new here - just saying hi!

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New Member

Date Joined Jul 2007
Total Posts : 4
   Posted 8/1/2008 6:07 AM (GMT -6)   
Hi Everyone,
I've always known I had Reynaud's - both my mother and maternal grandfather have it - but last year I started with symptoms of low grade fever, fatigue, joint and msucle pain, headaches, brain fog, loss of words, and other various bits and pieces.  At first pcp and I thought Lyme (I'm in a high risk area), but that came back negative.  However, my ANA was really high (not sure what that initial result was).  My pcp didn't seem concerned and said to wait it out until my symptoms got really bad, then do something.  (eek)  Then I went to my midwife for a yearly check up, mentioned the high ANA and she was horrified that I had been referred to a rheumi.  So I started going to someone in October of last year.  I don't have copies of my tests but I do know that my ANA is consistantly 1:1280.  My symptoms aren't awful.  I don't feel terrible, I just don't feel good.  And it seems to be worse at this time of year.  I'm not sure whether that's because the heat makes it flare a bit, or because it's the summer.  I'm a Montessori middle school teacher so I work about 800 hours and I don't let myself get sick.  I also have a beautiful, shining 2 year old who keeps me busy in the best possible way!
My rh. hasn't given me a firm diagnosis of lupus, though she believes that's what it wil be.  I defeinitely have the Reynauds and recently was diagnosed with vitiligo (loss of pigmentation).  I'm really really hoping the vitiligo doesn't spread.  At the moment it's just the insides of my elbows, which I can deal with, but the vain part of me would rather it stick to that!  I am on plaquinil (400mg/day) and a multivitamin.  I'm in therapy, doing yoga, taking my vitamins, starting with a naturopath in two weeks and will have new blood tests done in a week or so (obviously, I"m also sticking with my rheumatologist). 
So there I am in a nutshell.  I'm looking forward to learning more and keeping this under control!
*please forgive any spelling issues, typing with a 2 year old on my lap!*

Regular Member

Date Joined May 2006
Total Posts : 78
   Posted 8/1/2008 8:02 AM (GMT -6)   
Welcome and just a FYI some drs don't like to give the Lupus diagnosis because of the insurance issues it causes.
SLE 9/99-Autoimmune Hepititis 2006- Asthma- Fibromyalgia   The list is tooo long for me to type!!  Just ask I will tell.
Methotrexate, Immuran, Singular, Protonix, Allegra-D, Combevent, Duo Neb, Lasix, Imeripex, Flexiril, Zoloft, Predisone, Zebata, and pain meds. There is more but not that important.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 8/1/2008 9:43 AM (GMT -6)   
Hi Lis, and welcome to the forum. You've come to the right place! This is where I came when I was in Lupus Limbo and there are plenty of folks who are in the same place you are. IALupus is right. Most doctors are so reluctant to put a diagnosis of lupus in your chart even though they "know" you have lupus, as it appears your rheumy does, because once it's on your chart, it will never come off. And once it's there, it becomes very difficult, if not impossible, to get things like long term care insurance, life insurance, and in my case, I had to go to the state , because I'm self-employed, to get health insurance. They have an insurance group for people who can't get health insurance through conventional ways, so I get my insurance through them. It costs me $850 a month, with a $2,000 deductible and then it's 80/20. Like you, I wanted someone to confirm that I had lupus. I knew I had it and had known for years that I had it and was so frustrated that none of my doctors would confirm it. I felt as though no one believed I was really sick.

What I'd recommend to you is that before you get a diagnosis, you run out and get the most life insurance you'd ever want, and get a good long term care insurance policy. Fortunately I had already done that.

That's all completely off the subject, but your post just took me back to my situation a few years ago.

You'll meet a lot of wonderful, supportive, and knowledgeable folks here. We all come here to ask questions, to support each other, and to vent. I'm happy you're here!

Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jun 2008
Total Posts : 669
   Posted 8/1/2008 11:09 AM (GMT -6)   

Hi Lis, I'm a newbie here too....also in Lupus limbo.  My ANA is the same as yours.  I also have fibro (10 yrs)- which I've been blaming symptoms on for that long.  In the last few years, I've known there is just something else going on.   I just started seeing a rheumie 1 1/2 yrs ago....and it seems she is reluctant to dx lupus as well.  Other AI bloodwork doesn't confirm lupus. However, I just had a flare with high fever and elevated liver enzymes and low white cell count.  The low white cell count (leukopenia) is one of the 11 criteria, which brings me to 4.  It is interesting to hear others say that the rheumies are reluctant to dx due to insurance reasons.  I so want an answer sometimes I get really annoyed - but perhaps they are doing us a favor!? 

I am also not on any medication - have turned down steroids from my pcp a couple of times -though I have filled the Rx out of desperation, but then it seems if I wait a couple days things turn around on their own.  I use Advil and some very low dose Xanax before bed only when sleep patterns get way out of whack.  And lots of moist heat for muscle/joint pain, and neuro massage. I do feel I'm on some sort of continuum, however, with things ramping up, and I don't know how much longer I can go without Plaquenil, which the rheumie has suggested, but isn't pushing because of my fluctuating liver enzymes (I think - need to clarify).  I don't know where you live - but winter is hard for me (midwest) and summer seems to improve things.  I have just started with acupuncture treatment, and so far am finding good results.

At any rate - glad you're here and are keeping up with your little darlin'!  I have found, in the short time I've been here on the forum - so much information and support - only wish I had arrived years sooner!  Let us know what your rheumie has to say after your visit.  Take care!


Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 8/1/2008 7:19 PM (GMT -6)   
Welcome to the forum Lissys!!

You've found a great place for info and understanding.


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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 8/1/2008 8:20 PM (GMT -6)   
Welcome Lis, the others are right, I think doctors are reluctant to dx lupus right away. They want to see many symptoms, positive labs, etc. it also takes time because Lupus can mimic other diseases'. It's like a big puzzle they are piecing together one visit at a time.

In my opinion a treatment plan is more important than a dx. I know some like to have a dx before starting the meds but if the doctor wants to start you on them then they must "suspect" something and plaquenil is usually the first med they try as it's the one with less side effects. I hope it works well for you.

Keep us posted on how you are doing and feel free to ask more questions. Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 8/2/2008 9:26 AM (GMT -6)   
Hi Lis and welcome. Everyone has given you great information and I don't have a lot to add. It can be really hard emotionally to be in limbo - I was there for several years and it really got me down at times and also made me doubt myself a few time and wondering if it was "all in my head". My rheumy still doesn't write lupus in my chart (he writed UCTD), but he verbally told me I had lupus and that was enough validation for me. I agree with Stacie that the most importatnt thing is a good treatment plan that will keep you functioning the best that you can.

Like everyone said, this is a great site and we are all very supportive of each other. It's nice to have a place to come where people understand and can relate to what you are going through. It sounds like your 2 yr old keeps you going. My youngest was 2 and my oldest was 6 when I first got sick with lupus symptoms and they have always kept me going.

I'm glad you joined us and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 8/2/2008 9:56 AM (GMT -6)   
Hi and welcome.
You sound a little like me before I got the diagnosis. I was in limbo for 3 years before I was finally diagnosed with Lupus. They don't want to diagnose without being sure because it can mess your insurance up. Ironically, when things started getting worse for me (of which I was unaware) I was actually feeling better than I had in a long time. That was odd for me. I finally had changes in my urine tests which led to having a kidney biopsy and eureka! There it was. I still blame the diagnosis on not wearing my lucky Supergirl underwear to the rheumy. I wore them every other time and that time I decided to switch it up. That was an oops!

I'm sure we both know that my lucky undies had nothing to do with the diagnosis. I just like to tell people that. Hang in there, and you have come to a great place to learn and have your questions answered. Hugs
"Challenges make you discover things about yourself you never really knew."
SLE and Class II Lupus Nephritis

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 8/2/2008 7:33 PM (GMT -6)   
I just wanted to welcome you to the forum. I'm sorry you are dealing with this, especially with a beautiful, energetic baby! It's sounds like you're in the hands of a great rheumy. For most of us the diagnosis doesn't come quickly! Report any and all symptoms to your rheumy! God Bless you, Judy

New Member

Date Joined Jul 2007
Total Posts : 4
   Posted 8/4/2008 6:26 PM (GMT -6)   
Thank you so much, everybody! It is such a help to know that there a group of supportive, caring people willing to share their experience.
I'm sure I will be spending a lot of time here!

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/4/2008 6:43 PM (GMT -6)   
Hello, just wanted to add my welcome as well.  I hope your diagnosis comes quickly.  Getting on the right mix of medications as soon as possible will benefit you greatly. Hopefully keep you feeling as well as you can.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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