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Worrying myself to death
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| crillee 2005-01-01, 7:11 pm |
| Hello all!
I have been reading posts for a month or so and have finally decided to
join in with you all, you are a great group!
Here is my story. About 2 months ago I was getting weird motion
sickness like feelings that would be followed by a weird body
sensation, almost like a heavyiness. 9 times out of 10 this would
happen after eating so I focused on allergies, particularly soy (was
doing lo-carb and eating alot of it, oddly this symptom seemed to stop
when I stopped this). Went to my PCP, who ran a bunch of blood tests
including the basics along with RF, SED rate, ANA and many allergies.
No allergies, RF neg, SED very very low, ANA positive. Now the ANA was
just a screen and not a titer so I have no clue what it was. My PCP
said he wouldn't be a good doctor if he didn't send me to a rheumy so
off I went.
The rheumy ran about 14 tests including the whole lupus panel which all
came out neg. Not one blood test was out of whack.
After talking over my symptoms:
bad sleep (this has been long time, I always blamed on bed and pillow)
very tense shoulders and neck muscles as well as scalp muscles (this
would produce headaches and lots of pain)
random bouts of achy (like flu) episodes
a "carbonation" like feeling in my body when I lay still
pain in the inside of my elbow
pain around my knees and fingers
He tested tender points, I about died when he touched my under my
collar bone on my chest, I had most of them. He diagnosed Fibro.
My question is this...should I continue to monitor for Lupus? Something
else? Does an ANA screen (NOT titer) have a high false positive rate?
Do I go back and get it tested again? Everyday I worry about this and
can't stop thinking about this.
I appreciate all your help and info.
Thank you!!
Crillee
| |
|
| Hi Crillee,
It is often quiet around here on weekends anyway and with the holidays it is
especially so. I would like to take the time to welcome you though. I am
sure that others will pop in soon to offer some suggestions. I really don't
know a lot about fibro, but I do know it can be secondary to some other
conditions. I don't think the positive ANA is all that significant when all
your other tests were completely normal. It is my understanding that it
would be found in a certain percentage of healthy individuals. I will try to
look that up for you, when I get a chance.
BJ-Sk. Canada
"crillee" <crillee@verizon.net> wrote in message
news:1104606949.879111.6850@z14g2000cwz.googlegroups.com...
> Hello all!
>
> I have been reading posts for a month or so and have finally decided to
> join in with you all, you are a great group!
>
> Here is my story. About 2 months ago I was getting weird motion
> sickness like feelings that would be followed by a weird body
> sensation, almost like a heavyiness. 9 times out of 10 this would
> happen after eating so I focused on allergies, particularly soy (was
> doing lo-carb and eating alot of it, oddly this symptom seemed to stop
> when I stopped this). Went to my PCP, who ran a bunch of blood tests
> including the basics along with RF, SED rate, ANA and many allergies.
> No allergies, RF neg, SED very very low, ANA positive. Now the ANA was
> just a screen and not a titer so I have no clue what it was. My PCP
> said he wouldn't be a good doctor if he didn't send me to a rheumy so
> off I went.
>
> The rheumy ran about 14 tests including the whole lupus panel which all
> came out neg. Not one blood test was out of whack.
> After talking over my symptoms:
>
> bad sleep (this has been long time, I always blamed on bed and pillow)
> very tense shoulders and neck muscles as well as scalp muscles (this
> would produce headaches and lots of pain)
> random bouts of achy (like flu) episodes
> a "carbonation" like feeling in my body when I lay still
> pain in the inside of my elbow
> pain around my knees and fingers
>
> He tested tender points, I about died when he touched my under my
> collar bone on my chest, I had most of them. He diagnosed Fibro.
>
> My question is this...should I continue to monitor for Lupus? Something
> else? Does an ANA screen (NOT titer) have a high false positive rate?
> Do I go back and get it tested again? Everyday I worry about this and
> can't stop thinking about this.
> I appreciate all your help and info.
>
> Thank you!!
> Crillee
>
| |
| crillee 2005-01-02, 11:09 am |
| Hi BJ-
Thank you for the welcome! I appreciate any insights and look forward
to meeting everyone else!
Hope everyone is getting their New Year off to a wonderful start!
Crillee
| |
|
| crillee wrote:
> bad sleep (this has been long time, I always blamed on bed and pillow)
> very tense shoulders and neck muscles as well as scalp muscles (this
> would produce headaches and lots of pain)
> random bouts of achy (like flu) episodes
> a "carbonation" like feeling in my body when I lay still
> pain in the inside of my elbow
> pain around my knees and fingers
>
> He tested tender points, I about died when he touched my under my
> collar bone on my chest, I had most of them. He diagnosed Fibro.
I can't remember rheumy pressing there, but I just did and one side hurts,
so I don't do it :-)
My ANA was 1:160 some 6 or 7 years ago and since has been negative.
Ive got aotoimmune thyroid. I take a pill for it every day. My uncle had
lupus. My brother might.
I also get B12 deficent and have to have injections for that. I also get
steroid injections in the shoulders for OA..
a slew of other chroinic problems.
I was wondering if you would want to run ideas by the fibro newsgroup?
I took Elavil for about 12 years. It helped a lot with sleep and pain, but
others take other meds.
they are at news:alt.med.fibromyalgia
Have you had an overnight sleep test to make sure you don't have any of the
possible (treatable) sleep disorders?
J
| |
|
| In article <10tg2hp206h7lf0@corp.supernews.com>, BJ <Babs@sk.nojunk.ca>
wrote
>Hi Crillee,
>It is often quiet around here on weekends anyway and with the holidays it is
>especially so. I would like to take the time to welcome you though. I am
>sure that others will pop in soon to offer some suggestions. I really don't
>know a lot about fibro, but I do know it can be secondary to some other
>conditions. I don't think the positive ANA is all that significant when all
>your other tests were completely normal. It is my understanding that it
>would be found in a certain percentage of healthy individuals.
I think it's around 8-10% - and about 3-5% of lupies have a normal ANA!
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| crillee 2005-01-02, 7:11 pm |
| Thank you for the info. I guess what I really want to know is if I can
pretty much take the fibro diagnosis and not worry about something
else. I am concerned that I had a positive ANA -though since it was
just a screen and not a titer I don't know what it was. I know some
fibro presents with a low positive, and I was wondering since it was
just a general screen could it have been a false positive?
Should I keep worrying that I may have lupus? I mean I am afraid of the
sun now even though I have never had any issues-and many other things
cause I am afraid that it just hasn't "come to the surface" so to
speak. Should I continue to test my ANA or just watch symptoms. I think
I am really afraid because I don't want to have any internal damage and
not know about it. You read so many stories of that happening. My
husband and I were planning to start trying to have a baby and now I am
really anxious about that. sigh. It is amazing how we can torture
ourselves with things 
| |
|
| Andy wrote:
>
> I think it's around 8-10% - and about 3-5% of lupies have a normal ANA!
http://206.161.82.9/education/articles/ana.html (appears to be mirroring the LFA
foundation website)
Understanding the positive ANA test
What does a positive ANA mean? Unlike a pregnancy test, which if positive
generally means only one thing, a positive ANA can mean many things. There are
many illnesses and conditions associated with a positive ANA, including
rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as
infectious diseases such as mononucleosis, subacute bacterial endocarditis, and
autoimmune thyroid and liver disease. Certain medications can cause a positive
ANA, and many healthy people with no associated illness or condition have a
positive ANA. In fact, about 5% of the general population will have a positive
ANA yet fewer than 1 in 1,000 have lupus. Thus, at least 95% of the people who
have a positive ANA do not have lupus! A positive ANA test can sometimes run in
families, even if family members have no evidence of lupus. The ANA is only a
test and, like a high cholesterol value, a positive ANA doesn't necessarily
equate having a disease. A positive ANA is only an indicator which points in
several possible directions, and indicates that further investigation and
analysis may be needed.
How does your doctor use the ANA result?
The doctor will view your ANA and other lab results in light of your history and
physical exam to determine if there is sufficient evidence to diagnose a specific
illness. "
| |
|
| crillee wrote:
> . Should I continue to test my ANA or just watch symptoms. I think
> I am really afraid because I don't want to have any internal damage and
> not know about it. You read so many stories of that happening. My
> husband and I were planning to start trying to have a baby and now I am
> really anxious about that. sigh. It is amazing how we can torture
> ourselves with things
Continue to get ANA monitored yearly, assume you have fibro (report
anything new to yuor doctor) but do get tested for Hughes Syndrome
http://www.ghg.net/schwerpt/ASLFAQ/symptoms.htm#hughes
PS our labs put a value beside the "ANA postiive" that shows up on the lab
report.
I always tell people to get and keep records of their lab reports.
J
| |
| crillee 2005-01-02, 7:11 pm |
| Very good information J!
So how do I handle this emotionally? How do I stop the worry?
| |
| crillee 2005-01-02, 7:11 pm |
| My lab on the first ANA which sent me to the Rheumy did not put a
value, simply says positive. The Rheumy of course ran it again and
specified a titer test, this was negative. I have copies of all my
labs, can't imagine people not wanting to see them, its about me after
all!
Thank you J!
| |
| Beverley 2005-01-03, 2:09 am |
| There are a few people around here with FM. It can stand alone or with other
autoimmune problems. Seems there are a whole lot of cross-over problems.
Stop worrying and just do your research. Being educated really helps when it
comes to asking the right questions and understanding the answers!
I think we are a pretty nice group too!
((hugs))
Bev
"crillee" <crillee@verizon.net> wrote in message
news:1104606949.879111.6850@z14g2000cwz.googlegroups.com...
> Hello all!
>
> I have been reading posts for a month or so and have finally decided to
> join in with you all, you are a great group!
>
> Here is my story. About 2 months ago I was getting weird motion
> sickness like feelings that would be followed by a weird body
> sensation, almost like a heavyiness. 9 times out of 10 this would
> happen after eating so I focused on allergies, particularly soy (was
> doing lo-carb and eating alot of it, oddly this symptom seemed to stop
> when I stopped this). Went to my PCP, who ran a bunch of blood tests
> including the basics along with RF, SED rate, ANA and many allergies.
> No allergies, RF neg, SED very very low, ANA positive. Now the ANA was
> just a screen and not a titer so I have no clue what it was. My PCP
> said he wouldn't be a good doctor if he didn't send me to a rheumy so
> off I went.
>
> The rheumy ran about 14 tests including the whole lupus panel which all
> came out neg. Not one blood test was out of whack.
> After talking over my symptoms:
>
> bad sleep (this has been long time, I always blamed on bed and pillow)
> very tense shoulders and neck muscles as well as scalp muscles (this
> would produce headaches and lots of pain)
> random bouts of achy (like flu) episodes
> a "carbonation" like feeling in my body when I lay still
> pain in the inside of my elbow
> pain around my knees and fingers
>
> He tested tender points, I about died when he touched my under my
> collar bone on my chest, I had most of them. He diagnosed Fibro.
>
> My question is this...should I continue to monitor for Lupus? Something
> else? Does an ANA screen (NOT titer) have a high false positive rate?
> Do I go back and get it tested again? Everyday I worry about this and
> can't stop thinking about this.
> I appreciate all your help and info.
>
> Thank you!!
> Crillee
>
| |
| Michael Roeper 2005-01-03, 10:09 pm |
| You know. One thing to consider is the treatment for the fibro. That is to
say, are you getting the same (or similar) treatment for the Fibro that you
would get for Lupus. I'm ANA negativer but hafe outragueosly high titers of
antiphosphoidlipid (Hughes Syndrome). Point being, do I have Lupus or not?
Doesn't matter as the tratment for what I got and the treatment for Lupus is
the same. The Doc's said I had "Lupus" sop I could get SS benefits. The
majority says I have Lupus, everyone but ther rheumy.
Don't matter to me. They treat me as though I do. Make sense. As far as the
emotional stuff, get a good friend and some Xanex prescribed.
And beware of the Firbo NG. I found it to be so far removed as a support
group I came running back here. Lot's of fighting and negative stuff. These
Lupus folks are top notch, it's where you will find a home.
Just my opinion.
Michael
"Beverley" <beverly.brown28@verizon.net> wrote in message
news:uQ3Cd.21386$tG3.6055@trnddc02...
> There are a few people around here with FM. It can stand alone or with
other
> autoimmune problems. Seems there are a whole lot of cross-over problems.
> Stop worrying and just do your research. Being educated really helps when
it
> comes to asking the right questions and understanding the answers!
>
> I think we are a pretty nice group too!
> ((hugs))
> Bev
>
>
> "crillee" <crillee@verizon.net> wrote in message
> news:1104606949.879111.6850@z14g2000cwz.googlegroups.com...
>
>
| |
|
| crillee wrote:
> Very good information J!
> So how do I handle this emotionally? How do I stop the worry?
Hello crillee,
The way I would do it, is mark the ANA on a wall calendar say, about next
October, then ask the doctor to recheck it.
I use a wall calendar to mark birthdays, appointments etc. It works for
me.
If it's written down somewhere safe where I can't lose it (the wall should
be there next autumn, it's off my brain, so I don't worry about it. I just
check once a week to see what's coming up that I should take care of.
You have other things to get moving on now.
Financial planning to educate a child for the next 25? years. (or go to
work to get the finances in place for future education and home-buying)
Checkup st obygn? to make sure you're healthy and ready for a baby.
LaMaze - breast feeding.
You and hubby sharing "get into shape time" (walking running together
binds a family togehter)
Exploring various healthy recipes, and quick ones for when baby is there.
Healthy eating, ask about folic acid. I think that's one on the baby list
for momma.. (I'm not an expert)
Looking into safety proofing your home. Investigating car seats, cots.
Making "feel good" baskets, one for you, one for hubby, with massage oils
and fav music, so you can strengthen your partnership (before a complete
stranger baby enters your lives) and those massages provide "couple time"
for weary parents to refresh their relationship and helps with muscles too
!
Lots to keep busy with. Keep your mind off things and be good to
yourselves !
J
| |
|
| Michael Roeper wrote:
> And beware of the Firbo NG. I found it to be so far removed as a support
> group I came running back here. Lot's of fighting and negative stuff. These
> Lupus folks are top notch, it's where you will find a home.
Good point, but it's so quiet here...
The least she could is read some of the posts there and see what meds they're
on, however if she's going to have a baby, she'd have to check with doctor.
Relax time, heat, warm baths, gentle massage, other ways of coping.
J
| |
| herbwormwood 2005-01-04, 11:09 am |
| Hi,
Micheal is right that the diagnodis doesnt really matter. As long as someone
is willing and able to help you.
What you wrote:
weird motion[vbcol=seagreen]
sounds a lot like what I had from CNS lupus and antiphospholipid syndrome AKA
hughes syndrome. So make sure you get tested for that. It can be treated.
| |
| Stephanie Townsend 2005-01-04, 11:09 am |
| I second that Michael -- my bloodwork doesn't say "Lupus" either, but my
"presentation" was so similar they are treating as though I have Lupus and I
am finally getting better. I have been diagnosed with Fibro as well as
"sub-clinical/or mild (depends who you talk to) Lupus" as well as a host of
other weird things. Treating me as though I had both made the biggest
difference -- managing pain similar to a Fibro patient, but then also taking
a DMARD like Plaquenil for the Lupus-like symptoms. Hang in there Crillee,
it can get better - I would be happy to answer any questions you may have!
Steph
"Michael Roeper" <roeper@comcast.net> wrote in message
news:yhnCd.323436$HA.253081@attbi_s01...
> You know. One thing to consider is the treatment for the fibro. That is to
> say, are you getting the same (or similar) treatment for the Fibro that
> you
> would get for Lupus. I'm ANA negativer but hafe outragueosly high titers
> of
> antiphosphoidlipid (Hughes Syndrome). Point being, do I have Lupus or not?
> Doesn't matter as the tratment for what I got and the treatment for Lupus
> is
> the same. The Doc's said I had "Lupus" sop I could get SS benefits. The
> majority says I have Lupus, everyone but ther rheumy.
>
> Don't matter to me. They treat me as though I do. Make sense. As far as
> the
> emotional stuff, get a good friend and some Xanex prescribed.
>
> And beware of the Firbo NG. I found it to be so far removed as a support
> group I came running back here. Lot's of fighting and negative stuff.
> These
> Lupus folks are top notch, it's where you will find a home.
>
> Just my opinion.
>
> Michael
>
> "Beverley" <beverly.brown28@verizon.net> wrote in message
> news:uQ3Cd.21386$tG3.6055@trnddc02...
> other
> it
>
>
| |
| crillee 2005-01-04, 11:09 am |
|
I thank everyone for all the wonderful advice, you are all just
wonderful and as I have observed, much more helpful than the FMS
newsgroup.
I guess my little worrywart self is still questioning....
>From what you said about "it doesn't matter about the diagnosis"...am I
supposed to live like I have lupus even though they don't call it that
and I don't have any real symptoms? i.e should I be on plaquenil? Avoid
the sun?
I guess I am grasping, becuase I really don't want lupus.
| |
| crillee 2005-01-04, 11:09 am |
|
I thank everyone for all the wonderful advice, you are all just
wonderful and as I have observed, much more helpful than the FMS
newsgroup.
I guess my little worrywart self is still questioning....
>From what you said about "it doesn't matter about the diagnosis"...am I
supposed to live like I have lupus even though they don't call it that
and I don't have any real symptoms? i.e should I be on plaquenil? Avoid
the sun?
I guess I am grasping, becuase I really don't want lupus.
Thanks for all the information,
Crillee
| |
| Michael Roeper 2005-01-04, 11:09 am |
| You know something Kiddo! None of us want Lupus either but you got to play
the hand you were delt. I have Fibro too, it took years to get the Lupus
diagnosed. My wife left me because she thought I was lazy (I couldn't work).
We know how you feel.
I'm sitting here watching a $3,000 sprinkler system I had installed last
year freeze up because I can't get anyone to help winterize it. THAT's just
my stress of the week and probably in the overall sceme of things isn't
really couldn't be less important.
But you got to put one foot in front of the other, you have a child, you got
to do the best you can with that too. You find out that in the overall sceme
of things, if you can manage to do 80% of the things at the end of the dsay
that you absolutly HAVE TO GET DONE, it was a pretty good day. I know that's
a lot different from what you're used to but if you have Lupus, all the
crying in the world isn't gonna help. You sound like you "used to be" a very
capable, in charge type of woman. You're going to have to get used to things
being different now. I don't mean to sound harsh at all and I apologise if I
am but....these things all change a lot with any of these disease's we're
talking about here.
Get checked for the Hughes Syndrome too. I got it real bad and can give you
some input on how to deal with that. I even have some pamphlets I can send
you I got from England where Dr. Hughes discovered the darn thing. It too is
not something you're gonna want to have but there is "life after Hughes
Syndrome" too. It, like Lupus, is treatable. That doesn't mean you're ever
gonna feel 20 years old again but it's better than it used to be and they're
working on all of this (medically speaking) a lot more than they used to..
Michael
Good luck to you
..
"crillee" <crillee@verizon.net> wrote in message
news:1104852592.063048.315710@c13g2000cwb.googlegroups.com...
>
> I thank everyone for all the wonderful advice, you are all just
> wonderful and as I have observed, much more helpful than the FMS
> newsgroup.
>
> I guess my little worrywart self is still questioning....
>
> supposed to live like I have lupus even though they don't call it that
> and I don't have any real symptoms? i.e should I be on plaquenil? Avoid
> the sun?
>
> I guess I am grasping, becuase I really don't want lupus.
> Thanks for all the information,
>
> Crillee
>
| |
| Michael Roeper 2005-01-04, 11:09 am |
| I jsu trealized I confused the "having a child" thing with another thread
I'm working on....sorry about that. Most of my mind still is working right,
I think.
"Michael Roeper" <roeper@comcast.net> wrote in message
news:eCzCd.748387$mD.39118@attbi_s02...
> You know something Kiddo! None of us want Lupus either but you got to play
> the hand you were delt. I have Fibro too, it took years to get the Lupus
> diagnosed. My wife left me because she thought I was lazy (I couldn't
work).
> We know how you feel.
>
> I'm sitting here watching a $3,000 sprinkler system I had installed last
> year freeze up because I can't get anyone to help winterize it. THAT's
just
> my stress of the week and probably in the overall sceme of things isn't
> really couldn't be less important.
>
> But you got to put one foot in front of the other, you have a child, you
got
> to do the best you can with that too. You find out that in the overall
sceme
> of things, if you can manage to do 80% of the things at the end of the
dsay
> that you absolutly HAVE TO GET DONE, it was a pretty good day. I know
that's
> a lot different from what you're used to but if you have Lupus, all the
> crying in the world isn't gonna help. You sound like you "used to be" a
very
> capable, in charge type of woman. You're going to have to get used to
things
> being different now. I don't mean to sound harsh at all and I apologise if
I
> am but....these things all change a lot with any of these disease's we're
> talking about here.
>
> Get checked for the Hughes Syndrome too. I got it real bad and can give
you
> some input on how to deal with that. I even have some pamphlets I can send
> you I got from England where Dr. Hughes discovered the darn thing. It too
is
> not something you're gonna want to have but there is "life after Hughes
> Syndrome" too. It, like Lupus, is treatable. That doesn't mean you're ever
> gonna feel 20 years old again but it's better than it used to be and
they're
> working on all of this (medically speaking) a lot more than they used to..
>
> Michael
>
> Good luck to you
>
> .
> "crillee" <crillee@verizon.net> wrote in message
> news:1104852592.063048.315710@c13g2000cwb.googlegroups.com...
>
>
| |
| crillee 2005-01-04, 7:12 pm |
|
So pretty much you are all telling me I have lupus. It is possible that
I just have fibromyalgia, my mother has it. I know that I am being
whiney I am just trying to deal, I really just wanted to know how much
I should pursue making sure it is not lupus. I know that know one here
wants to be sick, I apologize if I made light of anyone's situation.
I will bow out if someone can just answer whether or not they think I
should be on Plaguenil then if you all think I have lupus, not just
fibro.
| |
| Michael Roeper 2005-01-04, 7:12 pm |
| No, you don't necessarily have Lupus...I think what we're telling you is to
investigate further, not to worry cause there's worse things than having
Lupus and....it's important that you get this, you're welcome here.
And I don't think you';re being "winney."
I've done more than my share of sniveling. Your apologies are not required.
Michael
"crillee" <crillee@verizon.net> wrote in message
news:1104864785.390890.299510@z14g2000cwz.googlegroups.com...
>
> So pretty much you are all telling me I have lupus. It is possible that
> I just have fibromyalgia, my mother has it. I know that I am being
> whiney I am just trying to deal, I really just wanted to know how much
> I should pursue making sure it is not lupus. I know that know one here
> wants to be sick, I apologize if I made light of anyone's situation.
>
> I will bow out if someone can just answer whether or not they think I
> should be on Plaguenil then if you all think I have lupus, not just
> fibro.
>
| |
|
| Many of us on this group are in DX limbo and many of us have combinations of
illnesses/ Lupus as well as many other illnesses are difficult to diagnois.
As long as you are seeing a physician or physicians and 'they' are taking
you seriously and doing something to help you ease your pain and symptoms
you are headed in the right direction.
I have a dx of fibromyalgia and of Lupus so you can have one or the other
and even both.
Don't bow out of the group if someone says "yes, I think that you might get
some relief with Plaquenil" Plaquenil does not provide immediate relief
from the symptoms and in some cases it does not eliminate them either but
does ease them.
What you need as well as what all of us need are doctors who believe our
symptoms and understand that the test results do not always give an accurate
picture of what is happening with our bodies. We know our bodies and we
know when something is not right and we need to be believed and treated with
or without a dx!
Hang in there and by the way welcome to the group.
Hugs,
Sherry
| |
| crillee 2005-01-04, 7:12 pm |
|
I know the trials and tribulations of this entire process are
frustrating, from my symptoms I don't think I have lupus...yet anyway.
I just don't want to have something happen to my organs becuase of my
ignorance.
sigh....I see xanax in my future
Crillee
| |
|
| I guess the best thing to say would be stay on top of your symptoms but
don't spend so much time worrying about the what ifs and whats next. <g>
easier said than done for sure.
Hugs,
Sherry
| |
|
| Hi Crillee,
I see that many others have now stopped by with suggestions and info for
you. I said I would try to talk to you a little more, so here goes. I don't
know how you can handle the worry. I think, for now, you can take the fibro
diagnosis as being correct and get as much help from your doctor as
possible. Keep the positive ANA in mind though, and ask the doctor to
recheck if you have any new symptoms that might point to an autoimmune
problem. It is hard when you are a worrywart. I am one too, and I don't seem
to be able to take control in that regard. I do find that keeping busy and
making the best of what I can do seems to help. You are most welcome to stay
around and talk to us. You don't have to have lupus to be here. All on us
with a chronic illness share the same concerns. There is usually someone
here to chat.
BJ-Sk. Canada
"crillee" <crillee@verizon.net> wrote in message
news:1104867278.953241.79650@f14g2000cwb.googlegroups.com...
>
> I know the trials and tribulations of this entire process are
> frustrating, from my symptoms I don't think I have lupus...yet anyway.
> I just don't want to have something happen to my organs becuase of my
> ignorance.
>
> sigh....I see xanax in my future
>
>
> Crillee
>
| |
| Beverley 2005-01-07, 7:12 pm |
| I know I'm a little late on this subject but just because you are dx'ed with
lupus doesn't mean you need to be on medication. Just about the strongest
thing I take for most of my lupus symptoms is aspirin because my body can
tolerate it. I'm also not real sick with lupus. I've had some strange bouts
of stuff over the years but on a day to day basis I just feel mildly crappy.
I wear out easily. I'm tired when I shouldn't be and that doesn't mean I'm
sleepy. There's a difference between being tired and being sleepy.
Some folks out here couldn't manage to walk across the room with out being
heavily medicated. I'm sure more than one has used the eraser end of the
pencil to type on the computer because of finger and joint pain. It all
varies.
What I do know is my doctor watches me closely so I don't have organ
involvement and if I do then he'll think about pulling out some meds to
handle the problem. The rest of the time I'm pretty much on my own to watch
what I do, what I eat, and how my system is functioning.
I think the hardest part for me has been learning to stay within my
boundaries of what I can and cannot do in a day's time. Often I still goof
that up because I tend to do more when I feel good - that translates to
over-doing it and then paying the price for days afterwards. But rare do I
wind up totally debilitated by this disease (knocking on wood!) that's why I
say I'm mild compared to many of the folks out here. But you have to
remember that auto-immune diseases are not the same in everyone. What we all
seem to have in common is the constant pain, be in mild or severe, and just
plain sick and tired of being sick and tired!
Some days my attitude goes into the hopper and I just want to curl up and
make the whole day, pain and all, go away. But most of the time I refuse to
let lupus beat me. I will do my part to try to keep myself healthy in
general and not give into every little ache.
Educate yourself. Read the URL's in KCat's sig and Andy's sig lines (mirror
sites). Keep a journal and show the doctor your journal. Keep track of what
you do and how you feel. Did you go shopping for groceries and then couldn't
do anything else that day? Were you in pain or just tired? Not only will
this help your doctor it will help you to budget your time and recognize
your limits.
I hate going shopping. I always have even as a kid. Now I realize why I hate
shopping, it makes me feel lousy and super tired! Is it the lighting in the
stores? Maybe, add to it concrete floors, sunlight and all the walking or
worse yet, standing. So now I really avoid shopping except for groceries
which are a must but when I'm done I don't plan to do much else afterwards
because I know I'm going to be tired. I've also found it's better if I just
make it a quick trip rather than buying a huge amount on any one trip. Get
in, grab what is needed, and get out!
I don't think that is very different for most auto-immune patients no matter
what handle they give the problem.
Bev
"crillee" <crillee@verizon.net> wrote in message
news:1104867278.953241.79650@f14g2000cwb.googlegroups.com...
>
> I know the trials and tribulations of this entire process are
> frustrating, from my symptoms I don't think I have lupus...yet anyway.
> I just don't want to have something happen to my organs becuase of my
> ignorance.
>
> sigh....I see xanax in my future
>
>
> Crillee
>
| |
| herbwormwood 2005-01-08, 7:08 am |
| On Fri, 7 Jan 2005 18:34:53 +0000, Beverley wrote
(in article <hDADd.24$SS6.4@trnddc07> ):
> I know I'm a little late on this subject but just because you are dx'ed with
> lupus doesn't mean you need to be on medication. Just about the strongest
> thing I take for most of my lupus symptoms is aspirin because my body can
> tolerate it. I'm also not real sick with lupus. I've had some strange bouts
> of stuff over the years but on a day to day basis I just feel mildly crappy.
> I wear out easily. I'm tired when I shouldn't be and that doesn't mean I'm
> sleepy. There's a difference between being tired and being sleepy.
>
> Some folks out here couldn't manage to walk across the room with out being
> heavily medicated. I'm sure more than one has used the eraser end of the
> pencil to type on the computer because of finger and joint pain. It all
> varies.
>
> What I do know is my doctor watches me closely so I don't have organ
> involvement and if I do then he'll think about pulling out some meds to
> handle the problem. The rest of the time I'm pretty much on my own to watch
> what I do, what I eat, and how my system is functioning.
>
> I think the hardest part for me has been learning to stay within my
> boundaries of what I can and cannot do in a day's time. Often I still goof
> that up because I tend to do more when I feel good - that translates to
> over-doing it and then paying the price for days afterwards. But rare do I
> wind up totally debilitated by this disease (knocking on wood!) that's why I
> say I'm mild compared to many of the folks out here. But you have to
> remember that auto-immune diseases are not the same in everyone. What we all
> seem to have in common is the constant pain, be in mild or severe, and just
> plain sick and tired of being sick and tired!
>
> Some days my attitude goes into the hopper and I just want to curl up and
> make the whole day, pain and all, go away. But most of the time I refuse to
> let lupus beat me. I will do my part to try to keep myself healthy in
> general and not give into every little ache.
>
> Educate yourself. Read the URL's in KCat's sig and Andy's sig lines (mirror
> sites). Keep a journal and show the doctor your journal. Keep track of what
> you do and how you feel. Did you go shopping for groceries and then couldn't
> do anything else that day? Were you in pain or just tired? Not only will
> this help your doctor it will help you to budget your time and recognize
> your limits.
>
> I hate going shopping. I always have even as a kid. Now I realize why I hate
> shopping, it makes me feel lousy and super tired! Is it the lighting in the
> stores? Maybe, add to it concrete floors, sunlight and all the walking or
> worse yet, standing. So now I really avoid shopping except for groceries
> which are a must but when I'm done I don't plan to do much else afterwards
> because I know I'm going to be tired. I've also found it's better if I just
> make it a quick trip rather than buying a huge amount on any one trip. Get
> in, grab what is needed, and get out!
>
> I don't think that is very different for most auto-immune patients no matter
> what handle they give the problem.
> Bev
Dear Bev, crillee and all,
I just had to respond to this post because it hits the nail on the head for
me!
Unfortunately I have organ involvement and I also have some additional extra
lupus related conditions but a lot of my problems since diagnosis have been
medication related. The less medications you need, the better. It is true you
don't need medications just because you have lupus. You only need medications
to deal with the symptoms, and it is up to your doctor and you whether your
symptoms are severe enough to need the medications. All medications have side
effects and some are addictive.
Sometimes lifestyle changes can be enough to keep you from getting ill again.
I could not agree more with Bev that educating yourself is really important.
However be warned that some of the stuff you read may be unpleasant, but
websites and books on lupus tell about all different symptoms of lupus and
many people with lupus will never experience the more serious symptoms. So
don't read about a symptom and assume you will get it! Mostly I ignore the
medical stuff and focus on what I can do to help myself. I have had it for 26
years and I would have driven myself mad if I had dwelt on all the medical
problems!
>
>
> "crillee" <crillee@verizon.net> wrote in message
> news:1104867278.953241.79650@f14g2000cwb.googlegroups.com...
>
>
| |
|
| In article <0001HW.BE0574E5003315D7F04075B0@News.Individual.NET>,
herbwormwood <herbwormwood@lycos.co.uk> wrote
[]
>I could not agree more with Bev that educating yourself is really important.
>However be warned that some of the stuff you read may be unpleasant, but
>websites and books on lupus tell about all different symptoms of lupus and
>many people with lupus will never experience the more serious symptoms.
A good general rule is, if it was written more than 10 years ago it's
almost certainly out-of-date. Treatment and diagnosis have both improved
greatly in 10 - even 5 - years.
Remember that 100 years ago, "lupus" was a rare skin disease.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| crillee 2005-01-08, 11:11 am |
| You have all been so wonderful and reassuring!!!!!!!
It is true in an effort to educate myself I have read way too much
especially about personal experiences and it has just worried me to
death. It is goog to be educated but it is a fine line between
obsessive which is what I think I am becoming. I can handle pain, I can
handle tired but I am terrified of organ involvement. I do not want to
do internal damage becuase I was misdiagnosed.
Is there something I could do to feel I had some sort of power over
this aspect? I know kidney involvement usually has no symptoms, so what
can I do?
Crille the Worrywart
| |
| herbwormwood 2005-01-08, 11:11 am |
| On Sat, 8 Jan 2005 14:07:11 +0000, crillee wrote
(in article <1105193231.037395.152310@f14g2000cwb.googlegroups.com> ):
> You have all been so wonderful and reassuring!!!!!!!
> It is true in an effort to educate myself I have read way too much
> especially about personal experiences and it has just worried me to
> death. It is goog to be educated but it is a fine line between
> obsessive which is what I think I am becoming. I can handle pain, I can
> handle tired but I am terrified of organ involvement. I do not want to
> do internal damage becuase I was misdiagnosed.
> Is there something I could do to feel I had some sort of power over
> this aspect? I know kidney involvement usually has no symptoms, so what
> can I do?
>
> Crille the Worrywart
>
Hi Again Crillee,
Many people with lupus do not have organ problems and many do not ever have
kidney problems. Lupus does not mean kidney problems!
Kidney problems will show up in blood tests and urine tests so your doctor
should be on the look out for that. I understand it is fairly easy to
discover if you have kidney problems. But as far as I can see you have not
said you have kidney problems, so don't worry about it if you haven't got it.
As for doing something to feel you have power over this, you are already
starting to do it by learning. Secondly, many people get control by using the
power of the mind, relaxation and meditation exercises or prayer for those
who have religion. I understand that after a diagnosis (of a major health
problem) many people have a bit of a crisis. It can take a while to adjust
and accept what the situation is. That is where you are now. This is the
period of higher stress when you are worrying, talking, and learning. Then
you will calm down and get on with your life, having assimilated the new
knowledge and made any appropriate changes to your lifestyle and maybe
within yourself.
Keep coming back here with your news and ignore any posts which you think
will upset you. You can usually tell them from the subject line!
| |
|
| Hi Crillee,
I saw what Lynne (herbwormwood) wrote in the last reply to you. That is
excellent advice, I think. I do not have kidney problems, so I never read
about it. I will worry about that one, if it happens. It is good to read and
educate yourself, but try not to let it consume you. As I said, I am a
worrywart too, so I know that isn't easy. I have found out that a lot of
valuable time can be wasted worrying about something that may never happen.
Take the diagnosis of fibro. Do anything you can do to help you live well
with that condition. Try to be on top of any new symptoms that may come up.
Have a regular checkup, including blood work, so you know if anything
changes. Those are the things I would suggest. Oh yes, and talk to us
whenever you like.
BJ-Sk. Canada
"crillee" <crillee@verizon.net> wrote in message
news:1105193231.037395.152310@f14g2000cwb.googlegroups.com...
> You have all been so wonderful and reassuring!!!!!!!
> It is true in an effort to educate myself I have read way too much
> especially about personal experiences and it has just worried me to
> death. It is goog to be educated but it is a fine line between
> obsessive which is what I think I am becoming. I can handle pain, I can
> handle tired but I am terrified of organ involvement. I do not want to
> do internal damage becuase I was misdiagnosed.
> Is there something I could do to feel I had some sort of power over
> this aspect? I know kidney involvement usually has no symptoms, so what
> can I do?
>
> Crille the Worrywart
>
|
| |
|
|