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flyaway
02-17-2008, 12:14 AM
Hi everyone, I had just diagnosed lupus 3 months ago. I was doing researching, surfing and then across to site. I wish to share my thoughts with others. Beside that, i hope to get some information or experience from here.. :)

rob
02-17-2008, 09:13 AM
I'm quite new here myself, but I've already been given some excellent advice, and have talked to some great people. This last week is the first time I've talked to anyone about some of the emotional aspects of my life, and what has happened since I was diagnosed in 2004. This is a great place to come to when you need a sympathetic ear. Welcome!

Rob

hatlady
02-17-2008, 04:03 PM
Welcome!

I've been around here for a while - this is a supportive community - lots of knowledge, friendship, laughter, prayers, and sometime tears. I hope both of you will become "regulars"!

Saysusie
02-17-2008, 04:03 PM
Hi Flyaway :lol:
Welcome to our family here. I am glad that you decided to join us. This is a place where you can be sure that you will never be judged, someone is always available to listen to you, everyone is more than willing to answer your questions, provide information, give you support and let you know that you are not alone!
You are very new to Lupus, so I am sure that you have lots of questions. Please feel free to ask us anything, we are here to help you in any way that we can.

Peace and Blessings
Saysusie

flyaway
02-17-2008, 06:19 PM
Wow.. .Thanks everyone... Yea.. I'm really very new to Lupus.. I am sure will be 'regular' here.. :)

mariet
02-18-2008, 10:26 AM
Hi Everyone,
I'm new to this site and lupus. I have been having joint and muscle pain and fatigue for a year and a half. I've been to all kinds of doctors. They didn't know what was wrong. Finally I went to rheumatologist. After an exam and a consult she diagnosed me with fibromyalgia. She also took a bunch of tests. When I went back the following week for the results, she said I had mild lupus and secondary fibromyalgia.
I've been looking at the blood test and my ANA is only slightly positive and the dsDNA is a 15, with 10 the starting point of positive. The blood test seem so low I'm hoping she is accurate with her diagnosis. She gave me Lyrica and Plaquenil. I really don't want to take unecessary drugs. She's a board certifies rheumatologist whom as delt with many lupie and Fibro patients. I think I'm having a real hard time accepting the diadnosis. I just can't belieive it. But then again I only found out six days ago. Anyway thanks for listening to me, and I hope to become an active member. Thanks, Marie

Saysusie
02-18-2008, 11:57 AM
Hi Mariet;
Welcome to our family. I know how hard it is to accept the diagnosis of a chronic disease like Lupus. Then, to have to accept a diagnosis of a co-existing condition (also chronic) like Fibromyalgia. Like you, I currently have mild Lupus with secondary Fibromyalgia (I had severe, acute Lupus years ago, but with treatment and lifestyle changes, I've been downgraded to mild Lupus and have remained there for years!).
Do not think of this as an end to anything. You will have to be very conscientious about your health now; making appropriate changes, avoiding things that can cause flares, taking your medication as ordered, keeping all doctor's appointment, getting regular exercise and eating healthy. If you make a concerted effort doing these things now, you can possibly maintain your status of mild Lupus and live a reasonably normal life.
Your doctor was correct in prescribing your current treatments. With mild Lupus, these treatments will, hopefully, keep you Lupus from becoming severe, will hopefully stave off any damage to your internal organs by preventing damaging inflammation (the primary symptom of Lupus) to those organs, to your muscles and to your body tissues. You are not taking any uneccessary medication, you are taking medication to prevent further damage and that is very important.
You may, at times, find it difficult to distinguish the pain of Fibromyalgia from the pain of Lupus. The symptoms of the two are quite similar, the primary difference is that Lupus is a disease and Fibromyalgia is a disorder. Both conditions present with chronic widespread pain, mostly in the muscles and joints. Lupus can cause pain in every area of your body due to inflammation (I mean, every where!). Both conditions present with debilitating fatigue and sleep distrubances. However, Fibromyalgia patients also suffer from functional bowel disturbances. Both condtions present with a variety of neuropsychiatric problems including cognitive dysfunction, anxiety and depressive symptoms.
Because of these overlapping symptoms, I have stopped trying to figure out which one is which. I and my rheumy just treat the symptoms, especially since treatment modalities are essentially the same for both.
In any case, we are here to help you in any way that we can, to answer your questions, provide information, give you support, comfort and understanding and to let you know that you are not alone.

Peace and Blessings
Saysusie