All I want to do is sleep. I have never
felt more exhausted than I do right now.
I have been sleeping 11-12 hours a night
recently because my normal 8 hrs was not
helping any more. I have an appt with a
rheumatologist in a few days. My hx is:
diagnosis of subcutaneous lupus after
several years of rashes that did not clear
with topical steriods - biopsy done that
showed lupus. I had fatigue and joint
pains. I was put on plaquenil which
worked. I stopped it because I was
working overseas and could not get it, but
I did fine - minor problems but I avoided
the sun and rested a lot. My labs were
always borderline until just before I went
to work overseas and had a false positive
vdrl but did not follow-up with that
because it happened just before I left.
Because of my job, I am in and out of the
heat and sun all day - I work in home
health care. I was ok until this summer
when I just reached the point of
exhaustion. I just thought I needed some
time off and went to the beach with my
daughter and grandson. I was not in the
sun a lot but some and I used sunscreen.
It has been downhill from there. Rash on
my face, back, chest, etc. Joints are
hurting. Big time forgetfulness and
concentration problems. Ringing in my
ears day and night. The exhaustion. I
already took steps to leave homecare and
work inside of our hospital because I know
I cannot do the heat and sun anymore.
Last winter I had a serious gi upset that
threw me in the hospital for a week. It
came on suddenly but was horrible. They
did find polyps and a lesion in my stomach
but did not know what the lesion was -
just a benign lesion they said. The gi
doctor was not sure if it was lupus
related but up until a couple of weeks ago
I continued with gi problems. The
problems resolved just as quickly as they
began.
I do not know why I am posting here. I
think it is because I feel like I am
absolutely crazy - sooo many complaints.
My urine output has changed and has been
foamy. I guess I just dread going to the
doctor and the possibility of hearing
"everything is normal" when I feel so
awful. Thank you for listening.
|
AlisBaby
New User, Becoming EHEALTHy
Joined: 17 Aug 2004 Posts: 19 Location: Virginia
Dear Skies... Posted: 08-28-04 17:59pm
I hear you loud and clear. I have a
doctor's appointment next friday and even
though I have just recently had a +ana and
+lac, I too fear the, "everything's
okay..." or "you're not that sick" given
how awful I feel.
I hope you're at least able to get back on
the plaquenil -- maybe that will help you
to feel better.
Best wishes...
Lauren
|
AlisBaby
New User, Becoming EHEALTHy
Joined: 17 Aug 2004 Posts: 19 Location: Virginia
P.s. Posted: 08-28-04 18:01pm
This board is really slow and doesn't have
much activity on the weekends, so don't
feel discouraged if you don't get many
responses.
|
desertskies
New User, Becoming EHEALTHy
Joined: 27 Aug 2004 Posts: 3 Location: Georgia
Thank You Posted: 08-28-04 18:51pm
Thank you for your reply. I am going to
ask the doctor to please put me back on
the plaquenil. I am discouraged because
the exhaustion is so overwhelming. I did
nothing today but read and nap but I feel
like I did hard labor under the noon day
sun. Thank you again for your reply.
Desertskies
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 09-02-04 16:54pm
Welcome desertskies!
It sounds like you've been having a rough
time of it lately! I am so sorry. I have
had some issues with my gi tract. Mine
were a cross of lupus issues and by
proucts of the drugs I take to control my
lupus.
And the fatigue! There are some days that
I have slept 20 of the 24 hours, and I
wake up sleepy! *sigh* I have found
though that naps, if possible, help during
the "down" times and hot baths help me, as
well.
Again, welcome to the group!
hugs,
ladybrannon
|
desertskies
New User, Becoming EHEALTHy
Joined: 27 Aug 2004 Posts: 3 Location: Georgia
Slow In Replying Posted: 09-10-04 20:02pm
I am sorry that I am slow in replying. I
appreciate your response! I saw the
rheumatologist - basically a typical
initial visit and I will f/u again next
month. He said that the rash on my face
is the malar rash. Can you have the
malar rash with just subcutaneous lupus?
Do you ever have a mixture of rashes?
When you sleep a lot, do you feel guilty
about it? I do because I have so much
that needs to be done. I am really
struggling with feeling guilty about
getting behind with everything.
The doctor said that my joint pain appears
to be osteoarthritis and wanted me to take
viox or celebrex. I told him that I
rather just live with the pain than cause
my stomach to hurt worse than it already
does. He did give me a cream that really
helps.
He did not want me to start back on the
plaquenil until all of my labs are back.
I just need some energy!
Thank you for your help! Desertskies
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 09-11-04 10:42am
Great to hear from you again!
As for the rashes, I have had so many
different types I couldn't count them all.
Seriously. Let me clarify that I have
systemic lupus.
About feeling guilty...I used to, but I
don't anymore. It is not something I can
help or change...Anymore than I can change
that I have brown eyes. I just learn what
activities, actions, etc. Make me
excessively tired and try to learn how to
adjust for them. I also nap. It keeps me
awake when I know I *have* to do things.
Hugs,
ladybrannon
|
BlakkStarr1
New User, Becoming EHEALTHy
Joined: 27 Dec 2005 Posts: 12
Posted: 01-03-06 13:19pm
ladybrannon
wrote:
welcome desertskies!
It sounds like you've been having a rough
time of it lately! I am so sorry. I
have had some issues with my gi tract.
Mine were a cross of lupus issues and by
proucts of the drugs I take to control my
lupus.
And the fatigue! There are some days
that I have slept 20 of the 24 hours, and
I wake up sleepy! *sigh* I have found
though that naps, if possible, help during
the "down" times and hot baths help me, as
well.
Again, welcome to the group! :)
hugs,
ladybrannon
hello....I just recently joined this
forum, and have posted several replies.
I was dx'd with sle in july, 2005. My
main reason for seeing the rheumatologist
was for joint pain, possibly
fibromyalagia...But tests proved to be
sle. I am currently on prednisone 25mg,
and plaqunel 200my 2x /day. Must have
had lupus longer than diagnosed because my
platelets dropped down to what is known as
"panic level", 20,000. Was immediately
referred to a hematologist. That was the
reason for the prednisone. Plaquenil was
stopped for a while; perhaps that was
causing the drop in the platelets.
The prednisone is doing some good, but
have gained about 30 lbs, get tremors of
upper extremities, sweats and shortness of
breath. No gi problems as I take
prevacid daily. I get very tired in the
late afternoon...It comes over me very
quickly...And I have to lie down and nap.
My mood sucks.
Will be seeing both doctors in the next 2
weeks. Hopefully the prednisone will be
decreased some more.
|
nichole handran
New User, Becoming EHEALTHy
Joined: 24 Nov 2005 Posts: 11 Location: mpls
Re: Craving Sleep Posted: 01-03-06 17:32pm
desertskies
wrote:
all I want to do is sleep.
I have never felt more exhausted than I
do right now. I have been sleeping
11-12 hours a night recently because my
normal 8 hrs was not helping any more.
I have an appt with a rheumatologist in a
few days. My hx is: diagnosis of
subcutaneous lupus after several years of
rashes that did not clear with topical
steriods - biopsy done that showed lupus.
I had fatigue and joint pains. I was
put on plaquenil which worked. I
stopped it because I was working overseas
and could not get it, but I did fine -
minor problems but I avoided the sun and
rested a lot. My labs were always
borderline until just before I went to
work overseas and had a false positive
vdrl but did not follow-up with that
because it happened just before I left.
Because of my job, I am in and out of the
heat and sun all day - I work in home
health care. I was ok until this summer
when I just reached the point of
exhaustion. I just thought I needed
some time off and went to the beach with
my daughter and grandson. I was not in
the sun a lot but some and I used
sunscreen. It has been downhill from
there. Rash on my face, back, chest,
etc. Joints are hurting. Big time
forgetfulness and concentration problems.
Ringing in my ears day and night. The
exhaustion. I already took steps to
leave homecare and work inside of our
hospital because I know I cannot do the
heat and sun anymore.
Last winter I had a serious gi upset that
threw me in the hospital for a week. It
came on suddenly but was horrible. They
did find polyps and a lesion in my stomach
but did not know what the lesion was -
just a benign lesion they said. The gi
doctor was not sure if it was lupus
related but up until a couple of weeks ago
I continued with gi problems. The
problems resolved just as quickly as they
began.
I do not know why I am posting here. I
think it is because I feel like I am
absolutely crazy - sooo many complaints.
My urine output has changed and has been
foamy. I guess I just dread going to
the doctor and the possibility of hearing
"everything is normal" when I feel so
awful. Thank you for
listening.
hello desertskies, weakness is
overwhelming at times the fatigue and
exhaustion takes over. How do you bring
yourself out of it? When your tiered do
you have something to look forward to
everyday? A project that you enjoy,
someone you love to see? This becomes
very hard to do but I have learned you
take control of the disease. Your mind is
stronger than the pain. You cant let
lupus overcome you as a person. I know
how much it can if you let it. Your not
crazy most rhuemetologists are not
concerned with there patients as much as
they should be. Not all but some are only
concerned with pushing more drugs on you.
Vitamins and a well balanced diet are the
key. Look up nutrients that your body
needs. There are plenty of websites where
you can find info.. To make a difference.
I am now weening myself off the steroids
I have been on for over a year. This is a
difficult task for the fact that I depend
on them to wake me up. As I say. They
help me function better. But the side
effects are terreble. Keep your head up
and focus on things that help to keep you
happy and you.
Nikki nicholehandrannikki@hotmail.Com
|
Rebecca Schwartz
New User, Becoming EHEALTHy
Joined: 04 Jan 2006 Posts: 11 Location: Bowling Green, Ky
Sleep Posted: 01-04-06 16:37pm
Hello, I feel your pain...Or fatigue,
rather. I am a mother of three ages 4, 2
and 1. All my life I have survived
magnificently with only a couple hours of
sleep (with the exception of first
trimesters) until recently. I was
diagnosed with lupus a little over a year
ago after having symptoms as early as high
school, and even after the births of my
children (one of which being autistic) and
suffering from extreme hypothyroidism, I
always found the energy to accomplish
everything I set out to do. My house was
always immaculate, I work, and I have a
4.0 in college to date. But recently I
can't get anything done. After 9 or 10
hours of sleep (as opposed to my usual
4-6) just the thought of getting up makes
me lethargic. And this is just very
recently that I am feeling this way. I
have encountered flares to the point that
even looking through the window at the sun
I become nauseated, but nothing holds a
candle to the fatigue I feel now! I
can't even enjoy my children and husband
the way I used to, and I thought it was
just me! Thanks for making me feel
understood.
|
lupinda
New User, Becoming EHEALTHy
Joined: 03 May 2008 Posts: 2
Re:Craving Sleep Posted: 05-03-08 14:43pm
I have also been recently diagnosed (went
in for sudden joint pain) with
subcutaneous lupus. I must have had it for
a decade before the diagnosis. I felt so
sleepy a long time ago that I started
drinking massive amounts of coffee. Now I
have about 5 large cups per day. Before
the diagnosis I tried quitting coffee a
few times and my speech was slurred and
slept for 20 hours per day. I went right
back on it. I have friends who laugh at me
and always said: "I can see you change
some habits over the years but I can never
see you give up coffee". I always knew I
don't like the taste of coffee but that
somehow without it I am like a zombie. I
drink it like medicine. I take tiny sips
so I can drink a cup (I don't mind the
coffee when it's cold) over a period of 3
hours. I never would have made the
connection between the fatigue that is
constantly (horrible during flare-ups) and
lupus. I had the skin lesions during times
of stress but I always thought stress
always comes accompanied with some kind of
skin problems. The fact that they were
small (chickenpox-like) lesions rather
than pimples never raised a warning flag.
Hindsight is always 20/20. Right? Anyway,
I feel very sad that you feel so
exhausted. At least you have the strength
to deal with it without coffee. I don't
think I'll ever resort to drugs but if my
rheumatologist tells me one day that I
should stop drinking coffee, I might have
to take the drugs to live rather than
sleep. Good luck to you!
