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Avatar universal

symptoms of Lupus

I was diagnosed with SLE a year and a half ago. I have a lot of med. challenges but never seem to be able to relate it directly to the Lupus, therefore i don't ever go to the doctor anymore for it. Lately i have had my first obvious symptoms like blisters in the nose, mouth, rash on face. But the past few months i have been waking up feeling like i have gotten run over by a bus (no changes in med's or anything that i know of. Until i take my med's i am in so much pain...back pain esp. Anyhow, my gastroenterologist said that that specifically sounds like the Lupus. I have had an elevated CEA (9) and a lot of gastro problems (pain, bloating, nausea) also a solid cyst in my adnexal area, so they think it may be a mucinous tumor, but either way we are addressing that but i wonder if all this gastro stuff might be due to the Lupus not the mass? I seem to not be convinced i have Lupus, but everytime they test me i come out positive. I don't like the med's they put me on and i didn't return to the doctor. I just don't know how to take it seriuosly when it is such a vague difficulty. Thanks if anyone can help.
11 Responses
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1590247 tn?1412004779
I too, have Lupus and was dxd in 1995.  However, it took several doctors and lots of tests, weird things happening to my body at different times. Too many to list. I also have the mouth and nose sores.  I was so frustrated but I do know that Lupus is a bizarre disease and will mask itself in many disguises.  I wake up every morning feeling like I also was hit by a bus. The more I move around the better, but as I have been getting older it is getting harder. Plus, I have gained weight due to not being able to be active and it makes it harder on my joints. Good luck and hang in there.
Helpful - 3
642304 tn?1242606724
MEDICAL PROFESSIONAL
Whenever patients complain that their physicians don't think that their signs/symptoms closely fit a diagnosis category or that they have an incoplete diagnosis for SLE or other autoimmune disorder, I immediately think of chronic infections.  The reason for this is that in our studies of SLE, RA, and other autoimmune diseases we have found that mutliple infections are present, especially in those patients who do not have "classical" signs and symptoms and lab test results.

Thus I suggest that you look into the possibility that your problems may be  due to one or more chronic infections.  These can result in all of the signs and symptoms that you list, with the possible exception of the elevation in CEA and the cyst.  More can be found on our website under Autoimmune Disease Research, Clinical Testing and Treatment Considerations www.immed.org

Prof. Garth Nicolson
Helpful - 3
1619541 tn?1298852500
I'm also experiacing those things aside from the rash.However its been confirmed for me that I have fibromyalgia....along with other nerve issues dur to my spine...I kno I had muscle aches,cramps,spasms,and my muscles knotting up..I've already had test done for muscle conditions(lupas being one),which came back neg.Saw my dr today and she told me that one test was not done and that was a blood test for muscle enzynes(hope I spelled that right)she said not saying that whats goin on with me now wont cause what I'm experiancing,but its important to rule this out...Anyways I would say get tested,simple blood testing will do it.  
Helpful - 2
1816063 tn?1317046025
A related discussion, Searching for answers... Auto Immune Disorder ;-( was started.
Helpful - 1
1634952 tn?1302240373
cook some oatmeal down, cool it, then apply it like u would lotion. I have Lupus & currently am being tested for FN1 & MS.
Helpful - 1
Avatar universal
I am 28 years old for first time in my life I have a sudden onset of itching all over my body. Arms legs belly chest and back. Saw dermatologist took prednisone for what we thought was allergic reaction . Itching didn't go away I am itching for almost a month now . I don't think its allergic reaction any longer. Went to md who put me on hydroxizine I hate it knocks me on my *** so drowsy from it. So I can't take it cause I need to work and function. Md did blood work and found positive ana 1:80 which is mild I hear . And in addition an elevated wbc. Mild elevated as well . Md thought I had urticaria and now says not to worry and refer me to allergist . I have shown blood results to other doctors who say why allergist go to a rheumatologist instead . I am stressed from this positive ana and can't stop thinking about possibility of lupus . Now I dnt have any family history or lupus and I dnt think I any other of the obvious symptoms of lupus . But I can't stop itching what should I do ?
Helpful - 1
Avatar universal
You once said it should get worse before it slowly gets better, but what do you exactly mean by that? Do you mean the heavy flu like symptoms from the Herxheimer reactions, or will also the autoimmune disease get worse (like my arthritis swelling up or my vasculitis bursting and bleeding) before it gets better?    
Helpful - 1
Avatar universal
Just curious...how can FM be CONFIRMED when there is no such test to my knowledge that can do so? nor is there a specific test for Lupus ?
Helpful - 1
1617666 tn?1298829374
I have questions...I am 30 yrs old and hurt bad in my hips and back.I hurt to stand too long in one spot,then I have lower spasms when I sit down.Sweeping or mopping also triggers it to where I feel as though my leggs will give out from under me.Fibromyalgia and lupas are both in my family and it worrys me.My husband can just rub my skin and it is highly sensitive.I have also had this dry red rash around my nose for years.Could it be lupas? Please help.
Helpful - 1
Avatar universal
I have has sle antiphspholipid and have had all these symyoms unlike yourselfs I have wonderful doctors at st Thomas hospital London who monitor my condition every 6 months. I don't think many gps have the understanding of lupus and you need specialist treatment. Keep tour chin up. As for the itching I have this but only comes on when I am going to sleep once I relax I get this nasty itching feeling all through my body the only way I can help it is to tense all my muscles and it passes in time but you can't get to sleep when this is happening no one seems to understand this or knows what it is drives me crazy
Helpful - 0
1619541 tn?1298852500
I'm also experiacing those things aside from the rash.However its been confirmed for me that I have fibromyalgia....along with other nerve issues dur to my spine...I kno I had muscle aches,cramps,spasms,and my muscles knotting up..I've already had test done for muscle conditions(lupas being one),which came back neg.Saw my dr today and she told me that one test was not done and that was a blood test for muscle enzynes(hope I spelled that right)she said not saying that whats goin on with me now wont cause what I'm experiancing,but its important to rule this out...Anyways I would say get tested,simple blood testing will do it.  
Helpful - 0

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