Charlene, of course we forgive any whining you do, you have reason to
be screaming at the top of your lungs, let alone whining.  I don't know
anything about Embrel, except that they seem to be backing off earlier
claims on their TV ads, so maybe it is not as good as they once touted.
I hope that you get some pain relief, it's not easy to go on day after
day the way you  have been doing with no relief.--fran

hi charlene,
i can really relate to your post, sweetie. i could have written it at
any point during the last few years. my RA has never really been under
control. and yes, i know all about the pain in the ankles going up into
the shins. that happens to me regularly until my whole leg throbs. (i
also have a knot on my shin my RD attributes to the RA).
enbrel, like all the dmards, fades over time. it may be time for a
change of dmards. when enbrel faded for me, i moved to remicade, 3 mg
per kg of body weight every 8 weeks. that fades too, and i am now up to
8 mg per kg of body wght every 6 weeks. i saw the RD today and she'd
like to up it to 9 mg, and i asked to put that off for another round,
but it's inevitable. i've come to accept my RA will never be under good
control, but at least it is (mostly) bearable. this afternoon, i came
home from the doc's appt and grocery shopping and crawled under the
covers for a two hour nap.

anyhow, i didn't mean to start whining myself! i just wanted you to
know you're not alone. i hope your doc can tweak your meds in some way
to help you.
keep us posted,

diane

{{{{Charrly}}}}

    You sure do need featherhugs today. Wish there were more I could
offer...but here's hugs backatcha, Hon!

Extra Gentle Hugs from Rosie

Whine all you need to if it helps.  It really sucks to be in pain.
I hope tomorrow is a better day for you.

Sending gentle hugs...

skip

sorry for your pain Charlene.  Sending kind thoughts and hugs
janice

Soft hugs Charlene....I am so sorry that you are in so much pain...And they
give you Ultram...OMG....You are in way more pain than that....
I thank God that I don't have anything but the OA FIbromyalgia and
psuedogout...But my Rhuemy understands that pain is bad and he helps me stay
as pain free as possible...Maybe you had oughta shoot your rhuemy
tomorrow....
Sorry that you are fed up...I hate it when I get to the point of being sick
and tired of being sick and tired
Hugs Cindy

Hi Char. You have every right to be sick of it.  Hope all goes well with
the doc.  Good thoughts to you.
Junebug

Been there and are there and understand completely. Whine away - we
understand.  Try to plan a special time to look forward to even if it is
going out for coffee with a friends.  You might also need to be reassessed
by your rd - might need that prednisone upped a bit or a different
combination.  Physio, ice, orthotics changed??? New wrist splints??  I
understand your frustration believe me and it sounds like your rd needs to
relook things a bit.

Gentle hug and please make sure you do something special for yourself
occasionally to put your mind at rest.  It is needed.

Kelly

I don't have any advice, but I did want to offer (((((Charlene))))).  I
hope the doc helps.

Ali

Charrly,
I feel for you, I really do.  Have you tried to change your diet much since
you were diagnosed?
Stuart

Charlene,

What kind of cheese would you like with that whine. ;-)

I am sorry to hear all that you have to deal with. I feel for you and my
heart goes out to you. You are in my thoughts and prayers.

I sure hope you find something that works well for you and soon.

How did your RD appt go. I hope it went well.

No need to apologize, Charlene.  It's the proper forum for these sorts of
complaints.  What's more is that there are probably more people than just me
sitting here reading your post, nodding and thinking, "You took the words
right out of my mouth."

I personally hated the jump to stronger pain meds (narcotics, in my case),
as my denial was strong enough that I believed I could rest enough or
exercise enough or take enough supplements or pray enough or SOMETHING to
make the pain less.   In my case, I simply couldn't find any other answer.

I realize that stronger pain meds are NOT the answer to everyone's pain, so
I'm definitely not trying to tell you what to do... it's just what I ended
up doing and it has worked (at times) for me.  Additionally, there is the
problem of some doctors simply refusing to prescribe narcotics, even if the
patient needs them and those who do prescribe them are subject to intense
scrutiny by the DEA (at least I think that's the right acronym... now I'm
not certain as I'm re-reading this...).

Anyway, hope you are able to find some relief from your RD.  You are
certainly not alone in being tired/fed up with all the symptoms and side
effects of these illnesses and the meds we use to try to quell them.

A non-medication thing that I have tried here and there (and this idea was
from an audio tape my friend let me borrow about one woman's approach to
fibromyalgia...) that sometimes helps (and it could be psychosomatic, I
admit) is dropping my diet down to bland, "sick" foods, like oatmeal, fruit
baby food (the veggies and meats are just a little too icky for me to
stomach in that manner) and clear soups/broths and, of course, the standard
Jell-O.  I love fresh fruits and veggies, but I suspect that I overdo even
those at times (as I've been doing a lot of salady food this week, but I
have bad heartburn keeping me up tonight/this morning after months of no
heartburn... and I don't do salad dressings... I only use salt and pepper on
mine).  Now, this definitely is NOT a cure, but it does sometimes settle
things down to a low roar instead of all of my parts seeming to scream at me
with pain in them.

Admittedly, the anklosing spondylitis sounds worrysome (to me, anyway).
After over a decade of doctors basically doing nothing but having me
exercise/lift weights/etc (aka physical therapy), I now have complete nerve
damage in my back (as in no undamaged nerves and this is permanent).  I
wouldn't wish it on anyone.  :(    Had I been seeing the doctor's group that
I now see, I honestly believe that they would have bent over backward
(pardon any weird pun there) to make sure that the damage didn't happen in
the first place, but I was in a different area of the midwest for all those
years and have only had access to this set of doctors for the past 4 years.

Mary

hi it is not often that i come across some one with fibromyalgia i have had
this for just over ten years know at first it was back pain but know i have
pain all over my body and can not get about now i have had to get a scooter
so i can get out or i would spened my life indoors thay say not two pepole
are the same with fibromyalgia so it would be good if you wood email me
back i am a 40 year old woman just found thi site thank you for reading
this hope to hear from you

I am so "with you" . . I've got RA, AS, Fibro, Crohns, blah blah.
I remember someone saying "If I'd known I was going to live this long,
I'd have taken better care of myself" LOL
I'm on Remicade, metho, pred, flexirel, Zonegran, Wellbutrin . . .
plenty of vicadin  . . . seems the only thing that changes is the name
of a new Autoimmune disease I now have.
Marriage is on the rocks . . . this stuff gives new meaning to . . . in
sickness and in health.
Some days I can find joy in the simplest things . . . other days I think
about death and wonder what it's like . . . Dying doesn't scare me but
how I go out does.
Mostly I think of the kids I see at the hospital in the cancer center
where I get my remicade infusion. They're young, losing their hair . . .
they still smile. Puts things into perspective pretty quick.
Being able to read these posts helps . . . so many of you out there
struggling like me. It helps to hear about your good and bad days - I
relate and I'm not alone.
Hang in there Charlene . . . the simple joy is there somewhere.
K

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