Hi all, new to the forum here. I think I
have lupus. Warning... Long story
follows:
i'm a 27 yr old female- my first symptoms
occured when I was about 12- I got searing
chest pain that was diagnosed as simply
'pleurisy' after chest xrays, ekg, and
blood tests to see if I was having a heart
attack. Anti-inflammatories helped and I
took narcotics for the pain. The episode
lasted a few days and got progressively
better during that time.
From the time I was 12 to maybe.. 20 or
so, I had maybe 1 episode like this every
couple years. The "l" word was first
mentioned during a particularly bad
episode when I was 18. I had the
pleuritic pain and pericarditis and the
doctor could actually hear the linings of
my lung and heart rub together when I took
a breath. I had a positive ana at that
time but I was assured that it probably
wasn't lupus and not to worry about it.
In the past few years, the episodes i've
had have gotten more frequent and more
severe. The only thing I could find in
common was that they happened before I was
scheduled to travel and/or kinda stressed
about something. I had a really bad one
at 25.. I could feel it coming on for a
couple days before it got bad... It
started the day I was driving down to be
with my (2nd) cousins while one gave the
other a kidney (ironically because lupus
had wrecked her own kidneys). It was bad
for a couple days, then got progressively
better, lasting maybe a week total. The
pain in my chest was so bad that I was
hysterical and almost passing out, and i'm
not a wimp.
Sometimes I have like mini-episodes, where
i'll feel it coming on, but then it won't
get really bad and only lasts for a couple
days. I've seen multiple doctors about
this and have had many trips to the er.
Several times i've been told that I might
get something like lupus later on in life,
but it hadn't presented itself completely
yet. Frustrating, to say the least..
To have such pain and have there be no
apparent reason for it.
Most recently, I was in las vegas at the
end of april. I was laying out in the
sun (which I hadn't done since the
previous summer), and during the second
hour, probably, I started getting a really
stiff neck. I thought it was because I
had my head turned talking to someone, so
I got up and stretched it and went inside.
Well, within half an hour the pain had
radiated down into both my shoulders, my
upper back and chest. I was having a
hard time breathing and the pain was
severe. I went to the clinic at the
hotel I was staying in.. The doc gave me
a shot of some heavy duty
anti-inflammatory, which didn't really
touch it, which was concerning because
that had helped in the past. I ended up
going to the er and getting pumped full of
morphine, which was fun, but still never
took the pain completely away.. I just
didn't care about it as much! It took
probably a couple weeks for the pain to go
away completely.
Then, also, a few days later, I started to
get these little red sores on my face and
neck. I thought they were pimples at
first, but they weren't. They lasted a
few weeks (the ones I had tried to squeeze
lasted longer!) and then went away. I
also have two clots in the vein in my
wrist where the iv went in. I've seen a
doc about that .. She said it was
strange but she wasn't overly concerned
about it. I have long hair and have
always shedded, but since april I am
losing insane amounts of hair daily.. I
think it's starting to look thinner now.
And my eyes are constantly bloodshot.
Visine helps but not for any length of
time.
A few days ago I was walking around
outside.. I was cautious about being out
in the sun so I was slathered in sunscreen
and wore a visor, but the next morning I
woke up so stiff and sore, and now I got a
sinus infection, out of the blue, and i'm
tired, grumpy, and feel like I got run
over by a truck.
Let's see, what else. Oh. My hips are
sore regularly.. Esp when i've been
sitting or walking for long periods of
time, and my knuckles in my fingers are
always sore when I bend them. I do get
reynaud's once in a while during the
winter in my fingers and toes.
So... After this very long story, i'm
thinking I should revisit this whole lupus
thing and go through all the tests and
crap again. I defintely don't want to
have it, but at the same time it would be
nice to have a reason for these 15 years
of mysterious episodes and weird symptoms.
I'm even considering staging another
episode.. Laying out in the sun to see
if it comes again.. Or taking alfalfa
supplements, which i've read can cause
flare-ups in people with lupus.
I feel like i'm obsessing about it now and
I need to do something. The only bummer
is that I don't have very good health
insurance right now. Hopefully i'll have
a group policy within a couple months
though.
Any thoughts/comments/suggestions would be
greatly appreciated.
-erin
|
laura1980
New User, Becoming EHEALTHy
Joined: 25 Jul 2005 Posts: 3 Location: Palmdale
On the Same Boat Posted: 07-26-05 20:37pm
I'm also 25 and 4 years ago I was
diagnosed with lupus. My symptoms were
different, I had swollen ankles, knees,
knucles, and wrists. I was not able to
walk especially in the mornings, I would
literealy stand then fall. I was unable
to drive, write, clean wash dishes, or
pick up my little girl!! After the
diagnostic the doc gave medications and
send me with a reumotologist. After only
a few pills the symptoms went away. I do
however still feel aches on my ackles and
wrists and my right wrist has a bump that
occationaly hurts. I read that sometimes
it could take years before you could feel
any thing again. So I took anothe blood
test and the results came back neg my
doctor said not toworry and that I
obviously did not have lupus. It has been
4 years and I am hoping that the
diagnostic then was wrong.
|
kait77
New User, Becoming EHEALTHy
Joined: 29 Jul 2005 Posts: 13
Wishing You Luck Posted: 08-03-05 15:48pm
I am 28 and had symptoms from age 12-13.
I have had repeated episodes of pluersy,
one episode of pericarditis, repeated
miscarrage, 2 of my children died in the
first few weeks after birth, swollen
hands, feet, knees, etc. My joints hurt
constantly, I have the malar (butterfly)
rash, positive lupus anticoglutant,
positive anti phospholipid antibodies,
weird cbc results, abdominal pain that
doubles me over and has no explination, my
hair falls out, sun makes me sicker, I am
constantly thirsty, I have weird rashes
all the time, I itch all the time,
compression fractures in my spine, thining
bones, evidence of arthritic change in my
feet, I could go on for a week like
this.
I was diagnosed a little over 3 months ago
after being told nothing was wrong for
years. All I can say is had my ana been
positive I would have been diagnosed about
4 years ago because that was cited as the
reason I couldn't possibly have lupus.
Yet here I am with reduced lung function
and joint damage and still suffering. The
medication helps some but not a lot.
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