Joined: 07 Jan 2005 Posts: 4 Location: Sebring, Florida
New to Lupus, Need Sympathy Posted: 01-07-05 12:15pm
Hi everyone. I am 28 and was recently
diagnosed with lupus and although i've
read alot, basically there are more
questions than answeres. Here's my
story:
at the end of my third pregnancy I
started feeling pain in my hands and
thought it was just edema, also in the
last trimester I broke out in a rash that
looked similar to chicken pox (which I had
for the first time 2 years prior!) after
my son was 2/26/04 I asked my
endocrinologist (i've had a thyroid goiter
for over 5 years now, but no thryoid
problems) and was told no medicine until I
quit breastfeeding. He was a very nice
man and wanted to make sure that the baby
didn't get anything he didn't need and I
appreciated his opinion. But after 5
months I decided that it was gettion too
painful to take care of my 3 year old and
5 year old well (and I was afraid I would
wake up in too much pain to take care of
them at all.) I spend a lot of time alone
with the kids because of my husbands job
in ems. So I weaned my son, went to the
dr and got a prescription for blood work
and bextra and got some samples. Then
everything was disrupted by the hurricanes
(i lived in punta gorda at the time) and
left the state with my kids to visit
inlaws and wait out the worst of the
season. I could not reach the dr on the
phone and finally instituted the help of
my twin sister (i lost my script too so I
just had to suffer) and found I had an ana
of 360. It has all snowballed since
then. I have a rheumatologist where we
live and the bextra does little or nothing
to help. She has done many tests that
have confirmed lupu and I had my 3rd visit
the other day and complained to here of
fatigue and pain. X-rays showed evidence
of the inflamation (by reduced bone-gap)
and she seemed only concerned with my
knees. She said she couldn't do anything
for the inflamation, but could give me
some more pain killers for which she
prescribed darvocet. :? One of the
weaker strong pain killers out there.
The lupus symptoms seem to worsen month by
month and I have had a headache for 4 days
(i get migraines so I just took a butal).
Dr seemed unconcerned about headache.
In anyone's experience(s) is this typical
of dr treatment for lupus patients?
Anyone have any ideas how to get over the
hurdle of fatigue. My kindergardener is
missing a lot of school because I just
don't have the energy to get up and get
him (as well as myself and his brothers)
dressed for school and take him in (the
bus doesn't run to our house because we
are too close to the school.) the brain
fog is really messing me up too! I gave
the baby a bath then an hour later
wondered why he wasn't wearing a diaper
when it occured to me I had forgotten to
put one on him! :shock: lol! Thanks
for sharing your experiences with me, lisa
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BLUE4ME
New User, Becoming EHEALTHy
Joined: 17 Jan 2005 Posts: 28 Location: TENNESSEE
Brain Fog.. Posted: 01-22-05 00:04am
Well at least you are not trying to put
the cereal in the refrigerator and the
milk in the closet..
Ha I laugh at my self sometimes and say
im loosing it... Cause several times ive
tried to put the milk in the closet...
Maybe I have to much on my mind.. Or just
not stopping to think.. But I think we
all somewhat do this brain fog thing..
I hate it .. I have trouble
concentration, I forget, I write it down
and still forget.. Not funny exspecial
when a bills due..And u forget to pay
it..
I have the headaches really bad.. And
exspecailly now they are worse cause I had
a head injury and feels like pressure all
the time on the top of my head.. Xrays
and cat scan are normal.. But the pains
still there..Meds dont seem to work
either..
Talking about the brain fog , I was taking
my daughter to kindergarden once and I
started off to work when I discovered I
forgot to take her to school...Lol
like whoops im going the wrong way..Turn
around ...And six year olds ..They wonder
what us moms are doing..Lol
so we all get this brain fog... If we
didnt have so much on our mines it might
not be so bad..
Blue
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lwyswright
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 18 Location: Arizona
Brain Fog And Headaches Posted: 01-25-05 17:23pm
Hi. I also have the brain fog thing goin
on. And the headaches are probably one
of the worst parts of this animal called
lupus. The come on at such random times
and for no reason and totally knock me out
of comission. I take relpax for the
headaches and I also take nortriptolene
every day. They are both pretty strong
meds, but still sometimes they don't work.
My family also likes to laugh with me
over things I forget. I ask my kids the
same questions a million times.
Sometimes I think they think I have
totally lost my mind.
I really think laughter is an important
part of trying to be healthy. And, also
allowing yourself time to feel sorry for
yourself on occassion. I'm not saying to
dwell on the "poor me" part of this, but
give yourself permission to hate how you
feel and to wish things were different.
Allow yourself to be frustrated. And,
allow your family to help you with things.
Don't try to be the strong hero all the
time. And at the same time, don't curl
up and die. Try to keep doing things you
love. Keep trying to excersize and eat
right. And keep open relationships with
your doctors. In the end a group of
intune and knowledgable physicians will be
your saving grace.
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Thanks: 1
Thanked:0
Posted: 01-25-05 19:01pm
I am so sorry for you both, I live in this
other world too(brain-fog) 24/7.
I think the man above sometimes tests
us.
Lwyswright has a lot of good points.
I have learned to laugh alot. I carry a
note pad and pen w/me at all times so I
try not to forget things but there are a
lot of times that by the time I get the
pen and note pad out I forget what I was
going to write but most of the time it
helps. I try to stay away from the pity
pot and tell myself that there are people
that are alot worse off then I am.
It would be a great topic for us about our
brain fog and the silly things we did that
day, we could all laugh about it. A
topic of our medical problems and a place
to vent. I know that it is alot better
for us to let it out then to hold it in as
it is heck, sometimes.
I realize this is an older post. Hope
you are doin ok!
The best to you,
sandy
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lwyswright
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 18 Location: Arizona
Brain Fog Posted: 01-25-05 23:13pm
My husband, being the honey that he is,
went out and bought me a palm pilot so I
can keep track of all of my apt. For me
and the kids and also send little notes to
myself to keep me from forgetting what I
need to do on any given day.
I used to keep a day planner but the palm
is so much more convenient and it actually
gives me alerts that are audible as a
reminder. You can go online to ebay and
find these handy devices for a lot less
then you can get them in the stores.
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g26pa
New User, Becoming EHEALTHy
Joined: 07 Jul 2004 Posts: 14 Location: Texas
Lupus Sle Posted: 04-14-05 01:58am
Hello, my sister is 32yr old mom of a 4
and 2yr old..She was diagnosed with lupus
sle after the birth of her second baby..
The fatigue, clarity, pain and headaches
are apart of this nasty disease. She also
needs double knee replacements because the
lupus has taken the good tissue around her
knees. She is on predisone, cell cept,
pain meds just to name a few. I am very
sorry that you are going through this, but
try your best to keep a positive outlook,
remember to try and laugh even when it
hurts, you are your own healer....Keep
your strength up with plenty of rest and
hopefully you will have supportive family
and friends.
My prayers are with you and your family.
Ann
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bdennard
New User, Becoming EHEALTHy
Joined: 03 Sep 2005 Posts: 7 Location: Warner Robins, Georgia
Newly Diagnosed And Trying to Keep Smiling Posted: 09-03-05 09:55am
I was just diagnosed with lupus. I have
suffered with unexplained seizures for 3
years and migraine headaches for 20. Of
course I also have the depression, anxiety
and started having this brain fog you are
talking about. I am so relieved to know
that someone else has this too. About a
month ago I started having the big spots
on my face, neck and groin area. More
pain! I have been to many doctors
through the last 3-4 years with these
seizures and no one could find out the
cause until finally one of them did a
rheumatoid profile and found each test was
positive. My levels were extremely high
and my white blood count is still high so
I have infection somewhere in my body. I
am scheduled to go to a rheumatologist
this month to start some type of
treatment. I have already have low
platelets before about a year ago. I
hurt, I ache, I burn, I itch, and I don't
know what's going on inside my body.
I've heard all kinds of stories from
people who know other people who have
lupus, but I haven't talked to anyone who
actually has the disease. I feel like I
am going crazy!!!! My husband is one of
the most wonderful people in the world,
but we just can't talk about this.. He
went through open heart surgery two years
ago and this was a near death experience
so it really changed him. We are very
close to the lord and we have prayed about
this, but we are still human. Sometimes
I feel like I am freaking out because I
need to talk to someone who has been
through this experience. Can you help
me?
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bdennard
New User, Becoming EHEALTHy
Joined: 03 Sep 2005 Posts: 7 Location: Warner Robins, Georgia
Re: Newly Diagnosed And Trying to Keep Smiling Posted: 09-06-05 12:59pm
bdennard
wrote:
i was just diagnosed with
lupus. I have suffered with unexplained
seizures for 3 years and migraine
headaches for 20. Of course I also have
the depression, anxiety and started having
this brain fog you are talking about. I
am so relieved to know that someone else
has this too. About a month ago I
started having the big spots on my face,
neck and groin area. More pain! I
have been to many doctors through the last
3-4 years with these seizures and no one
could find out the cause until finally one
of them did a rheumatoid profile and found
each test was positive. My levels were
extremely high and my white blood count is
still high so I have infection somewhere
in my body. I am scheduled to go to a
rheumatologist this month to start some
type of treatment. I have already have
low platelets before about a year ago.
I hurt, I ache, I burn, I itch, and I
don't know what's going on inside my body.
I've heard all kinds of stories from
people who know other people who have
lupus, but I haven't talked to anyone who
actually has the disease. I feel like I
am going crazy!!!! My husband is one of
the most wonderful people in the world,
but we just can't talk about this.. He
went through open heart surgery two years
ago and this was a near death experience
so it really changed him. We are very
close to the lord and we have prayed about
this, but we are still human. Sometimes
I feel like I am freaking out because I
need to talk to someone who has been
through this experience. Can you help
me?
