Butterfly Rash on face. Just FM? Or Lupus?

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LaLa_Lavender
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/16/2011 3:21 AM (GMT -6)   
Hi all. I just got an FM diagnosis. Believe it or not I have never been happier since getting my FM diagnosis. For once something makes sense. I now understand some of the reasons I've been having food sensitivities and aches and other strange things.

My doctors don't seem to think I have lupus. Even the rheumatologist didnt think i did. I've had 2 negative Lupus tests. However, I know that I am photo sensitive, and when I sit in front of florescent lights I get sick. Right now I have a terrible headache from sitting in front of a florescent light. I also get butterfly looking rash sometimes.

Could FM alone cause this? Or are my doctors wrong about me not having Lupus? The red butterfly rash that comes and goes really concerns me and makes me think I'm dealing with something more then just FM.

I don't know what to think anymore.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 14977
   Posted 6/16/2011 5:28 AM (GMT -6)   
Hi, Lala, and welcome!  I'm so glad you found us and joined in!  You can have a mild butterfly rash with fibro from what I understand.  I haven't had that symptom though.  Some can be sensitive to light, too.  People without fibro can be sensitive to fluorescent lighting.  That is also known to cause migraines, too.  I'm sure your doctor ran lots of tests to rule out other illnesses and it sounds like he ruled out lupus, too, so that's good. 
 
Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Check out the links called Symptoms and also A Thorough Explanation of Fibromyalgia.  These are good starting points for you.  The Symptoms link will show you many of the strange things you can have with fibro.  Thank goodness we don't get all of these things!
 
I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you.
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Myself 09
Veteran Member


Date Joined Dec 2009
Total Posts : 4000
   Posted 6/16/2011 8:32 AM (GMT -6)   
I am light -sensitive. I also have something called rosecea, which when I am stressed or do not use my face med-gel or face wash, I can get rash/dried areas. That, yes, sometimes appear like the butterfly rash.

With those two symptoms alone, plus two negatives on Lupus, I wouldn't worry.

luvskermit
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 6/16/2011 10:06 AM (GMT -6)   
I am being 'watched' by my rheumatologist because I had an ANA test with a 1:1280 positive result.  I had another test after that one, and it was back to normal.  She stated that it was too high to be a false positive, and that while it could be caused by a viral infection, it may also be one of the first signs that I had something auto-immune happening.  She did mention Lupus, but insisted that if I needed to worry, she would let me know.  I also had to do a return urine test because the first test was 'off'... she didn't elaborate. The second was fine.
 
The reason I had the testing was joint pain, sun sensitivity, sensitivity to cold and relentless fatigue, which hit me like a truck. By the time I got into a rheumy and had the second set of tests, I was already feeling better. I had four weeks though, where I was scared of what was happening.
 
Since then, I have had muscle aches, an increase of pain, muscle weakness and other stuff that has lead her to the 'possible fibro' diagnosis. 
 
I would say not to get all stressed, unless you notice several symptoms that seem to be more than fibro.  I have had to make myself stop worrying about it, because my nerves couldn't take it.  If the dr. is saying no, I would take him at his word, and move forward... at least until something that indicates more pops up.  Worry, in itself, can make you sick.   Good luck!!

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/16/2011 10:51 AM (GMT -6)   
Hi LaLa, welcome to our fibro family. You have recieved some good advice...try to keep your stress level down.

The only advice I can give is to make sure you keep track of any new symptoms. If you get a rash, hive or small blisters...take a picture. Sometimes skin lesions heal before doctors appointment and having a picture is easier than trying to desribe it

Lupus like fibro is difficult to diagnose because of the common symptoms between the connective tissue diseases. You know your body better than anyone else so relay all your symptoms at your doc's visit...bring a list.

I'm gad you have joined us...post often :)

Hugs, Robin
Fibromyalgia, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 33644
   Posted 6/16/2011 11:05 AM (GMT -6)   
I was thinking rosecea too. I get a little on my face, and the dry dkin. Hope that it isn't anything serious.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

tara_
Regular Member


Date Joined Jun 2011
Total Posts : 133
   Posted 6/16/2011 6:33 PM (GMT -6)   
Hello LaLa_Lavender,

From my understanding, a small percentage of people with Lupus test negative on the blood test. Since you do seem to display some symptoms characteristic of Lupus, I would urge you to get your doctor to do a skin biopsy of your rash. You never know.

Best of luck!

Oh'dear
New Member


Date Joined Jun 2011
Total Posts : 10
   Posted 6/16/2011 11:16 PM (GMT -6)   
Your story sounds so much like mine!
I had all the symptoms of lupus, yet it wouldnt show in my blood tests.
My doctor kinda gave up after that, but my mum took me to see a dermal therapist, it turns out I have rosacea. I had 4 lots of IPL (lazor) and my face has improved by far!
If you haven't seen a dermal therapist maybe try it and see what they say. It's pretty amazing what they can tell you about what's under your skin.

Kara :)

ak angel
Veteran Member


Date Joined Apr 2011
Total Posts : 2892
   Posted 6/17/2011 1:06 AM (GMT -6)   
If you look at me and listen to my symptoms they are very similiar to lupus. I had test and one time some part of my ANA was abnormal. I flew out to a specialist in Seattle. Negative for lupus, but have the so called looking butterfly rash. Went to dermatologist and was diagnosed with melasma. Look it up on line. It caused by hormonal problem. The picture and brocedure he gave me looks just like my butterfly rash. So now I can tell myself that I don't have lupus. I hope you can find your answer!

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 6/17/2011 7:03 PM (GMT -6)   
Hi LaLa welcome to fibroWorld!!! aLhto it sounds like fibro, the muscle weakness and severity of fatigue may signal muscle tissue disorders too, also autoimmune disorders, related to RA, lupus, fibro etc. My neuro tested me for CPK, aldolase and creatine to rule out those myalgias, because I did not have enuf trigger points, very high muscle weakness and severity of fatigue. So, you might want to check that out. So here I am, after thinking I've had fibro for 7 years andit might be something else.

Alot of misdiagnosis goes on cause symptoms are so similar and they know so little about AI> Anyway, lots of wonderful peeps here, welaugh alot and we listen.Take care

Maggie

LaLa_Lavender
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/26/2011 9:39 PM (GMT -6)   
Thanks everyone! Its good to know I'm not alone, I will will take everything you've added into consideration.

Sorry for the late reply. I was distracted because I've been busy being a bridesmaid in 2 weddings happening in June and July and the brides have had me busy helping with things. That's actually part of the reason I was sitting in front of fluorescent lights so long and got the rash. I also realize now that I may have been reacting to the glue for the wedding favors I was making. Later I made my father a father's day card with the same glue and got a headache after that too just like I did after doing the crafts.

Here are some of my other symptoms:

-hair loss
-Worsening vision
(floaters, slight double vision, after images, occasional blurred vision)
-intolerance to many medications
-occasional all over fatigue
-stinging sensations (rare, not constant)
-headaches (usually following exposure to particular foods, chemicals)
-menstrual changes
-bladder issues or discomfort
-Trouble sleeping & insomnia (I'm in a bout right now)
-occasional shakes, jitters, and weakness
-occasional vertigo, trouble focusing (when i'm in a 'flare')
-food sensitivities


I recently got my lab blood work back from the rheumatologist, but I haven't opened it yet. I always have to work up the bravery because it makes me anxious getting test results back.

FM Sufferer
Regular Member


Date Joined Jun 2011
Total Posts : 66
   Posted 6/27/2011 12:35 PM (GMT -6)   
Hi Luvskermit: I went 2 a Rhuemy one time & had lab work done.I have copies of them but I have no idea what
they mean. I sent them to the doctor but I never heard one word back from her.would it b acceptable 4 me 2 post
what they said so someone could maybe explain them 2 me? Thanks!

bwfm
Regular Member


Date Joined Apr 2010
Total Posts : 412
   Posted 6/28/2011 3:40 PM (GMT -6)   
If you are worried about the rash, go to a dermatologist and ask him to do a face biopsy. My doctor thought off and on that I might have lupus for over 20 years because of positive,then negative,then positive ANAs (never high, though) and because of my face rash, but I finally got a biopsy and I do have rosacea. I also have ocular rosacea and have to use eye drops and now am also taking Omega 3 fish oil for it (the good liquid kind that tastes wonderful).

Good luck in finding out what's going on.

ak angel
Veteran Member


Date Joined Apr 2011
Total Posts : 2892
   Posted 6/28/2011 4:23 PM (GMT -6)   
Boy, I am going to write it down because I got a different dx. And mine is worse. Start new dr. Soon so maybe I will bring it up. Thanks. So much to learn.

jennygum
New Member


Date Joined Mar 2013
Total Posts : 3
   Posted 4/15/2013 9:01 AM (GMT -6)   
I know this was posted a long time ago but I am a newbie to this forum (and fibromyalgia) and was browsing this morning looking for help with this exact symptom! Before I went to bed last night I noticed some purplish-red splotches on my left cheek but didn't think much of it. Woke up this morning with a very attractive (kidding...) purplish-red rash, almost exactly symmetrical on both cheeks. It doesn't go across my nose and isn't raised or irritated. My rheumatologist "isn't 100% convinced" that I don't also have lupus but I am sure I don't (I have tested negative twice), especially since I am now reading here that some people with FM and not lupus can see this rash as well. Odd how FM can manifest wherever it feels like!
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