Wondering........is it Lupus?

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Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/19/2011 8:12 PM (GMT -6)   
I have Diabetes, COPD, some sort of Tachycardia, Sleep Apnea and Fibromyalgia. (I'm sure I have Fibro as my sleep study showed "alpha wave intrusions") and other things I have forgotten about.
So I am used to being tired and have learned to pace myself. That has gotten me thru before. Somewhere around December I started feeling VERY tired. More tired than usual. Some days I would lay on the floor awhile before I could make it to my bedroom around the corner.These I called exhaustion. I went to the Doc and at the time I had a sinus infection and bronchitis. In between then and now I have had 3 sinus/bronchitis infections. Sometime, maybe January I started getting what I thought was a "niacin flush". My cheeks would get all hot and red. In the AM it would be gone. I stopped taking my niacin. Every evening the "flush" would return. Across my cheeks and over my nose and on the left forehead. Then it started spreading. My cheeks, ears and then further down to where it would go to my legs. My legs itched real bad for two days and had a rash (later think it is like petechiae) which to this day the spots remain. Just have turned color.
March was a very busy month. I had to push myself more than I should have. My heart rate went up to 174 and wouldn't go down. I was in the hospital for a few days and had a heart ablation on April 11. Meanwhile I still feel horrid. Dizzy, nausea, sweats, shortness of breath, chest pains, tachycardia and that weird evening "flush" just about every evening. At least now it is back to just on the cheeks. Another rash appears now on other parts of my body. Back of neck, stomach. Round red spots, smaller than a dime. The next day they are there but just like a scar. Not red. Now, my hair is falling out and looks like what they call lupus hair. (Oh also when I was real bad no appetite. Threw up a few times in the AM.) Now I've started headaches. Would wake up with them. Have ear pain off and on but docs only see wax. I went to the Doc again to beg and plead to check me for lupus but by the time my appointment arrived I had shingles! He wanted to hop on that right away and sent me straight to an eye doc which said that so far the eye looks fine! So I go back next week.....

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 8/20/2011 10:47 AM (GMT -6)   
I don't have lupus, but I have some of the stuff you listed. Especially the facial redness and flushed, warm feeling.  I work nights under flourescent lighting and the next morning, I have the headache, and flu like feeling, almost as if I have been hit by a truck.....and sore beyond words! I currently have RA, so I don't know if it is my meds and I am just over doing it or what! My hair also comes out in the shower, quite a bit of it, and it has done this before I was diagnosed with RA, and I too had the worst sinus infection ever in 2005, so much so I required sinus surgery.  I know you mention round red dots, I get these and it is called purpura (sp?) I have them on my hands, and they usually increase after I take my Methotrexate. I don't know if this is what yours are, but they look like small little spots on the skin, very tiny. I am sure someone with Lupus and much more expertise will come along to help you.

Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/20/2011 9:00 PM (GMT -6)   
Thank you for replying. That is the thing that really has me wondering, the red, warm face in the evenings and gone in the morning. It actually hurts. This has me mystified. I also can barely walk in the AM but it straightens out in and an or two and acts up if I have been sitting for a while. I do have "bumps" on my thumbs. I just looked at them and they are larger than they usually are. I guess I have 3 kinds of rashes. The warm red flushed face in the evening. I don't think I would call it a rash. Then the ones on my legs that looked like someone took a pin and poked me a million times, bringing blood to the surface but not bleeding. I do have vascular insufficiency in my legs so thought maybe it was related to that. Then there are the ones that almost remind me of ringworm and are not red the next day but takes a long time to disappear. Maybe I could have RA and Lupus. Would be just my luck. (I think there are people on here that do.) Sinus problems run in the family and no one has been able to figure out a solution. I have some Cat Scans in my possession now of the sinus's and see the ENT on Friday.
I think I have read some of your posts and think it would be very difficult to care for 3 children while we feel the way we do. I am lucky in that I am older and my children are grown and I have taught my Hubby to fend for himself. And he is very understanding. Like I said in one post he gets mad if he thinks I am overdoing. Looks like the shingles has progressed to my eyelid. The eye doc gave me his cell number incase I need him this weekend. Meanwhile I will see if I can get some tests done for RA and Lupus. (Do you know if Rheumatic Fever has anything to do with RA? I didn't have it but my brother did and my Dads brother did. My Dads brother died at 7 and my brother at 44)

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/21/2011 12:55 AM (GMT -6)   
Yes, the little pin pricks are exactly how to describe those, and I am not really sure what causes mine.  I hope you do not need sinus surgery, it is most unpleasant! I have managed the RA okay but there have been times that I wish I could do more with my family.  I work under flourescent lighting and several of my co-workers have commented on my face.  I just chalked it up to being tired, however tonight on my way out, I stopped in the restroom and took a good look at my face and the rash was over my cheeks/nose so it essentially resembled the butterfly rash that everyone talks about.  I am hoping it could be something else.  This morning when I woke up I just felt terrible, so I will see if the pattern repeats itself tomorrow. If you can, you may want to take pictures of your facial changes, that way you can document it to your doctor.  Sometimes it can be difficult to explain.

Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/21/2011 1:59 AM (GMT -6)   
It really sounds like you have Lupus too. And I feel terrible when I get the butterfly rash too. The redder the face the worse I feel. But is always gone the next AM. (But I feel terrible all day The lower legs pinprick rash happened when I had a real bad spell of the red flush all over my body. Would start on the cheeks/nose and then go down to my legs. The spots remain 6 months later but looks like freckles now. This is what I read about the leg rash:
"The pin prick skin rash is small haemorrhages or bleeding from smallest blood vessels called capillaries." I've asked several Docs and they shrug their shoulders.
I do have a picture of my butterfly rash but it is hard to tell. LOL I need natural light and it always happens in the evening.
I heard when they do an ANA test to spend some time in the sun before. The sun aggravates Lupus. I live in AZ and love to spend time in the sun. That was why we moved here. I haven't done it lately though.
Tomorrow back to the eye doc. He gave me his cell number in case a shingles bump appears on my eyelid which it did tonight. Really getting tired of this!

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/21/2011 11:16 AM (GMT -6)   
Yes, I only have a few of those tiny little spots on my hands, more the day after I take the Methotrexate..I read it can be caused by certain medications, do you think it could be one of your meds? Shingles sounds terribly painful! I remember at one point seeing advertisements for the vaccine at our local pharmacies and told my mother in law...she never did get one, so I hope she never ends up with shingles! That is the one thing I have not had (yet) is chicken pox, and my daughter has not had them either and she is going on 15. Both my boys had them when they were little, however we never ended up with them for whatever reason.

I checked my face this morning and the rash is gone...of course I feel like I have been hit by a truck, but no rash! I am on a low dose of prednisone and have been wanting to go off of it , but I cannot function without the 5mg per day it seems. As far as your pictures, I think even a faint rash would give the doctor some idea at least?! It does get old, I agree! All of the different symptoms.

Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/21/2011 9:57 PM (GMT -6)   
Yes, I had been put on a new heart medicine and been on it about 2 weeks. One Doc had said it looked like a drug rash. So I stopped the medicine. That rash hasn't come back but it sure looks like I have a lot of freckles on my legs. LOL It was (is) a bad day today. I had the dizziness, nausea and tachycardia. I actually threw up today. Just don't know. I'm now looking up flushing as what appears on my face is probably more like flushing. I just got up to check my email and will go lay back down for a while.

Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 9/2/2011 2:00 AM (GMT -6)   
Just an update. The sinus CT turned out ok. I had some blood work done. I asked for them to do an ANA. That was negative. I had the thyroid rechecked. The T4's and T3's and TSH and such. Everything fine there. Meanwhile I still have the tachycardia. The rash on my chest is spreading more. It looks like coins with raised red borders and clear on the inside. May itch a little when it first appears but that is all. The glands seem swollen but the last two Docs I asked about it didn't even feel them. Not really sure where I am going from here. I'm going to get a different endocrinologist for my diabetes. Not sure what I will ask them or tell them. Have another heart appointment september 20. Shrugs shoulders. Meanwhile I still don't feel well. My shingles are over with though. That is good!
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