View Full Version : Just out of pure curiosity.......
02-25-2009, 06:08 AM
Hello people of the forum,
I would like to know something from all of you as ive been thinking (i know, hard times) so i would like to know when each of you first flared, think back wayyy back to when you now realised your body started to flare from the lupus, just a breif discription of your history,
Il start, I was 8 i got a load of mouth ulcers it filled my entire mouth i couldnt eat nor drink, the drs did not have a clue what was going on with me, so i got given mouth wash which stung like bee (to put it politely), then as far as i know if went into remission until i hit the tender old age of 13 thats when the lupus flared again resulting me to have a seizure, then went into remission until i hit 17 when i got my 1st DVT, then went into remission for 10 years til i was 27 and got another DVT (same leg), then as far as i know it went into remission for 1 year then the rest is history as im still in flare country.
Im intrested in each of your breif discriptions of your life living with lupus, to see if i see a pattern,
02-25-2009, 01:37 PM
I think that I was around the same age with, basically, the same symptoms. Huge mouth ulcers as well as chronic, repeated infected tonsils. My first major flare (that I can remember) was in Jr. High with arthritic like joint pains that laid me low for weeks coupled with constant nausea and debilitating fatigue (I thought I was dying). I was always anemic and prone to viral infections!
Peace and Blessings
sick n tired
02-25-2009, 02:02 PM
I started having seizures when I was 10... but wasn't dx'd anything about lupus. After that I always had at least one or more bouts of bronchitus/ pneumonia a year and hacked and coughed all the way from October- spring. Joint pain..much neuro through the years...unexplained hives when childbearing and painless sores all down my throat. (I wouldn't have know I had them except I was about to have major surjury and the doc put it off until they were gone) With baby #5 nearly died...blood, protein, ketones in urine, Vomiting everything even water, i lost 35 lbs in one month while pregnant, needed transfusion because of serious anemia...kidney infections, etc...
The list goes on from one severe illness to the next..
02-25-2009, 04:16 PM
I'm an oldie. Though I had some fatigue for years, it wasn't until I was about 50 that I called my doc's office one day and said "something is wrong. I will be in the office waiting room in about 1/2 hour, and I'll wait until you can fit me in." Freaked out the office staff, they kept wanting me to make an appointment for 2 weeks away. "No, I need to see him today."
;^) By the way, I've always had GREAT service from them since. I want an appt, I get it. No questions asked.
Felt like I had the flu - so painfully achy and deadly fatigued for WEEKS. He had me do the aspirin and wait routine for a week. Then did tests. He is young - I call him Dougie Houser behind his back - and he'd had a great clinical rotation with a rheumy. So he put 2 and 2 together and did all the right tests, the first time.
I am one of the lucky ones....no messing around for years not knowing a dx, and was able to get a decent rheumy pretty quickly as well.
02-25-2009, 10:02 PM
I was basically a pretty healthy kid...don't recall any major health issues throughout childhood. I remember I did have an extremely serious case of chicken pox, but that was it.
My first flare was when I was 18, just out of High School and going to Court Reporting School. We had taken a Christmas Break at school and leading up to Christmas I first started having mild joint pains in my fingers and wrists of both hands. Thought it was because I wasn't practicing on my Court Reporting machine. Over a week period, pains got worse and swelling in my hands started. I ignored it. In the next few weeks I started having flu like symptoms...low grade fever every morning, sore throat, achiness and headaches. Fingers and wrists got so bad I finally couldn't make a fist anymore. My mom noticed one morning and new something wasn't right. She took me straight to my family doc who had seen me all my life. He had recently diagnosed another young girl with exact same symptoms, so suspected Lupus but didn't tell Mom and I. Just drew blood and ran a bunch of tests. Sent me home and ordered aspirin and bedrest. I went back a week later and he told me and my mom that I had tested positive for Lupus on several tests. We had no idea what it was...had never heard of it.
And that was the beginning of my personal roller coaster ride with disaster....Lupus. And quite a ride it has been. :(
02-26-2009, 04:22 PM
my first memory of lupus was about 27 years ago when I was in my late 20's. I remember haveing a terrible time with fatigue, exhaustion, and staying bed a lot. I was diagnosed with pleurisy, then later had a couple of bouts with "walking pnemonia". It was in 1996 when symptoms returned, and it was this past year (2008) when they got way out of control, and i was diagnosed (at age 56).
the wingless one
02-26-2009, 08:38 PM
My senior year in college I started having pain in my elbow. Eventually I went to a GP who said it was probably tendonitis which I chalked up to too much time on the computer. A few months later after wearing the wrist brace and cutting back on computer time I was still having a lot of pain off and on so I went to a Chinese medicine doctor who said I had dislocated my thumb and that that was what was really causing the elbow pain. A few months later I started having horrible joint pains in my knees, feet and ankles after I would go clubbing so I thought it was from high heels. I would literally stand up not realizing something was hurting and fall over from the pain of putting weight on my legs. After graduating and starting work things got progressively worse but I still wouldn't go see a doctor. One day my ankle would swell up, the next day half the fingers on my right hand would be so swollen I could barely brush my teeth or tie my hair in a ponytail. Finally I woke up in the middle of the night in so much pain I literally couldn't move. My then boyfriend (now husband) woke up to me crying because it felt like every joint in my body was inflamed. The next morning I finally gave in and decided I had to see a doctor. Luckily, I was very fortunate that my cousin who was doing his residency at UCLA told me to go straight to a rheumatologist which I did and even though my husband randomly picked him off of the insurance website he turned out to be one of the top rheumy's in the area. I called his office and his secretary had him call me on his lunch break and he felt so bad for me that he had me come in after the office closed that same day! A few months later I was in the waiting room talking to another patient and she was shocked because she said it normally took months to get a new patient appointment with him. After reading about all the stories of going years without a diagnosis I feel very fortunate to have been diagnosed within two weeks of my first doctor's appt. Thanks for starting this thread, I don't know if this is weird but sometimes I like to be reminded of how far I've come since I was first diagnosed, it helps me be thankful despite the trials I still face due to lupus...
02-27-2009, 03:38 AM
Thanx guys for all your responses thats great!
its intresting to see the pattern dont you think?
some of you from a really younge age, and quite alot of you from later on in life,
02-27-2009, 04:14 AM
For me it was just after i gave birth to my daughter Daisy...thats nearly 8 years ago now !
First off i had terrible gallbladder pains and after being admitted to hospital several times i finally had it removed:)
This kicked it all off, mouth ulcers, migraines, double vision, skin rashes, livedo...the list goes on LOL
Before this time at at 34 i had never ever been unwell and had only taken a handful of tablets in my whole life ! These were only for a hangover ;)
I will add though that im am nearly 100% sure that my mum died of something similar because she had the same symptoms as me....very sadly she passed away from a clot at age 34 when i was 6......
I think that this is another reason why my GP took notice of my symptoms. Although it did take 6 years to get diagnosed and for this i took the matter into my own hands and paid to see a proper consultant at London Bridge Hospital !
Not sure where i would be now if i hadn't have done that !
Interesting tread, thank you
Lov sarah xxxxx
02-27-2009, 09:59 AM
I was working in a drop in pre school. My first job in when I got in each morning was wash tables and highchairs. Then I put out the activities.The last two weeks of work I began to get weak and achey. I was having a difficult time getting up from a squat to the bottom cupboard where the activities are kept. My hands hurt more. My body was just deteriorating. I was not able to do my job anymore. On my last day at work they told me to just sit on the floor and be with the babies. I could do that but when it was time to go out side I needed help getting up off the floor and my arms were to weak to carry the baby and I had lots of trouble walking down the steps.
The next week I got the results of my test. I have Lupus.
02-27-2009, 10:54 AM
I was 17 and in my senior year of high school when I started having joint pain. It felt like I had sprained my wrist at first, the a couple days later my other wrist starting hurting, fingers starting swelling, knees, etc. Got very hard to get up and go to school, I was able to brush things off for a while until I finally broke down and told my mom what was going on. I was diagnosed by my pediatrican right away and the fun started from there. ;)
02-28-2009, 12:00 PM
I'm fairly new here but thought I would jump in on this thread.
My first flare that I KNOW was a flare: (several times in my past may have been, but this is when I was diagnosed so I know for sure)
I was 2 weeks out of surgery, my husband was deployed (on a submarine in the Navy), we have 4 kids, 3 of them have special needs, and my mom (whom I have a very tense relationship with) was here trying to help. Two of my children have autism, my youngest daughter with autism is also developmentally and physically delayed due to a stroke. My oldest son has Type 1 diabetes. It became too much for my mom and she bailed on me saying she could not deal with the stress of the medication and therapy my kids needed.
During this time I began running low grade fevers, my face broke out in what I now know is a "butterfly" rash, my elbow and wrist joints started to hurt, my hands and arms became covered in rashes, I was so tired I could barely function, my eyes started hurting and blurring up on me and then the topper....I lost my hair in about a 5 inch diameter circle.
I am incredibly lucky because my PCM took one look at me and ordered the right tests, and within 2 weeks I was at the Rheumatologist and had my diagnosis.
02-28-2009, 12:38 PM
Aged 34 i had just got back from my third trip from Tunisia. I had just got over two lots of what i thought was food poisoning from the previous trips.Now i had flu.
I had severe mouth infections and blisters on my gums and puss it was horrid. I had sores up my nose that wouldnt stop bleeding.I had flu 4 times. I caught chest infections, colds and then the insomnia started.I had chickenpox/shingles a few years earlier. Then i had a Pulmanary Embolism.I found it hard to get out of bed.Migranes and headaches, vision problems. Small tiny sores on fingers and feet which come n go.Ringing sounds in ears. Standing became a problem, legs and feet would go dark purple or blue and i was so dizzy like i was drunk.
My body began to hurt, aches and joint pains and numbness. My hair decided to join in.....and fall out.I think this hurt the most cause i hid behind my hair. As the years went on, the energy just drained away.Asthma kicked in, IBS and a bit of Acid Reflux for good measure lol :) More recently a triple lock jaw and tooth breakage.....just for the hell of it lol :) And today, my left arm n hand are numb.
Oh and ive not got lupus....they say its M.E / Chronic Fatigue Syndrome./Raynauds/Depress/anxiety/insomnia