As you probably already know, AS is one of the autoimmune diseases,
which means your immune system is misfiring and targeting your own
organs.  When your immune system is active, it is using all of your
body's available energy.  That is why you are so tired when you have
AS.  Your body is, literally, fighting an internal war.  And the
resulting damage often causes pain.

Other than medication, the best way to cope with the fatigue and pain
is not to resist it. You won't win.  My Dad always used to say "Pace
Yourself!" and it was the best advice I've ever been given.  Rest when
you need to, take those naps, work at the speed that enables you to get
it done without depleting whatever is left of your energy.  Listen to
your body.  Lots of folks say they have to get things done and keep
pushing themselves beyond their body's limits.  Then they can't do much
of anything.  You must take care of yourself in order to keep going.
Remember, the tortoise took a long time to finish, but he still beat
the hare. :-)

Robbie

"Has anyone had such fatigue that you always feel tired - from the time
you wake up until you go to bed, and have to push yourself to keep
moving, and" ... wish you could ... "take a nap at least once most
days?"

YES!

:-)

Spenser23as

Sorry to hear of your brother-in-law's passing. My sincere condolences
Christi, to you and your family. You're in my prayers.

Spenser23as

but with "tolerable" pain, has anyone
had such fatigue that you always feel tired - from the time you wake
up until you go to bed, and have to push yourself to keep moving, and
need to take a nap at least once most days?

YES!

Tyler





>From: kddid323 <no_reply@yahoogroups.com>
>Reply-To: Spondyville@yahoogroups.com
>To: Spondyville@yahoogroups.com
>Subject: [Spondyville] Fatigue and AS...
>Date: Tue, 01 May 2007 00:51:20 -0000
>
>I have been out of work in full or in part since December. I had
>surgery (pre-planned), and had a terrible flare in my hips/knees. I
>also was hugely fatigued. Through PT, being able to resume Enbrel, and
>cortisone shots, the hip/knee pain is much better.
>
>As a result of syptoms, I was sent for a sleep study, and diagnosed
>with severe sleep apnea. Once again I was relieved to have a
>diagnosis. Through research I saw that it could take up to a month to
>get used to the machine and mask you have to wear at night. It's been
>about 6 weeks, and the fatigue is minimally different. I was having
>some short term memory loss, and trouble concentrating. That has
>improved somewhat as well.
>
>I've had some flare in my neck, and have had 2 shots, and that is
>minimally better - I think it's exacerbated by the CPAP mask. My back
>is sore but tolerable with the meds.
>
>I know fatigue is part of AS, but with "tolerable" pain, has anyone
>had such fatigue that you always feel tired - from the time you wake
>up until you go to bed, and have to push yourself to keep moving, and
>need to take a nap at least once most days?
>
>I'm thinking my sleep apnea (CPAP machine) is not at a high enough
>level, and have a call out to my MD.
>
>Oh, also...as soon as I am off leave, I will be laid off from my work.
>I really want to feel well enough to go look for another job. Right
>now, I don't have the energy to look. As we always hear/say on the
>site, we don't give up, but I am frustrated by this perpetual tiredness.
>
>Any thoughts, experiences or suggestions are appreciated.
>
>Karen
>

I'm so sorry you have lost someone close to you, Christi. Thoughts and
prayers are with you and the rest of the family during this difficult
transition.

Tyler





>From: "christi" <cjjames3@...>
>Reply-To: Spondyville@yahoogroups.com
>To: Spondyville@yahoogroups.com
>Subject: [Spondyville] update on my brother-in-law
>Date: Tue, 01 May 2007 00:26:50 -0000
>
>hello all,
>    i just wanted to let you know that my brother-in-law passed away
>early this afternoon.  i want to thank you all for your prayers.  now
>we will be time for healing.  thank you for always being here for me.
>you are all appreciated.
>    thank you
>      christi
>

I have chronic fatigue, but I also have fibro.  When I do have an occasional
good day, not so  much pain or fatigue, I tend to overdo it and pay for it over
the next several days.

plunk44hop <taxcat44@...> wrote:                                  --- In
Spondyville@yahoogroups.com, kddid323 <no_reply@...> wrote:
  >
  > I have been out of work in full or in part since December. I had
  > surgery (pre-planned), and had a terrible flare in my hips/knees. I
  > also was hugely fatigued. Through PT, being able to resume Enbrel, and
  > cortisone shots, the hip/knee pain is much better.
  >
  > As a result of syptoms, I was sent for a sleep study, and diagnosed
  > with severe sleep apnea. Once again I was relieved to have a
  > diagnosis. Through research I saw that it could take up to a month to
  > get used to the machine and mask you have to wear at night. It's been
  > about 6 weeks, and the fatigue is minimally different. I was having
  > some short term memory loss, and trouble concentrating. That has
  > improved somewhat as well.
  >
  > I've had some flare in my neck, and have had 2 shots, and that is
  > minimally better - I think it's exacerbated by the CPAP mask. My back
  > is sore but tolerable with the meds.
  >
  > I know fatigue is part of AS, but with "tolerable" pain, has anyone
  > had such fatigue that you always feel tired - from the time you wake
  > up until you go to bed, and have to push yourself to keep moving, and
  > need to take a nap at least once most days?
  >
  > I'm thinking my sleep apnea (CPAP machine) is not at a high enough
  > level, and have a call out to my MD.
  >
  > Oh, also...as soon as I am off leave, I will be laid off from my work.
  > I really want to feel well enough to go look for another job. Right
  > now, I don't have the energy to look. As we always hear/say on the
  > site, we don't give up, but I am frustrated by this perpetual tiredness.
  >
  > Any thoughts, experiences or suggestions are appreciated.
  >
  > Karen
  >
  Karen...
  I also was diagnosed with sleep apnea and I use a cpap machine.  The
  improved sleep has helped my mental alertness and my memory is
  somewhat better....but I have constant fatigue.  Since being on
  remicade for 1.5 years or so, the improvement in my fatigue is mostly
  in my ability to push myself and be able to bounce back (before
  remicade, it would sometimes be several days before recuperating from
  overdoing it).  I would say now that my fatigue ranges from fairly
  fatigued to profoundly fatigued.....but the improvement in my life
  since being on the cpap machine is nearly as great as the 'before and
  after' of use of nsaids.

  Incidentally, there is a secondary market in CPAP machines now...you
  can get them quite reasonably in this area on Craigslist.

  I cannot bear a night trying to sleep without mine.  I have a spare
  and I have DC adapters for when I am without power.  You would have to
  have a gun to take mine away from me!

  Stay with it, and I'll bet you'll be able to use and benefit from your
  CPAP.

  Millie






---------------------------------
Ahhh...imagining that irresistible "new car" smell?
  Check outnew cars at Yahoo! Autos.

[Non-text portions of this message have been removed]

--- In Spondyville@yahoogroups.com, kddid323 <no_reply@...> wrote:
>
> I have been out of work in full or in part since December. I had
> surgery (pre-planned), and had a terrible flare in my hips/knees. I
> also was hugely fatigued. Through PT, being able to resume Enbrel, and
> cortisone shots, the hip/knee pain is much better.
>
> As a result of syptoms, I was sent for a sleep study, and diagnosed
> with severe sleep apnea. Once again I was relieved to have a
> diagnosis. Through research I saw that it could take up to a month to
> get used to the machine and mask you have to wear at night. It's been
> about 6 weeks, and the fatigue is minimally different. I was having
> some short term memory loss, and trouble concentrating. That has
> improved somewhat as well.
>
> I've had some flare in my neck, and have had 2 shots, and that is
> minimally better - I think it's exacerbated by the CPAP mask. My back
> is sore but tolerable with the meds.
>
> I know fatigue is part of AS, but with "tolerable" pain, has anyone
> had such fatigue that you always feel tired - from the time you wake
> up until you go to bed, and have to push yourself to keep moving, and
> need to take a nap at least once most days?
>
> I'm thinking my sleep apnea (CPAP machine) is not at a high enough
> level, and have a call out to my MD.
>
> Oh, also...as soon as I am off leave, I will be laid off from my work.
> I really want to feel well enough to go look for another job. Right
> now, I don't have the energy to look. As we always hear/say on the
> site, we don't give up, but I am frustrated by this perpetual tiredness.
>
> Any thoughts, experiences or suggestions are appreciated.
>
> Karen
>
Karen...
I also was diagnosed with sleep apnea and I use a cpap machine.  The
improved sleep has helped my mental alertness and my memory is
somewhat better....but I have constant fatigue.  Since being on
remicade for 1.5 years or so, the improvement in my fatigue is mostly
in my ability to push myself and be able to bounce back (before
remicade, it would sometimes be several days before recuperating from
overdoing it).  I would say now that my fatigue ranges from fairly
fatigued to profoundly fatigued.....but the improvement in my life
since being on the cpap machine is nearly as great as the 'before and
after' of use of nsaids.

Incidentally, there is a secondary market in CPAP machines now...you
can get them quite reasonably in this area on Craigslist.

I cannot bear a night trying to sleep without mine.  I have a spare
and I have DC adapters for when I am without power.  You would have to
have a gun to take mine away from me!

Stay with it, and I'll bet you'll be able to use and benefit from your
CPAP.

Millie

thank you karen for your response to my post.
      now for your post.  a lot of that sounds like fibromyalgia.  i have that as
well as as.,  and yes the fatigue is terrible.  i call it pneumonia tired.  that
is the only thing that i can describe it as.  sleep apnea is a big sign of
fibro.  that and the fatigue, (chronic fatigue syndrome), they have a new name
for cfs, but i can't remember it.  also the memory loss, and forgetfulness, it's
called fibro fog.  has your rheumy tested your points for fibro?  it could be
something to bring up.  anyway, thanks again for your kind words.

   christi

kddid323 <no_reply@yahoogroups.com> wrote:
           I have been out of work in full or in part since December. I had
surgery (pre-planned), and had a terrible flare in my hips/knees. I
also was hugely fatigued. Through PT, being able to resume Enbrel, and
cortisone shots, the hip/knee pain is much better.

As a result of syptoms, I was sent for a sleep study, and diagnosed
with severe sleep apnea. Once again I was relieved to have a
diagnosis. Through research I saw that it could take up to a month to
get used to the machine and mask you have to wear at night. It's been
about 6 weeks, and the fatigue is minimally different. I was having
some short term memory loss, and trouble concentrating. That has
improved somewhat as well.

I've had some flare in my neck, and have had 2 shots, and that is
minimally better - I think it's exacerbated by the CPAP mask. My back
is sore but tolerable with the meds.

I know fatigue is part of AS, but with "tolerable" pain, has anyone
had such fatigue that you always feel tired - from the time you wake
up until you go to bed, and have to push yourself to keep moving, and
need to take a nap at least once most days?

I'm thinking my sleep apnea (CPAP machine) is not at a high enough
level, and have a call out to my MD.

Oh, also...as soon as I am off leave, I will be laid off from my work.
I really want to feel well enough to go look for another job. Right
now, I don't have the energy to look. As we always hear/say on the
site, we don't give up, but I am frustrated by this perpetual tiredness.

Any thoughts, experiences or suggestions are appreciated.

Karen






[Non-text portions of this message have been removed]

I have been out of work in full or in part since December. I had
surgery (pre-planned), and had a terrible flare in my hips/knees. I
also was hugely fatigued. Through PT, being able to resume Enbrel, and
cortisone shots, the hip/knee pain is much better.

As a result of syptoms, I was sent for a sleep study, and diagnosed
with severe sleep apnea. Once again I was relieved to have a
diagnosis. Through research I saw that it could take up to a month to
get used to the machine and mask you have to wear at night. It's been
about 6 weeks, and the fatigue is minimally different. I was having
some short term memory loss, and trouble concentrating. That has
improved somewhat as well.

I've had some flare in my neck, and have had 2 shots, and that is
minimally better - I think it's exacerbated by the CPAP mask. My back
is sore but tolerable with the meds.

I know fatigue is part of AS, but with "tolerable" pain, has anyone
had such fatigue that you always feel tired - from the time you wake
up until you go to bed, and have to push yourself to keep moving, and
need to take a nap at least once most days?

I'm thinking my sleep apnea (CPAP machine) is not at a high enough
level, and have a call out to my MD.

Oh, also...as soon as I am off leave, I will be laid off from my work.
I really want to feel well enough to go look for another job. Right
now, I don't have the energy to look. As we always hear/say on the
site, we don't give up, but I am frustrated by this perpetual tiredness.

Any thoughts, experiences or suggestions are appreciated.

Karen

Christi,

So sorry to hear about your brother-in-law. Many of us sent up
prayers, and now they will be for you and your family to help you
through, and hope you remember the good times and fun you enjoyed
together in better days.

Karen

--- In Spondyville@yahoogroups.com, "christi" <cjjames3@...> wrote:
>
> hello all,
>    i just wanted to let you know that my brother-in-law passed away
> early this afternoon.  i want to thank you all for your prayers.  now
> we will be time for healing.  thank you for always being here for me.
> you are all appreciated.
>    thank you
>      christi
>

Welcome Shawn.

I look forward to hearing more from you. I know Spenser has responded,
and he really is a guru on symptomology.

Karen

--- In Spondyville@yahoogroups.com, "squyredog" <squyredog@...> wrote:
>
>   Hey folks, I just found you guys and signed right in. Its finally
> nice to meet people who KNOW. We need a secret handshake.
>   I had symptoms for almost 10 years before I came close to losing an
> eye to iritis, which is when I was diagnosed properly by my
> ophthalmologist. About the same time my lifelong allergies turned into
> an increasingly severe asthma problem. I haven't read anything in the
> symptomology yet about AS and compromised immune systems.
>   Does anyone have any ideas?
>
>                              Shawn
>

Carla -

Welcome to the group.

As others have said, it is common in the group to feel relief at
finally having a diagnosis or "label". With that, we can try to learn
more and explore how we can best navigate the disease. I have HLA B27,
with a severe neck flare and then consequent issues along the back,
then in the hips/knees, and a foot problem that may/may not be
related. I am currently on Enbrel, using Darvocet and Ibuprofen for
pain and I've had some cortisone/steroid injections in my neck, hips
and back. It is difficult sometimes, because it is not necessarily
apparent to others what we have, or that we're hurting, as someone
said. I think many of us try to push ahead, trying to act like things
are normal, when we know they're not.

This is a supportive group, and we continue to learn from one another.

--- In Spondyville@yahoogroups.com, "eyes4u863" <eyes4u863@...> wrote:
>
> I am a 43 yr old female who was putzing around with doctors for 4
> years and on the verge of being sent for a phych eval. They just
> didnt believe my symptoms. When atlast I developed Iritis and it made
> my Rheumatologist scratch his head and think  maybe its something I
> didnt look at yet.....Is it weird that Im happy to have AS ??? Its a
> diagnosis. Its confirmation that the pain isnt all in my head. I was
> starting to buy into that. I am an Ophthalmic technician and love
> what I do but with my feet and ankles getting so bad I cant walk as
> well. With my hands getting bad I cant do other things n my job I
> have just learned to do....I know my family thinks im a hypochondrac
> because I have been in pain so long and no doc could come up with
> anything and I have had 3 misdiags they for sure dont believe this
> one. But I have a positive HLA B27 and all the other good symptoms
> with it.
> I have a question... if I have had this for 3-4 years will the
> treatments work? Will I get worse now???? Im starting remacade in a
> few weeks. have to button up a few minor things with other health
> issues. ( woman problems) Im scared that i will be confined to a
> wheel chair because its been too long.
>  I also have a condition called RSD or CRPS from injuries in a car
> accident and now this on top of it i am tired very very tired ....I
> look forward to relief.
> Thank you for being here .....for listening.......for knowing how I
> feel and understanding
> Hugs. Carla
>

hello all,
    i just wanted to let you know that my brother-in-law passed away
early this afternoon.  i want to thank you all for your prayers.  now
we will be time for healing.  thank you for always being here for me.
you are all appreciated.
    thank you
      christi

Welcome Jodie. I was diagnosed a year ago - I'm 48. My symptoms didn't
become significant until 3-4 years ago, which was long after I had my
two girls.

I'm sure as people check in, you'll hear from some people who had
pregnancy - I think I remember the issue coming up previously.

Thank you for joining us.

Karen



--- In Spondyville@yahoogroups.com, "Jodie" <faithwings@...> wrote:
>
> Hi my name is Jodie, I am a 30 year old mom of 2 from Ontario Canada
> and I just recently was given the probably diagnosis for AS.  I just
> have to have an MRI to see how advanced it is, but I have to wait
> until after the birth of my 3rd child in October.
>
> I have had symptoms since childhood, but it really started to become
> a problem in my early 20s.  I am struggling to not be angry that it
> took so long to diagnose me, as I am pretty much a classic case.
> Anyhow, I lead a really active life taking care of my 2 girls, 5 and
> 1 1/2 and I also work part-time.
>
> I am interested in talking to any other women here, especially ones
> who have had AS through pregnancy and childbirth.  After my first dd
> was born (c/s for breech) I really noticed the symptoms becoming a
> huge problem in my daily life.  I just found out that women often
> first experience symptoms after having a child.  For years I thought
> I had this "mystery illness" and was sure people thought I was just
> faking it.  After a while I kind of gave up hope until my dh
> pressured me to go to a new doctor and I was fairly quickly
> diagnosed.  With my second child, I still wasn't diagnosed, but I had
> decided to just live my life regardless.  I had a great pregnancy and
> was in remission most of the time and had a lovely natural homebirth
> with her.
>
> This time around I have been flared up for most of my pgcy (I'm 16
> weeks now) and it has been a real struggle.  I am likely going to
> have to look into some treatment options b/c some days I can barely
> walk.  I had assumed I would be in remission again this pgcy, but I
> guess I was wrong so far.
>
> Anyhow, that's a bit about me.  I'm really glad to have found this
> group and look forward to being a part of this community.
>
> ~Jodie
>

Welcome Jodie!! I've heard others share about pregnancy and remission...I find
that to be a very interesting component of AS, given the nature of our immune
systems during pregnancy.  I didn't have symptoms until after the birth of my
son.  He was about 6 mo. old when I started.  Anyway, welcome and I look forward
to getting to know you!!

   Pia

Jodie <faithwings@...> wrote:
           Hi my name is Jodie, I am a 30 year old mom of 2 from Ontario Canada
and I just recently was given the probably diagnosis for AS. I just
have to have an MRI to see how advanced it is, but I have to wait
until after the birth of my 3rd child in October.

I have had symptoms since childhood, but it really started to become
a problem in my early 20s. I am struggling to not be angry that it
took so long to diagnose me, as I am pretty much a classic case.
Anyhow, I lead a really active life taking care of my 2 girls, 5 and
1 1/2 and I also work part-time.

I am interested in talking to any other women here, especially ones
who have had AS through pregnancy and childbirth. After my first dd
was born (c/s for breech) I really noticed the symptoms becoming a
huge problem in my daily life. I just found out that women often
first experience symptoms after having a child. For years I thought
I had this "mystery illness" and was sure people thought I was just
faking it. After a while I kind of gave up hope until my dh
pressured me to go to a new doctor and I was fairly quickly
diagnosed. With my second child, I still wasn't diagnosed, but I had
decided to just live my life regardless. I had a great pregnancy and
was in remission most of the time and had a lovely natural homebirth
with her.

This time around I have been flared up for most of my pgcy (I'm 16
weeks now) and it has been a real struggle. I am likely going to
have to look into some treatment options b/c some days I can barely
walk. I had assumed I would be in remission again this pgcy, but I
guess I was wrong so far.

Anyhow, that's a bit about me. I'm really glad to have found this
group and look forward to being a part of this community.

~Jodie






---------------------------------
Ahhh...imagining that irresistible "new car" smell?
  Check outnew cars at Yahoo! Autos.

[Non-text portions of this message have been removed]

Welcome to Spondyville, Jodie.  I wish I could say your story sounded
unique, but unfortunately, it sounds all too common. Especially for
women. AS is very underdiagnosed in women, and the old mindset that AS
is a "man's disease" has been hard to kill off.  However, even with
men, it sometimes takes a while to get diagnosed. A lot of us have
waited years between the onset of symptoms and a diagnosis. Some of it
is due to the fact that diagnosing AS is not cut and dried with a
singlle definitive piece of evidence, but rather, it is usually made
from a preponderance of symptoms, and some of it is probably due to the
way the disease slowly manifests. It can go un-noticed or ignored for
some time before you wake up one day and realize you've got some
serious problems with range of motion.

I look forward to your participating in the group.


Spenser23as

Welcome, Jodie,   I can't relate to the pregnancy part of it, my symptoms
started  after my children were pretty much grown up,  But you have come to the
right place for helpful info. a laugh or two and some knowledgeable advice. 
There are a lot of understanding souls and shoulders to cry on, if needed.  Glad
you found us.

Jodie <faithwings@...> wrote:                                  Hi my name
is Jodie, I am a 30 year old mom of 2 from Ontario Canada
  and I just recently was given the probably diagnosis for AS.  I just
  have to have an MRI to see how advanced it is, but I have to wait
  until after the birth of my 3rd child in October.

  I have had symptoms since childhood, but it really started to become
  a problem in my early 20s.  I am struggling to not be angry that it
  took so long to diagnose me, as I am pretty much a classic case.
  Anyhow, I lead a really active life taking care of my 2 girls, 5 and
  1 1/2 and I also work part-time.

  I am interested in talking to any other women here, especially ones
  who have had AS through pregnancy and childbirth.  After my first dd
  was born (c/s for breech) I really noticed the symptoms becoming a
  huge problem in my daily life.  I just found out that women often
  first experience symptoms after having a child.  For years I thought
  I had this "mystery illness" and was sure people thought I was just
  faking it.  After a while I kind of gave up hope until my dh
  pressured me to go to a new doctor and I was fairly quickly
  diagnosed.  With my second child, I still wasn't diagnosed, but I had
  decided to just live my life regardless.  I had a great pregnancy and
  was in remission most of the time and had a lovely natural homebirth
  with her.

  This time around I have been flared up for most of my pgcy (I'm 16
  weeks now) and it has been a real struggle.  I am likely going to
  have to look into some treatment options b/c some days I can barely
  walk.  I had assumed I would be in remission again this pgcy, but I
  guess I was wrong so far.

  Anyhow, that's a bit about me.  I'm really glad to have found this
  group and look forward to being a part of this community.

  ~Jodie






---------------------------------
Ahhh...imagining that irresistible "new car" smell?
  Check outnew cars at Yahoo! Autos.

[Non-text portions of this message have been removed]

Hi my name is Jodie, I am a 30 year old mom of 2 from Ontario Canada
and I just recently was given the probably diagnosis for AS.  I just
have to have an MRI to see how advanced it is, but I have to wait
until after the birth of my 3rd child in October.

I have had symptoms since childhood, but it really started to become
a problem in my early 20s.  I am struggling to not be angry that it
took so long to diagnose me, as I am pretty much a classic case.
Anyhow, I lead a really active life taking care of my 2 girls, 5 and
1 1/2 and I also work part-time.

I am interested in talking to any other women here, especially ones
who have had AS through pregnancy and childbirth.  After my first dd
was born (c/s for breech) I really noticed the symptoms becoming a
huge problem in my daily life.  I just found out that women often
first experience symptoms after having a child.  For years I thought
I had this "mystery illness" and was sure people thought I was just
faking it.  After a while I kind of gave up hope until my dh
pressured me to go to a new doctor and I was fairly quickly
diagnosed.  With my second child, I still wasn't diagnosed, but I had
decided to just live my life regardless.  I had a great pregnancy and
was in remission most of the time and had a lovely natural homebirth
with her.

This time around I have been flared up for most of my pgcy (I'm 16
weeks now) and it has been a real struggle.  I am likely going to
have to look into some treatment options b/c some days I can barely
walk.  I had assumed I would be in remission again this pgcy, but I
guess I was wrong so far.

Anyhow, that's a bit about me.  I'm really glad to have found this
group and look forward to being a part of this community.

~Jodie

I would also like to add, that most of us have more than one autoimmune disease.
I have several.  Allergies, asthma, hypothyroidism, type II diabetes, OA, and
fibro, which is not really considered one, but related.

spenser23as <no_reply@yahoogroups.com> wrote:                                 
Shawn, Welcome to Spondyville. AS is an autoimmune disease. Our immune
  system is, if anything, too active. This is the reason people with AS
  do so well when on the biologic drugs like Enbrel and Remicade, which
  lower the immune system response.

  Spenser23as






---------------------------------
Ahhh...imagining that irresistible "new car" smell?
  Check outnew cars at Yahoo! Autos.

[Non-text portions of this message have been removed]

Shawn, Welcome to Spondyville. AS is an autoimmune disease. Our immune
system is, if anything, too active. This is the reason people with AS
do so well when on the biologic drugs like Enbrel and Remicade, which
lower the immune system response.


Spenser23as

Michael T. Smith, aka Spenser23as gave birth to this site more than 10 years
ago. Some of us have been here since the beginning; others, like you, have
just moved into our little town. You'll never be alone here. :-)

Tyler





>From: "eyes4u863" <eyes4u863@...>
>Reply-To: Spondyville@yahoogroups.com
>To: Spondyville@yahoogroups.com
>Subject: [Spondyville] Re: Hey. Nice to meet you all
>Date: Sun, 29 Apr 2007 05:26:26 -0000
>
>Again I cry....But its tears of relief. That someone
>understands.Every story I read on here sounds so much like me.I
>needed this. Who started this web site??? I am forever in debt to the
>author. As i am sure everyone who has first come upon this site has
>felt. It means so much to have understanding. I know my family feels
>for me. My kids and husband I know at times get tired of hearing me
>complain of what hurts. But they are there for me when I need them .
>My oldest daughter who owns her own house came home to get something
>and cleaned my whole downstairs because she knew I couldnt do it and
>that her step Dad was too busy taking care of me to do it... That
>ment so much to me. I used to be a clean freek and now if there is
>dust and I'm having a bad day ...OH WELL there will be dust then...LOL
>The laundry can also wait. Just buy more clothes!!!!! HA HA HA ...  I
>try to keep a healthy out look but before I got my diagnosis I just
>gave up. I felt day by day I was getting closer to giving in
>completely. And I knew if I did see a shrink they would just focus in
>on my past and never get away from it.
>  Life is hard and I know some people do have emotional problems and
>can have pain syndroms from it but I just knew it wasnt that for me.I
>too was an athlete and very in tune with my body.was an arobics nut
>loved to dance.  but had an accident and alot changed.. I never read
>if AS can be brought on by a trauma... I was fine before the
>accident.. or was that just coincedence?????
>Well I need to read some more.
>Hope you all are having a great weekend
>Prayers to all
>Carla
>
>--- In Spondyville@yahoogroups.com, spenser23as <no_reply@...> wrote:
>
>
> >
> > Hi Carla. Welcome to Spondyville. I think most of us can relate to
>your
> > story.  I think the joy of finally knowing what is wrong, so you
>can
> > start to focus your energies on fighting back, is often offset by
>the
> > realization that you have a chronic disease which isn't going away.
> >
> > This disease ebbs and flows, it may seem to go into remission for
> > months, only to flare up for no apparent reason.  I think it helps
>to
> > educate not only yourself, but also your family, about AS, so you
>all
> > can begin to understand and know what to expect. You might also sit
> > them down for a heart to heart talk, so you can dispell any of
>their
> > thoughts about you "faking it".
> >
> > This is NOT the end of the world, it is simply the beginning of
>your
> > life on a different path than the one you thought you would be on
>at
> > this point in your life. Embrace being on this new path, and you'll
> > find that there are just as many delights, surprises,
>disappointments,
> > adventures and rewards as on your previous path.
> >
> > And don't fret too much about the future. For most, this disease is
> > manageable. For those of us with severe forms, (and I am one),
>being
> > confined to a wheelchair is still a rarity. I was diagnosed with a
> > severe form of AS in 1985, with symptoms starting around 1980, and
>I am
> > not in a wheelchair, and don't expect to be in one for some time,
>if
> > ever.  I'm not the athlete I once was, but I am still able to get
> > around.
> >
> > Again, welcome to Spondyville. I'm glad you found us.
> >
> >
> > Spenser23as
> >
>
>

You can suck it up all you want to, but your family needs to get with the
program and offer you some support. It will be your responsibility to help
educate them. One of the biggest challenges for those of us with AS is that
we "don't look sick", so people tend to ignore what isn't visible to them.
You deserve the support of your family, and it may take time for them to
realize you have limits and what that means.

Tyler





>From: "tango_donetello" <tango_donetello@...>
>Reply-To: Spondyville@yahoogroups.com
>To: Spondyville@yahoogroups.com
>Subject: [Spondyville] relieved by diagnosis
>Date: Sun, 29 Apr 2007 02:15:46 -0000
>
>I was pretty relieved when they gave me a diagnosis. At least I know
>where I'm going now. The fact is I probably won't return to work or at
>least not full time. The strange thing at first was I was almost
>excited to be diagnosed. Then the reality hit me and hit me hard some
>days I just sit and cry, but then I gather my inner strength and carry
>on with life I'm 50 years old,and have had this for about 15 years,
>and was just told I has AS a couple months ago so it was along time
>coming with a diagnosis. My husband is the only one who really
>understands what I'm going through the rest of my family just wants to
>ignore it and for me to carry on normally . I feel quite isolated from
>my family and friends because I want to talk about this and they want
>to ignore it.Oh well that's life and I don't make demands on the
>people around me nor am I a complainer. As my kids say suck it up
>princess!!!!
>

I relate so very well to your story. I am 52 and was diagnosed last year for
the first time. It took 18 years after the onset of the more severe symptoms
to get that diagnosis. Yes, there is a relief. In fact I felt almost numb
when I was told of the diagnosis and I accepted it without batting an eyelid
  It felt like at last I know what is happening and all I have wanted since
then is to understand why it was that the doctors were so reluctant to name
AS as the cause of my pain and stiffness.

I am different because I am HLAB27 negative, and this means that there is
reluctance to name AS. I am lucky to have a GP who now agrees that the
medical profession has been wrong to make pigeon hole diagnoses based upon
the HLAB27 gene.

Maggie

-------Original Message-------

From: tango_donetello
Date: 29/04/2007 12:15:53 PM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] relieved by diagnosis

I was pretty relieved when they gave me a diagnosis. At least I know
where I'm going now. The fact is I probably won't return to work or at
least not full time. The strange thing at first was I was almost
excited to be diagnosed. Then the reality hit me and hit me hard some
days I just sit and cry, but then I gather my inner strength and carry
on with life I'm 50 years old,and have had this for about 15 years,
and was just told I has AS a couple months ago so it was along time
coming with a diagnosis. My husband is the only one who really
understands what I'm going through the rest of my family just wants to
ignore it and for me to carry on normally . I feel quite isolated from
my family and friends because I want to talk about this and they want
to ignore it.Oh well that's life and I don't make demands on the
people around me nor am I a complainer. As my kids say suck it up
princess!!!!





[Non-text portions of this message have been removed]

Pia,

It is only bad with the changes in the weather. As soon as we had the rain I
improved. It is true that there are some sore spots, but it is amazing how
much better I feel once I am taking the Celebrex again. I am struggling with
a number of issues, and yet I am really doing very well.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 29/04/2007 12:24:31 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Maggie:

Sorry you're hurtng so much!! I can see the OA dx.as having been right on
the money. I do agree that the OA coupled w/ enthesitis and your bone scan
results should have risen some red flags, though...

P.

Maggie <maohearn@...> wrote:
Pia,

My neck was the first place where the arthritis showed. I can honestly
understand that I was told that I had osteoarthritis in the neck because it
really is a common spot for OA. The doctor who diagnosed it did not have my
full history but she was very accurate with her dx.

What I do not understand is how a rheumy can say one has generalized OA and
enthesitis at the same time without considering the possibility of AS,
especially when the bone scan showed so many hot spots. The arthritis in my
ankles and toes really hurts and now my elbow is joining in the chorus. The
little finger on my right hand has been playing up again.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 28/04/2007 10:32:42 AM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Maggie:

When I hear that you're having neck trouble...I think of my idiot ex rheumy
and his osteo. dx. w/ me!! lol Hope you get some relief with that.

P.

Maggie <maohearn@...> wrote:
Hi Pia,

I went to see my doctor yesterday but did not get my blood tests done. He
wants me to fast and so I have two weeks to work on my cholesterol levels
-).

I had to put myself back on the Celebrex because of some pain issues. It
seems that something is happening in my neck. I get a Clayton's sore throat
and it makes my ears hurt, but it seems that the problem is in the cervical
spine. There have been some worrying signs regarding my neck lately.

Do not worry about your blood tests because this happened to me as a result
of being on the NSAIDs over a period that extended beyond 20 years. They
really were working to keep the condition under control and yes when I am
taking the Celebrex I am able to get a better night's sleep. It never was
fibromyalgia and even my original doctor in Canberra got that much right. I
really do hope that he is still working as a doctor.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 28/04/2007 5:51:33 AM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Thanks, Maggie!! I wasn't thinking that you were advising me to give up my
meds, I was just curious about the fish oil. (lol) I do worry though that my
bloodwork won't show inflammation at some point simply b/c of NSAID's,
especially as I sxtruggle with my dx. Well, now that my internist spelled
out AS in my chart, it's not such an issue, but I still have to deal with
the new group at Hopkins on the 7th. I suspect they'll want more bloodwork,
wouldn't you think? Anyway, I thought about that with the NSAID's masking
the fact that we do get "Inflamed"!! But...the thing is, I don't want to
stop them just so that my bloodwork will concur with my symptoms because I
am so desperate for them. I could barely "deal" over the past few weeks
since I went off of my feldene. By the way, the indocin is starting to work
just today. I feel the difference. I'm shocked b/c with feldene, it took
almost 2 weeks. Anyway, thats all for now...hope I can join the gripefest...
I have to be
up a 5am that Friday morning, so I'll have to see. Sounds like fun in a
sorta twisted way!! (haha)

Pia

Maggie <maohearn@...> wrote:
Pia,

We are all different and we respond to medication differently. I do not
advise you to contemplate attempting to knock off your medication until you
have stabilized and that could take several years. I have been on
anti-inflammatory medication for around 30 years. I started when I had my
first fall and fractured my coccyx. I took Brufen for the pain and
inflammation. It did almost nothing to bring the inflammation under control.
Then I had the car accident where I copped a bad case of whiplash and was
put on more NSAIDs. That could have been Indocid but I really do not
remember what I was taking. Then in 1987 when I ended up with shoulder
problems due to a workplace injury, I was placed on anti-inflammatory
medication again. By 1989 I was on Orudis and had been on several others
before the Orudis. I responded well to the medication but when I was put on
meds for fibromyalgia, well they had a terrible effect. I have been using
Celebrex since 2001 and it has proved to be the most suitable. I tried the
Vioxx but it was not for me. I tried Mobic but it did not work as well as
the Celebrex. I have only needed a muscle relaxer twice in the past year.

Over the 30 years the medication was working so well it was disguising the
real problem. Keep in mind that I have pain in my shoulders, arms and
fingers, and that I have had consistent low back pain since 1976. My ankles
were shot because of the sprains, and I have had problem feet since
childhood ;-). The pain gets really bad in my feet. Despite the pain I had a
normal ESR and that meant that the doctors were determining that nothing
inflammatory was happening, therefore they claimed that I had fibromyalgia
and they refused to treat me as an arthritis patient. It was only after I
dropped having the meds consistently that the other "signs" turned up in my
blood tests. The medication is necessary to keep the condition under control

I am still not certain about the reliability of the fish oil, but it seems
to help to keep the inflammation under control. It is an individual thing. I
am also uncertain about glucosamine.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 26/04/2007 12:12:46 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Thanks for the explanation, Maggie. I wish I could respond quickly to the
nsaid's like you...it seems to be, on average, 2 weeks for me. Are most As
ers more like me in that regard? I want to look into fish oil. I have this
great book on natural healing that I plan to peek into this week. I pretty
good about not adding or deleting any meds/supplements without first talking
to my dr...but I'd like to check into that. I'm glad you made mention of it.

Pia

Maggie <maohearn@...> wrote:
Pia,

The last rheumy that I saw wanted me to take the medication every day.
However, I remain wary of the possible long term effects. I am one of the
lucky few who do get the inflammation under control quite rapidly once the
medication is taken on a daily basis. I take advantage of the weather
conditions and I prefer to give my system a break because I have had stomach
ulcers. I find that when I am taking medication consistently that I do
improve. I have been on most of the NSAIDs over the years and I have always
responded well to them. This is one reason why I am sceptical about any FMS
diagnosis because if it was FMS then I would not respond to the NSAIDs.

I find that I progress when I am also making sure that I am exercising on a
regular basis. This has been mostly in the form of walking. However, I do
get very sore legs and then I have to stop so that the problem settles down.
I have just done this over the past week. Today I feel 10 times better than
I did at this time last week. My knees still hurt but my legs are not as
sore. It could be a combination of taking the Celebrex, the change in the
weather and the drop in the walking levels. Anyway, I need to make sure that
I am eating prior to taking the Celebrex and my lifestyle often means that I
forget to take the medication. I am more consistent with taking the fish oil
tablets and it also takes care of the inflammation.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 25/04/2007 10:32:49 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Maggie:

Sounds like you're headed in the right direction with getting organized..
house, junk, new Drs./ referrals etc.. I'm just curious...do you mean that
you stop your NSAID (celebrex) intrmittently and go back as needed? I find
that when I'm off, the pain is pretty much constant and that it takes me a
couple of weeks to even get relief when I just start on an nsaid. So, I'm
wondering If I've understood correctly. I'd like to be able to do that kind
of thing considering long-term side effects of Nsaids. (like liver/kidney
issues) My rheumy (the idiot...maybe I should now say "Ex-Rheumy (lol) )says
that the constant blood levels of the nsaid is what keeps things under
control; therfore, take it everyday. So thats what I do...just curious if I
understood you well.

Pia

Pia

Maggie <maohearn@...> wrote:
Hi Pia,

The Celebrex seems to affect different people in different ways. I have an
elderly friend who tried it but it gave her high blood pressure. She has RA
and her doctor has prescribed Mobic for her arthritis. I have been fine with
the Celebrex ever since I began taking it, but I did not do so well with the
Vioxx when I took that for a very short time back in 2001. I tried the Mobic
but was not certain that it gave me any results where I do respond very well
to the Celebrex. I keep to a routine of having it for a time, and then I
stop, and will start it again as necessary.

I had to go back on the Celebrex last week because of the pain from
inflammation, which was probable caused by the high levels of humidity. It
is so strange that I find that as soon as it rains I feel so much better. I
am starting the horrendous task of getting rid of "junk" little bit by
little bit, and so long as I am not in pain I will be able to get on with
the task.

I have already spoken to my doctor and have asked him to recommend a doctor
who shares the same principles as my current doctor, in the region when the
time comes for the move. I have also spoken with my physiotherapist who will
give me the details for a physiotherapist who also does the hydrotherapy.
These are my priorities as far as medical is concerned. The Canberra region
has a number of doctors but the facilities are not as good as they were when
we were there 11 years ago. I believe that there is a new female rheumy in
the region and hopefully she is not a jerk like the other two.

My husband has not resigned from his present job but will do so within the
week. He has not signed the contract for the new job but that should be
signed soon. It is all a bit overwhelming but the management in his present
job are stuffing him around, so now would be a good time to leave.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 25/04/2007 1:33:22 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Maggie:

I was on celebrex and it didn't serve me well. I had terrible heart
palpitations that seemed to be related to taking it and pain relief just
never seemed to happen...so I went back to feldene. I see the new dr.
(rheumy) on May 7th and my internist seems to think she'll change/add things
with meds anyway. He was just trying to do something for me until I get
there...since its 2 weeks away. You say, I've had no medication in my system
for weeks now sice that idiot decided my mouth sores were from the feldene
and I am just miserable with pain. So, if the indocin helps for the next 2
weeks, I'll be happy. I should have just started the feldene again...but I
was trying to give the guy the benefit of the doubt in the event that he was
right. You live and you learn, right? Good to hear from you. How are you
doing?

Pia

Maggie <maohearn@...> wrote:
Pia,

What about Celebrex? It is way better than Indocid.

Maggie

-------Original Message-------

From: Olympia Chagouris
Date: 24/04/2007 11:45:01 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Finally...A Dx. Made!!

Spencer:

Thanks for the info...Actually, I wasn't aware of the side effects, as I
hadn't checked my drug book yet. Water retention, huh?? I don't like that..
for obvious reasons!! Do all NDAID's have that effect, or just Indocin?
Figures, just before summer. My thighs have always been my least favorite
area and my waist always small...uh-oh!!

Pia

spenser23as <no_reply@yahoogroups.com> wrote:
Congrats on getting a diagnosis, Pia. Indocin is one of the oldest
NSAIDS, and is still one of the more effective meds for Spondylitis.
20 years ago, it was often the first drug most newly diagnosed Spondys
would be put on. It does have some side effects, though, so make sure
you take it on a full stomach to lessen stomach irritation and know
that you might get a little water retention around the waistline. It
can also tend to make you a bit drowsy, so don't operate heavy
machinery, etc. Aw, you know the drill ... excuse the lecture.

Spenser23as

---------------------------------
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Ahhh...imagining that irresistible "new car" smell?
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---------------------------------
Ahhh...imagining that irresistible "new car" smell?
Check outnew cars at Yahoo! Autos.

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---------------------------------
Ahhh...imagining that irresistible "new car" smell?
Check outnew cars at Yahoo! Autos.

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Ahhh...imagining that irresistible "new car" smell?
Check outnew cars at Yahoo! Autos.

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Ahhh...imagining that irresistible "new car" smell?
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[Non-text portions of this message have been removed]

Shawn,

Welcome to the group. I understand about the time it takes to get a
diagnosis. Fortunately I do not get iritis, and my case is mild, but it took
18 years to get a diagnosis.

Maggie

-------Original Message-------

From: squyredog
Date: 30/04/2007 4:24:19 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Symptom question

Hey folks, I just found you guys and signed right in. Its finally
nice to meet people who KNOW. We need a secret handshake.
I had symptoms for almost 10 years before I came close to losing an
eye to iritis, which is when I was diagnosed properly by my
ophthalmologist. About the same time my lifelong allergies turned into
an increasingly severe asthma problem. I haven't read anything in the
symptomology yet about AS and compromised immune systems.
Does anyone have any ideas?

Shawn





[Non-text portions of this message have been removed]

Spenser,

My AS was triggered by trauma. Since I am a HLAB27 negative, I cannot see
how I was predisposed to getting AS. The fact is, my AS remains mild, even
though there seems to be something going on in my neck and lower spine.

It seems to me that there needs to be a lot more research to be done to find
out why some people who do not have the gene become predisposed to AS. I
suspect that the clue rests in the fact that up until the 1970s people with
AS were considered to have rheumatoid Spondylitis. If there is an RA
connection that is the missing link to this mystery, then it needs to be
pushed as a possible reason.

Maggie

-------Original Message-------

From: spenser23as
Date: 30/04/2007 2:48:58 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: Hey. Nice to meet you all

Thanks for the kind words. I started Spondyville in 1995 as an
outgrowth of an AS message board on AOL. As to the question of trauma
triggering AS, I have, over the years, heard a lot of anecdotal
evidence to suggest that a trauma to the body can trigger AS, but can
find very little scientific data on the subject. Of course, it could be
that these people were predisposed to AS, and would have gotten it
eventually, but the trauma, (such as an auto accident, falling off a
ladder, etc.) just hastened the onset.

Spenser23as





[Non-text portions of this message have been removed]

Hey folks, I just found you guys and signed right in. Its finally
nice to meet people who KNOW. We need a secret handshake.
   I had symptoms for almost 10 years before I came close to losing an
eye to iritis, which is when I was diagnosed properly by my
ophthalmologist. About the same time my lifelong allergies turned into
an increasingly severe asthma problem. I haven't read anything in the
symptomology yet about AS and compromised immune systems.
   Does anyone have any ideas?

                              Shawn

Thanks for the kind words. I started Spondyville in 1995 as an
outgrowth of an AS message board on AOL. As to the question of trauma
triggering AS, I have, over the years, heard a lot of anecdotal
evidence to suggest that a trauma to the body can trigger AS, but can
find very little scientific data on the subject. Of course, it could be
that these people were predisposed to AS, and would have gotten it
eventually, but the trauma, (such as an auto accident, falling off a
ladder, etc.) just hastened the onset.

Spenser23as

Again I cry....But its tears of relief. That someone
understands.Every story I read on here sounds so much like me.I
needed this. Who started this web site??? I am forever in debt to the
author. As i am sure everyone who has first come upon this site has
felt. It means so much to have understanding. I know my family feels
for me. My kids and husband I know at times get tired of hearing me
complain of what hurts. But they are there for me when I need them .
My oldest daughter who owns her own house came home to get something
and cleaned my whole downstairs because she knew I couldnt do it and
that her step Dad was too busy taking care of me to do it... That
ment so much to me. I used to be a clean freek and now if there is
dust and I'm having a bad day ...OH WELL there will be dust then...LOL
The laundry can also wait. Just buy more clothes!!!!! HA HA HA ...  I
try to keep a healthy out look but before I got my diagnosis I just
gave up. I felt day by day I was getting closer to giving in
completely. And I knew if I did see a shrink they would just focus in
on my past and never get away from it.
  Life is hard and I know some people do have emotional problems and
can have pain syndroms from it but I just knew it wasnt that for me.I
too was an athlete and very in tune with my body.was an arobics nut
loved to dance.  but had an accident and alot changed.. I never read
if AS can be brought on by a trauma... I was fine before the
accident.. or was that just coincedence?????
Well I need to read some more.
Hope you all are having a great weekend
Prayers to all
Carla

--- In Spondyville@yahoogroups.com, spenser23as <no_reply@...> wrote:


>
> Hi Carla. Welcome to Spondyville. I think most of us can relate to
your
> story.  I think the joy of finally knowing what is wrong, so you
can
> start to focus your energies on fighting back, is often offset by
the
> realization that you have a chronic disease which isn't going away.
>
> This disease ebbs and flows, it may seem to go into remission for
> months, only to flare up for no apparent reason.  I think it helps
to
> educate not only yourself, but also your family, about AS, so you
all
> can begin to understand and know what to expect. You might also sit
> them down for a heart to heart talk, so you can dispell any of
their
> thoughts about you "faking it".
>
> This is NOT the end of the world, it is simply the beginning of
your
> life on a different path than the one you thought you would be on
at
> this point in your life. Embrace being on this new path, and you'll
> find that there are just as many delights, surprises,
disappointments,
> adventures and rewards as on your previous path.
>
> And don't fret too much about the future. For most, this disease is
> manageable. For those of us with severe forms, (and I am one),
being
> confined to a wheelchair is still a rarity. I was diagnosed with a
> severe form of AS in 1985, with symptoms starting around 1980, and
I am
> not in a wheelchair, and don't expect to be in one for some time,
if
> ever.  I'm not the athlete I once was, but I am still able to get
> around.
>
> Again, welcome to Spondyville. I'm glad you found us.
>
>
> Spenser23as
>

Hi Carla. Welcome to Spondyville. I think most of us can relate to your
story.  I think the joy of finally knowing what is wrong, so you can
start to focus your energies on fighting back, is often offset by the
realization that you have a chronic disease which isn't going away.

This disease ebbs and flows, it may seem to go into remission for
months, only to flare up for no apparent reason.  I think it helps to
educate not only yourself, but also your family, about AS, so you all
can begin to understand and know what to expect. You might also sit
them down for a heart to heart talk, so you can dispell any of their
thoughts about you "faking it".

This is NOT the end of the world, it is simply the beginning of your
life on a different path than the one you thought you would be on at
this point in your life. Embrace being on this new path, and you'll
find that there are just as many delights, surprises, disappointments,
adventures and rewards as on your previous path.

And don't fret too much about the future. For most, this disease is
manageable. For those of us with severe forms, (and I am one), being
confined to a wheelchair is still a rarity. I was diagnosed with a
severe form of AS in 1985, with symptoms starting around 1980, and I am
not in a wheelchair, and don't expect to be in one for some time, if
ever.  I'm not the athlete I once was, but I am still able to get
around.

Again, welcome to Spondyville. I'm glad you found us.


Spenser23as