View Full Version : Hello , newbie here with questions ! Sorry very long !

07-18-2005, 11:20 AM
Hello , First off I'm 39 , female and was dx'd with SLE in 2001 , during that time I was on Predisone , Methertexate , and Plaqunil . In 2003 I was transfered to a primary care doctor , that ordered labs and then decided that I didn't have SLE , because she said that my Sed Rate was 8 , but when I was first dx'd it was in the 60's my ANA was neg. So she said why was I dx'd in the first place . I told her that my Rhemuy at university dx'd me because of the following problems , joint pain , sun sensitivy , rashes , low grade fevers that had been followed for over a 6 month period , swollon tummy , very frequent UTI's one every other week. Basically she pulled my meds . Well it's been a year and a half without my meds and for the past 6 months I've felt worse than I did when I was first told that I had SLE , but only now I have the rash on my face , very faint but it gets worse when in the sun , I itch like crazy when i'm in sun , less than 30 minutes and i'm a walking rash , I'm sooo tired , my muscle's in my thighs hurt so bad , my joints hurt . The only way I can descibe it is I hurt from the tips of my toes to the tips of my fingers literly , I've started getting little ulcer like cracks inthe corners of my mouth , I wear dentues and it hurts to wear them , I have a UTI all the time now , I wake up i'm hot , I sit in front of the AC blasting and my skin's still hot .... Tingleing in my face were the rash is and migranes on one side of my head , I've had a migrane on and off for almost 3 months now and nothing seems to help , although It got so bad one day that I went to the ER and when I told her my medical history , she told me sounds like lupus migranes . Today my chest hurts , last night I tried to take a deep breath and when I did it hurt so bad I was afraid to breathe again. So now I'm going to see a new doctor , i've been waiting to see one for almost six months now . I'm afraid that this doctor too , well look at my last doctors notes and laugh at me ...... I mean I know how I feel , the Rhemuy that first told me that I had Lupus has been in practice for nearly 20 years , I don't know who to believe anylonger :roll: . So I guess what i'm asking is who would you ladies and gents believe ? and does what i'm describing sound like i still have lupus ? Thanks for reading this very long post......... :oops:

07-18-2005, 11:33 AM
Many gentle hugs, vintage! (and if you're vintage at 39, I guess I'm ANTIQUE!) :wink:

None of us here can diagnose, but I think you're on the right track going to another doc. You might want to go to a rheumatologist, and have the various tests repeated. Be sure to take a detailed history, and a list of questions. Give one copy to the doc, keep the other copy to ask your questions from, and for your records.

Many of us have been through several docs until we found one who would listen, work with us, and who could figure out what was going on. LUpus is notoriously hard to Dx, as are several related conditions.

One thing - you mention sun sensitivity. Be careful in the sun. Lupus and many conditions are worsened by sun exposure. Wear sunscreen and wear it properly. Wear long sleeves OVER the sunscreen. Wear a hat. One that is not loosely woven and has at least a 4" brim.

Let us know how your doctor visit goes, vintage, and keep in touch!

07-19-2005, 10:34 AM
Thanks so much for your reply , hatlady . I do have my medical records all of them , from the Rhemuy that first dx'd me , plus labs too . As for the sun I rarely go out , and if I do it's only for maybe 30 minutes or so , I were sweats most of the time because my regular clothes won't fit over my swollen belly , I get folks asking everyday when are you do :roll: , Last night was not good , my muscles in my legs hurt so bad , my hubby had to rub Icey Hot on them and even that felt like torture . Again last night I had the sharp pain in my right side of my chest , today it still hurts when I take a deep breath . My hubby doesn't understand why i'm so cranky all the time , so I told him that if your were in pain all the time day in day out , how would you feel ..... :roll: . Again thanks for the replie. Also I used Vintage as I feel vintage , i'm 39 but feel 60 and look it , 3 times this month I was asked if I wanted to get a senior discount :shock: . I'm not joking.

07-19-2005, 05:12 PM
More gentle hugs, dear!

As far as that sun - 30 minutes is TOO LONG if you're sun sensitive and not protected. Five minutes is too long without sunscreen, long sleeves and a hat.

I've learned that the hard way, my skin starts feeling icky almost immediately. Itchy, crawly, icky. If I take good care, I can avoid that.

Pain is so wearing. I never realized it until I had lupus. When it isn't in control I'm tired, exhausted all the time. I have so much more empathy now, I finally understand. The best I can explain it to people is to ask them if they remember how they hurt all over when they had the flu. Then think about that being a "normal" day, every day. Some finally "get it."

Hugs dear - if they ask when you're due, tell 'em Christman '07 and watch them look confused! :shock:

07-19-2005, 07:05 PM
I am glad you are going to a new doctor. Hopefully, that one will listen better and help you out. As far as the chest pains go, I too suffered from that for almost a year before someone figured out it was costochondritis. Has anyone mentioned that to you. It's inflammation in your ribcage and breathing in hurts. Also, I once suffered from pluresy, and when I breathed in that hurt as well.
Good luck at your new doctor

07-20-2005, 03:16 PM
Hi Niece!

Just wanted to say...welcome, and what a cute puppy picture!