Hello, Joy here. Glad you stopped by to visit my site. If you're here, you probably have Fibromyalgia, too. Or perhaps you care about someone who does. If people can find just one idea, book name or helpful link to another site here, then the purpose of this site is fullfilled.
I was diagnosed with Fibromyalgia in 1993. This was after about eight months of going to different doctors (neurologists, internal medicine docs, an allergist) and basically not knowing what was wrong with me. It was very frustrating and depressing. I also went through a very expensive MS (multiple sclerosis) work-up, as at one time that's what my doctor thought I had. One day I saw Don Goldenberg, M.D. (a well-known rheumatologist/FMS specialist who practices in the Boston area) on the Good Morning America show. He had a chart with the tender points on it and was describing the symptoms of Fibromyalgia. I said out loud "Geez, that's me. That's what I have!" So, I basically diagnosed myself first and then had it confirmed by a rheumatologist. I also have CMP or Chronic Myofascial Pain (formerly called Myofascial Pain Syndrome or MPS) and Multiple Chemical Sensitivities (MCS). I also contend with TMJD and chronic headaches, which thankfully are somewhat under control with the botox shots in the muscles of my jaw and temples that I get every three months. Yes, they work...ask your neuro if you've tried everything else for headaches. I know they're using them for migraines now. They've been a lifesaver for me.
My Fibromyalgia did not result from a specific event like a car accident or fall. I had a pituitary tumor removed in 1982, I have always coped with extraordinary family difficulties; both with my family of origin and with my ex-husband's family. (I love you guys no matter what.) When my father-in-law was very ill in 1993, dying of cancer, all the symptoms I had had for over ten years banded together with their volumes on HIGH and literally struck me down. The FMS was telling my body to STOP. And I did; I had to, because this time I had no choice. Then add the facts that I had had a bout of mononucleosis and hepatitis at age thirteen (sick for about five months), and my low-normal body temperature and previous exposures to chemicals while working in the chemistry department of a major university, and you get a perfect candidate for FMS. Now, years later, I have been through many trials of medication and have settled in with a few that work for me. I try to respect my limits. Sometimes I purposely push the envelope to see if maybe, just maybe today things will be different. Maybe the FMS has gone into a remission or something. Hasn't happened yet, although I hear that it can. I exercise by walking, to my limit every day (except during the worst of flares). By the way, my limit is 22 minutes. The only "alternative" therapies I use currently are aromatherapy and massage and my trusty JAKO or Salonpas patches (see my Cheap Tricks). I do at least a half hour daily of visual imagery meditation and "belly" breathing to try to get a handle on my tendency to overreact to stress...stress is the worst thing for FMS. I am done with running to different doctors looking for a "cure" for my FMS. My subscription to the Fibromyalgia Network will let me know when that happens. I maintain my health as best I can with three doctors who help me in various capacities. I am in the acceptance stage of my illness now and do what I can to work around it. Once you get to acceptance, then you start moving forward. Oh, I have my days, weeks, believe me -- maybe it sounds like everything is going just peachy with me. Trust me, I continue to have flares on a regular basis. I know, for now, the Fibromyalgia is here to stay but nobody said my life was over!! But, wait, there's more! I'm an accomplished photographer and have sold many of my photographs. I continue to experiment and learn alternative forms of photography. I have a wonderful cat named Natasha, my baby (10/13/98 - Natasha has passed away, please see her Memorial Page) and family and friends who think I'm pretty special. I work as a freelance Web developer - yup, I'm a geek. I am studying aromatherapy, computer graphics design and animation. I spend at least three hours weekly answering email generated from this site and helping others interested in fibro on AllExperts.com. I love to travel when I can. I love comedy; (Jim Carrey, Penn & Teller, Adam Sandler, Drew Carey, Andy Dick, Brian Regan, Steve Sweeney, and RIP Sam Kinison...I'll ALWAYS love ya and watch old videos all the time) and all different types of music (Metallica, Suicidal Tendencies, A Perfect Circle, The Darkness, Bob Dylan, BrianWilson/Beach Boys, Sabbath, Santana, Annie Lennox, Smashing Pumpkins, Portishead, Itzhak Perlman, Michael Danna, Delerium), movies, reading, writing, and making unique cards and special painted boxes for friends and family. I'm always taking a class in something - the latest is screenwriting, and soon off to school yet again for advanced computer applications...such a geek, I'm tellin' ya! I collect vintage Nancy Ann Storybook dolls from the 1950s (Help! Somebody get me off the auctions on eBay!). I get to live in the best area of the country - we've got ocean, desert, mountains, wildlife (animal and human!). Yes, weeks go by that I have pain every single day. Some days I just want to throw in the towel. Some days I just want to pull the covers up over my head and tell the world to go to blazes. There are some days when I wonder where on earth I'm going to get the energy to make that first step out of bed. I grieve about not being able to do stuff I used to do. But, hey, you just find new stuff you CAN do. I can say this now, but I swore, kicked, screamed and cried all the way through a number of years in order to get here. Never one to "go quietly", I don't suggest you do either.So, that's me and my *#@!&% Fibromyalgia. But there's hope for all of us yet. Just read on!
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