Could this be lupus??? Please help.

[kmich888]

My story is a long one but I will try to condense it I am a 36 yr old female. I am overweight, but am very active. I work and care for my 3 children and I walk at least 1 mile everyday. About 6 years ago I got a rash one evening after being in the sun most of the day. This rash was only on areas exposed to the sun. Very itchy. I thought I had an allergic reaction to something I ate or a soap I used. NOT SO. This rash continued to happen with every sun exposure, then I began having joint pain and swelling in my hands and wrists. I got so bad some times that I literally could not use my hands. This went on for at least a year before I broke down and went to the dr. for it. (it had lessened during winter months) My dr. immediately did blood work for ANA and sed rate but it all came back normal. The thing that made him suspect autoimmune was this "butterfly" shaped rash across my nose and cheeks along with my other symptoms. He went ahead and put me on prednisone and I improved. But eventually the symptoms recurred and worsened. I began having chills and fever and a strange nagging ache in my back on the right side. Over the next year or so it progressed to full fledge pain and I was hospitalized. They suspected kidney stones, but it was not. Eventually they did find that the right ureter to my kidney was dying and that it had blocked off. Had many surgeries the last in 2005 to correct this and it seemed successful for about 10 months. No kidney pain but still the other symptoms. Then in 2006 it all began again and now my left kidney is affected. I am going to a different rhuematologist next week and have been looking for answers for about 6 years now. Please respond if you can offer advice or information in any way.

Thanks,

Kaylene

[Shula]

Hi Kaylene,

Yes, it does have a Lupus sound to it. Right down to the kidney trouble. I am glad you are going to another rheumatologist, since you haven't been diagnosed yet.

Generally, lupus comes in episodes where things get worse for a while, but also, there are times when things aren't all flared up. My understanding (limited to what I learned when my mother-in-law was still living, and she had lupus) is that going on prednisone is good for the times when you have a flair up, but shouldn't be used in an ongoing basis. Steroidal anti-inflammatories are powerful medicine, and can be very helpful, but they are also seriously hard on your body.

I heartily suggest that you find a lupus group near you through this website: http://www.lupus.org/chapters/locator.asp. Whether you have it or not, they will be your best source of information. Maybe it will turn out that you have some lupus-related kind of thing, that is slightly different, and that is why it has been so hard to diagnose. But your symptoms are so much like lupus, that even it the doctors can't label it "lupus" definitively, it would still help to have other people who go through this sort of thing, to talk to and get advice from.

Please do post back and let me know if you find out anything more.

Best,
Shula

[mommy cat]

honey, lupus is often confused with ME Myalgic Encephalomyelitis...go to www.ahummingbirdsguide.com look at symptoms page...write down as many as you have, print article and take it to Dr. if you have a significant number of listed sx

[Shula]

Hi mommy cat,

I've just read through the M.E. website, and I seriously do not see how lupus and M.E. could be confused. Particularly the set of symptoms this woman has posted.

Meanwhile, it seems to me you are posting something about this website on so many threads...what is the story with that?

Best,
Shula

[mommy cat]

joint pain, swelling, butterfly rash you can't see how these are confused?? ME is caused from a virus. There have been 60 outbreaks since 1934. There was a huge outbreak in the 80's It's kind of coincidental that there are so many people on this site with ME sx yet not one, including myself can get or could get a diagnosis. People are seeing allergists, rheumatologists, endocrinologists, GI specialists ect...this disease affects several body systems. Perhaps you did not read the full list of symptoms. This woman's are all there. I believe this to be of epidemic proportions. Kinda strange, so many people, same sx, no diagnosis?? you tell me...There are so many people with sx and yet several are referred to psychiatrists...Wouldn't it be great if we were all just crazy??????????????????????

[mommy cat]

Shula...my story 4 years ago I started with flushing of upper body, Dr. blew it off as perimenopause. I went back, it got worse...blew me off again. 3rd time I demanded I see a specialist. Went to endocrinologist diagnosed with Carcinoid Syndrome Went to Roswell in Buffalo NY...No carcinoid. another endo..gi specialist meantime I'm having cramps, diarrhea, flushing, vomiting, vertigo, tinnitus, stroke-like sx, muscle and joint pain and weakness, night sweats, nightmares ect... A few days ago I decided I would google symptom checkers I entered diarrhea, flushing, night sweats, nightmares...I found the ME site. When I read the list of sx I was so excited that I had found a disease that had all of my sx...I thought after a while that maybe they were right...maybe I was crazy. Please forgive my feverence in this matter but like I said...so many people, same sx???? kinda' scary I've been a nurse for 15 years and healthy as a horse until 2-3 yrs ago when I began to get ill and catch everything that came down the pike...Also, healthcare workers, teachers ect are more susceptable.Hope this clears up what appears to be my madness on the issue...mommy cat

[Jean Marie]

Have you been checked for Lyme Disease? It's just a thought. I've heard it can be hard to diagnose and I know rash, joint pain, & swelling are symptoms. It might be a stretch but worth at least checking into if you are having trouble finding answers.

[Jean Marie]

I

joint pain, swelling, butterfly rash you can't see how these are confused?? ME is caused from a virus. There have been 60 outbreaks since 1934. There was a huge outbreak in the 80's It's kind of coincidental that there are so many people on this site with ME sx yet not one, including myself can get or could get a diagnosis. People are seeing allergists, rheumatologists, endocrinologists, GI specialists ect...this disease affects several body systems. Perhaps you did not read the full list of symptoms. This woman's are all there. I believe this to be of epidemic proportions. Kinda strange, so many people, same sx, no diagnosis?? you tell me...There are so many people with sx and yet several are referred to psychiatrists...Wouldn't it be great if we were all just crazy??????????????????????

I completely understand your "madness" on this issue (read your second post, too ). I also have been sick for a long while and can't get a diagnosis...in fact, you posted on my thread. I did go to the site you referenced. Here's the problem I have with it (and I mean no disrespect) - but honestly, it has almost every possible symptom of any disease or condition I've ever heard of. So it seems to follow that almost anyone who is having multiple symptoms is going to find something there. I'm not saying it's not possible ME could be the problem for many - I'm just a little skeptic. I have to admit I didn't get to the part about how ME is diagnosed. Is it a "clinical" diagnosis (hate those) - or is there a specific test? I'll have to go back and look. Now that I understand why you are posting on so many threads, I think it's really quite wonderful that you have taken the time inform people after discovering something you believe might help.

[Shula]

mommy cat,

I keep seeing "extreme pallor" for M.E. and she doesn't mention this at all. Also, M.E. has obvious problems with physical activity and exhaustion, but this person says she is "very active."

So while it is true that M.E. (according to the website) can be confused with lupus, I don't see it here.

Shula

[mommy cat]

Shula, a person does not have to have every sx on list to have the disease...if you read sx list you would have seen agitated exhaustion (tired BUT wired) I know, I live it every day...I know the odds of so many people having the same thing are low, but the odds of so many complaining of ME sx is just a little too coincidental for my taste...I could never figure out how excessive gas and sneezing could be part of the same disease process but for the past year, I experience it every day, sometimes several times a day...I said to my fiancee that they had to be related somehow to my sicknees but could never figure out how...until now...Be well Shula and best of luck to you...mommy cat