Question:
> New kid on the block…
Hi..my name is Cheri and I was diagnosed with Lupus/Sjogrens Syndrom 10/4/98. I have been living with "something" for years and have spent $$$ trying to find out. I’m still not sure what I have..my rhumatologist says "lupus" but he is still testing for kidney damage, etc.. I have the skin rashes that look like blood blisters on my hands and feet…not bad, but I’m very self-conscious. I teach high school and this is very visible. Plus, my hands and feet go numb and tingly on me. I, too, have the severe headaches (late afternoon), dizziness and energy loss. Plus, I ache all over most of the time. The prednisone that I take is a very low dosage but it’s horrible! Sometimes, I think being tired is better than going through the side affects. I guess that the bottom line is that we’re both new to this and it’s kinda scary for me. It’s nice to know though that there are others out there who at least understand what I am going through. I have been called lazy, etc. because of my lack of energy. At least now I have a diagnosis! Cheri e-mail: ChDiercks "at" aol "dot" com
Response:
Hi all, I am 36, and was diagnosed with Lupus (SLI) last week. Mine seems to be a mild case, as compared to some of the messages that I’ve read here the last few days. I truly feel for those of you who have severe cases. I have had a rash, (not the "typical" Lupus rash) for about 1+1/2 years. A Dermatologist had it fairly well under control, and I wasn’t too worried about it. Then this summer I started having pain, stiffness, and swelling of the joints in my hands and wrists, mainly in the mornings. At first I thought it was a mater of getting into the swing of the busy season at work. (I am an automotive repair technician) The symptoms only got worse with time, so I visited my HMO. At that time they felt that it was probably arthritis. Not real good news for a 36 year old who has to work with his hands to earn a living. They did some basic blood tests, and said that I have a "connective tissue disorder", and referred me to a rhumatologist. 3 weeks later, I finally get to see him. He ran 10 blood tests, urine test, and more X-rays of my hands, and now problematic feet. The X-rays were clean, but the blood tests revealed the culprit. Yup, I wish it would have been Arthritis! He stared me on Plaquenil last week in addition to the Clinoril that I’ve been on for the swelled joints. The last 3 nights I have had a fever (101.3), muscle aches, MAJOR energy loss,and dizziness. I stopped taking Plaquenil until I hear from the rheumy (hopefully tomorrow). The symptoms are worst in the late afternoons and evenings. Any ideas of a way to combat this? Has anyone else had this kind of reaction to Plaquenil? Are there any herbal, or vitamin supplements that are beneficial for people with Lupus? I started taking Glucosomine and Chondratin for the joints when I thought it was Arthritis, and it seemed to help. I am still taking them. I quit for about a week and the joint pain got worse, so it’s doing something! Thanks for listening, –Paul My "reply" e-mail address has been changed to deter spammers. My real address is: scanguy "at" home "dot" com
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