Finally, a diagnosis for all of these (at times) debilitating symptoms! The rheumatologist looked at me and frowned then looked away. While writing on my chart he said, "You have Sjogren's Syndrome…It's an autoimmune disease." He then handed me a post it note with the words Sjorgen's Clinic on it and a number to call.
"I'm not pushing you off,' he said, "but they can do tests." Tests? Why do I need further tests if my SSB (Primary Sjogren's) blood work was was more than three times the highest number? I have decided against having my lip biopsied for the sake of science. I have heard too many stories of numb lips lasting months, even years.
I know when I first noticed symptoms. In 2004 my father was diagnosed with Stage IV, terminal lung cancer. I noticed soon after that my feet burned a lot of the time, mostly at night. My husband would have to wrap my feet in cold washcloths. Now I know that it was…is…peripheral neuropathy, which is small nerve involvement common in people with Sjogren's.
I also noticed that I was very fatigued, I really didn't sleep much at night, and I was achy. I had strange, unrelenting joint pain. Now, my feet burn daily but my hands are always cold and never feel warm. My whole body is cold. I wear a jacket all the time. My muscles ache terribly. I have such horrible joint pain and stiffness that I feel like a ninety-five-year-old woman in a forty-eight-year-old body.
I can't do things with my children that I used to do. Forget an amusement park. Even a day of shopping makes me feel as if I have been hit by a truck. This syndrome is invisible. I don't look sick. No one really understands. No one "gets it" at all. My husband is so tired of my complaining about Sjogren's that I refer to it now as, "That stuff I have." It's upsetting. I told my sister about my diagnosis. She said nothing.
People tell me, "Well, if you lost some weight, you'd be fine." (I need to lose fifty pounds.) Even my rheumatologist smirks when I ask him a question. I have thinning hair now, for about six years. He told me, "Oh, maybe heredity." Really? It is a symptom of "This stuff I have, right?"…"Well, yes, but…" My joint pain? He told me, "Maybe because you have chronic fatigue…"
Maybe? Why doesn't anyone understand? Why doesn't anyone care? Maybe if I lost this fifty pounds off of my 5 foot 7 frame then people might believe me when I say, I can't go to a movie that late, or that I can't go to the pool all day.
What's next for me? I'm not sure exactly. I refused to fill the prescription for Tramadol. "Oh, it will probably make you very sick for awhile…" Now why would I want that? I have a full-time job and one part-time job. I just lost my part-time job cleaning my church. (That, ladies and gentlemen, is what you get for asking for prayer about your recent autoimmune diagnosis! Therefore, I have not told my full-time boss.)
The next step is plaquenil and/or steroids. I am holding off as long as I can, and it is getting tough. I take calcium-magnesium. (Who knew calcium magnesium was a natural relaxer! Not me.) and sometimes valerian root to help me sleep. I don't want to host my own pity party. I just want people to understand that I'm tired. I'm sick and tired.
Webmaster's Note: You may want to reconsider the Sjogren's Clinic, as such centers typically provide a wide range of patient services, including disease education and ongoing management by specialized rheumatologists. Tramadol is an opiate pain medication used only for chronic and severe pain, so generally the benefits outweigh the side effects for those with widespread joint pain. It might also be something you may want to reconsider, or at least discuss at the Sjogren's Clinic.
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Story posted 02-22-11 SLE
Story Artist: Shelley Ensz
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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.