Janet - Sjogren's syndrome

[Guest guest]

Janet, I know how frustrating it is to try to figure out what your exact

diagnosis is, but I just wanted to let you know that primary Sjogren's

syndrome (that is, not secondary to another disease such as RA or

lupus), in addition to its classic symptoms of extremely dry eyes and

dry mouth, can indeed cause significant joint pain.

Sjogren's is not very well recognized by the medical community. Despite

its often debilitating symptoms, it's a diagnosis that is often missed

or minimized. Part of the problem, too, is that the guidelines used to

aid making a Sjogren's diagnosis have not been agreed upon worldwide.

Some believe that the number of people with Sjogren's is possibly close

to the number of those who have rheumatoid arthritis.

http://www.sjogrens.org/syndrome/

http://www.clevelandclinic.org/arthritis/treat/facts/sjogren.htm

http://www.sjsworld.org/wa_symposium.htm

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> Welcome to the group! You will love it here even more than you did now

that you are posting. I am relatively new to the group and it has been

such a blessing.

> I am 29 and have been dealing with the pain for almost a year now - we

are treating Sjogren's, but are still searching for the real cause of my

joint pain. When I joined I was in the middle of a rather nasty flare -

they seem to get worse each time, and this group was a much-needed

answer to a prayer. My family is very supportive - probably watching my

sister go through this made it easier to understand - but I still felt

misunderstood and alone. And the search for a name for my pain is also

a frustration - but I try not to let it be. I will get an answer when I

need one. Please keep looking for a doctor till you find one that will

listen. I am on Plaquenil, Relafin and Prednisone - though the pred did

not work as I had hoped. We had to keep increasing it until it messed

with me too much and we had to taper it back. I am feeling better the

last couple of days so I am not sure what is actually working - but

please don't give up. It is a long process sometimes to find the right

combo. And everyone is different so it makes it all that more of a

challenge.

> Keep looking and telling them how you feel. And as I was told when I

joined - we serve all the " whine and cheese " around here you need. We

understand your frustrations - it's a guarantee someone has dealt with

the same thing you are!

> PRayer for strength and a moment of no pain -

> Janet