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Lightworker
11-01-2011, 07:32 PM
Hello! Thank you for sharing your experiences with Lupus. I have joined the group so that I can learn more about this disease. My mother had SLE and while I have not received a diagnosis of it, I have tested as "borderline" (not really sure what that means though) and most recent blood test showed I was no longer "boderline" but was "negative" this time. Very confusing... I have Reynauds Syndrome which comes and goes in waves of frequency and intensity - it affects my index and ring fingers (and similar placement of toes as well) the most and I also get RS affecting my nose (which gives me headaches, I just figured this out recently). I see a Rheumatologist for arthritis, which also swings in waves like the RS does. I have had some serious bouts of my nails (hands and feet) detaching from the nailbeds (some pain with that too). I am sensitive to light (breakout in hives but they don't always itch..so it may just be a rash), so I limit my sun exposure. Just this week I have had some swings in my level of energy. I am usually very active and have historically had lots of energy and didn't really "think" about it. The last few days, for some reason, I am exhausted and it came to my attention last night that it is an odd feeling for me - and Lupus came to my mind. So here I am, here to learn more about Lupus from the experience of others. Thank you for listening, caring and sharing. I'll check back with the forum again tomorrow. Blessings to you all!

steve.b
11-02-2011, 12:41 AM
hi lightworker, and welcome.

it has never been a prerequiset to have a lupus diagnosis to be here.

many of us have several different disorders at the same time.
reynauds and arthritis are common amongst us.

please take the time to read some of the older threads, ..... they are our personal experiences.
also feel free to join in on them where you want to.

again welcome to our cyber family.

kim,l
11-02-2011, 02:56 AM
welcome whl my mother has lupus and so have i and my daughter recently diagnosed but as steve said we all have different auto immune diseases and some are still trying to get diagnoses.

sharpiessave
11-02-2011, 12:16 PM
Welcome! I must admit, I've learned more here than I ever could have found out on my own. I'm so glad you found us, and I look forward to getting to know you.

Sharpie

Gizmo
11-03-2011, 04:27 PM
Throwing my welcome in with the others. I don't have Reynauds but I have great sympathy for the many on this site who do. Fatigue is something I know a lot about and I am imagining that it is very frustrating to go from having lots of energy (don't remember what that is like) to little energy. I hope you stick around and post when you have something to share.

magistramarla
11-03-2011, 08:52 PM
Hi Lightworker,
Welcome to WHL. Many of us have been through that frustrating "borderline" dx and we all know what it is like to have a positive on one lab result and a negative on the next. The trick is to find a rheumy who will treat the symptoms and not just rely on lab results. If you find one of those, don't let go!
I hope that we can help with your questions.
Hugs,
Marla