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New Member

Date Joined Jul 2015
Total Posts : 2
   Posted 7/31/2015 9:03 PM (GMT -6)   
Hi I've been all over the Internet and found this forum and I'm looking for some help. My primary doctor ordered an ANA test in February after I complained about painful joints in my fingers. I was surprised when he said he wanted to rule out lupus. I had The test and my ANA came back positive 132 homogeneous. Doctor said he was pretty sure I had lupus and referred me to a rheumatologist. The next month I came back in because I had hives all over my head, face and body, swollen feet ankles face and body with the red flushed cheeks and red down my nose. I also had a lot of little ulcers in my mouth in the lining of my cheeks and in my lower lip. My knee joints were hurting my elbow were hurting and I had headaches and was generally not feeling well. What was really scary was how swollen my feet were. I had been outside that weekend. My primary at that point said he was pretty sure I had lupus. I got into see the rheumatologist who ordered 23 labs, urine MRI of my brain, EEG, x-rays of my knees, chest and spine. Rheumy said he was starting with a diagnosis of fibromyalgia after he did the pressure point test and I hurt. I had never even considered fibromyalgia much less lupus. I started to read about lupus and the symptoms and I could identify with them. I have been dealing with the swelling, flushed face, headaches, nausea, joints pain for about four years but in reality have probably had the symptoms for 20/25 years but they wouldn't all show up at once. I've been going in and out of doctors offices with the symptoms but then they would quiet down and go away. 2 pregnancies ended in miscarriages and because I started late I didn't try anymore. Others have viewed me as being overly sensitive to my symptoms but they have truly been there it's hard to ignore the swelling, flushed face and all the fevers that would knock me down. My voice has become more and more horse through the years and raspy and I have brown spots on my cheeks that are very noticeable. Well the tests came back and my white blood cell count was high but it seems like everything else was within the norm. X-rays everything else. I called the rheumy today to see if I could come in sooner but my appointment isn't till September and his assistant reviewed the tests and said didn't have lupus because all my tests were negative, etc. During my first visit with the rheumy he placed me on a low dose 5 mg of prednisone and all my swelling has gone down and I actually feel a lot better. My question and frustration is that I don't know what's wrong with me. And even though I'm feeling better I am continuously tired I can't be in the sun because I react and if it wasn't for the prednisone I don't think I would be as well as I am right now. There are only four rheumatologists here in El Paso so getting a second opinion is difficult and I feel like I'm going to be back at square one. I would never have even thought of lupus up to about six months ago so it's not like I'm chasing this diagnosis. I always at one doctors or another and I feel like I'm going crazy because nothing shows up. The swelling is obvious, my feet become huge to the point that my skin has burst. Everything I read says this is a very difficult diagnosis to pinpoint does anyone have any suggestions. The one who has consistently seen me in and out is the primary. I would appreciate any feedback. I am 52.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 7/31/2015 10:57 PM (GMT -6)   
Oh I am so sorry you are going through this. And your description of the rheumy treatment is, sadly, spot on. My primary was absolutely positive I had lupus but wanted a rheumy to treat. Went to 4 different rheumys (from 1998-2002) and got the lovely fibromyalgia diagnosis. I had 7 of the 11 lupus indictors including an ana of 1:1280. Back to the primary each time. I was so frustrated I finally fell apart and just cried in her office. Thank goodness. My primary called a personal friend who is an infectious disease specialist. Not in my insurance but she agreed to see me anyway. She spent about 90 minutes with me, both doing an exam and going over all my tests. Said lupus and sent me to a 5th rheumatologist. Again, a thorough exam and he ran all my tests again. Diagnosed lupus. Finally. I have been treated since 2002 for lupus. But I had to go through 5 rheunys and out of my insurance plan to do it.

Sorry for the long post. Just wanted you to know that you are not alone and it is NOT "all in your head". Hang in there. Ask your primary to advocate for you.

And, I believe (but am not sure) that prednisone helps lupus but can make fibro worse. Which a good rheumy sees asa clue. Good Luck!
Take care, Fran

New Member

Date Joined Jul 2015
Total Posts : 2
   Posted 7/31/2015 11:34 PM (GMT -6)   
Thank you Fran. I have thought of going outside of El Paso because I'm not going to have a lot of options here. I set up a second opinion with another rheumy and I can't get in till January. Very frustrating.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 8/1/2015 8:53 AM (GMT -6)   
Because Lupus is often considered a diagnosis of exclusion, we are often treated long before we are diagnosed. Consequently, I consider treatment much more important than diagnosis.

The fact that you are responding to prednisone pretty much points to Lupus and rules out Fibro. Fibro historically does NOT respond to prednisone, while Lupus does.

Also I've never heard of Fibro reacting to the sun, but it is a typical response with Lupus.

You might want to check with and find the local chapter. Then talk with them and see what local rheumies are active on the local board -- these are the ones with more experience and interest in Lupus, and generally are better matches for us.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde
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