Is this Lupus or not? Frustrated with docs

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Regular Member

Date Joined May 2008
Total Posts : 37
   Posted 5/5/2008 5:08 PM (GMT -6)   
So many symptoms, but no definate answers.  Here are some of the things I've been experiencing:
RASH: moved from fash to neck and chest, lots of itching.  Starts out looking like hives, but dosen't go away during flares.  This is has happened 4 times this year so I itch a lot, but no real rash.
JOINT PAIN: hips and fingers, thumbs...have been diagnosed with bursitis, and arthritis.  The pain started in the night of major pain, then okay, but 4 days later...the neck rash....
HEADACHES: not often, but flares have begun with a doosy of a headache, then feeling okay...then within a few days, the rash and other symptoms.
CHEST PAIN: mostly felt in my upper back/lung area...during one flare only..deep breaths extremely painful, as was sneezing...that was pretty bad. That lasted about 4-5 weeks.
SHORTNESS OF BREATH: I walk up 4 small flights of stairs at work, many times daily...about 36 steps total...should get easier...beginning of year I made it all the way with no problem, now can make it about 1/2 way before running out of breath!
NUMBNESS IN FOOT: Weird, but feels like I've tied a shoe too tightly...foot seems to go numb alot...every day.
HYPOTHYROIDISM...have been diagnosed with that for about 7 years.
RAYNOUDS...same time line on that.
ARTHRITIS ....more pronounced in last few months...mainly contained to thumbs and hips. (have had lyme disease 4 times, I've always attributed the arthritis to that?)
EXTREME FATIGUE AND EXHAUSTION: This is the worst.  Some days have tons of energy, but most, feel as though I am dragging myself through work, and once I get home, I just want to crawl beneath the covers...but have 4 kids to take care of...
Blood work for the Rhuematoid factors came back normal...the double strand DNA came back indeterminant...have to retake....urine came back with small amounts of red blood cells in it...(twice) The tests were taken a few days after a flare of what ever this is ended.
I am only 48, pretty physically not smoke, eat a very healthy diet, lots of water....

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/5/2008 6:46 PM (GMT -6)   


   Welcome to the forum. Everyone is very nice and helpful here. Have you looked and the site yet. There is alot of good info there to help you.

    Are you taking any medicines to treat the symptoms so far?  

   You do have some of the symptoms of Lupus, but could also be from other immune diseases as well. It's really hard to get the diagnosis quickly. Did your doctor do any of these tests?  lupus panel, Sedrate, Crp, Cbc, Ch50, Anti-SSa or Anti-SSb, anticardiolipin. I'm sure the others will come of with the others I forgot.

    I know its frustrating when you feel so bad and can't get the answers you need to help you feel better. Hang in there and keep us updated. Ask all the questions you want. We will help you in anyway we can. You will be in my thoughts and prayers.



Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/5/2008 7:03 PM (GMT -6)   
Hi Sunshine! Welcome to the forum.

Wow you have a real puzzle because of the Lymes issues. We've had several from the Lyme's forum pop in here for help. My best suggestion is to click on the link at the end of my signature "Lupus Criteria 4 of 11". That link will show you the criteria used to dx lupus. The rheumatologist looks for 4 of the 11 listed. If you aren't seeing a rheumatologist, that is where you should start. This is a difficult disease to dx and rheumies are best trained for it. There are some other links in my sig that might be helpful as well.

I think you'll enjoy this forum. Lots of helpful folks here. Glad you found us.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined May 2008
Total Posts : 37
   Posted 5/5/2008 7:26 PM (GMT -6)   
Thank you both for your responses.  My doc ordered the tests, had them done at a lab.  When I first went in for other symptoms, back in Jan. she mentioned the possibility of Lupus.  We didn't go any further with it at the time.  One of my son's scout mom's is a nurse, we've known her for many years now, she knows my history and asked if (during a flare of what ever this may be) my doc had talked with me about the possibility of Lupus.  That's when my doc decided to take a more serious look at this. 
Thanks for your help.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/5/2008 11:44 PM (GMT -6)   
Did they really knock the lyme disease out or are you having reoccurring bouts would be a good question to ask. I know lyme is really really hard to get rid of and that it can become a chronic condition. I have also heard it mimics lupus and that it may even trigger lupus but am not sure on that.

I recommend seeing a dermetologist and asking to be sent to a rheumetologist who specializes in lupus (very few rheumys actually do and many claim they know enough about lupus but are really not good with it, the age of the patients the rheumy sees are a good indication- older people indicates less chances the doctor is really good with lupus)
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

Regular Member

Date Joined May 2008
Total Posts : 37
   Posted 5/6/2008 5:47 AM (GMT -6)   
:-)  Yes, we believe the Lyme was taken care of. Have gotten bit each year for the last four years and have gotten the tell tale bullseye rash each time as well, with docs saying yes it's Lyme, just by seeing the rash, and no by looking at blood results!  I know the symptoms well now, and get on the meds immediately, always feel better within days.  This first time I had Lyme, I also had Erliciosis (spelling) at the same time, another tic borne disease.
What is going on now is different.  I will make an appointment with a Rhuematologist. Thanks for the advice on what type to look for. 
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