View Full Version : Diagnosed 2 months ago

03-21-2009, 02:48 PM
Hi Everyone,

BEWARE: I apologize ahead of time for the long windedness. lol
I've been reading the site for a couple of months now looking for answers and decided it was time to join and get the support that my Dr. can't give me (which by the way I am currently looking for a new one) but you can't just pick up the phone book and know who is knowledgeable about lupus. I have a wonderful Rheumy a hour away, who luckily diagnosed me because of my persistance. My appt with her still wouldn't have been had, and probably wouldn't be here had I not. I was insistent to see her (thankfully for the raynauds or I wouldn't have had a clue) but had a clue and knew I was going down hill and going down hill fast, and we were scheduled to leave on vacation in 3 weeks. I went to our local ER with high BP and breathing issues, I told them I needed to see my Rheumitologist so they called and I was scheduled to go in the next day. She said she was pretty sure it was lupus, and ran tons of test to rule out thyroid, lyme (which I had thought it was for a long time and was getting pushy with my Dr. when the joints started bothering me) They had diagnoised me with cronic fatigue 3 months earlier when I went in because I was beyond tired, I couldnt funtion, and said to them do you think I have cronic fatigue I'm in her once or twice a year becasue I'm so very weak and tired for the last 15 yrs (I've had nose sores and hives but never thought to mention all to Dr. so Im not sure how long I've had Lupus, but think my flairs were minimal for a long time) and they're usual response (ofcourse your tired you have a baby- she's 14 months now and a 9 yr old) Sorry back to the rheumy. Along with shjogrens, and a muscle test because of the weakness to rule out a different disease. TADA there we had it a week later. Im sure my Dr. felt like crap cuz he was making me feel like a hypocondract. I was put on Plaqunil and was told see you in 3 months hopefully it will have started to work for you. THANK GOD for her. We went on vaca and I had a horrible flare, I was in so much pain I didn't sleep for 2 nights and went to the ER in Saint Cloud Fl, (just mentioning it cause they miss treated me) I told them I had lupus and was in incredible pain in my back and insides. He perscripted me hydrocodoin. Obviously it didn't work. a long story short. LOL, right. I called my rheumy and they were flabergasted that they did that and told me I needed pridnizione and if it was my lupus I would feel relief within 24 hrs. It did work. WHOOHOO, but this was 4th day of vaca and hadn't slept in two so spent the next day in bed sleeping. The big thing that bothers me is had I not been persistant in getting to see my rheumy and knew what I had when we went to Florida what on earth would have happened to me because they obviously have very little knowledge of lupus. Scary thought.

I'm doing much better. Nothing hurts, and can function (what I call a day that life in of itself isn't exhusting), my raynauds has been pretty severe (which didn't flair in FL) this past 2 weeks, and some sort of skin thing is going on. Not sure if its a rash or hives or both and very very dry skin that my lips and around my eyes are peeling, kinda like I have chapped lips. But will take in a heart beat if I have energy to lift the baby out of her crib and not feel like being a mother is too much.

I also take fish oil, multi vitamin, and wellbutrin along with plaqunil. and now I have back up of prednisone if need be.

Thank you all for all the questions and answers. They have been so helpfull to me. I do have a question if anyone knows. Will the raynauds stop when the lupus flair stops?

OMG! I forgot to mention my 14 month old has developed raynauds and of course the first time I saw it I burst into tears cause I tought she would have lupus, but her Dr. assures me thats not the case. Does anyone have any in put as to that. I mean what are the chances of both of us having raynauds, and for it to start so early in her scares me too.

I'm so sorry I was so winded but that is my story in a nut shell, and can't wait to make new friends, and use the site for help and to help others. There was a post about muscle problems that I had same thing and would like share with her.


03-21-2009, 07:37 PM
Hi Michele,

I'm Rob, and I was diagnosed with SLE five years ago. I'm now 41. It's so good to hear that someone with Lupus is doing well, and coping with it. I have basically a constant flare that swings from terrible, to tolerable every few days. I enjoy the good days, and endure the bad. I know what you mean about so called health care "professionals" who have not a clue about Lupus, or any other autoimmune disorder for that matter. And good rheumo's are few and far between, so you are very fortunate to have a good one. We get some real horror stories here about people being mistreated by incompetent rheumo's. I've fired more than a few myself. Anyway, welcome to our group, and please make yourself at home.


Angel Oliver
03-21-2009, 07:51 PM

Just to say hello and welcome. So glad you joined, you'll meet allot of lovely people here who will help you out with your questions. Sending you gentle hugs, you've been through it! Its nearly 3am here so i'll catch up with you soon.Gonna try and sleep :)


03-22-2009, 08:51 AM
hi michele,

welcome to the group. since you have been reading different threads for a couple of months, you already know the unconditional support that one receives from our members.

i too have noticed that since my lupus diagnosis, i get treated differently when i have a medical situation arise. i guess this is the only good thing about this crazy disease.

i don't have info on raynauds and family involvement....i am sure others will be along who can answer your question. however, i am so sorry about your baby...thank goodness he/she has you to be an advocate.

sick n tired
03-22-2009, 09:59 PM
Hey Michelle,

It is so aggrivating when the doctors say "of course you are tired, you have a baby" I got that type of response for over 15 years...and I believed it was all in my head.
I also have symptoms that I just haven't told because it has been happening for years...

As for you little one...I am sorry that little bitty is having some raynaulds symptoms...I have a child who has been sporting the malor rash since she was 4. We didn't know what that was at the time and she seems to be doing ok...some pain in her knees...I am not sure when to take her in and when to let well enough alone.
You have checked it out with the pediatrition and that is the best thing you could do. That doc will make a note and keep an eye on it so you don't have to worry too much. At least Raynaulds although uncomfortable is not dangerous...bright side.

Take care,


03-23-2009, 10:46 AM
Hello and Welcome to our family.
The fact that you were (and continue to be) persistent with your doctors and that you were knowledgeable about your disease was (as you've noted) a primary factor in you getting treated and proper medication. I am glad that you've decided to join us so that you can continue to learn as much as you can about Lupus and how it affects you. You will have to continue to be persistent and aggressive with your doctors in order to ensure that you get quality care and appropriate medication.
I have heard of infants with Raynaud's Syndrome, particularly when the mother has the syndrome. This is especially true if the child was breast fed (I could not find an adequate explanation for that bit of information).
I am glad that you are here and that reading the posts for several months has provided you with needed information and answers. You will, most certainly, find lots of friends here and many memebers who are more than willing to give you answers, support, and to let you know that you are not alone.
Peace and Blessings

03-23-2009, 11:27 AM
hi michele and welcome! i'm glad your medications are working for you and that you were persistent enough to get the treatment you needed. i also take hydrocodone for pain, but i feel like it works like a charm!

how long were you on prednisone for? you say that you only use it as a back up?

03-23-2009, 11:37 AM
Thanks so much for the support. It brings tears to my eyes knowing I have others that know what I'm going through and can help.
Karen, I'm sorry to hear you think your little one is developing symptoms. I will be watching for sure for any sign.
I see from other posts that a lot of the time the plaqunil isn't enough to help, so is it not true what my rhemy and Dr are saying that I could go into remission once the plaqunil takes full effect and stay in a remission? I am feeling like I maybe headed for a remission. The only things left are the rash/hives which are not present at the moment but seems to come and go, hair loss, swelling of hands in the am but mostly my right hand if that makes sence, and the occasional eyes erritation again basically right eye, and photosensitiveity, and unfortunately forever I worry white and blue fingers.
Phyllis how long ago were you diagnosed?
Rob, and Angel thanks for the reply it really does make you feel special when someone can take the time and say Hi, wish them well, and support. Truly it makes a difference so please keep up the encouragement for newcomers. Thank you so much.
I wish I could spend more time here, but with a little one it limits my time to nap time. lol
Wishing everyone peace and thanks.

03-23-2009, 03:16 PM
hi michelle,

visit whenever you can...someone is always here - or playing arcade.

i had symptoms as a young mother, then i don't remember being too bad for about 10 years. since 1996 i have been searching for what was wrong with me. in 1996 i was diagnosed with fibromyalgia, but always with positive ana and blood in urine. my rheumy and i have always thought that something else was going on, but i did not have enough symptoms to diagnose lupus. In 1006 i was diagnosed with interstitial cystitis (the lining of my bladder has been destroyed by something) , and in october 2008, she finally said we had to diagnose the lupus, so here i am.

this is my third rheumy, and i really like her and her staff. we have a very "equal" relationship.

also, the plaquenil can work and really really helps people. plaquenil enables some people to keep steroid dosages very low. do not give up on what the dr. told you.....always hope for the best....my lupus obviously went into remission for several years... so it can happen for others. i will always pray that it does.

hope you are having a day enjoying your little ones.

03-23-2009, 03:27 PM
Hi Tasha, thanks for the reply.
I was only on the prednisone for a week. I think why the hydrocodione didn't work for me is because my pain was inflammation inside my abdominal area some where, I thought it was kidney failure, which it wasn't all my blood work came back ok, just a little liver elevation I think was cause by all the over the counter meds I was taking for the pain, not realizing (it being my first huge flare) I should have been on prednisone 4 days earlier when I had flu like symptoms, chills and achyness for 2 days, thenthe 3rd day pain came and went to different spots on my body in like 5 second spurts, it was the weirdest thing, and then it hurt to walk every step I took was like a shot of pain up to my head, and of course the complete exhaustion. I think if I hadn't been so sleep deprived and practically oding on over the counter stuff I could have figured that I needed prednisone.
Looking back at my other post when I say I'm heading for a remission seems kinda funny now looking at all the things that are still going on, and I wonder if I'm being complete naive when I think its gonna happen.
How long have you known, and how did you come to find out?