Lupus Complications ? pain in joints/knees/fingers, swelling Posted: 08-19-07 08:17am
Hi i don't know where to begin! I will
try to condense for sanity's sake. Start
off with my grandmother had lupus, she
died from complications of leukemia. I
feel i have lupus as well. After the
birth of my third son at age 24, 14 years
ago, now i am 38. Well, after he was
born, i noticed joint pain, sore throats,
feeling like i had the flu off and on,
plus i would have things like thrush in my
throat(which only people with bad immune
systems get) so the doctor told me. I
would get illness that people with aids or
diabetes would get. Tested for everything
under the sun. All came back with
negative. Oh, i also developed osteopina
at age thirty with no explanation. They
could not figure out why someone at 30
years old had that. I had lost two inches
in height that is how they found out. I
also broke my ankle and the bone would not
heal for over a year and 1/2. They
finally put in donor bone and it took.
Again all my blood tests came back
negative. The doctors could not figure it
out, not even the rhum dr. He just
slapped fibro label on me. That was 8 yrs
ago. I just figured it was all in my head
and just dealt with it. Since i was 24 i
have to take massive amounts of ibuprofen
to get through a day. I have been taking
600mg 4-5 times a day for the last 14 yrs.
I have had numerous bladder infections
and kidney infections. But my dr says they
haven't found protein in my urine so she
doesn';t feel my kidney's are
malfunctioning. But she wants me to see
the rhume again. My symptoms are, bouts
of time where i feel like i have the flu,
pain in my joints, mainly knees, fingers
and toes, swelling in my legs fingers and
toes with tingling(the only word i can
come up with), sores on the roof of my
mouth, swollen glands, sore throats, my
throats is swollen most of the time, low
grade fevers, urinary infects, yeast
infects, it seems my temperature gauge is
broken(thats the only way i know how to
describe), sometimes i feel cold in my
hands and feet and sometimes i feel no hot
i feel like i am on fire. I know this is
long and i am soo sorry. There is a lot
more but this is the jist of it. If
anyone wants to respond that would be
great.
Thanks so much-Julie
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janitazim
New User, Becoming EHEALTHy
Joined: 18 Aug 2007 Posts: 3 Location: Tucson, AZ
You Sound a Lot Like Me--looking For Answers Posted: 08-19-07 09:42am
I know this is long too---I am 36 and
suffer all the time.
Something is wrong and I need help finding
out how to treat my symptoms. It seems
like my doctor treats each symptom and
then something else starts, and the other
one continues.
I will list my symptoms any advise is
appreciated. The doctor keeps telling me
that everything is normal but some of
these things cannot be in my
mind--sometimes I think I am making it all
up. I have been told that my lupus test
(ANA) is negative. The other response from
doctors is “you are overweight—what do
you expect.”
Visable / Diagnosed Symptoms
--Panniculitis-with Erythema Nodosum
confirmed by biopsy---I thought I just had
spontaneous bruising but the dermatologist
I am seeing for the acne took a biopsy of
the bruises.
--Acne—just started with in the last
year—never even had it is a teen and is
getting much worse on my chest and back,
if I spend 5 minutes in the sun—I get
pimples on my face, neck, chest, back,
arms, stomach, and legs.
--Red spots on my chest, and sides of
abdomen (I did not write down what they
are called but the dermatologist said they
are tiny blood vessels that have ruptured
under the surface of the skin—and they
will never go away)
--Ganglion cysts—hands, wrists, elbows,
shoulders, knees, anchles, feet.
--Ulser on my tounge that had to be
removed (biopsy was normal), but when the
skin rashes get worse it reoccurs
--Sheath cysts on tendons (not the same as
ganglions but also painful)
--Carpal tunnel—surgery to fix (with
ganglion cysts)
--De Quervain's tendinitis–surgery to
fix (with ganglion cysts)
--Planar fasciitis—both feet had surgery
to fix
--Pleurisy –Two instances in the last
five years.
--Unexplained blood in the urine that self
resolved.
Non visable symptoms
--Pain in all my joints and I had this
when I was much thinner.
--Fever for no reason that will last for
weeks/months at a time.
--Daily weight fluctuations (up to 12 lbs
in two days), when periods of higher
weight come on I am hardly able to move my
joints without PAIN, even my toes hurt to
move.
--Periods of being tired, so tired I have
to dose up with a lot of caffeine to make
it thru the day.
--I am always HOT, like I am burning up
from the inside, I perspire when others
are cold. I joke that my thermostat is
broken. This is also at night when my
sheets get so wet I have to change pajamas
during the night.
--Periods of hair thinning, which grows
back in then starts over again.
I have no idea where to start figuring out
what is wrong—but when I started doing
research the only common thread is lupus.
I need help figuring out what is wrong so
I can get it treated. I have no family
history of lupus.
|
JPH360
New User, Becoming EHEALTHy
Joined: 07 Aug 2007 Posts: 3 Location: MASS
Lupus Posted: 08-19-07 13:01pm
HI,
I am frustrated as well. I do not think
this is all in your head. I know how you
feel, i think we all second guess
ourselves, and i believe that is a sign it
is not in our heads!!!! My primary dr
told me you do not have to have a positive
ana test. She believes mainly the symtoms
over many years amongst other clues are
proof enough. But somewhere as the
disease progress the blood work will show
positive results. My rhume dr, told me 8
yrs ago that it sounds like lupus, but the
ana test came back normal and i do not get
the face rash, so he believes it is not
lupus, it's fribromyalsia. Which i do not
agree, i felt like he just couldn't find
concrete proof in the blood, so he just
slapped that diagnosis on me. As far as i
know fibromyalsia does not cause
illnesses, just pain and fatigue. But my
prim dr, told me she wants me to get
checked again by the same rhume dr, it's
been so long, and my symptoms have gotten
wide spread and more often, and she
believes it is lupus. So i have an
appointment in october. I do not think
weight has anything to do with it. My
grandmother was overweight and she had
lupus. I would not give up, keep going to
a doctor that will actually listen. Take
care and thank you for your post. Julie
|
JPH360
New User, Becoming EHEALTHy
Joined: 07 Aug 2007 Posts: 3 Location: MASS
Re: You Sound a Lot Like Me--looking For Answers Posted: 08-19-07 13:04pm
I am sorry i am new and i tried to respond
to your post to me, i guess i did it
wrong, i am not sure even this is going to
work. But if you look at the lupus forum
you will find a reply under JPH360 posted
today 8-19-2007
janitazim
wrote:
I know this is long too---I
am 36 and suffer all the time.
Something is wrong and I need help finding
out how to treat my symptoms. It seems
like my doctor treats each symptom and
then something else starts, and the other
one continues.
I will list my symptoms any advise is
appreciated. The doctor keeps telling me
that everything is normal but some of
these things cannot be in my
mind--sometimes I think I am making it all
up. I have been told that my lupus test
(ANA) is negative. The other response from
doctors is �you are
overweight�what do you
expect.�
Visable / Diagnosed Symptoms
--Panniculitis-with Erythema Nodosum
confirmed by biopsy---I thought I just had
spontaneous bruising but the dermatologist
I am seeing for the acne took a biopsy of
the bruises.
--Acne�just started with in the
last year�never even had it is a
teen and is getting much worse on my chest
and back, if I spend 5 minutes in the
sun�I get pimples on my face, neck,
chest, back, arms, stomach, and legs.
--Red spots on my chest, and sides of
abdomen (I did not write down what they
are called but the dermatologist said they
are tiny blood vessels that have ruptured
under the surface of the skin�and
they will never go away)
--Ganglion cysts�hands, wrists,
elbows, shoulders, knees, anchles, feet.
--Ulser on my tounge that had to be
removed (biopsy was normal), but when the
skin rashes get worse it reoccurs
--Sheath cysts on tendons (not the same as
ganglions but also painful)
--Carpal tunnel�surgery to fix
(with ganglion cysts)
--De Quervain's tendinitis�surgery
to fix (with ganglion cysts)
--Planar fasciitis�both feet had
surgery to fix
--Pleurisy �Two instances in the
last five years.
--Unexplained blood in the urine that self
resolved.
Non visable symptoms
--Pain in all my joints and I had this
when I was much thinner.
--Fever for no reason that will last for
weeks/months at a time.
--Daily weight fluctuations (up to 12 lbs
in two days), when periods of higher
weight come on I am hardly able to move my
joints without PAIN, even my toes hurt to
move.
--Periods of being tired, so tired I have
to dose up with a lot of caffeine to make
it thru the day.
--I am always HOT, like I am burning up
from the inside, I perspire when others
are cold. I joke that my thermostat is
broken. This is also at night when my
sheets get so wet I have to change pajamas
during the night.
--Periods of hair thinning, which grows
back in then starts over again.
I have no idea where to start figuring out
what is wrong�but when I started
doing research the only common thread is
lupus. I need help figuring out what is
wrong so I can get it treated. I have no
family history of
lupus.
|
lonestarguy
Active User, Really EHEALTHy
Joined: 21 Jun 2007 Posts: 592 Location: , Hoosierland, USA
Thanks: 10
Thanked:1
Lupus Posted: 08-19-07 13:46pm
Julie....I'm so sorry that you have
suffered so long with so many symptoms. At
the age of 35, back in the 1960s, my
mother started showing symptons of skin
cancer and rheumatoid arthritis. She did
spend a lot of time in the sun and usually
had a year-round tan.
At that time, lupus was unknown as a
separate disease and doctors were baffled
by all of the symptoms occuring
simultaneously. She shuttled from doctor
to doctor, specialist to specialist. After
about ten years of suffering and not
knowing, they finall diagnose a systemic
disease called--Guess what?
Fibromyalgia!!!
Another eight years roll by and she has
been taking 20-30 different meds a day for
all the symptons you and janitazim
mentioned. Finally, she develops arthritis
so bad she can't walk or lift anything.
That leads to a trip to Houston (we lived
near San Antonio) and an evaluation by a
lupus specialist. He was one of the first
docs to recognize lupus and its connection
to the autoimmune system.
As feared, she tested positive for
systemic lupus. But, alas, it was too late
to turn around the damage which had
already been done to her body. They put
her on a regiment of drugs to slow down
the progression. But she was in constant
pain and started to drink to dull it and
became an alcoholic too.
It was very difficult to watch a beautiful
woman slowly waste away with the ravages
of this insideous disease. She was 5'7"
and 120 pounds when the symptoms started
manifesting themselves and, when she died
in 1990, she had shrunk to 5'3" and 88
pounds. The lupus specialist had told us
that it is possible that you could have
lupus all your life and never have
symptons, but most women do and, like my
mom, the sun is usually the catalyst. I
have lived with the chance of lupus myself
because many docs think it is hereditary,
but my first cousin, Karen (same age as
me), got it in our family.
Julie, I hope you do get further tests to
ease your mind about whether you have it
or not. Good luck and I KNOW that this is
not "all in your head." No one knows a
woman's body better than you know yours,
so stick to your guns.
Rick
|
Bocciolol de Rosa
New User, Becoming EHEALTHy
Joined: 18 May 2007 Posts: 2 Location: TN
It's Not In Your Head Posted: 10-05-07 08:01am
We feel what we feel, just because Science
hasn't figured it out yet doesn't mean
it's not real; the world "was" flat til
proven other wise, right!
I have a great Fibro book that I lend out
to friends and think you should check out.
The book is titled "Fibromyalgia &
Chronic Myofascial Pain Syndrome A
Survival Manual, the authors are Devin
Starlanyl, MD and Mary Ellen Copeland MS,
MA, mine has a copyrite date of 1996 but I
think there is a newer one.
Every day I put my feet on the floor I
thank God, I believe you understand my
comment! As the years have past I started
taking herb & vitamins which I feel
have helped me. I also have a couple of
books on that if you are interested. I
have read almost everything I could get my
hands on; unfortunately sometimes my
memory fails me and I can't even put the
right words together. My husband and Momma
hate when I talk like that but it's true.
I hope you are feeling better today. I
think the best thing is to tell your
doctor that what they are doing isn't
helping and is effecting your quality of
life. They hate that phrase, it really
gets them hopping. First go to the Library
& look for my fav fibro book I think
you need some support it will provide.
