View Full Version : New here...not sure I belong...waiting for rheumy consult

12-26-2008, 10:03 PM
Hi everyone...

Like I said in my thread title....I'm new here and not sure if I belong. I have not been diagnosed with lupus but it is a possibility at this point. My story is a long one and I hope you guys don't get too bored..lol. I just thought I would share my story and see if any of you have any thoughts,etc. I have been searching thru the threads and you all seem so kind and caring!!

Hmm..ok....I'm 31 years old, married to a great guy and have the best little one year old little man...Cooper :). I have worked as a RN in telephone triage for about a year.... prior to that, I was a med/surg nurse for 8 years.

My story starts way back when..lol....I am a long time endometriosis sufferer. I've had multiple surgeries, been on multiple meds including bcps, continuous bcps, and Lupron. The stuff just keeps coming back..grrr. I have also been dx with adenomyosis and PCOS. Anywho..I have had "aches and pains" for years also battled a lot with fatigue. I always just linked it to the endo and the chronic pain that goes along with that.

In October of last year.....we had Cooper. I noticed after he was born...that my generalized aches, pains and icky feeling were worse than they had been. Again..I shrugged it off as being a new and sleep deprived mom, carrying around an infant, a carseat,etc.

I had been getting by until May or June of this year. I started having endo problems and my gyn put me on a strong bcp with high estrogen...as I had been having break-thru bleeding,etc. Was on that for two months then had another surgery to remove endo, adhesions,etc. After the surgery...I didn't recover very well...I had frequent low grade fevers, was very fatigued and noticed my muscle pain and aching was worse. Oh...shortly around this time..I developed upper, right sided back pain. I thought it was r/t my gallbladder or something. The pain was much worse with taking a deep breath. Went on to be dx with ucler and was started on prilosec....didn't help and I still have the pain to date.

Ok...again...bee-bopped along until the end of October..when I got my flu shot. I had a less than pleasant reaction including wheezing, high fever, and severe body aches. Only lasted about a day but my aches have been yet worse ever since.

Also around October or so...I started having night sweats, frequent headaches, low grade temps about three to four times a week, and I've been losing a lot of hair..(again blamed that on having a baby..but it still happening over a year later?? not sure??)

My aches continually got worse..so i saw one of my pcp's partners. She ran a CBC, sed rate, thyroid tests, and a lymes....all within normal limits. She referred me to the rheumy...which I will be seeing Jan. 16th.

In the meanwhile....I have been taking a Vicodin a day..just so I can function. Now my pain has really settled into my ankle, knee, and elbow joints. Some days it is severe....lastnight in bed...I had a right knee attack..it was like someone was stabbing me in the knee and holding a blowtorch to the knee at the same time. Anywho...I called my doc a few weeks ago...he didn't know any of this was going on because I had seen his partner. I told him about my sx. with the addition of a red rash to both palms...I don't think I had it at my first appt or hadn't noticed it?? It is a red, non-raised rash that is mostly around the paremeter of both palms...sometimes my finger tips have it...but that seems to fade quickly. The rash doesn't hurt, itch..although occasionally it almost feels tingly like. Anywho..my doc got concerned and ordered a chest x-ray (due to the rib/back pain) a CK and a ANA. Everything came back ok...the ANA came back at 0.9 (mayo's weird values). The cutoff for being weakly positive is greater than or equal to 1.0....so I was close to being weakly positive..not sure if that matters or not?

So...here I am...in pain...and feeling worse everyday. The week before my period and during my period seems to be when my sx flare the most....I am on the week before right now.....so i am not feeling well at all.

So....that brings me to the end of my story...my doc said he feels reassured that it's not lupus because of my ANA being normal....or he at least doesn't think it's as likely. I'm not sure what to think....I do fit some of the lupus criteria? I know it's definitely something though...fibro, lupus, RA????..I've dealt with a lot of chronic pain with my endo and you just learn to know your body well after awhile as I'm sure all of you know.

Ok....sooooo sorry this has gotten to be so long...I've never been a right to the point kind of gal..lol. Anyways...just wanted to say HI and get feedback from any/all of you. Being a RN...I always feel silly asking so many questions..I wonder if people think that I should know this stuff. Anywho....thanks for reading this and I hope to hear from you :)


12-27-2008, 01:16 AM
I wanted to welcome you and say thank you for sharing your story :wink: There are some very educated people here who, I am sure, will be along very shortly to guide you through your questions :) I have had a lot of issues like you are having. I recently started having the female issues and just had my first surgery last week. While in there they found a hernia which I have to go back into surgery as soon as possible. I too had the chronic fatigue, pain and hair loss. The night sweats arer the worst :!: I would wake up with nothing on and not remember any of it :wink: I know, you are just all around uncomfortable :(

Lupus is very hard to diagnose and people can go for years and even their entire lives without technically being diagnosed. One of the problems is that there are so many autoimmune diseases that can mask themselves and show the same symptoms of other diseases. It is time consuming and very hard on us. Please, do not give up :!: You are right, when you have dealt with chronic pain for so long you can really read and understand your body. Keep pushing for answers :!: You have to be your own advocate and if you have any doubts with your doctors, look for another one until you find one that will work with you and listen to you :wink: Hang in there and we are all here for you :angel:

12-27-2008, 02:23 AM
Welcome triagenurse22

I'm a 48 yr old female, my mother had lupus, my sister is diagnosed. I've had symptoms since I was 18/18 yrs old.

I've had a couple of possitive ANA and a negative ANA and a boarder line ANA test.

I've tested possitive with malar rash and I have the butterly rash on my face.

What I do not have is a diagnosis. That can take awhile. As far as symptoms go....each person can be very unique, which is one reason why lupus is so hard to diagnos. There are classic signs, but even the ANA test can very because it depends on what's going on with your body at the time of the test, also what markers the particular lab you blood work is being processed by are looking for can make a difference. Not all labs have the same criteria.

Glad you found us, you are more that welcome to hang out with us and ask any questions you like. This is a very warm and supportive site.

Hope you get the answers you need soon.

12-27-2008, 06:48 PM
Thanks for the warm welcome you guys!!! Even if it turns out that I don't have lupus....it seems like I share a lot of symptoms with everyone....this will be a great place to come for friendship and support!!! Thanks again...

12-28-2008, 10:34 AM
Hi triagenurse,

welcome to a great group. even if you don't have lupus, these people will help you through the process.

I too have probably been battling this disease since an early age, I am now 56, was diagnosed with firbomyalgia in 2003, and was just recently diagnosed with lupus even though I have had a positive ana since 2003.

When i told the rheumy at the mayo clinic about my hands hurting/burning, he said 20% of people with fms have involvement in their hands.

point being...be your own advocate, learn what you can, and then educate your drs.

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