View Full Version : What were your first symptoms?

04-27-2009, 09:46 AM
Hi there! Im new to this forum and I havent been diagnosed with lupus yet. Im in my medical journey to find out what is going on. But according to my best friend and my husbands grandma, I sound like I have lupus. My best friend has lupus and so does grandma Aline. Aline wasn't diagnosed until she was 55, and lived with lupus for years before finally being sent to a rhem who knew right away that she had lupus. I luckily have an appointment with a Rhem on May 11th because my general doctor cant figure out what is wrong and I haven't been in to see her since I realized that lupus seems to fit so well with my symptoms. My main symptoms now, are horrible body aches that seem to move constantly, most often in my shoulders, knees and especially my hands when it is cold(tho they havent turned blue yet, the pain can be excruciating). This all didnt start until February and since then its been on and off until last week. Its been constant pains now. At this point I dont even care what I have I just want the diagnosis so I can figure out what to do to help my body battle it. And I really dont want to have to wait years like my grandma did. Some days Im incapable of driving because of my pains, and its starting to get frustrating feeling like everyone just thinks Im being dramatic. But I cant exactly help it if I have to gimp around and Im NOT faking it. Anyways, sorry for the page long post, lol. Maybe I am venting a little :cute:

Im just curious what your first symptoms of lupus were and how severe?

Thank you

Angel Oliver
04-27-2009, 12:07 PM
Anxiety and depression,hair fell out then severe exhaustion with blue feet.Yet they say i dont have Lupus i have Chronic Fatigue syndrome.M.E.

04-27-2009, 02:14 PM
Hi welcome
My first symptom was a butterfly rash.
THEN i STARTED getting body aches and pains, fatigue, sore joints,
pleurisy. It took a bit of time for a diagnosis but just keep going to the dr.
Keep a record of your daily symptoms and take that with to your DR apt.
Hope you get some answers!


04-27-2009, 03:28 PM
Hello and welcome to the forum!

Sorry you are going through the diagnosing stage. Don't let anybody make you feel like you are crazy or a hypochondriac. Something is going on, they just need to find it. Something interesting in my family is auto-immune manifesting in different ways.

My first symptoms were joint pain, fatigue, and my thyroid stopped working.

Good luck and keep us up to date. Hope it goes real good at your appointment.

04-27-2009, 03:40 PM
Chronic fatigue with muscle pains in joints, especially when it's cold or going to rain. MAJOR hives all over my body varying on point of origin. Random airway swelling. This all starting when I was 12. I am now 22.

I truly hope you don't have lupus, it's not a great diagnosis. I hope you the best.

04-28-2009, 01:28 PM
My first symptoms were migraines, body aches, tingling in my extremities, dry mouth and eyes, and unbelievable fatigue.

04-30-2009, 03:09 PM
Wanted to say WELCOME and you are among friends here who are here to listen and help when you need it! Dont be sorry either for the length of your thread, you share what you NEED to and we will hear you!:cute:

04-30-2009, 03:53 PM
Just wanted to welcome you. I was told that I probably had Lupus for years before I was diagnosed. But I got real sick right before my diagnoses. I had joint paint fever and felt awful. I had real bad pain in the back of my neck. They thought I had meningitis and was going to stick a needle in my spine. I'm so glad they didn't do that.

04-30-2009, 04:14 PM
OUCH Becky!!! Im glad they didnt do that too!!!!!!! :wideeyed:

05-01-2009, 09:38 AM
Hmmm, my first symptom, I can't pin point it. But my Rheumy just told me that he thinks, that I had Lupus most of my life.
Age 5-Hepatitis
Age 11- rheumatic fever
Age 24- hemolytic anemia, hemoglobin = 2.6, plus I was 5 months pregnant
But I do remember always having joint pain.
Now I have lupus, RA,sicca,asthma,scoliosis and other stuff, they still have to name.


05-01-2009, 06:11 PM
Hmmm, my first symptom, I can't pin point it. But my Rheumy just told me that he thinks, that I had Lupus most of my life.
Age 5-Hepatitis
Age 11- rheumatic fever
Age 24- hemolytic anemia, hemoglobin = 2.6, plus I was 5 months pregnant
But I do remember always having joint pain.
Now I have lupus, RA,sicca,asthma,scoliosis and other stuff, they still have to name.


That's a good idea. Making a list of when you had certain things. I need to do that to try to figure out when my lupus might have started.

05-01-2009, 10:14 PM
my first symptoms were pain and swelling in my hands and feet, muscle aches all over my body, fever, unable to sleep do to pain, fatigue and joint pain.

05-02-2009, 08:47 AM
my first symptom (and actually my only noticeable symptom thus far) has been joint pain/swelling. it started last september. my hands and feet were the main victims, and sometimes it was so bad (especially at night) that i couldn't walk without help. my knees and elbows also became affected.

i'm constantly wishing that i don't ever come down with other symptoms (especially the sensitivity to sunlight because i live in southern california and this would be a problem).

05-02-2009, 04:28 PM
my first symptoms were SEVERE knee pain! i couldn't even lift my legs to walk, i would drag my feet along. and it would take me like 20 minutes to walk up ONE flight of steps. then came the swelling, along with the pain and swelling of my ankles/feet. then my fingers and wrists came after that.
also, i lost my appetite completely, which was WEIRD for me, cuz i swear im the fattest skinny girl ever! haha

uhm...then that i was freezing all the time, and ALWAYS sleeping. cuz usually i am a big ball of energy [[im a cheerleader, so just imagine that ahah]] im always loud and hyper. but i was like a zombie, i would just sleep. sleep. sleep!
i'd get up for school, sleep on the bus, sleep during class, sleep on the bus home, sleep when i get home, all the way til it was time to get up again.

05-04-2009, 01:19 PM
Yeah Ria! Those were mine too! My hubby and i tracked it back to as far as 11 yrs ago when my bloodwork first time ever showed my arthritis! :wacko:

05-08-2009, 04:52 PM
Nausea, weight loss, joint pain, extreme fatigue, vertigo, and later, sun sensitivity. Took years to get a diagnosis. You are not a hypochondriac. Take Pam's advise. Make a list of symptoms, duration, etc. Keep a journal.Take this to your doctor's appointment. Don't stop until you get some answers.

Wishing you well,


05-08-2009, 06:34 PM
Well said Pearl! DONT STOP is GOOD advice!! It might take a while but dont get discouraged! Keep on fighting the fight!!!:swordfight:

05-12-2009, 02:09 PM
Some Dr. said I had the butterfly rash on my face and I was just getting sick all the time with viruses.

sick n tired
05-12-2009, 02:27 PM
I am with Debbie...can't tell what the first ones were...I also had hepatitis but when I was in 2nd grade...numerous bouts with bronchitis and pneumonia while I was growing up...age 10 started having seizures...not totally sure why...lost a few babies, threw a clot to my lungs with 1 ...and the list goes on...

I wasn't dx'd until 2007, though...all stuff was thought to be in my head...for the last 12 years I have been complaining with pain, extreme fatigue and starting a few years ago, hair falling out...(it has started doing that again)...Depending on the day and doc right now I have lupus, or ms(neurologist thinks) or CNS Lupus or on a good week nothing...I tell you this so you can see how diverse these docs are...mine don't like to work with each other...I like my rheumy, but for some reason the other docs don't....so they never concur...case in point, if Rheumy suggests something esophageal then my gastro has to say that it isn't what he thinks.,,,but I am just rambling...sorry

Just make sure that you don't stop with one doctor if he doesn't work with you...it seems to be the luck-of-the-draw on if you will get a good and sensitive rheumotologist...my GP says that in med school he noticed all of them were weird and aloof as well as rude...(just an aside):yes:

05-13-2009, 10:23 AM
Boy isnt that true sickntired!!! The drs can be all over the place about each other as well as your symptoms! :grumpy:

05-13-2009, 10:39 AM
Just make sure that you don't stop with one doctor if he doesn't work with you...it seems to be the luck-of-the-draw on if you will get a good and sensitive rheumotologist...my GP says that in med school he noticed all of them were weird and aloof as well as rude...(just an aside)

Yes this is so true !!!!!
All Of Them Are Weird Aloof And Rude !!!! :hissyfit::silence2::thumbs-up::raspberry1:

05-13-2009, 11:23 AM
This is what i want to do to them all:chairshot:

sick n tired
05-13-2009, 02:02 PM
Becky and Lucky you are so funny....Drs can be everywhere and it gets so tiring to try to figure things out....sometimes I think I have to do it myself...

05-13-2009, 02:09 PM
Heck yeah to that! WE DO have to figure IT out for ourselves! Thats the ONLY reason why im as far along as i am in this process! SHOOT, and thats NOT THAT FAR! LOL You would think i would be crossing that finishline any time now, considering my symptoms go back as far as 11yrs ago! Its in my blood work then too! I still am having a hard time getting someone to listen! LOL I have 2 drs out of the many ive seen and am seeing that are on MY SIDE and KNOW im sick. Pretty sad. BUT IM FIGHTING THE FIGHT! WOO HOO! :vader:

05-14-2009, 03:04 PM
Sorry to hear about all of that. I may have had lupus for a while before I was diagnosed, but at the time of my diagnosis I had a butterfly rash, extreme fatigue, loss of appetite, and my eyes had swelled almost completely shut. I ended up in the hospital, but that's mostly because they couldn't figure out how bad the kidney damage was. Anyway, I wish you luck on your way to diagnosis.


05-14-2009, 10:39 PM
My first symptoms at age 18, were joint pain in my wrists and hands only. Over the course a few weeks it got worse and they stiffened and swelled and I couldn't make fists out of them. At the same time I developed Flu like symtpoms, with headache, sore throat, low grade fever, aches, and just thought all I had was the flu. When my mom saw my hands one day, she took me straight to the family doctor that had seen me since I was a baby. He was such a sweet gentle man.

I was fortunate that he had recently diagnosed another young teenager with Lupus, and he recognized the symptoms and did a bunch of labwork. He didn't say anything to my mom and I, didn't want to worry us. He told me bedrest and aspirin 4 times a day for the swelling and joint pain. A week later when we went back, he told me and my mom that I had Lupus. I had tested positive on every test or indicator. It was pretty devastating, for sure.

Wow...that was a long time ago. Anyway, those were my first symptoms.

Lori :wavey:

05-15-2009, 11:25 AM
Bittersweet huh Lori? You KNOW whats wrong and your dr BELIEVES you and diagnoses you, yet, it sadens you to HEAR what IT is and to KNOW you HAVE it. Im just happy for you to have had a good dr my friend!:cute:

05-17-2009, 07:03 AM
I've had symptoms for so long, I don't know where to start....back and neck pain, seizures, constant fever, joint problems, constant fatigue...it all started when I was 15 years old. It's taken them another 15 years to finally figure out what was wrong with me. I actually had a negative Lupus test a few years ago. My GP of 15 years was convinced that I had Lupus...but the test came back negative. When I kept getting worse, I went to a rheumatologist. Two rounds of bloodwork later, the diagnosis was official...I have not only Lupus, but Psoriasis and Rheumatoid Arthritis. Triple-whammy.

I just can't stress to people enough NOT to ignore your symptoms. I was told for YEARS that I was a hypochondriac, that I obviously had no pain tolerance, that I was just lazy and that's why I wanted to stay in bed all day...it was hell on earth. While I never "wanted" to have Lupus, I wanted ANSWERS. I wanted validation that my symptoms were real. Now I have the answers I've sought for 15 years...

05-17-2009, 10:40 AM
That's how I feel. I want someone to listen and tell me its not all in my head, I am tired of saying I just don't feel good, or as I have called them my "episodes"
didn't know they were called flares till this week. I do not want this lupus either, but if that is what I have at least it has a name. And now I know that there is medication that can help with the pain, I mostly was taking over the counter stuff (lots of it) I have a had a few scrips over the years. I can only wait for the test results.
Peace and Grace,

05-18-2009, 09:12 PM
My first symptom was raynauds when I was in high school, but didn't think it had anything to do with Lupus. then about 10 years later had surgery due to hip joint pain, then finally I had a blind spot in my eye and got diagnosed with retnal vasculities which lead to my lupus diagnosis. Left me thinking I had hip surgery for nothing because they still hurt so much.

05-19-2009, 02:03 PM
AWWWWW, sorry that you're STILL in pain Maggie:no: I wish you the best and i hope you have some GOOD days ahead:cute:XXXXXXXXXXXXXX