Hi, I have just tested high for lupus. I
am currently off from work due to lupus
symptoms and spinal disk problems. I am
in pain all the time from my joints and
also pain from the disk problems. After
reading about lupus I have discovered that
I am photosensitive and the florescent
lights I worked under aggravate my
symptoms.
I am currently using a suncreen spf 30 for
the sunlight problem, is there something I
can use to block the florescent lights.
Just a short shopping trip causes my face
and arms to turn red. Continued exposure
causes a rash and my arms tutn a
combination of purple and red.
The only rheumy in this area has accepted
me but I can't get in until 2/12/04.
Also is there any help out there for the
fatigue. I am having a lot of problems
with that also.
I have found something that keeps the
severe flareups in my joints at bay. My
chiropractor suggested that I take 4,000
to 6,000 ml of omega 3 fish oil and this
has helped a lot with the swelling, pain
and redness in my joints.
I would appreciate any advice on this
disease that you can give me.
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 12-03-03 11:46am
Welcome sweetsuuu! It is nice to meet
you!
There are a few things...When shopping,
always wear your sunblock (reapply
often!), wear long sleeves and long pants
(easier now that it is winter, I know).
Otherwise, I know *exactly* what you mean.
I can barely make it ten minutes in a lot
of very famous stores!
If you want to be proactive, send letters
to these stores...The more that complain,
the more likely to get it changed, you
know?
Fatigue...Sleep. Take a nap if you need
it. A lot of people get a lot of use out
of 20 minute power naps. I have a really
odd sleep pattern, myself. I either sleep
20 hours a day or none at all. I sleep
when I can...
Also, since you have a while to wait for
the rheumy...Keep a detailed diary and
take that with you to the first
appointment.
Do you know what tests they have already
run? There is no one test for lupus, but
rather a host of tests that hint at lots
of things...
Sending you warm hugs,
ladybrannon
|
Sweetsuuu
New User, Becoming EHEALTHy
Joined: 01 Dec 2003 Posts: 3 Location: Elmira. NY
Good News Today Posted: 12-03-03 15:16pm
Thank you for the welcome and the advice
lady brannon.
I had some good news today, strong
memorial in rochester, ny has accepted me
for a parient based on the test results
that I had my doctor send them. I am
very pleased about this as my appontment
is for 12/5, worth a 2+ hour drive in one
direction. They are very fussy about who
they will accept.
I don't know what tests were run by my
family doctor, only that she told me I
tested very high for lupus. :d
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 12-03-03 16:10pm
I would *not* go to the new appoinment on
friday without knowing exactly what tests
they did and what they are calling
"testing high for lupus."
unfortunately, it has been my experience
that gps are not up to date on lupus and
what all the tests mean...I tell you this
in the best of faith...Not to scare or
frighten. Sometimes it works the other
way. also keep in mind
that several of the tests can change due
to lupus activity or flares.
Please feel free to ask any questions in
the meantime. There are a lot of us here
who have dealt with lupus a long time and
in many facets. We also are here to help
if we can!
A little about myself...I am a 29 year old
lupus patient. I can no longer work. I
have been diagnosed for over 3 years and
have spent those years in and out of the
hospital. I was supposed to be a pretty
mild case...Boy were they *wrong.* I think
I have been a thorn in every single on my
doctor's sides for years...Lol!
Hugs to you!
Ladybrannon
ps- you got a doctor appointment for this
friday, 12/5. How weird! That is my 30th
birthday! Small world, huh?
|
Sweetsuuu
New User, Becoming EHEALTHy
Joined: 01 Dec 2003 Posts: 3 Location: Elmira. NY
Lupus Appointment Posted: 12-04-03 05:51am
Happy 30 th to you! I hope you have a
wonderful day. I turned 58 in september
and have children who are in their late
30's.
I am afraid that I need to keep this
appointment on friday. Strong will run
their own tests and they specialize in
arthritis diseases. I have not worked
since 10/17 and need some answers very
soon. My job can be filled by 1/23/04.
My gp cannot give me the answers I need to
go for long term disability. My opinion
is that I have reached the point that I
can no longer work full time, but, if I
can't get the supporting tests and
diagnosis I will have to try and return to
work. I am employed by a good company
and have a wonderful and understanding
boss that does not want to lose me. Of
course, then if I do go back there is the
fear that they will try and get rid of me
so that in the future they won't have to
pay long term benefits. No matter how
good the company there is always that
bottom line.
I go to the local hospital today for a
discography for the c4/c5. I go back to
the hospital on 12/9 for a facet nerve
block at the l5/s1. I am well into 2nd
stage degenerative arthritis of the spine
from the c3/c4 to c7/t1 and l2/l3 to the
l5/s1. Four years ago I had right
lateral surgery at the l2/l3 to remove
pressure on the nerve root from a ruptured
disk. I have permanent nerve damage in
my right thigh from that. My gp's
response to these problems was to send me
back to the neurosurgeon to see if I am a
candidate for more back surgery and to a
pain management Dr. Which I haven't seen
yet. The neurosurgeon said no thank god
and then the two Dr.'s fought over who was
to sign my extended excuse to be off from
work. After an extended phone
conversation where I totally lost my
temper with the gp's nurse I am now off
until 1/2/2004. So you see why I need to
see a rheumy as soon as possible. This in
itself is not enough to qualify for long
term disability and ssd.
It seems to me that I am in a damned if I
do and damned if I don't situation.
I have read the posts here and I value
your advice but this time I can't take it.
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 12-04-03 10:20am
Oh! I did *not* mean for you to cancel
the appointment...Do go! You are so lucky
to get in so quickly!!!!!!!!!!!!!!!
I simply meant that I would be sure to
take all my tests results, diaries, etc.
