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"Lupus Awareness" (kam123)

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"MDJunction to me is a life saver... when i first was diagnosed with Scheuermann's Disease i wrote a message to a page i found on google, hoping that they could help me.... you'd never know it but that weird feeling (you know that one where it feels like someone actually cares) came over me when i opened my email next day to find that someone on the other side of the world (at the American Medical Library)had read my message while i was sleeping, and there low and behold was the address to MDJunction.... well it is everything to me, i live it breathe it and love it!!!!! I have found many people who are struggling with similar issues banding together to help each other. It is the best place in the world, and i couldn't think of another place to go to meet so many lovely people....

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10/05/2008 21:18
Jan52
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Hi! I'm new to the support group, so if this is an old topic please bear with me. My lupus lab work looks good, but I continue to have tons of pain. My rheumatologist says he thinks the pain is more related to fibromyalgia than to my Lupus. Is anyone else in the same boat? It seems like I am going more for pain management than for SLE these days. This is very frustrating!

Thanks! jan


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10/06/2008 14:22
mumeva
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It is very frustrating. I hurt all the time and when I see my rheumy she says well do you think its your fibro or is it the nerves and joints that seem to be bothering you. I always tell her that its EVERYTHING!!! My labs always look good too but we do know that I not only have fibro but central nervous system lupus vasculitis. I just know that I always seem to be hurting but I take a ton of meds. One would think that one of these meds alone should be helping me. So you are not alone. We here are all pretty much in the same boat. This is a great support site so vent away if you need to.
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10/07/2008 18:06
fibroforever
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I too am in the same type of situation. It's strange... for approx. 18 years, my labs have shown a possitive speckled ANA with a higher titer level. But, it's always been the Fibro that's showing the worst symptoms. This last time I went to the rheumy though- I had commented on my low-grade fevers, more than normal swollen joints, and cold sores in my nose and mouth. She really thought it was my Lupus acting up. Guess what?! They checked the blood work and my ANA showed negative. I'm still thinking the lab screwed up, like accidently switched my tube or something. Who knows.

Anyway, I just wanted to say- I'm right there with ya on the Fibro vs. Lupus thing. Hang in there!

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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11/18/2008 00:36
Christine
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I was dx in 1990 with fibro..

Sometimes i think its just so hard to know which pain is coming from which illness !

hugs Christine x

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Lupus,Aps,Raynauds,Sjogrens,Vasculitis,CNS Lupus,coeliacs,Fibro.
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11/18/2008 03:11
AliciaSA
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I'm in the same boat too. I just had a checkup with my rheumy and she took me off the only med I was on for the lupus. I'm feeling more lousy every day. I want to give it some time to see if I can go without it, but I don't know how long I'll last at this rate. I thought most of my pain was from fibro too, but I guess not!

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11/18/2008 03:20
Christine
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Hi there...what med was it and what reason did she give you for stopping it ?
hugs Christine x

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Lupus,Aps,Raynauds,Sjogrens,Vasculitis,CNS Lupus,coeliacs,Fibro.
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11/20/2008 08:14
AliciaSA
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I was taking Plasmoquine (similar to Plaquenil cuz we don't have it here). She took me off it because my titer was low and she thinks I don't need it right now. Fyi, I've been feeling better the last 2 days, so maybe she's right? :-/

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