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Thread: Waiting for a diagnosis

  1. #1
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    Default Waiting for a diagnosis

    Hi! I have been dealing with lupus symptoms for the past 3 years. In the summer of 2003, my three daughters all contracted Fifths Disease, so when I came down with the adult symptoms of the disease about 1 month later, I didn't think much of it. I knew I was in unbearable pain...my joints were so sore especially in my knees and fingers! I just ached all over and was EXHAUSTED!! I slept for 3 days with no releif. Also, my feet were so itchy! (not sure if that is a symptom or not!) I went to my Dr. who gave me the battery of blood tests including ANA which was neg. He had a concern for lupus because I had an aunt who died from lupus in the early 1970's.
    Since the summer of 2003, I have been dealing with these symptoms. Sore joints, extreme fatigue, butterfly rash on my nose and cheeks (although at times it seems to all but disappear), forgetfulness, anxiety attacks, pain in my chest, EXTREME SUN SENSITIVITY and low grade fever.
    There are times when the sun doesn't bother me, but other times it just about knocks me out...so I am pretty confused on that. Is that normal? Is it normal for the butterfly rash to go away at times?
    I have read that Fifths Disease can provoke the lupus disease in certian patients...is there anyone out there with a similar experience?
    I have an appointment with the Rhumetologist (sp) on July 26....my first lupus visit since Summer 03. I am nervous and anxious...but I really want to know because I want some relief. I think I could deal with the pain...it is the extreme fatigue that is making me crazy! I am missing out on my girls lives...they are suffering because I can't muster up enough energy to take them to dance, soccer, karate, etc. When I try my best, I end up overdoing it and then I pay the price!
    I know this is a long post, but I would appreciate and feedback...and any suggestions for how to talk to the doctor next week.
    Do my symptoms sound like lupus, or fibro, or chronic fatigue??? There are so many questions!
    Thanks for listening and I can't wait to hear back!

  2. #2
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    Everything you have said sounds like me the only thing that is different is I am always sun sensitive. The advice that I have to offer is that you write all your symptoms down. I always thought that I would remember and I wouldn't have write them down but as soon as the appt. came my mind would go blank. I have a spiral notepad that I write everything down on and I take it to the appt. so I won't forget anything.
    Your children will understand, it was very hard for my son but now he is my best helper.
    Your friend in Texas, Jessica

  3. #3
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    The list of symptoms you have sound so much like mine. (Sore joints-my fingers bother me the most , extreme fatigue, sleeping for days and not feeling any relief, butterfly rash-more noticeable when I'm in the sun, 8) sun exposure drains all the energy out of me.)

    During the months of Feb. and early March 2006, I was very sick. I thought I had a bad cold/flu. I had pretty high fevers every day, body aches, fatigue, very swollen lymph nodes, and loss of appetite. My family doctor prescribed me 2 different antibiotics, which didnt help at all. Then I noticed a rash on my face. When I went to the dermatologist, she looked at my rash and said that I may have lupus. After the skin biopsy, the results came back... Yes, I have lupus. I then went through further tests (blood tests, urine tests, even a kidney biopsy) all test results pointed to LUPUS. It was sort of a relief to know what's been making me so sick. It wasn't a cold or a flu. So, my rheumie and my nephrologist prescribed me with medication that has been helping me. My fevers are gone thanks to prednisone and my kidneys are being treating with Cellcept.

    This is my first summer with lupus. Its been very difficult, but I'm trying to cope with it. I've become photosensitive, and its very hard to avoid going out 8) . I get very tired, get rashes, headaches, and swollen/achey joints-especially in my hands. :cry:

    I keep a journal on how I feel each day. It helps you remember so when you see your doctor(s), you'll know exactly what to tell them when they ask you how you've been feeling. Its important to tell them exactly how you feel.

    Good luck at the doctors. Take one day at a time. Don't overwhelm yourself. Focus on one task at a time. And get enough rest.

    I'm glad you decided to join the forum. You'll find that everyone is very friendly and supportive. Whenever you need to talk or have any questions, feel free to post.

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