I am back...slowly

Theresa informed us of her whereabouts, lately...but, she used acronyms, and I
don't know what they mean:

Quoted message said:

Hi ladies and gents, I used to run, I used to visit here and got a lot of fine advice. The wind's
rather out of my sails after reading about Laurie. :-(

I am back here after struggling to be well after 6 months of FUO, abd. and joint pain. My MD's have
decided that I have some sort of connective tissue disease (maybe lupus, maybe something else)...My
lungs are only mildly involved. I am now taking Prednisone (20 mg per day) which has turned out to
be nothing short of a miracle for me.

I am starting to exercise again...pain and fever or not.( I am 43 and formerly healthy- caught one
cold per year..never even owned a thermometer!)

Anyone have experience with either an inflammatory arthritis or connective tissue disease, and did
you try to continue to exercise?

I have lost mobility in my cervical spine, but the prednisone may eventually help with that. Thanks
All, Teresa (the *other one*)

~~~~~~~
Teresa, what is FUA, and abd? And what were your symptoms of connective tissue disease? I am
sorry...but, thankfully, it sounds like you are getting on top of it. What kind of mobility in your
cervical spine did you lose? What kind of exercise do you do now? When did you start to know that
something we very wrong? How many doctors did you have to go to, and what did it take to diagnose?
Sorry to be so inquisitive... just for SURE glad you are adapting and keeping on!

Mary

Hi Mary, Nice to *see* you again!

FUO= fever of unknown origin (it SUCKS because they'll try everything in the book..I had medical
tests that I'd never heard of and many that I had heard of...uuugh)

abd=abdominal

I saw my GP for 2 months which was a real setback he wanted me on Paxil!! ...and then an Infectious
Disease specialist for another 3 months and FINALLY a Rheumatologist who gave me some treatment.(and
was angry that my symptoms were not addressed sooner..maybe I didn't whine loudly enough?)

I was losing mobility in my cervical spine to the extent that I could NOT turn my head sideways.(or
tilt it back) Pain in spine, shoulder joint- not shoulder blade-one knee and one toe.

My rheumatologist gave me some stretches to help maintain some mobility..OW! They hurt but
I do them.

One in particular is really good for the upper back and shoulders. It's the

Hold your arms out in front of you, and bend the elbows ..palms facing you.....now slowly bring
your arms from elbow to wrist closer together, parallel- but don't touch. Your elbows should point
at the ground.

Right now I am taking the prednisone he prescribed and getting back to walking and running on the
treadmill.(I can do 4 miles but it kills me!! I run a mile and then walk a lap to recover, and then
run another mile...)

The worst pain when I run (OK, jog) seems to be my right shoulder swinging like a heavy pendulum.
When I walk I can hold it steadier and closer to my body.

I knew this summer when I started with flu like symptoms- fever and chills that

Joint pain, abdominal pain. Crazy, but I continued to work (still do work) I can't afford
to be ill..

I still have no definite diagnosis, they suspect lupus, I go back Jan. 5th. So far all my labs are
borderline or normal. I will probably have to redo the blood tests periodically.(til something shows
up??) They tell me it's common for the labs to be normal or borderline early on.

Well Thotful, hate to lead you to these links, but from your symptoms, I can understand your current
physicians concerns. When you got to the part about hair loss and facial (butterfly?) rash, combined
with your fatigue, fever, chills, arthritis like symptoms, and borderline lab work, it sounded like
a page from the provided links. My wife is undergoing the same testing and exhibiting similar
symptoms (has for quite a while as it seems). On the positive side, the vast majority of those
diagnosed with lupus, continue, with treatment, to live quite normal lives (so I'm told). I do hope
for the best. I'm encouraged by your drive and effort. Keep us informed.

uklupus.co.ukuklupus.co.ukOpen ↗

lupus.orglupus.orgOpen ↗

lupusohio.orglupusOpen ↗

Thotful560 said:

Hi Mary, Nice to *see* you again!

FUO= fever of unknown origin (it SUCKS because they'll try everything in the book..I had medical
tests that I'd never heard of and many that I had heard of...uuugh)

abd=abdominal

I saw my GP for 2 months which was a real setback he wanted me on Paxil!! ...and then an
Infectious Disease specialist for another 3 months and FINALLY a Rheumatologist who gave me some
treatment.(and was angry that my symptoms were not addressed sooner..maybe I didn't whine loudly
enough?)

I was losing mobility in my cervical spine to the extent that I could NOT turn my head
sideways.(or tilt it back) Pain in spine, shoulder joint- not shoulder blade-one knee and one toe.

My rheumatologist gave me some stretches to help maintain some mobility..OW! They hurt but I
do them.

One in particular is really good for the upper back and shoulders. It's the

Quoted message said:

Hold your arms out in front of you, and bend the elbows ..palms facing you.....now slowly bring
your arms from elbow to wrist closer together, parallel- but don't touch. Your elbows should point
at the ground.

Right now I am taking the prednisone he prescribed and getting back to walking and running on the
treadmill.(I can do 4 miles but it kills me!! I run a mile and then walk a lap to recover, and
then run another mile...)

The worst pain when I run (OK, jog) seems to be my right shoulder swinging like a heavy pendulum.
When I walk I can hold it steadier and closer to my body.

I knew this summer when I started with flu like symptoms- fever and chills that

Quoted message said:

Joint pain, abdominal pain. Crazy, but I continued to work (still do work) I can't afford to
be ill..

I still have no definite diagnosis, they suspect lupus, I go back Jan. 5th. So far all my labs are
borderline or normal. I will probably have to redo the blood tests periodically.(til something
shows up??) They tell me it's common for the labs to be normal or borderline early on.

--
The generation of random numbers is too vital a task to be left to chance.

Teresa,

Which toe?

Mary

Like yourself, my wife is still in the "discovery stage". To date, the only treatment has been for a
mild hyperthyroid condition (may or not be lupus related). Symptoms seem to mimic a host of other
conditions, which is probably why the physicians try to eliminate them first. Apart from the "not
knowing" she/we is/are doing fine. I admire your attitude. Looks like anything that tries to get a
hold of you better come prepared to fight. I'll post again when things are a little more "known". Be
well, and keep getting [censored]. Sometimes it helps.

Thotful560 said:

Dear Wayne,

...has your wife been offered any treatment for her

Quoted message said:

symptoms Wayne?

--
The generation of random numbers is too vital a task to be left to chance.

[email hidden] (Thotful560) wrote in message news:<[email hidden]>...

Quoted message said:

Hi Mary, Nice to *see* you again!

FUO= fever of unknown origin (it SUCKS because they'll try everything in the book..I had medical
tests that I'd never heard of and many that I had heard of...uuugh)

[]

Quoted message said:

I knew this summer when I started with flu like symptoms- fever and chills that

Quoted message said:

Joint pain, abdominal pain. Crazy, but I continued to work (still do work) I can't afford to
be ill..

I still have no definite diagnosis, they suspect lupus, I go back Jan. 5th. So far all my labs are
borderline or normal. I will probably have to redo the blood tests periodically.(til something
shows up??) They tell me it's common for the labs to be normal or borderline early on.

Keep questioning!

My sister-in-law was diagnosed with various things including LUPUS, and just about all turned out
wrong. She has a combination of two illnesses together, MS and something else. Once they finally
got the diagnosis right things went/are going much better for her. But various misdiagnoses (is
that the right plural?) took years to straighten out

Hope to hear they got it right and you can get the proper treatment.

It seems to me I heard somewhere that Wayne Conway wrote in article
<[email hidden]>:

Quoted message said:

Well Thotful, hate to lead you to these links, but from your symptoms, I can understand your
current physicians concerns. When you got to the part about hair loss and facial (butterfly?) rash,
combined with your fatigue, fever, chills, arthritis like symptoms, and borderline lab work, it
sounded like a page from the provided links. My wife is undergoing the same testing and exhibiting
similar symptoms (has for quite a while as it seems). On the positive side, the vast majority of
those diagnosed with lupus, continue, with treatment, to live quite normal lives (so I'm told). I
do hope for the best. I'm encouraged by your drive and effort. Keep us informed.

Quoted message said:

uklupus.co.ukuklupus.co.ukOpen ↗

Quoted message said:

lupus.orglupus.orgOpen ↗

Quoted message said:

lupusohio.orglupusOpen ↗

Quoted message said:

Thotful560 wrote:

Quoted message said:

Quoted message said:

Hi Mary, Nice to *see* you again!

Quoted message said:

Quoted message said:

FUO= fever of unknown origin (it SUCKS because they'll try everything in the book..I had medical
tests that I'd never heard of and many that I had heard of...uuugh)

Quoted message said:

Quoted message said:

abd=abdominal

[...]

Wayne gave you some good starting sites.

And if you have time in your life for another newsgroup you might want to lurk or join in at
alt.support.arthritis, run by and for sufferers from the 170+ varieties of arthritis and related
diseases, including lupus. The group's full of life experience including why docs can't/don't
diagnose or treat promptly, how to reach shelves and do

so on. Great mutual support group. I lurk ever since I went there to get information when my wife
needed a shoulder replacement several years ago.
--
Don [email hidden]