Anyone with Lupus please share what it does to you, if it makes you tired all the time, rashes, if you swell in your joints, muscle pain, kidney problems, inflammation elsewhere, any other symptoms, I'm especially curious about mouth sores.
I don't know if I could have this or not but my rhematologist diagnosed me years ago in the early stages of it. I have had nothing wrong with my kidneys except past stones. I do not swell in my joints. However do have severe fatigue, muscle pain, & mouth sores. I also have a red rash on the upper part of my chest but nothing distinctive on my face. I have been positive on my ANA's, 1:320 homogenous pattern, this is when my rhematologist said I was in the early stages of Lupus, I retested recently and it just said I was positive. I had no antigens before that I was positive with. And I never really believed I had Lupus. Should I?? I keep getting recurring outbreaks of fever blisters on my lip or the side of it about every 6 weeks and getting exhausting fatigue from it. It was not HSV-1 and I'm thinking maybe it is Lupus but I don't know. I have inflammation issues with my bladder, vagina, stomach, and esophagus. I have multible tumors in my liver (no idea if cancerous or not). There's nothing else wrong. Blood pressure is usually always good. No renal disease.
Neveragain, symptoms can vary widely among patients. Probably no two are alike. That said, I had pain along the long bones (shins & arms) in my early teens; many years later, joint pain as well. Bizarre (overlong) periods lasting weeks. Fatigue. Nasty GI episodes for more than 20 years. Hair loss. Urinary frequency and burning (plus occasional stones). Migraines. Neuro-like tingling. My rashes appeard dead last, weirdly. They were nonscarring targetlike lesions on upper arms & back. Just for those, I saw many skin specialists, who were pretty clueless! The rash was finally diagnosed as SCLE = subacute cutaneous lupus erythematosus, annular (ringlike) form.
FYI, there are quite a few lupus rashes. Rashes can be quite useful, in the sense that they can add an important piece to a Dx. The butterfly facial rash (a/k/a/ malar) is probably the best-known, but there are many more! "Discoid" lesions which scar &/or depigment. "Tumid" (I think) often affects upper chest, dense & deep in color (at least in the pics I've seen). SCLE papulosquamous form looks like psoriasis but isn't. ETC.!
Kidney problems in lupus are "silent", I believe.
Have you seen the "sticky posts" (permanent info posts) at the top of the thread list? They have useful info on symptoms, tests, diagnostic criteria, and reading material. That's where I'd start, if I were you, then your local library. Also, you could see a dermatologist for your chest rash, if you've never had it looked at. Hope you post more soon, best wishes, Vee
I used to get these places around my hairline and eyebrows that looked like psloriasis (that runs in my family too), but I don't get it anymore. I also had a while back what looked like a butterfly rash on my face, only lasted under a week, I did not go to the doctor over it. The last breakout on my lip, left a scar. I get mouth sores under my tounge and on the roof of my mouth. I have tingling sensations all over and my skin stays itchy. Once in a blue moon I break out with hives.
Thanks, yes I will do that (read, read, & read). Thank you.
Last edited by neveragain444; 03-27-2010 at 07:15 PM.
They were nonscarring targetlike lesions on upper arms & back. Just for those, I saw many skin specialists, who were pretty clueless! The rash was finally diagnosed as SCLE = subacute cutaneous lupus erythematosus, annular (ringlike) form.
Sorry for hi-jacking your thread neveragain444 but VeeJ, would you mind describing these lesions a bit more please. I have something like you describe and the doctors don't seem to know what is it. I saw a derm who brushed it off and wasn't very helpful. Thank you please.
PRINCESS, for 4 years, I had red raised papules (bumps) that looked like mosquito bites but weren't (didn't itch or hurt), on upper arms & back. Every 3 months, they'd appear, stay some weeks, then fade. Then all over again. During that time, the health issues I'd had for decades worsened.
Then the same papules appeared but expanded! At first they were perfect rings. As they aged, they'd spread outward more, losing their perfect circularity. Still didn't itch or burn, and no scarring or depigmenting. By this time, overall I felt even worse.
I saw many dermatologists who had all sorts of theories (nerves, get rid of doggie, etc.) I tried various steroid creams. I had two deep-punch biopsies but no one ventured a Dx. Finally [duh!] I correlated the ever-worsening rashes with sun. By this point, I was getting new lesions much more often, sometimes weekly. And I felt really lousy by this point....
Told my GP (an endocrinologist) I suspected sun, and his eyes widened but he said nothing. He sent me to new urologist and gastroentrologist (a long line of those, too!). Another dermatologist. Finally to a rheumatologist. Still nothing. Then another dr. blurted that lupus was the a possibility. I did some reading & saw only ONE lupus rash as possible (I'd never had the malar or any scarring "discoids".)
Frustrated, I saw a metro rheumatologist. He did new tests & also sent me to a dermatopathologist. This specialist did another deep-punch biopsy. He also sent for my old skin samples and retested them with immunofluorescent stain tests. Less than a month later, etween these two specialists, a Dx: Lupus, positive for anti-Ro but negative for ANA (very uncommon). Rash was "subacute cutaneous lupus erythematosus, annular form".
I must avoid sun religiously & take Plaquenil. Still have pain & fatigue. BUT rashes, GI misery, migraines, hair loss, urinary problems, fevers, weight loss, neuro-like tingling, etc. abated very quickly. I hope this helps some! Post more when you can, OK? Warm wishes, Vee
NEVERAGAIN, does the rash that resembles psoriasis itch? I'm asking because there's a second kind of SCLE rash called SCLE psoriasiform (or papulosquamous, same thing), and it looks like psoriasis---but isn't.
Some people get multiple kinds of lupus rashes. After many years of SCLE (nonscarring), I got one doozie of a "discoid" (scarring), on my face, natch!
Your mouth sores sound interesting (well, you know what I mean!). You may have noticed that one of the 11 diagnostic criteria is "oral ulcerations", defined as recurrent sores in mouth &/or nose. I'm not saying that's what yours are (I just a patient), only that this may be worth discussing w/dr. (or again, if you have already!).
And I've read about "lupus urticaria" (hives). How (or IF) lupus hives may be distinguished from run-of-the-mill hives, I have no idea (sorry).
Does your rheumatologist schedule you for regular follow-ups? Do you get copies of your bloodwork, to see what more *specific* tests he's running? ANA is pretty "general" and may be positive in a variety of conditions, is why I wondered that... Hope you post more soon. Bye & best wishes, Vee
I have had what looks like psoriasis in the past, itchy and goes raw when scratched
I have also had problems with hives since a child. Doesn't occur much but it's definetly hives, raised patchy red spots
The sores that occur on my outer lip or at the corner of my lip are fever blisters, they look like blisters. They reminded me of pics online you look up that look like HSV-1 but of course it wasn't herpes. I guess it could be a form of a canker sore but those aren't supposed to occur on the outside of your mouth like that. I do get them on the inside of my mouth too. I don't get sores in my nose very often.
I just had another ANA done (paid myself for it) and it showed high RNP antibodies - normal range is 0.0 - 0.9 and my results are 7.3 high. It said positive for ANA direct but it didn't give me the titer. I ordered the test online because I wanted to check for lupus as sick as I am. I do have a diagnosis of fibromyalgia but I just believe this is something more. My problems are pretty extreme. My PCP doesn't run these type of tests on me.
well im 17 and was diagnosed with lupus when i was 8 and personally i am in constant pain almost all over i have the swelling in my joints, i have butterfly rashes on the back side of both my biceps, im always fatigued and have the muscle pain sometimes i dont even want to get out of bed in the morning it hurts so bad but if it is what you have you cant let it stop you, it may effect your life in some ways but you cant let it ruin your life, you are not gunna wanna regret it later in life somethings you didnt want to try cause you thought it might hurt you live life to the fullest laying aroung and letting it control you will do nothing, fight it.
this probobly didnt help but i hope it helps alittle
It's tough to fight extreme exhaustion. I can't win that fight. Maybe if I can get treated with medication, it'll help me function better. I get out about once or twice a month with my daughter and we do something together, that's about it.
Your not much older than her. I'm sorry your dealing with lupus, I thought it was bad because this hit me at 26. I couldn't imagine having to deal with that type of illness most of my life.
yea i understand its hard, it will always be hard in some ways but you just gotta push. i hope all goes well with you and it gets better for you down the road i would never want anyone to go threw what ive been threw, i just hope it gets better for you.