[Joann Gomez]

Hi my name is Joann.I was told 6 years ago that I have fibromyalgia.Then
I started having symptoms M.D. and after years of going from one Dr. to the next. they tell me I have boarder line Lupus. I am not currently being treated by any Dr. I dont belive that!! Can someone tell me if they are right? Here are my symptoms.I have pericarditis,loss of hair,I get really tired when I am in the sun,face looks like a freaking chipmunk. My face,feet and hands looks swolloning. Its worse first thing in the morning.It hurts to walk. It feels like I am walking on glass.I have lost part of my vocal cords.and the drs.cant see any damage.loss of vision.It comes and goes.I used to have perfect vision.Ihad to have a complete hystorectomy when I was 29 due to endometriosis.I have dry eyes.and dyr mouth.I cant even eat ice any more because it feels like iam choking.And now my kidneys fell strained.In the morning my chest and stomach and lower back hurt so bad.but when i go to the bathroom the pain eventually subsided.Is that a symptom?And once every two to three months I will get a fever and chills like I have the flu. just for that day. and by the next day I will be just fine like nothing happened. I have high blood pressure.And take nitro for spasm.I have two kids and I want to be around for them.Can some one tell me what I need to do? Please Help!I am so frustrated..:sad:

 

[Lily]

Hello Joann and welcome to the Lupus Site

Your sure don't sound very well the very first thing you need to do is find a Rheumatologist who is well versed in Autoimmune connective tissue diseases (of which Lupus is only one).

I'm no doc but many of your symptoms point to a diagnosis of Sjogrens Syndrome and especially you describing your face looking like a chipmunk. A good Rheumatologist will be able to diagnose that and put you on appropriate medications. Sjogrens is a very similar disease to Lupus in many ways and can affect internal organs. First line treatment is with an anti-malarial called Plaquenil which can take some time to kick in but is an excellent drug.

Do you see an Opthamologist? They could run some tests on your eyes and actually diagnose the dryness which is one criteria for Sjogrens. They would also prescribe drops and gels if you aren't already using them for the dryness.

If you want you could ask in our Find a Doctor Forum for a specialist near you, someone may know of one. Failing that the LFA should be able to provide you with a few names of docs worth seeing.

Push on, you obviously do have a problem and many of us here can identify. I have both Lupus and Sjogrens and in the past my Lupus has been quite severe, however lately the Sjogrens has upped the anti and is affecting my parotid glands with swelling too making me look like a chipmunk which is bizarre

love
Lily

 

[Lily]

I also found this for you tonight

http://www.sjogrens.org/syndrome/centers.html

The link to Bethesda doesn't work, here is the right one:

http://www.nidcr.nih.gov/Research/N...y/SjogrensSyndrome/SjogrensSyndromeClinic.htm

but I would still post in our Find a Doc section, to give yourself wider options.

love
Lily