painful joints and muscles with rashes Posted: 02-14-08 17:36pm
First let me start off by apologizing if
this is too long. I just need to start at
the very beginning.
My maternal grandmother had myasthenia
gravis. My mother had scleraderma,
raynauds and ultimatley died from lupus,
although no one knew what she really had
until it was too late. I also have a
maternal aunt and a maternal uncle that
have had bouts with autoimmune illnesses
although we are not close so I can not say
for sure what they are.
Now I have a maternal cousin who has been
suffering for a long time with her"mystery
illness". Sometimes they tell her it is
lupus, sometimes MS sometimes they just
don't know. My brother has also been
suffering with "something". They have
bounced him around from fibrolyalgia,
lupus, hashimotos thyroidosis, to now they
aren't sure. They are both miserable. They
have both had countless tests, seen
countless doctors and specialists and
tried countless different kinds of meds.
And then there's me....I have been going
through the same things although I am not
sure just how long I will continue to go
through this .....I don't know if I can
handle much more. No one really knows what
I have either. They just grab at straws. I
have been to a rheumatologist and a
dermatologist.....both were very
disappointing. They dismissed me like I
was a loon or something.....not to mention
my general practioner and my ob/gyn.....I
am on an antidepressant and muscle relaxer
, NSAIDS and am now trying lyrica for
fibromyalgia.......it is not working., I
think I feel worse. But along with the
painful joints, muscles, the fatigue, the
sores in my mouth and nose and on my head,
redness on my face and chest, rashes that
come and go over various parts of my
body........no one knows......or no one
wants to diagnose anything......my ANA was
normal.....but 10% of all lupus patients
are normal.....my mom was and she died!!
My brother and I are scared that this is
our fate somehow.....It is so hard to "not
feel well" 99% of the time......it is hard
to not be able to sleep, it is hard to not
be able to make love, or have fun with the
family, or you feel like you are losing
your mind......everyone thinks you are
lazy or A HYPOCHONDRIAC.....it is hard to
go to work when you are so sick and no one
really knows, your boss just thinks you
are a dead beat......why is it this way?
Why doesn't anyone know what we have or
what we need to do? What can we do? Why
can't we get any answers....or relief? (by
the way...we all have a little Native
American in our lineage)
Thanks fo listening.....it is very
frustrating.....
I look forward to hearing from you.
|
mlsandjrh624
New User, Becoming EHEALTHy
Joined: 16 Apr 2008 Posts: 1
i know exactly how you feel! Posted: 04-16-08 19:55pm
Lupus, cancer, heart kidney and lung
failure, diabetes, parkinsins, stroke...
etc. all run in my family. and I am only
19 and I feel like I'm much much older. I
ache all over the place. When I went to
the doctors orignally about 3 1/2 years
ago it was originally from back pain.
within months I started noticing pain in
different joints, all over my body that
came and went. Instead of going on and on
about the history of how it all started, I
now suffer with achey ness in all joints,
usually one is painful for a few
days\weeks and within a few days of that
one going away another joint takes its
turn. It also affects my muscles and they
get very very tired. I get bruised very
easily and I have a rash that goes down
both arms that has been present since I
was a child, it also is on my legs but not
as bad as my arms. I am on meds for
depression, add, migraines and tremors. I
cannot think very clearly and my vision is
going bad. I am sure from what you said
that you know the list goes on and on...
but why can't a doctor find out what is
wrong? I'll never know!! but you aren't
just lazy or a hypochondriac... it is a
horrible feeling and no body will
understand... i'm assuming that the only
people who will are the ones suffering
from the same symptoms... until you are
diagnosed at least it's hard to make
anyone understand. best of luck
