Lupus Support - Hi, I'm new

Author

Hi, I'm new

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Hi everyone,
Thought since I already posted I'd briefly introduce myself. My back is
bad this week so I can't type much.

I'm 42 and having lots of joint pain,stiffness and fatigue. Can't work
full-time as a result but I have to be able to work because I need the
insurance-it's a mess. Gave up all my hobbies and exercise. The doctors
so far all say something autoimmune is going on (I already have an
autoimmune thyroid disorder)but aren't sure what-they've been saying
either RA or lupus for several years now but so far it isn't showing in
bloodwork. Had a really bad experience with a rheumatologist and am
seeing one more next week who's supposed to be one of the best. Some
days I feel really scared and others really anxious. I'm as afraid of
the drugs as I am of the illnesses but I know lots of people do really
well on them and I'm trying to keep positive. Thanks for reading this.
T.

2005-04-05, 6:28 pm

tejoyo@yahoo.com wrote:

> Hi everyone,
> Thought since I already posted I'd briefly introduce myself. My back is
> bad this week so I can't type much.

> I'm 42 and having lots of joint pain,stiffness and fatigue. Can't work
> full-time as a result but I have to be able to work because I need the
> insurance-it's a mess. Gave up all my hobbies and exercise. The doctors
> so far all say something autoimmune is going on (I already have an
> autoimmune thyroid disorder)but aren't sure what-they've been saying
> either RA or lupus for several years now but so far it isn't showing in
> bloodwork. Had a really bad experience with a rheumatologist and am
> seeing one more next week who's supposed to be one of the best. Some
> days I feel really scared and others really anxious. I'm as afraid of
> the drugs as I am of the illnesses but I know lots of people do really
> well on them and I'm trying to keep positive. Thanks for reading this.

Hello T and welcome,
I'm sorry about your pain. My back's been worser for weeks/months now.
So I asked for a CT scan....in wait mode.
I have fibro, osteoarthritis,degenerative disc, sciatica and some low bone
density.
Oddly enough, yesterday when I carred heavy buckets, after, it felt like my
back was somewhat better, but it was warm out, so I don't know if the pain
was worse due to weather/arthritis or if by working the buckets it
stretched my discs back into place....(weird theory of mine <g> ). Hint try
stretching exercises? (to the ceiling or bending backwards helps my back).

Think ergonomics...( in the workplace, in the home)
http://www.osha.gov/SLTC/etools/computerworkstations/
http://ergo.human.cornell.edu/ergoguide.html
http://www.ncsu.edu/ehs/www99/right.../ergonomic.html

For instance, leaning over the stove or the table to set the table or do
meal prep, if the counter or table is too low, sometimes sitting on a stool
is better for the back or lower chair etc...

There are risks and side effects to any medications.
The question would be quality of life and possibly enable you to continue
working (if that's your desire).
So maybe tell rheumy, "treat the symptoms, not the labs, until we see what
happens in the future"
I suppose you could ask the rheumy if scans show inflammation, then ask if
anti-inflammatories might help or some of the "lupus" medications...imuran
or plaquenil. Look them up at www.lupus.org to see which symptoms each
address.
I don't believe in over-medicating, but a person's got to "live"..right?
Sometimes a person's got to combine both a gastro med and "lupus"
medication.

Stay with us even if you don't have a solid diagnosis. Here's a great place
to be.
Speak up, post anytime. Some of us have trouble keeping up with posts.
Hugs
J

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Thanks J,
Anti-inflammatories don't do much. For some odd reason Ascriptin works
minimally better than the NSAID prescribed by my old rheumy. I'm seeing
a new rheumy next week to hopefully get a diagnosis but I've not had
much luck with doctors. I am looking for someone to work with me.
Sorry you're not feeling well, I'll check the posts here to find out
how your CT scan turns out. Thank you for the links.
T.

Cindy

2005-04-05, 6:28 pm

Hello,
I have almost everything J has, but no bone density problems..Also have
psuedogout...Anti-inflamatories don't do anything for me either.
My joints always hurt...everyone of them...Then the deep tissue and muscles
too...Heck my skin even hurts..LOl...
I hope your new reumy will give you better answers and solutions..
Welcome
Cindy
<tejoyo@yahoo.com> wrote in message
news:1112366677.380016.226180@o13g2000cwo.googlegroups.com...
> Thanks J,
> Anti-inflammatories don't do much. For some odd reason Ascriptin works
> minimally better than the NSAID prescribed by my old rheumy. I'm seeing
> a new rheumy next week to hopefully get a diagnosis but I've not had
> much luck with doctors. I am looking for someone to work with me.
> Sorry you're not feeling well, I'll check the posts here to find out
> how your CT scan turns out. Thank you for the links.
> T.
>

cloud

2005-04-05, 6:28 pm

I'm not advocating this but have you read anything on MCTD or UCTD. Did you
have a positive RA Factor test? How bout the ANA and Sed Rates. Heck,
aren't most Rheumys a tad bit of a bad experience?

Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

> Hi everyone,
> Thought since I already posted I'd briefly introduce myself. My back is
> bad this week so I can't type much.

cloud

2005-04-05, 6:28 pm

One other thing, being my good natured self i am, but not very prolific
these days due to pauses in mental self-accessing which mean, heck - i
dunno.
If you give up everything, hobbies and exercise, and do not take the drugs,
are you alive or short-changing yourself on a life?
I understand the need for medical insurance, but what is that they say about
getting blood from a turnip. But, if one lives the life of a turnip, what
may i ask is the difference.
I have a hypothyroid. Oh Lord knows I have a lot of other stuff but will
not bore you with the details. It is a rather long list and not one i am
proud of or have any emotional ties to. It is just a list.
I take tons of meds. They may be working. Maybe not. You are correct
about weighing the pro's and con's.
I am on disability. I am not pilfering from the SS system. I collect it
because if anything, it gives me a sense of contributing to our household in
some way. I still bite the bullet though; I dream of working. Recurrent
dreams. Or are they nightmares because too often I fail in my attempts in
working.
I enjoy me as a person. I love people as people. All kinds of people, big
or small, fat or tall. People are great. But i do not love them because
they are black, white, green, crippled, ugly or whatever. I love them for
the big hearts. Don't forget to be good to yourself and do not worry about
the Rheumy's with attitudes who do NOT know you.
You are great~!
Now please knit me some socks... my Florida feets are cold.
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

> Hi everyone,
> Thought since I already posted I'd briefly introduce myself. My back is
> bad this week so I can't type much.

2005-04-05, 6:28 pm

Hi T,
Welcome. It is certainly possible for you to have another autoimmune
disease, even though it has not shown up in your blood yet. I hope the new
rheumatologist will be helpful to you. There are some good ones around but,
generally, I find them an errogant lot. Not always good listeners. Try to be
open to taking drugs, if it is recommended. They can make all the difference
and they are not all as bad as you might think. They have been lifesavers
for me. I hope you will let us know what the doctor has to say. One with
such a good reputation may have some insights and suggestions for you.
BJ-Sk. Canada
<tejoyo@yahoo.com> wrote in message
news:1112336397.293187.54360@g14g2000cwa.googlegroups.com...
> Hi everyone,
> Thought since I already posted I'd briefly introduce myself. My back is
> bad this week so I can't type much.

janers

2005-04-05, 6:28 pm

And for some reason Cloud, we didn't get together this year, So watch for
2006

Welcome to the group tejoy, and ask questions all the time. There are some
very helpful people on this group, so take care

janers

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Hi Cloud,
I've noticed even among doctors rheumys seem to have a bad rep but I
think partly because they're dealing with such elusive stuff-I've got
all the symptoms and no positives in specific tests even the latest
ones (i.e. newest ones available). My ANA is elevated with speckled
pattern (indicative of RA and/or lupus, right?) and most recent sed
rate was elevated (lab range up to 20 high and mine was 27) that was
the day my joints were so bad I spent 4 days in bed. But the specific
tests (such as RA Factor etc) aren't showing anything (and I have
Hashi's). Seeing a well-known doc next week but as I said, I've had
some awful experiences. When my thyroid went haywire I saw 17 docs
trying to figure it out-one moron told me there was nothing wrong with
me except my attitude wasn't positive enough and each morning I should
stand in front of the mirror and say aloud, "I am a healthy, healthy
person." He was a GP I think (don't remember I've blocked most of it)

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Thanks Cindy and I'm so sorry you're in the same boat as J, it's awful
I know (wish I didn't

I hope you do have something that works if the NSAIDs don't. Gosh, this
is no fun, but you all are very supportive, thanks!
T

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Cloud,
I haven't been offered any other drugs except Relafen and it doesn't do
a thing for me (except weight gain that goes away a week after I'm off
it) All my favorite hobbies are too painful to pursue, I pay dearly
after and I can't afford right now (literally) to miss any more days of
work than I am now. The money I earn working pays my ins. and drug
co-pays. I am in a Catch-22 situation-too sick to work full-time no
diagnosis to allow me to not work and refused regular medical insurance
because my endo put in his files that I had an abnormal test of some
kind. My 69 year old mother is paying $500. per month for my state
sponsored high risk health insurance (which will last another 2 years)
and whatever money I earn mostly goes towards the 20% co-pays for
everything plus $25. per doctor visit. I think you misunderstood me, I
am absolutely for SSI if you need it and in fact having lived in
several other countries (including the social service paradise of
Denmark) wish that we had some kind of a safety net in this country.
But (and I won't bore you with details) I have paid into a public
employee pension system (state) not Social Security (federal) and the
rules are different-I need to work and get back into the system in
order to ever get disability if my condition worsens. I'm in a really
bad situation. But I promise if I ever do get some meds and my hands
get better I'll knit you something (not socks though, no patience!!)

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Thanks Janers and BJ,
I will post to the group if I get any kind of diagnosis. I'm not
against meds if I have no choice, just scared to death of them. And not
sure how I'll pay the 20% co-pay. I have a friend on MTX/Enbrel combo
and the MTX alone is $1500/mth. I"m not making it financially now...
But I'll deal with it when/if it happens. Thanks!
T

cloud

2005-04-05, 6:28 pm

Hahhahhahhaaaa.
I am a beautiful healthy person too and it sure ain't working for me either.
But sure, there is a pattern where disease, depression and something else
rotate about. If one is off kilter, it can and often does affect the other.
Stress can do all sorts of nasty stuff, so maybe what the doc was saying
was, put on your "Happy Me" outfit each morning and it may make a world of
difference. Stress can knock me out for the count. This is why I steer
clear of those mutants with sinister faces and ugly attitudes.
Not all which is RA has a positive RA Factor. There are those seronegative
cases which show every indication of RA.
How 'bout Fibromyalgia. Was it your joints or your muscles causing you
pain?
My sis had a speckled pattern ANA and turned out she had Hep C. She found
out about the Hep C when she began to glow in the dark and her liver
enlarged to the size of the Goodyear Blimp. We were worried she may also
have an Autoimmune disease because of the Autoimmune issues which are
seemingly hereditary. Her daughter, my neice, has MS. My sis and i both
have asthma. Her asthma is the mold, dust, dander type. Mine is the
enviromental stuff. Perfumes do not bother her. Perfumes can kick the
daylights out of me.
Did they diagnose you with thyroiditis?
My advice would be to write all the things which happen to you while you are
sick, or very sick. Try not to leave anything out.
Every little tidbit could be a possible link to what may be causing your
symptoms.
I had thyroiditis when i was 20 something years young. Now that i am a wee
bit older then that (hahahhahaha), they most recently diagnosed me with
hypothyroid and now have to take synthroid.
Sometimes diagnosis takes up too much time! This I can admit to.
Are you on any medication now?

Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

> Hi Cloud,
> I've noticed even among doctors rheumys seem to have a bad rep but I
> think partly because they're dealing with such elusive stuff-I've got
> all the symptoms and no positives in specific tests even the latest
> ones (i.e. newest ones available). My ANA is elevated with speckled
> pattern (indicative of RA and/or lupus, right?) and most recent sed
> rate was elevated (lab range up to 20 high and mine was 27) that was
> the day my joints were so bad I spent 4 days in bed. But the specific
> tests (such as RA Factor etc) aren't showing anything (and I have
> Hashi's). Seeing a well-known doc next week but as I said, I've had
> some awful experiences. When my thyroid went haywire I saw 17 docs
> trying to figure it out-one moron told me there was nothing wrong with
> me except my attitude wasn't positive enough and each morning I should
> stand in front of the mirror and say aloud, "I am a healthy, healthy
> person." He was a GP I think (don't remember I've blocked most of it)
>

cloud

2005-04-05, 6:28 pm

Hey janers my dear sweet buddy, I look forward to every year. I am
superglued to this planet, or at least i hope so until the superglu wears
off.
I met one young lady (i say this because we are forever young), down in the
Okeechobee area who also has MCTD. Boy, she's a mess! LOL Actually, if I
reach 67, i bet i will be just like her if not dragging myself to the
fridgerator for chocolate.
Just shout at me. I try to be here. I do not drive so my hubby chauffer
has to cater to my whims.
The crapload of drugs I am on, I feel fortunate to think past my nose at
times.
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

> And for some reason Cloud, we didn't get together this year, So watch for
> 2006
>
>
> Welcome to the group tejoy, and ask questions all the time. There are
> some
> very helpful people on this group, so take care
>
> janers
>
>

cloud

2005-04-05, 6:28 pm

> Cloud,
> I haven't been offered any other drugs except Relafen and it doesn't do
> a thing for me (except weight gain that goes away a week after I'm off
> it)

*Could this be the edema i spoke earlier of in another post?

All my favorite hobbies are too painful to pursue, I pay dearly
> after and I can't afford right now (literally) to miss any more days of
> work than I am now. The money I earn working pays my ins. and drug
> co-pays. I am in a Catch-22 situation-too sick to work full-time no
> diagnosis to allow me to not work and refused regular medical insurance
> because my endo put in his files that I had an abnormal test of some
> kind.

*It would be good for you if you could get a copy of the files where the
endo mentions the specifics of your abnormal test.
These may be helpful to share with your new Rheumatologist.

My 69 year old mother is paying $500. per month for my state
> sponsored high risk health insurance (which will last another 2 years)
> and whatever money I earn mostly goes towards the 20% co-pays for
> everything plus $25. per doctor visit.

*I did not really misunderstand you. Just me and the way my brain
functions.
You are indeed correct about SS loving to apply labels. And generally they
employ a lot of medical backbone to the labels.

I think you misunderstood me, I
> am absolutely for SSI if you need it and in fact having lived in
> several other countries (including the social service paradise of
> Denmark) wish that we had some kind of a safety net in this country.
> But (and I won't bore you with details) I have paid into a public
> employee pension system (state) not Social Security (federal) and the
> rules are different-I need to work and get back into the system in
> order to ever get disability if my condition worsens. I'm in a really
> bad situation. But I promise if I ever do get some meds and my hands
> get better I'll knit you something (not socks though, no patience!!)

* okay on the socks. I will remind you when your skipping rope and playing
in the playground and forgot all about Lupus and those other bad things
which go ouch in the night.

Maybe someday we can have a health care system like those civilized
countries do. Problem is, this is capitalism.
Have a super day!!

Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

cloud

2005-04-05, 6:28 pm

My personal preference is to not take NSAIDS. I have found they do exactly
as my rheumatologist told me, "they pool fluid to the extremities." They
certainly did not help my sweet little ankles. When I came off them, I
noticed a signifigant difference.
But some people swear by them and if it works for them, I am happy for them.
Just thought i would comment on this also.
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

> Thanks Cindy and I'm so sorry you're in the same boat as J, it's awful
> I know (wish I didn't

> I hope you do have something that works if the NSAIDs don't. Gosh, this
> is no fun, but you all are very supportive, thanks!
> T
>

tejoyo@yahoo.com

2005-04-05, 6:28 pm

Hey Cloud,
Hope today is a good day. Yes, I was diagnosed with Hashi's in '01 and
take Synthroid/Cytomel. After my first 17 doctors I lucked out with
probably the best endo in the world (he's 82 and still works 5 days a
week when he isn't traveling the world teaching and lecturing-did I
mention I'm in love with him...) He has been saying for a while that I
have another autoimmue illness esp. since after 4 years of medication
my thyroid antibodies are through the roof (above 1000 when high lab
range is 200) he says they should have gone down by now. I was also
diagnosed with FM last summer but that I can live with, it's the joint
pain and stiffness and not being able to use my hand that I can't deal
with-the rheumatologist basically dismissed me but then sent a letter
to my endo saying "r/o emerging RA/lupus." Thanks for the advice on
writing stuff down, not only do I do that but since '01 I've been
putting every symptom in my calendar book and keeping them from year to
year. I don't care if I seem neurotic I've learned that I can't rely on
doctors for very much.
And I promise during sky diving during breaks I'll knit you a nice
afghan...
Be well.

tigtig24

2005-04-08, 10:25 pm

im new also here and i have a few questions two years ago i was dx with
chronic lyme disease in michigan and was recieving treatment IV felt
great when done a month later. well now i have moved to california and
am having what i thought was a relapse. according to this ID doctor he
thinks it could be lupus well i had a complement test done and on c4 it
was abnormal but the other three were fine. now my question is does
anyone know what test to ask for to get a confirmation on lupus that
lyme can not effect the results.. and i dont mean to be harsh but
this is my opinion but i would rather have lupus then chronic lyme
disease because it is the worse pain there ever is to deal with. you
feel like you are laying on a open bomb fire. basically if you have
heard of human combustion if you have lyme you feel like you have
discoved the beginning of it.

2005-04-08, 10:25 pm

Hi T:

I've been quiet though lurking periodically. This is a great place to
be if you have questions, seek information, feel overwhelmed, or even
lonely. Glad you found us.

When I first "joined" this group, years ago, I was at a low point in my
life. Young children, a stressful job, multiple diagnoses, etc.
Through the years, and often with the help of this group, I've managed
to figure out what works/doesn't work for me and, armed with facts, have
learned to self-advocate. (No less important is a rheumatologist or
doctor who will work with you and whom you trust.) I've been sick since
my 20s and am now in my early 50s so I have had many years to practice.

It was from this group that I first learned about the role of sun and UV
light on my health. Whoa, that was a biggie!! Just understanding this
has had a major role in improving my situation! No wonder I'd come home
from taking the kids on an outing feeling absolutely horrible!! My
friends would come home from their outings feeling invigorated. Grrr.
(Granted, I still struggle constantly like all the rest of us here.)

I managed to hang on to my job (though there were years when I wondered
how) and now have ADA accommodations that give me a reduced work load
plus permit me to work from home most Wednesdays (which is where I am
today). It is hard not to envy the energy of my colleagues but in the
end we must accept our limitations.

Anyway, T, my point is that life continues and most of us figure out how
to have a quality life with the limits given to us. (That's not saying
we don't struggle constantly and worry about our futures.) I have
several role models in my family with severe limitations of their own
which helps me keep my problems in perspective. Faith helps, too.

Good luck on your journey!

cp

tejoyo@yahoo.com wrote:
> Hi everyone,
> Thought since I already posted I'd briefly introduce myself. My back is
> bad this week so I can't type much.

Montysalud

2005-04-08, 10:25 pm

Dear Friend,
I tell you the same that I said to all the group. Study this product. It´s
simply great!!!!
http://www.wellnesswatch.net/succes...s/lupus_ss.html
Contact me at arismari@yahoo.com.mx

<tejoyo@yahoo.com> escribió en el mensaje
news:1112716260.805069.88220@g14g2000cwa.googlegroups.com...
> Hey Cloud,
> Hope today is a good day. Yes, I was diagnosed with Hashi's in '01 and
> take Synthroid/Cytomel. After my first 17 doctors I lucked out with
> probably the best endo in the world (he's 82 and still works 5 days a
> week when he isn't traveling the world teaching and lecturing-did I
> mention I'm in love with him...) He has been saying for a while that I
> have another autoimmue illness esp. since after 4 years of medication
> my thyroid antibodies are through the roof (above 1000 when high lab
> range is 200) he says they should have gone down by now. I was also
> diagnosed with FM last summer but that I can live with, it's the joint
> pain and stiffness and not being able to use my hand that I can't deal
> with-the rheumatologist basically dismissed me but then sent a letter
> to my endo saying "r/o emerging RA/lupus." Thanks for the advice on
> writing stuff down, not only do I do that but since '01 I've been
> putting every symptom in my calendar book and keeping them from year to
> year. I don't care if I seem neurotic I've learned that I can't rely on
> doctors for very much.
> And I promise during sky diving during breaks I'll knit you a nice
> afghan...
> Be well.
>

2005-04-08, 10:25 pm

Montysalud wrote:

> http://www.wellnesswatch.net/succes...s/lupus_ss.html

The fine print on this website says "The information listed on this site has
not been evaluated by the Food and Drug Administration and is not intended to
diagnose, cure, treat or prevent disease."

Don't waste your time or money, folks,
J