinner without having to go out or call for PIZZA. (not that pizza is a bad thing;-).
I have not been able to determine what brings the flare-ups on, but I am getting better at recognizing them earlier so that do not last as long as they have in the past and have not been as severe. I have learned that I have to listen and trust my body and not keep on pushing myself).
One good thing has been meeting someone on-line who has traveled the path before me. She was the one that brought the dip to my pity party and made me laugh when I needed it most.I had met her the night before my diagnosis and she listened to my fears the night before and my frustrations the day of the diagnosis and she has kept me laughing ever since. If you need to have a pity party she should be your first invitee (and I wouldn't mind being number 2. afterall she makes a much better dip than I do:)I don't mean for it to sound like I am writing her name on bathroom walls here but if you would like to have a good time:) go to Denise's home within her home
So I have to learn to lighten up. To take each day as it comes, and to enjoy each moment. I have come to recognize that stress is my biggest problem. I am just that type of person who tends to worry over everything. I am learning to let go of things I have no control over.:) FIBROMYALGIAis a form of rheumatic disease, chronic pain that can come and go, but it is not a form of arthritis. So the good news is I don't have to worry about deformaties or permanent crippling. My trouble is trying to figure out what is *overusing* my muscles, most days I feel like I have a real bad case of the flu but on a very few occasions I have even felt like superwoman or what I call *normal* I have yet to figure out what causes either feeling. The only recommended help is to get could quality sleep and light excercise. The 4th level of sleep is when you get the refreshing sleep and the muscles can begin to heal themselves. Pain, Fatigue and Sleep Disturbances are the primary complaints of people with the big*F*. They are all connected to each other, if you have one of these three you more than likely have the other two.So who knows how long anyone has it.. I recently heard they are beginning to link ADD not ADHD (the hyper one) in children to Fibromyalgia in adults. This disease is certainly a mystery.
In addition to the *F*, I have also been diagnosed with CEBV, which is Chronic Epstein-Barr Virus. Information is scarce on the virus itself, but even more scarce in the chronic variety. EPV is the virus that causes mono. Most people have the antibodies in their system long before they reach adulthood. In some cases, as in mine, I don't build an immunity to it as my b-cells continue making new cells including the virus and I continue to keep fighting it. It has been linked to CFS (Chronic Fatigue Syndrome)CFS but they are finding more and more that EPV is not necessary to have CFS. I have now been diagnosed with FIBROMYALGIA According to the Arthritis Foundation the symptoms are very similar in both and one doctor may diagnose CFS and another may diagnose Fibromyaglia. How they have come to diagnose CFS and Fibromyalgia is by ruling out other causes. I am happy that Multiple Lupus, and various forms of arthritis have already been ruled out as well as Lyme Disease. Thankfully, more and more medical professionals are beginning to accept the realities of these "syndromes."The most informative site I have found for Fibromyalgia so far is the The Fibromyalgia Network As I find more good information I will add it to my links to our favorites so keep checking back I am diligent!
For now, please take a look through the Fibromyalgia Webring there is some very good information out there on how to cope with someone with the big *F*.
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