Re: Frustrated, need your input.

[Guest guest]

, Many times xrays do not show joint damage that is happening in the synovium, or lining of

the joint. You may need scans, rather than xrays, with contrast dye. Also, Lupus can cause what my

dearly departed Daddy used to call Aunt Agatha's Travelling Pains. That is, pain that is not traceable

to a specific cause, can't be seen on xrays, and is directly caused by our immune systems going

on overload and attacking whatever part of us it can reach. It is very frustrating, and very hard to

live with, as I know very well.

My first move was to get a second opinion from an orthopedist. Then took his findings back to the

Rheumy for consultation, and a brainstorming session on how best to proceed. Since I have RA as

well as SLE, and chronic Lyme disease, it is hard to single out the culprit for each specific joint problem, however, anti-inflammatories have helped me tremendously (I have IBS, too), as did water

exercise when I was able to breathe well enough to participate. Right now my heart is not functioning

as it should, so exercise of any sort isn't in the cards, but once they fix me, I'll be back in the pool

again. That was the best for my joints, bar none. Hope this is helpful. Hugs, MM

[Guest guest]

Shelby? Are you my long lost twin ?? I was dx'd with fibro two years ago to, for the same reason and then last year with the lupus but I swear I have more fibro pain than lupus pain all the time unless I take my avinza.

a C

Fibromyalgia two years ago. The only way I can describe it is

that for some darn reason, I seem to hurt everywhere, all of the

time, for no reason. It's like I got a sports injury sans sport! So

lame, I know. Well, I hope I helped, or at least gave you something

to ask the doctor about. Good luck!

Shelby

[Guest guest]

>

> I am sort of confused about something and I would like to know what

you all

> think. I have significant back and hip pain, but my x-rays didn't

show any

> problems, nor did my MRI of my back, so I can't understand where my

pain is coming from.

Oh goodness does this sound like me! I remember one time they took x-

rays, CT scans AND MRI's to try and figure out what was going on! As

far as pain in joints, my problem is that my synovium has decided not

to be the nice little filter that it's supposed to be. Now it

filters in but not out, and grows and swells until my joint gets

practically useless. Luckily, I have a great Orthopedic surgeon that

had seen it before in another Lupus patient. Needless to say, a good

orthoscopic procedure is now my friend!

As far as pain in general like the stabbing pains you described, I

have a lot of that, too. Sometimes I feel like someone jammed a

needle into my arm or wherever. Strange fantom pains that seemingly

had no cause or could not be explained landed me with the diagnosis

of Fibromyalgia two years ago. The only way I can describe it is

that for some darn reason, I seem to hurt everywhere, all of the

time, for no reason. It's like I got a sports injury sans sport! So

lame, I know. Well, I hope I helped, or at least gave you something

to ask the doctor about. Good luck!

Shelby

[Guest guest]

Dear a,

Thank you so much for sharing your experience with me! I really appreciate it, and it helps me to know that I am not alone in this, but at the same time, I am sorry for the suffering that you and other have gone through and are going through.

I will look into getting a second opinion. Again, thank you!

Love and Hugs,