Post Edited (Leta) : 6/2/2007 3:30:28 PM (GMT-6)
Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
Co-Moderator: Lupus and CFS Forums
Good Idea! My name is Jen and I am 25 years old. I was diagnosed with Lupus when I was 17.
I only joined the forums awhile ago, but I'll re-introduce myself, anyways .
My problems began when I was in grade 11. At the time I was taking Tetracycline (for acne, I think) and had only been on it for awhile. I remember warming up for a volleyball tourney I was playing in one early morning and my fingers kind of felt stiff. I found this to be odd as I had never been one to feel stiff or sore in the mornings. Anyways, I didn't think much of it. I had decided to go off the Tetracycline because it wasn't doing what I had hoped it would. A couple months later, I decided to give it another go. I took ONE PILL of Tetracycline and all of a sudden, my hands and fingers swelled and became VERY stiff and VERY sore. My Mom took me to Emerg, where the doctor I saw was baffled. I was crying because I didn't know what was going on with me. Eventually, all my joints became swollen and sore and stiff.
After seeing my family doctor and getting tests done, I was referred to a rheumy, who did more tests. Finally, in the summer before I was about to enter 12th grade, I was diagnosed with Lupus. I was put on the appropriate meds. Luckily I didn't miss much school, but I did have to stop playing volleyball and all the other sports I was in. I couldn't partake in Phys Ed, couldn't workout or do anything active - I was just too sore. I never told anyone about my Lupus in High School. When people asked why I was walking "funny" or why I went down the stairs so slowly, I would make up some excuse like, "Oh, I hurt my ankle the other day" etc. I remember feeling like such a "dork" because my boyfriend had to zip up my jacket or that my Mom had to sometimes dry me off when I got out of the shower, because I couldn't do it myself.
I took one year off after highschool. I think that was the best for my health. I was still in pretty rough shape and I think going straight into College would have been too much stress.
By the time I did go to College, my health had significantly improved. I was still on all my meds, but was able to move A LOT better. I felt a lot better. Eventually (6 years after my diagnosis) I was off all meds and feeling "perfect".
In January of this year my boyfriend and I left to SE Asia. I had brought some of my Lupus meds with me "just in case". I didn't think I would have to actually use them...
I have never had problems with the sun until February 2007. Everyday my boyfriend and I would lie on the beach and suntan. Desite wearing sunscreen, my Lupus "came back". My wrists started feeling a bit stiff. A couple days later the stiffness moved into my elbows as well, until by the end of March, my whole body was stiff and achey. I was immediately in contact with my rheumy back at home who put me back on my meds. I was able to get all the required tests and meds I needed, here in Asia (Thank Goodness!).
Now I am currently on the meds that are in my signature. I'll admit, I'm REALLY BUMMED that my Lupus came back. Maybe it wasn't really gone, though. Maybe it was just hiding - waiting to resurface when everything else in my life seemed to be going perfectly. I can't let it bring me down, though. It stole much of my youth already and I'm not about to just give up!!
Hi there - Great idea!!!
I am a 41 female, happily married with no kids (I have another condition that will not allow me to concieve - naturally anyway).
I too was very active and outgoing - always entertaining etc. about 5 years ago, I started feeling tired a lot and I had extreme joint pain. I would need assistance to stand up at times, couldn't make a fist, had swollen, red hot joints and I couldn't make it up the stairs without stopping at the top to rest because of the pain in my legs. My GP ran some tests and told me what I didn't have but asked if I wanted to get to the root of my problems and I said yes.
I went to a Rheumy and a Vascular Surgeon about 3 years ago. Initially, I was diagnosed with Raynauds. Next, hardening of the arteries (that one makes me mad because I don't eat red meat, I watch my diet and I have never had problems with my cholesterol but apparently, its in my genes - lucky me!!). Next came the pleurisy (1 1/2 years ago) and thats when the Rheumy started leaning towards Lupus but wouldn't give me the diagnosis at first. My ANA continued to climb and I was finally diagnosed (I've known for a while as I'm sure a lot of us had before getting officially diagnosed). To be honest, I was happy to get a diagnosis because it did explain a lot and I wasn't losing my mind - I really didn't have any "get up and go" somedays. I find that part the worst - the fatigue.
I am actually going to start my meds tomorrow (was supposed to be a couple of months ago she had to cancel my appointment and the next available date was tomorrow). At my last appointment, my rheumy wanted to run one more set of tests (I've already seen her report to my GP). I am afraid of the steroids to be honest (I don't want to gain weight!!!) but if it will help with the pain, I'll stay away from the bread... lol
I have my own business so I too work full time and that can be difficult. My husband is very supportive now (and I stress now..lol). This forum has helped him to understand me a lot better. When I do things around the house, he truly appreciates the effort involved and always tells me not to overdo it. We are working towards me retiring from work... :)
I have a great life and I always try to stay positive!!
Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD
Hi my names carol, I'm a widow. I'll be 50 in 10 days. (sob). I have a son that is xmilitary. he's divorced but has 2 baby girls. He's 26. my g-babies are 7 and 4.
I was actually being treated for COPD when they started running tests which indicated possible lupus. These were done by two different pulmonologist. They both just said it was hard to beleive I could have copd in my 40's to the point where I needed to be on oxygen. I refused to go through any more tests to find out about the lupus. I felt it was enough to deal with copd I didn't want to hear about anything else. Plus I figured if lupus was a problem I'd find out sooner or later. ( I was stupid).
Anyway I felt sick for years. no energy fevers in and out of hospitals. Finally I moved to oklahoma. I didn't have a regular doctor yet and of course the move set me into what I now know was THE FLARE FROM HELL. Moving to oklahoma actually was a God send as far as dealing with lupus. Every doctor I went to mentioned lupus and ran tests coming back with things like anemia, high sed rates, possitive ana's. I couldn't figure out why every doctor was checking for the same thing since I never had mentioned it. Well what I finally discovered is that oklahoma has a large population of native americans and a large population of us have lupus. So doctors are more trained to see this out here. I have read native americans are between 3 and 10 times more likely to have lupus than european americans. You'd think they would have better rheumy's than but NOOOOOOOOOO! Anyway, my internest saw the (spider veins) on my chest and ask if she could look at my back. My back has than really bad. all the time. at that time my knees to my toes were bright red and swollen. My feet were bleeding on the tops of them from being so swollen they split. She sent me to a rheummy that was a 4 hour trip and he was a total jerk. He didn't tell me anything but told my doctor it was lupus. I'm not satified with his diagnosis. I want somone younger someone that will talk to me and explain things to me. My internist is taking care of all my needs right now. but she said when i get my insurance straightened aroundshe wants me to get a new rheumy. So that's where I'm at right now. I know I left lots of gaps in this but I did the best I could considering it's 4:30 in the morning LOL