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grizzlyrose · 03-04-2009, 07:08 AM

I'm curious about lupus and what are the daily syptoms, do you always have fevers,widespread pain and does it affect diffferent areas of your body daily, are they mild to moderate on a daily basis, do you have to have a rash in order to have lupus, can if affect the back of you head (dull pressure) stiff neck and shoulders, mid back and rib area, (pressure) lower back and hip area, also left thigh and knee pain, bottom of both feet pain, hands, wrists and elbows pain. In addtion, all the bloodwork coming back negative. Any feedback would be apperciated. Thanks.

kimmy46 · 03-04-2009, 12:52 PM

Hi grizzlyrose, You seem to have alot going on with you. Lupus does affect alot of your joints and it could also affect many of your internal organs,(lungs, liver,kidneys,etc.) My tests also came back negative but now my organs are showing symptoms. Unfortunately, it takes a long time to diagnose lupus. Hang in there, kimmy46

watoozie · 03-04-2009, 07:19 PM

Grizzlyrose - Gee all those symptoms sound familiar!!! I tested positive, I have Lupus and Sjogrens. I have been on 400Mg of Plaquenil for almost 4 years. I still have flare ups, but now that I know what is wrong with me I get through them and not wonder - WHAT IS WRONG WITH ME!!! My doctors ignored me for so long, I was really bad by the time they diagnosed me. I had to have a round of Prednisone this year and some B12 shots, but all in all I feel pretty good right now. Tonight my shoulders and ribs and my right hip is hurting, but I try not to think about it. Some of the pain you just learn to live with, I guess. Hang in there, I hope you get some answers soon and some help with your pain.

Angel MJ · 04-05-2009, 04:10 PM

my 'lupus'
(***warning*** this is a long one)

each day is different ... it all depends ...
how much sleep did i get? did i sleep well? is this fatigue again? then sleep doesn't matter ... i can't get enough!
if i have a migraine i grab an ice pack for my head and literally numb my brain
if i have nausea i turn to herbal remedies ... or hello white throne
i am allergic to milk and crave all things dairy when the monthly hormone imbalance strikes, sometimes the depression sneaks a visit too
if today my fingers hurt they might not tomorrow or they might be worse ... but it can be a wrist & thumb & then fingers on the other hand ... it can change thru the day or persist over a week. when i need to, i see my GP to get me thru the flares ... MEDS short courses of prednisone etc.
I am seeing my rheumatologist less frequently now as i know that i am going their for a perscription and the meds mess with me

my worst is all the referals they send you on ... i am not on medical aid and each speacialist has specailist prices, each perscription comes with a 'Do not substitute for generics' stamp
gp
specialist
rheumatologist
ent
psychiatrist
gynaecologist
dermotologist (my husband has discoid)
dietician (their instructions are worse than the perscriptions)
lab fees for bloodworks

I have had some nasty episodes with hospital stays & emergency room visits
1996 i Lost feeling in 3 finger tips, they turned black ... nearly lost them, they put me on warfarin. SLE undiagnosed
2003 Pericarditis (heart issue) OUCH ... was initially diagnosed as glandular fever ...
2006 viral infection in my ear (a friend had had chicken pox) still have some hearing loss
oh i have had umpteen cases of so called tendinitis, gout, infections, hyperchondria etc but turned out SLE
Had the balloning from prednisone/cortisone fortunately don't take it long term ...
BUT
some days it doesn't matter because the bird's that come bath outside my bedroom window keep coming back & one of my dogs did something so adorable ... and i forget everything else.
I am working on growing organic vegetables and exercising (need to quit smoking) and generally have a positive outlook, life has it moments of absolute splendour that makes the journey worth the while

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