Mine started young as well.
I can remember being in tears from joint pain and the doctor always just said "growing pains". They always generally happened at night or in the morning or whenever it was gold.
I had an unusual amount of 'lung infections' for no apparent reason. I had trouble concentrating and hearing, the doctor just said I needed to pay more attention in class and it was all in my head. I was always dizzy but the fatigue came on gradually and more so in my 20s. I was very sun sensitive and one day they made me do the cross country... I came back covered in a rash, literally just like the molar rash on your face but it wasnt just on my face, it was all over my chest and back as well. Just from being in the sun for so long. My mum didn't even take me to the doctor. My mother was never a good mother at all, she was rather neglectful and when I finally seriously came to her one day and said I had a problem... she LAUGHED IN MY FACE and said "Oh woe is you, you poor hard done by thing, life is terrible when you are a kid and dont have to pay any bills, you poor thing." I will never forget that. I think I might give her the same attitude when she is old and can no longer support herself and needs me to help her out.
I was thought to have developed asthma because I had sore lungs a lot.
In my early 20s it started getting worse... the doctor ran all kinds of tests which included urine and blood tests that came back with high esr and my urine had protein in it... the doctors diagnosis... 'bladder infection' and put me on antibiotics. I went in because I has dizzy and it was getting worse and I had terrible pain in my elbows. His explanation for the sore elbows was carpal tunnel! LOL So I had a bladder infection which I had no symptoms for and carpal tunnel and the dizziness went unexplained. Of course the antibiotics did nothing. I had no idea about lupus at the time, I thought maybe I just had some inner ear issue. When I went in for sore ankle and knee joints with occasionally hip joint pain, the doctor said I was overweight and that was the cause of my pain. He told me to lose weight. I was 5foot8 and weighed 73kgs, I was well within normal weight range and had I even been out of normal weight range, I would have had to been significantly obese to at that age have joint pain from weight! He got me a blood test which came back borderline thyroid deficient so he put me on thyroxine, but it did nothing at all so I stopped it and declared my doctor an idiot. Of course thyroxine at that stage would have done nothing, because I still had untreated lupus! I wish I had known about lupus back then. It probably would have prevented all the trouble I had when I had my daughter which ultimately provided my diagnosis. I hadn't heard of lupus until it crossed the rheumatologists lips.
It was all so fast, my first rheumy visit just out of hospital from having my daughter (where I had a PE). My physician had an inkling and had run a bunch of tests. He gave me the results in our second and last appointment... he said to me "I am sure you have something fairly uncommon and mostly seen in 40 plus year old women. I want to make certain because you just seem so young, so I am sending you to a Rheumatologist for diagnosis. Did you want to go public or private?"
It wasn't long before I was seeing a rheumy, I didnt know what to expect. He asked me a few questions, about my facial rash and joint pain. If I ever experienced swelling. About two minutes after I walked in he was telling me this: "I have been speaking with the physician, we have done a number of tests and although it is highly unusual for us to give such a certain diagnosis so quickly we both agree you have something known as systemic lupus erythematosus. But its no big deal, people live normal lives with it all the time. There are even famous footballers with this condition ((he said with a sly smile LOL)). You can work and play sports and enjoy life like anyone else. We will start you on plaquenil right away and if you need pain relief I recommend ibuprofen. Any questions?"
I remember the part about the footballer so well... because I wonder to this day who the famous footballer is that has lupus and doesnt want anyone to know about it... lol I also remember asking no questions... because who ever can think to ask questions in such a circumstance?
Fatigue that won't go away should be part of the criteria of Lupus or any other autoimmune condition since it is so well known to cause it. Mine was so overwelming, that I couldn't work, stayed in bed, I couldn't even keep up with my housework, barely got out and did anything. It's been the most horrible thing I have ever had to face. Plaquenil and Imuran is helping that tremendously. I know those medications wouldn't work like that for me if this wasn't an autoimmune problem.
My doctor thinks I may have had RA and SLE for a long time already but when they finally found it I was 22 and I had just had surgery to fix a finger on my right hand that was stuck down due to swelling. After that it started spreading to every joint in my body and the blood tests confirmed I had some autoimmune diseases.
Two childhood issues lead me to believe my first symptoms may have surfaced around the time I began menstruating? First of many dermoid tumors were surgically removed when I was 13. 28 surgeries later, including a complete hysterectomy, followed by a very famous Clinic performing a surgery for ovarian remnant tissue surgery, which left me with a neurogenic, spasmadic, incontinent bladder and neurogenic colon.
The other issue that stands out, my hands always hurt like heck when I got something out of the freezer. Back in those days, one of my chores was keeping the ice tray cycle moving.
Then in my early twenties, weird sun-sensitivity issues began when vacationing in sunny locations like the Bahamas--6" circular, open raw rash on leg and 2" circles on temples. In AZ and FL, for lack of a better word, SEVERE headaches after sun-bathing for less than an hour.
The last 4 surgeries were in 1989, tossed me into a Lupus flare that had 60 different symptoms. Two years of famous clinic exams beget no diagnosis other than Dr. notes that I was crazy. A female Des Moines, IA dermatologist diagnosed the SLE Lupus and referred me to an excellent rheumatologist.
I seriously could have written this myself. Even including the cheerleading :)
Originally Posted by ritzbit
However I was just diagnosed at 25 after a lesion of Pernio as a result of Raynaud's. Now my symptoms are just starting to develop. Fatigue has always and probably will always be my biggest complaint.
mine came on gradually..I didnt feel quite right..mainly it started with the malar rash on my face..then pain in my legs/feet,back,etc..lately i've noticed memory problems..your symptoms will depend on where in the body lupus affects
My symptoms began when I was about 11 years old. I was constantly complaining of joint pain. We went to a pediatirc rheum. in Miami and my bloodwork had an elevated ANA... Can't remember the titre or pattern.. He thought it was juv. RA. He said with time, more symptoms would develop if there was any hint of any other AI diseases.
And, so it did. I started having neuropathy, fatigue. I started to become less active due to the pain. Every once in a while I'd get blood work done, and it came back normal.. So no one did any further investigation.
About 2 years ago (I was about 18) I started developing more symptoms. I became somewhat photosensitive, getting rashes while out in the sun. My joint pain was getting worse. The neuropathy and 'zingers' were becoming more frequent. I also started having a heart murmur.
Then, things got worse. I got pleurisy about a year ago, and for about a whole year, I was told by numerous clinics, docs, and chiro's that it was just costocondritis. Then it was shoulder bursitis. When I started getting serious rashes that created little hemmorages, I finally saw a doc and got more blood work done. BOOM! My ANA was very high and it had a speckled/homo pattern. I also had high levels of RNP and scl-70 (pointing to MCTD or scleroderma). I saw a rheum and he diagnosed it has pleurisy. I started high dose pred. and resolved a TERRIBLE bout of pleurisy that lasted a whole damn year!!!
this recently happened to me. i was told i had mono, and when tested again it wasn't positive. i thought i had it when i was younger (like 8 or 10 years ago) and so i wasn't sure how i got it. that and i'm in a committed relationship and my boyfriend had it before in his life/it wasn't currently active in him. i didn't realize it could cause a false positive. wow.