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Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 6/12/2009 11:34 PM (GMT -6)   
Hello everyone!
After reading a bunch of posts on here, I realize that I have a long road ahead of me.
My fatigue started a couple of years ago.  It started mildly, and I was treated with anti-depressants after having CBC after CBC and thyroid after thyroid checked.  Just last summer, I contracted shingles and my PCP was concerned wondering why since I'm only 31.  She said it could be stress related, but also checked my CBC, thyroid, Vitamin D, and metabolic panel to see if anything was up.  I had also still told her about the fatigue which by this time, was becoming more moderate.  I was diagnosed with a Vitamin D deficiency (as well as shingles) and sent on my way with prescription Vitamin D.  At the beginning of this year, the fatigue was progressively getting worse.  I was still able to force myself up for work (I'm a registered nurse) but was walking around feeling like I was in a fog, exhausted and never felt well rested.  A few weeks into the new year, the joint pain started in the morning where it was extremely painful for me to walk around after getting up from bed.  I finally decided to go to a new PCP that was recommended to me and told her what was going on.  She ran an ANA and a rheumatoid panel and told me everything was normal.  However, the symptoms just kept getting more severe.  I would literally (on my days off) wake up to bring my daughter to school at 7 (after going to bed the night before at 8:30pm) and come home at 8 and go back to sleep until I had to pick her up from school at 2.  What I felt were migraines were happening 3-4 times a week.  I called my PCP again and told her the symptoms were worsening and she sent me to a rheumatologist.  The rheumatologist did a bunch of tests, and found that my ANA was now positive (1:320 and speckled), my vitamin D was still deficient, and my C-reactive protein was abnormal.  She called it at that time a "lupus-like syndrome" since none of my other antibodies were abnormal, and I had no other organ involvement.  She has started me on 10mg of prednisone to see if it helps and if it helps, she said she will start me on plaquenil and possibly start treating it like lupus.  I am supposed to see her in 2 weeks.  It seems like a "wait and see" kind of approach.  The prednisone has dramatically increased my energy level and for the first week and a half, my symptoms were better- just some minor joint pain every once in a while.
So, after that long explanation...I have a few questions:
- This might be TMI, but the last few days I have gotten worse, with worsening joint pain, and I feel as of today that my fatigue is coming back.  However, I just started my period and am wondering if that maybe involved somehow even though I've never quite felt this bad before with any of my periods.  Can "that time of the month" cause symptoms to get worse even when on steroids?  Or am I overreacting and this is just a really bad one?
-Also, a weird thing that I have noticed since going to the doctor is, my tears are actually burning my eyes.  My eyes will water spontaneously and then the tears that form actually make my eyes burn, which makes my eyes water more, etc etc.  Has anyone else dealt with something similar?  I'm thinking it's some kind of dry eye situation because I've tried changing my mascara, not wearing mascara, etc and nothing seems to help.
It's nice meeting everyone here and you all seem like such strong people!  I can only hope that I am as strong as you are and that hopefully someday soon, lupus or not, answers will be given to me.  I haven't felt like myself in years. 
Hoping for answers...

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 6/13/2009 9:37 AM (GMT -6)   

So sorry to hear about all of your problems. Your story sounds very familiar, although it seems that you received your diagnosis sooner than many of us. Since you're an RN, you're already way ahead of the curve on knowledge, and it sounds like you have good doctors. So many folks go to doctors who don't believe they have real symptoms, and the search for a diagnosis an go on for years.

Welcome to the forum! You have joined a great little family, and though we always hate to hear of someone else with a new diagnosis, we love meeting and welcoming new people.

I can't answer your question about your symptoms worsening around the time of your period because luckily I haven't had to deal with that problem for years. But I believe I've heard other folks talk about that and I'm sure they'll chime in.

The burning caused by tears is a new one for me. Maybe someone here with sjogren's can answer that one.

You sound like a strong woman, and you'll be able to make it down this road. It takes determination and a positive attitude. Hearing that you're dealing with lupus while raising a little one makes me sad, but your child will grow up with compassion, and trust me, you can do this.

Do you have a good support system? That's what's gotten me through the past five years. That and this forum. By the way, you'll find that it's quiet around here on the weekends but during the week you'll hear from more folks.

Hang in there. Hopefully the plaquenil and other meds your rheumy gives you will eventually kick in. Keep looking for answers!


SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 6/13/2009 10:51 AM (GMT -6)   
Hi Pat!
I moved to Colorado from New Orleans a year ago. Being a nurse and a single mom, having to stay during a hurricane while my daughter evacuates with family seemed too traumatic for both of us. So, we moved away from the possibility of that but unfortunately also away from my support system since my whole family is back there. I have a brother and sister-in-law that live here, and a couple of friends. Also, the people I work with have been very understanding and supportive. When I decided to move, the only symptom I had was the fatigue and the MDs were blaming it on being a single mom, depression after katrina, etc etc. The other symptoms didn't start until after the move. So, not much of a support system here, but I'll make it work somehow.
It's very nice to meet you and thanks for the response! I'm hoping for some kind of virtual support system here.


Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/13/2009 11:28 AM (GMT -6)   
Hi Nola,


As Pat said, this is a great group. Very supportive and they always make you feel better which is no small task!

Yes, your symptoms do sound familiar. And every month when I get my period, I start a flare. And that is without prednisone.
The Sjogrens makes my eyes dry and burn, but I rarely get tears. That might be something to ask your rheumy.

Some on this group have fibromyalgia - and they say that the prednisone makes it worse. Just something to know.

Again, welcome. Hope you feel better, soon.
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Regular Member

Date Joined May 2009
Total Posts : 99
   Posted 6/13/2009 6:54 PM (GMT -6)   
Welcome Nola!
            I can tell you that I have the same problem with my tears stinging my eyes.  Unfortunately, I can't help you with it as you are leaps and bounds ahead of me as far as treatment.  As Pat said, for some of us dx and treatment can take a while!  I had a 2 month wait to get a rheumy (I'm down to just one month now!).  My GP (I refer to him as Dr. Great Guy) went pretty quickly to get me a rheumy but they are sparse here in small town Illinois.  Like you I only have a small support system and my employer doesn't care about me and does just enough to skate the boundries of legality (translation: they care about the law and the business more than me).  But I have found great comfort here.  These people are great and they give great advice.  Don't give up.  As for the periods causing flares- I am on a continual pill so I have a period about once a year and yep its not pretty (even beyond the normal PMS).  If you can tolerate it I highly recommend it!  Good luck and visit often.  By the way, there isn't a whole lot that falls into the "TMI" category!

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 6/13/2009 8:05 PM (GMT -6)   

Hi Nola, and welcome!  Your story does sound very familiar.  I'm glad you've been referred to a rheumatologist so quickly.  I've been seeing my second one for going on two years.  I have the positive ANA - first one right where yours is at, which then continued to elevate over the next year and half, while my other labs have been pretty normal and negative for other AI factors.  My rheumy runs them every six months or so - she is fairly certain eventually what is "hovering" will land in a clinically diagnosable way.  In the meantime my dx is UCTD, and I've been on plaquenil for 6 mos.  It does seem to be helping lower the intensity of my fatigue and pain, while decreasing (knocking wood,here) the depth of the flares.  In other words I don't feel as if I have my life back, but have more good days.

My patterns have been speckled and homogenous and nucleolar, on different tests - not sure how helpful they are for diagnosing.  I also have Vit D deficiency and osteoporosis.  My CRP goes up with an acute flare, as do my liver enzymes.   I'm another one who can't help you identifiy your menstrual cycle as a trigger, but it seems I've seen that mentioned by others.  I get burning scratchy eyes, but not the tears.  My husband does say when his eyes get really dry and tired they water and burn, but I'd mention it to your doctor as Sjogrens' is another possibility.

I hope you like Colorado - my sister lives in Fort Collins - she just loves it there.  Good luck with  your rheumy appt.!   I have found so much support and help here from folks on this forum after getting so frustrated with the "wait and see" approach.  It's hard when you are barely functioning and there aren't concrete answers.  

Blessings to you and your daughter!



diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 6/13/2009 10:53 PM (GMT -6)   
It's very nice meeting all of you and thanks so much for the responses and kind welcomes!
It's really nice to be able to talk to people that know what you're going through.
Thanks again!

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 6/14/2009 10:12 AM (GMT -6)   
Nola, Welcome to the forum, I'm glad you found us! It's good your rhumy put you on plaquenil it will take time to work but it will help you! Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 6/14/2009 10:31 AM (GMT -6)   
Nola, my son & dil live in Denver and love it. Matter of fact, my brother and sil do too. They're in china for a couple of years but are Denverites. I'm planning on spending a lot of time there after my grandson in born. I love the weather in Colorado and feel better when I'm there - less humidity and heat. I'll bet the job market for RNs is good too. You are in a great field.

Hope you're feeling ok today.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 6/14/2009 11:52 AM (GMT -6)   
Hey Pat!
The weather up here is gorgeous and soooo much different from the heat and humidity in New Orleans. I'm going to visit New Orleans at the end of July to see my family and I'm kind of interested to see how I'm going to feel down there- since this whole thing is still relatively new to me. Well, not interested in a good way, but you know what I mean.
The last couple of days have been good ones for me. I guess the few days before were just massive PMS days because now I'm feeling pretty good. Hopefully, it stays this way for a bit.
I hope you're doing well today!


Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 6/14/2009 12:55 PM (GMT -6)   

Wanted to welcome you to HW! As everyone has said, this is a wonderful support group! The wonderful people on here are so encouraging and seems to know the right thing to say! Hopefully your days will stay good ones :-)! Oh yeah...when it gets that time for me, i usually feel horrible. The pred has made me irregular so I guess it an okay thing because I know when the pain gets the worst, I will have my visitor in a few days. I hope you will get some answers for your new doc in a few weeks! Keep us updated!!!



21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

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