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I hope you start feeling better. The sister of a very good friend of mine has lupus and she is able to lead a pretty normal life. She just has to be a little more careful about staying healthy than other people. I'm glad you finally have an answer. Now you know what direction to go in. Good Luck.
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If you're not dead, you've still got time.
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*gentle HUGS*
#254380 - 03/25/06 08:37 AM
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melitami
Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)
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I'm happy for you for getting a diagnosis, even though it's not what was expected. I can recommened the butyoudontlooksick.com message boards, they're a great group and several of them have lupus. It's an awesome support group.
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Melissa
Friendship is thicker than blood. ~Rent
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my mom discovered she had lupus, went on medication, and it made a HUGE difference, and now I even forget she has it because she basically has no symptoms. So yes, it's GREAT you got a diganosis because now you can start treatment. Good luck!
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Wow.... I had no idea you were even being tested...guess that is my fault for not being around much....
My Mom has lupus...and has since I was in grade school.... but she has it very much under control now with medications...there was not much available for the first 10 years of her having it 
Best of luck to you... {{hugs}} and keep us posted on your progress....
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Thanks for the hugs! 
I'm 29, but I've been experiencing these "flare-ups" since I was 19, about two years after my IBS started. My symptoms have included extreme fatigue, severe muscle and joint pain, joint swelling, sun sensitivity and skin rashes (which I always thought was just sensitive skin or acne that I only had during the summer). I've had other symptoms over the years, but they were so mild that I never really bothered with them (some mouth ulcers, a bit of hair loss) and never thought that they were connected. Now I see that they're probably all part of lupus.
The last two years have been really bad, which I don't like to talk about, especially with the severity of fatigue and pain. Anyway, a lot of these symptoms finally had been showing up at the same time, so I think it was easier for my PCP to refer me to a rheumatologist. I really thought I had RA or fibro when I realized I couldn't explain the constant pain and fatigue on IBS (especially once I got stable). I've learned that a lot of people with lupus also have GI problems and lactose intolerance! But it's not something that's used to diagnose lupus with - just overlapping syndromes.
I've just been reading up on lupus and wondering what the future will bring!
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No, you could never ask a stupid question!!! Actually, I've been reading up on lupus and am learning that A LOT of lupus suffers also have overlapping syndromes - including IBS and other digestive problems.
Right now I'm not sure about boards. I really love these boards and I feel that my IBS is probably separate from lupus, so I can use the continued support here. I'll probably end up doing both - depending on my energy levels. I might take a break for a while...
Thank you for your support!
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It's good to hear that your friend is doing well and still working. I love my library job, but before I knew what was wrong I really thought I would have to quit at the end of this month. Now that I have some answers, I have a lot of hope that I can continue working.
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Quote:
I'm glad you found answers, but I'm sorry for the answers you found! Hope your eyes and kidneys check out OK and that the Plaquenil helps you feel better! If you're nervous about having problems when you start it, try to make sure you start it when you've got a couple days off work, just in case (I always started new meds Friday afternoon/evening). Yep, I'm already planning on taking some time off when I start the new med. I'd like to have at least five straight days to test it out - and be at home, near my lovely bathroom.
I'll be thinking of you. I hope everything goes well. Thanks, Jen! 
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That was great information to have, especially the section on coping and living with lupus. It'll be helpful while I'm waiting for the Plaquenil to start working.
Thanks for your support, Tina!
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Re: Beth
#254459 - 03/25/06 08:00 PM
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lalala
Reged: 02/14/05
Posts: 2634
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Beth, thanks so much for your prayers and support. It means a lot! You know, I think about you a lot and I hope you'll get some definitive answers and treatment for what you've been dealing with. Have you been checked for any autoimmune disorders?
Here's some info about lupus if you want to know more: Lupus Fact Sheet .
From what I've read and heard (just in these past two days), it seems like a lot of lupus sufferers lead great lives. I'm excited to think that I might really get my life back - and my vitality!
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