I feel INSANE

[lipin3]

For months now I have been going to doctors and each one finds something. which is a good thing because it lets me know the immense pain is not just "in my mind"

The pain dr finds 9 disk problems of all kinds in my cervical, thoracic, and lumbar. But he says that isn't causing the kind pain to make me feel the way I feel. so it isn't his problem go see someone else

SO I go see Surgeons the say no surgery great but what about the pain that is not causing your over all pain okay  GO see someone else.

The neurologist gave me meds for headache but the headaches are not enough to make me feel the way I feel. so it isn't her problem go see someone else

The rheumatologist diagnosed me with fibromyalgia and Sjogren?s syndrome and wants my pain dr to treat me?? and my pain dr knows nothing about Sjogren's. so now what?

I have these 2 mystery pains in my side no one can diagnose, although on 2 Sjogren's chatsites 2 others have this one pain on the right side below the ribs over the liver. I have ha CAT scans MRCPs nothing I have had Epidurals all kinds of shots which have helped the pain in my back some what. BUT...

I know you are not all medical persons however could Sjogren's and fibro cause all these pains, constant headaches, muscle pain, tingling hands & feet, tingling mouth & head, stand in one place my lower back hurts, sit in any chair besides mine and my thoracic back hurts, use my arms to clean and not only does my back hurt but so do my arms and my hands go tingly, depression, cant lift my right arm to wash my hair because of that mystery pain in my rib area, sometimes cant come up with a word, but if you asked me if I were dry I would say a little. I was diagnosed withe SS by blood and fibro by the tender points and ruling everything else out. there is more but that is enough for now

I am only seeing specialist I go to see an internist this month in hopes someone will look at me as a whole person instead of just parts. My drs poopoo me I am tired of trying to explain how much pain I am in, how tired I feel and how I feel I cannot push through this any longer. I am crying way to much lately,

Any insight or advice would be wonderful
Lisa

[dbab]

The rheumatologist diagnosed me with fibromyalgia and Sjogren?s syndrome and wants my pain dr to treat me?? and my pain dr knows nothing about Sjogren's. so now what?

WOAH!  I would say time for a new rheumatologist.  Rheumatologists are the specialists for fibro and SJS so I'm taken back by this.  Maybe he/she doesn't want you to have med interactions/possible overdoses?  I would agree that you do need one doctor who will "manage" your care and coordinate with all of your specialists (especially when all of this can involve meds).  For me that person is my rheumy, but an internist would be just as good.

I'm sorry you are going through all of this.  Very frustrating!

[JannaLee]

Yup, dbab is so right!

You need a really good rheumatologist.  These things need to be looked at and figured out, but I think they could all be related to Fibro and Sjs.  We had someone else on here recently who described the same rib area pain you mention.

I think it's time to look for a Rheumy who also understands the neuro complications that come with Sjogrens.

Finding this doc is probably going to be difficult...good luck.

Janna

[eyeamdry]

My instinct is to say yes, that all of these (or most) could be caused by Sjogrens and/or Fibromyalgia.  Now, I'm just another nutty patient, you know, so take none of this as gospel. 

I have many of the things you are talking about and I know drs just do "not get it."  I do have a good GP and rheumy so I'm ahead of the game.  I know they can't "see" our problem and therefore probably believe we don't have it.  I have not gone to a pain clinic, but was this ......close, but my rheumy tried me on Lyrica and it helps my TN pain about 50% and that is keeping me sane for the time being.  I'd be wary of going into surgery as I'm afraid this will just cause more numbness.  If it's life threatening, then it's a different story.
Lucy