Joined: 04 Jul 2005 Posts: 2 Location: Houston,TX usa
New And In Need Answers?? Posted: 07-04-05 09:06am
:shock: I am in shock. I think reading
your post made me feel like I am not
alone. I am new here and have just been
browsing looking for the right time to say
something.
All your symptoms I too have been
experiencing. You didn't mention any
itching or skin rash? I have them awful.
My arms are beginning to look like
hamburger from so much scratching. The
sores are like little holes with raised
edges. When I scratch, instead of alot of
bleeding, I have clear stuff like that of
a blister ooze out.... Gross hugh?
I am 33 and had to have unexpected open
heart surgery last september to replace a
damaged valve. They told me the valve
appeared to be damaged from a disease or
rheumatic fever. Both of which I never
had. Over the past two months since some
lab work showed positive ana and high
protein in my urine, I think we are
leaning towards a diagnosis of lupus. I
need to find a rheumy doc now so I can get
a definate diagnosis and maybe they can do
something to make me feel a little better.
List of symptoms>
*raised rash on my forehead thought they
were wringworm/s. Size of a quarter began
in jan. 05. Also itchy bumps on forearms
that are the size of bites,they feel ho
sometimes inflamed with pain to the touch
and then comes severe itching.
*fatigue- noticed in feb. 05 and has
progressed. I can't drive more than 5
min. I fall asleep on the toilet, in the
office chair(once I fell to the ground),
standing up in kit(husband found me with
eyes closed). Any time I get still I fall
asleep but jerk when going to sleep. I
never wake up feeling rested and like I
had a full nights sleep. I also wakeup
wet from sweat. Staying busy and energy
drinks is what keeps me awake.
*chest pain and short of brath began in
early 04. Finally doc said open heart
sugery needed immediatley to replace
stenosed mitral valve and releive pressure
on my lungs. Done in sept 04. Still have
weird pains when I breath deeply.
*tounge is always raw and hurting.
Sometimes it gets like ulcers that are
painful. Teeth have become so sensitive
that anything cold sends chills down me
and hurts really bad. Sugary items are
painful to eat. Like my mouth is full of
cavities.
*swollen lymph nodes in my neck and a
couple under my arm.(not painful) but my
throat stays sore in a weird way.
Sometimes there is something stuck and it
feels awful to swallow.
*i have started to notice thtat the sun
makes me more tired and an overall uneasy
feeling of exhaustion. I also tend to
itch more.
****** :? Sorry I just cought myself
asleep :? ******
*certain areas ache severly . Tailbone
has been inflammed and very painful for 2
years. I moan in pain from sitting to
long. Swollen huge painful joint on my
big toe. Bottom of feet hurt often.
Knees, wrist and fingers hurt often.
Sometimes my fingers go numb and tingle.
*abdomin pain sporadically appears and is
so bad I can not move or stand straight.
I also swell in my abdomin. I am a small
frame person of about 112 pounds and
sometime the swelling looks like am
pregnant and my weight will increase by
about 5-7 pounds.
Sorry to ramble on about me but I thought
it might be helpful to know if any of us
experience the same thing.
I have so many questions.I don't really
want to go to the doc, I am sick and tired
of being sick and tired. I do know that
ultamantly I will never get better without
seeng a specialist.
Please anyone reply with any advise or
tell me what you think about the way I
feel.
Pj ...I hope you start to feel better and
also I hope you get the answers you are
looking for. Email me any time and we can
maybe begin to help one another
can anyone tell me how long a flare last
and when I might start to feel better?
What kind od treatment is to be expected
and ehat is the best treatment?
Thank you,
angie
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kait77
New User, Becoming EHEALTHy
Joined: 29 Jul 2005 Posts: 13
Hi Posted: 08-03-05 16:00pm
Sorry to hear about your problems I have
some advice. 1) take pictures of all
rashes 2) see a dermetologist as well as a
rhuemetologist 3) find a kidney specialist
too 4) tell your doctor about the lung
pain on a deep breath (could be pluersy or
something else but likely requires
treatment) 5) the doctor may or may not
diagnose right away depends on how
cautious they are 6) you will likely have
to take plaquenil/steroid/chemo drugs or
any combo of the 3 depending on kidney
involvement and disease severity. I am
not a medical professional but this is
what I learned in my search for treatment.
Also otc anti-inflammatories and
accedominefin can hurt damaged kidneys as
can alchohol.
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ALTINKUM
New User, Becoming EHEALTHy
Joined: 05 Sep 2005 Posts: 5 Location: ENGLAND
Question Posted: 09-07-05 10:07am
Hi,just joined,came across your message,i
was born with a pulmonary stenosis,i will
eventually need heart valve replacing,the
one leading to the lungs,i have a question
do you know if your new heart valve is
silicone based,just a thought,because your
rash sounds like uticaria not sure how to
spell,this is large hives feels inflamed
then itchy,i have suffered with this
myself after having an alergic
reaction,did you start having rash after
your heart surgery and if so how soon
after?Maybe you are allergic to food types
ie.Wheat,dairy,these can make you feel
extremely tired and make your stomache
bloat,if you do see a dermitologist sorry
cant spell,they still may not pick
allergies to food up,you need to keep a
diary and oliminate foods then introduce
them back to your diet gradually.Oh by the
way I am from england I am 34 also
petite,61/2 stone and have my two
beautiful boys.Hope you are feeling a
little better now.Goodluck..