I have been going through tests for years...
Still no answers...
1st. they tell me: rumatoid arthritis,tested me forlupus,tested me for
lymes disiease, tested for ms,say its ostoarthritis...
All I know is the pain and the swelling! I wish I could get answers from
the docs. Ibuprophen 800mg. helps. I have good days and very bad days-it
veries... My lungs get involved too and I have COPD.
I am glad to know that I am not alone in this. Tierd of some who call me
lasy or just don't understand. I fight this on a daily basis. I just got
up enough courage to finally add myself to this post...
Hope all is well for all of you today! I try to take one day at a
time!

007 have some courtesy of the pooping mutt

msteddybear,

nice to see ya... and, yes, it can be difficult.

I have the fibro as a nasty aside...consequences of holding myself
wrong, or stiff because of the lupus and rheumatoid pain... lovely cycle
it all is...

One of the most difficult things for me was admitting my body could not
do the things I had done before...so, I fought it. Worked through the
pain, fatigue, rashes...

Was bad news. And, I did this for years. My family was abusive,and my ex
made me do things even when I was in a ball crying...
So, I did damage.
Part of my pride was so very false. Brainwashing into believing the crap
drilled into my brain.
Then, finally I pushed too far. And, had to do some serious thinking to
myself, and be truthful...

I'm glad you spoke up=o)

be well...

scouser, damn. using the fibro thread to hit on folks. ohhhhh! the
shame

What better place to hit on women than a thread full of women that can't
run away, Nene.

LMAO!

one day... I will moped my way... wizzzz! through the streets, and
leave them in the dust, omg, LOLOL!

OMG dave!!!! LMAO........too funny!

Teddy....am so glad you posted. No, you are not alone. But what you
need is a doctor that listens to you and if they can't understand, at
the very least, send you to another doctor who may be more familiar with
your concerns. On the national fibro website, they say that on average,
it takes approx. 4-5 years for someone to be properly diagnosed. In my
case, it took just over two years, and only because I refused to believe
the inconsistent treatment and incorrect diagonses from doctors who
didn't really care about me or what was happening to me and my body. As
Nene says, it is not easy and it takes its toll on your mind and body.

http://www.fmaware.org/ is a great source of information. I have
finally found an amazing family doctor, who is getting further educated
himself on the disease and working with a Rheum. arthritis doctor who
spealicalizes in fibro.....to ensure I receive consistent and proper
care short and long term.

Whatever it may be, you are not alone Good doctors who
care and take the time to investigate, test and listen to you is of
importance. You are in control, lol. Just ignore those that must label
you and have no clue. For friends, I had to talk with them, as well as
with co-workers, to explain what I have, what my limitations are, and
about the really bad days, and their support and understand makes a
world of difference.

i have anklosying spondylitis....among other autoimmune disorders.
The best thing for me is exercise. Yes keeping the body moving helps and
muscles develop around the sore spots. My back/leg pain has decreased
big time since seeing a rehab trainer and since faithful going to the
gym.

I take autoimmune meds too ....like methotrexate, prednisone and
cyclosphoshide. But i tell you for fibro and arthritis the best thing is
keep moving. Your body is not made to sit still.

Is a reality that some days the body just can't move the way it is meant
to, lol. True Pucks, the best thing to do is to keep moving....some
days your body revolts against you and everything it should do, the
simple things, like getting out of bed, getting dressed, walking,
standing, all things that can be quite difficult and painful.

I'm not familiar with the auto immune disease you have. My immune
system struggles and turns a common cold into a full blown fever that
knocks me out for several weeks. Have been checking into supplements
and other things aside from all the drugs they give but nothing will
"cure" what I have. No drug will make it go away. The best I can see
is that there are some products that aid and reduce the flareups, which
is not a bad thing.

I hear you on that, Jane! Once or twice a month I end up completely
down with what should just be a cold...like right now! It
is bad enough that our bodies don't obey us but then to have it play
tricks on us by turning the common cold into something like bronchitis
or pneumonia (as Ken calls it, ) is just playing dirty....
Where is that rock I want to climb under...

my poor Suzy..I will be your rock....

Suzy does get sick easier than most people. But she never complains and
fights through it especially when she works double shifts and the night
shift all weekend. She is so brave and has an incredible outlook about
it. She just grits her teeth and gets the job done--a very strong
woman!! I am proud of you Suzy at your work ethic and toughness. I wish
I was there to help you more, but my prayers for you will have to do for
now. I love you!!

I love you honey!!!! Thank you so much for always being here for me even
when I try telling you I'm fine you always seem to know I can't
put anything by you, can I? I will always love you, my darling Ken!

Today= omg ouch oooo whoa... %$#*&^#*

Sorry needed to vent- very rough start this morning...

well i agree some days our bodies just take over. What i meant was for
overall disease maitenance. In addition to meds prescribed from your
doctore there are things that can be done to help our bodies function
better. Eating a proper diet and exercise are critical.
Our bodies were not made to sit still.

Now here is something I do know about. I have had arthritis since a bad
accident in 1986. I have fibromyalgia, all 18 points. I also have a
very good rheumatologist that has kept
me pretty much pain free. The number one thing is to get a good night's
sleep. That helps greatly. I take only 1 pill a day and a flexeril at
night to sleep. I have all the symptoms of Rheumatoid, but tests are
negative. I get blood tests done every 3 to 6 months. over the years, I
have had both knees replaced, an ankle fusion, and 12 vertebrae fused
with rods in my back. I have nerve damage from my last back surgery. I
feel better and can do all those things I couldn't do before. Even a
great sex life. Something all of you should try that has made a big
difference for me, is rocker-sole shoes. Look them up on the net. The
best thing ever invented. I can go without pain pills most all the time
now. Just remember one thing that the doctors will not always tell you.
Every time you get a cortizone or other shots like that, the more you
get, the worse the next onset is. Recommended dosage is once every
six months. Ask questions and keep asking. Doctors don't tell unless
they are questioned. My insurance has never refused paying for any of
this. Also, my rheumatologist says anything natural, or something else
I can do, if it helps, let him know.
He said the doctors don't know it all. Anything I can do to help any of
you others, just drop me a message.

Pucks, I have anklosying spondylitis in my spine. But since I had 2
surgeries and have rods in my back, I can now do more, than I could for
years. Lots less pain and for you Jane, the nerve damage I have is kept
under control by neurontin. As with any meds, Only take as prescribed.
A tablespoon of apple cider vinegar taken mixed with water or other
liquid, or just gulp it down, when taken regularly helps with any
arthritis or joint pain.

thanks for the info.
I use apple cidar vinegar in my vinegrettes on salads often.

AS for a good nite sleep...lol i wish i could more regularily...What is
this pill you speak of..is that prescribled. I am on so many meds the
last thing i need is more but damned i get a lot of pain during the
nite. I find i fell much better in the afternoon...Its mornings and
nites that suck.

Pucks

I know the feeling. I hurt so bad I would cry and toss around all night
from the pain. It would get worse, when I laid down. Flexeril is
prescribed. It helped ease the pain all the way around if I got a good
night's sleep. You will eventually have to have surgery for your prob,
like I did. I don't regret getting any of my surgeries. I would do any
of them again in a heart beat, because I got my life back. Also,
another thing, is if there is a pain clinic where you live, and your
insurance covers it, that's a way to go, too. There are some
alternatives. One thing about going to a chiropractor as mentioned
before. They adjust the lineage of the spine, but with your problem,
it could cause permanent paralysis. Find you a good Rheumatologist, I
love mine and he's kept me pretty much pain free and he's a good source
of info.

There is something fairly new the doctor I work for has heard about from some of his patients. They have fibromyalgia and/or rheumatoid arthritis - it is mangosteen - (not sure of the spelling). Fairly new and in the health food stores. But the one woman with rheumatoid arthritis quit a bunch of her meds because this stuff helped her pain so much, so did the other one with fibromyalgia. Might be worth checking out.

Thought I would pass on the info. Phenacaine is an antiinflammatory that is herbal and in the health food stores that this doctor is telling his patient's about, is working great for some, doesn't work on some, but that is the way with any med. This Dr. is an internest and he is great, cares greatly about his patients and wouldn't let them try something if he thought it was unsafe.

But might be worth a try. Take care.

Neurontin is a prescription med that is for nerve problems. Flexeril is also prescription and is a muscle relaxant.

I just wanted to add to this topic and it might help some who were in this area. In the late 70's at Incline Village Nevada very close to where i grew up residents of incline village started coming down real sick. They finally found that the cause was squirrels. Yes SQUIRRELS. The lil furry vermin SQUIRRELS. The diagnosis? Fibromyalgia. Check it out!

I was told that back when they introduced aspartame that the DEA refused permission for use in edible products and somewhere along the way let it through anyway. is it true that once a beverage containing aspartame has gotten hot and then refrigerated that enough of it over time (several doses) can effectually cause lupus??