Hi new here, doc says she thinks I have lupus....

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asherah
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/26/2010 1:39 PM (GMT -6)   
Ok so for the last 7 or 8 years i've been getting sicker and sicker. I always test negative for auto immune but she says she believes I have lupus.
I was first diagnosed with fibromyalgia but I just get worse and have joint pain and swelling so I don't think thats what it is...I've had my thyroid tested a bunch of times aswell. I'm on vitamin D for a definiency (sp) aswell. Also, my xrays have been negative.
These are my symptoms :

Sore throats
feeling like i'm getting the flu
muscle pain
joint pain
swelling of hands, joints, feet, knees,
tender joints
back pain
headaches
palpatations
rashes (3 times)
sicca symptoms
extreme fatigue
sleep issues
short term memory loss
muscle cramps
twitches
intestinal inflammation/pain - was tested for celiac

So what do you think ? There is some auto immune in the family, my aunt has celiac and my grandmother has rheumatoid. I need some advice. I'm s upposed to go get a blood test to check if I have the enzyme to digest plaquenil. (sp)
thanks alot
asherah

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 9/26/2010 2:28 PM (GMT -6)   
Hi Asherah!  Welcome to the forum.  There are lots of people here who will be able to address your questions.  www.lupus.org is also a good place to go for information on Lupus.
 
I can only tell you that your story sounds almost identical to mine.   I had been diagnosed with fibromyalgia by 3 different docs - but nothing else was showing up (thyroid, autoimmune markers) for nearly 10 years, five of which I knew things were changing and getting worse, but didn't know what to do about it without definitive lab findings.   I never could tolerate any of the fibro meds.  In 2007 a  high +ANA started to shed some light and I was started on Plaquenil in 2009.   I also have a very high CRP, but nothing else has shown up lab-wise.  I am on my 3rd rheumatologist - and he thinks RA is part of the puzzle, too - even though my knee xrays showed only mild to moderate changes.   I might have gone nuts over the "no definitive answer" thing for such a long time, if it hadn't been for this forum.
  
I have every single symptom you listed with the addition of hair loss.  Thyroid tested a jillion times.  I do have celiac, which was identified last year and am on a gluten free diet.  My grandmother had rheumatoid.  My daughter also has Celiac.  It is not uncommon to have both Fibro and Lupus,or RA or other autoimmune disorders.
 
I'm sorry you are going through this same process - but it is good to know you are not alone, right?  I hope you are seeing a rheumatologist and getting appropriate testing through him/her.  Lupus is known as the disease of 1000 faces - someone who specializes in auto-immune problems and particularly lupus, is who you need.
 
Good luck - and hang in there - I know so well how miserable you are feeling.  Plaquenil has helped - but it took awhile.  I'm sure others will be along to add their thoughts.    Rest and stay out of the sun (it took me forever to realize the sun was triggering flares) and use sunblock.  yeah  
All the best -
Lucy
 
 
 
 
 

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/27/2010 2:55 PM (GMT -6)   
I have been diagnosed with fibro and cfs,extreme low b12(getting shots biweekly),hypothyroid,low vitd,sleep disorders,connective tissue disease,waayyy too much artharitis in my knee(as have a tear in it but cant operate cuz of arteritis).my sister has lupus and my ana was positive but rhumy says numbers arent high enough yet to say I have lupus.pain doc says I have it,endocrinologist thinks I have it,my gp thinks I have it.Im only on amtriphaline and my vitd,shots and of course my c-pap.I too have all the symptoms swelling big time,memory is gone,eyes are dry,redness across my face,white and red in hands from nothing in peticular,as well as extreme tiredness.I told my pain doc Im noy really in alot of pain as I am weak,swollen tired and achy.I was on lyrica then gabapentin for 1 and 1/2 years which put 50 pounds on me very quickly,now they tell me to do cardio!I told them sometimes I cant even make it up the stairs! I am not obese,and carry the weight well,I used to train every day-but I am lucky to get my hair washed sometimes!how long must I wait for a proper diagnosis-and the amtriphaline is making me even more sleepy than ever!*shakes her head*-I dunno about this system,all I do know is its not fibro.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/27/2010 4:45 PM (GMT -6)   
shoeless I would find another rheumy. simply put you should be being treated based on symptoms not blood work. Blood work especially ANA is not the end all be all of diagnosis. there are 11 criteria you only need 4 to be dxed
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, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/28/2010 12:53 PM (GMT -6)   
Thats what Ive been told-but Im in Canada eh.I have small blisters on my head...they really hurt.anybody have those?

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/28/2010 4:11 PM (GMT -6)   
see a dermetologist right away and get picture of the rash and any other rashes. believe me some have gotten their dx via dermetological work up.
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, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/28/2010 5:09 PM (GMT -6)   
yeah,I guess,but that will probably be another six months,my hubby had to wait over 4 months.thanks for the info and advice! :0)

Perdiddle
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/30/2010 8:32 AM (GMT -6)   
Hi shoeless,
 
YES! Blisters on my scalp. about 6 months ago I started to feel them, they where sooooooooooo painful, took forever to heal!
Have not had any for a a month or so now, since getting all the medication.
 
redrose is right, you need someone to treat the symptoms at the very least, my pulmonologist was the one to start tentatively  treating, he is a wonderful man, gave my medical group hell when the rheumy poo pooed a lupus DX. The rheumy soon changed his mind when the CT scans, xrays, bloodwork and echocardiogram hit his desk though. Now the PCP, Pulmonologist and Rheumy are ALL on the same page. :-)
 
Perdiddle

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/30/2010 11:11 AM (GMT -6)   
yeah they are very painful,and none of my docs even paid any attention to them.Right now I have a cold ,everyone else I kn ow gets a cough watever,I fell like Im dyin.stupid docs....
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