Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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sjogrens and fibromyalgia

how many of us have been diagnosed with both?

Replies

deleted_user
deleted_user

I was first diagnosed with fibromyalga and then they told me sjogrens. I also have RA. They tried a few medicines and nothing has workd so far. I am still tired and in pain most of the day. They want to start Rituxin. Has anyone done this and if so was it helpful. I am afraid to do this.
Sillyak
Sillyak

I have fibro and SS. Helen what symptoms do you have that made them decide to put you on Rituxin? What is it suppose to help?
deleted_user
deleted_user

I have both. there is something like 55% of us end up with both. hugs marilyn
penny59
penny59

i have both also....
Tom59
Tom59

What is the testing for fibro? How do they determine whether you have it or not.
I know I have RA. I also thought for awhile I had Fibro , but so many symptoms cross. I also have Raynauds.
I believe once you end up with secondary all 7734 breaks loose. Intially I had dry eyes, then my mouth, then a few years later everything fell a part.
http://www.fibromyalgia-symptoms.org/fibromyalgia_diagnosis.html

I certainly don't want to take claim to fibro , but the way things hurt at times I wonder.
Tom59
Tom59

http://www.fibromyalgia-symptoms.org/fibromyalgia_sjogrens.html
deleted_user
deleted_user

I also have both, was first diagnosed with IC, then IBS, Fibro, Sjogrens, RA, Peusdo tumor cerebri, and the list goes on and on. I have had them all for a long time just took a real long time for them to get them all officially diagnosed. I think it is all connected. Real scary to always wonder whats next. I'm on Imuran and its helped a little. But winter is on the way and all my symptoms are 5 times worse when it gets cold. I need to live in the Carribean (don't I wish)

Deb
Sillyak
Sillyak

Tom,

Your right about the symptoms of many diseases crossing/ being the same. No wonder it takes a long time to properly diagnosis people. Do a search on the American College of Rheumatology and the will tell you the criteria for fibro. But if you have dry eyes and dry mouth you may have Sjogren's too. There are blood tests sometimes called ANA 8 that identify the major connective tissue diseases. Sjogren's is similar to fibro and Lupus symptoms and the ACR criteria is listed on the web page too. Have the blood test if you haven't already. I was mis-diagnosed because my first and second rRheumy did not run the blood work. Don't let that happen to you.
deleted_user
deleted_user

HI, I been away for a bit I have both plus Lupus and a few more lol life throws us challenges because we are the strong ones
deleted_user
deleted_user

I was first with fibromyalgia because all my tests came up negative even though they kept saying it sounded more like lupus... I believe I was untreated for years and thats why I am in the shape I am in now... they should have diagnosed me on my symptoms that were OVERWHELMING (butterfly rash, fevers, swollen joints, inflamation in my blood for over 6 months etc. and these doctors should not just rely on the ANA blood test which is a bad way of diagnosing... I finally got some answers when I went to the lupus center of excellence in PA where they test for everything under the sun and their labs are very sensitive. Anyway so to answer your question I have fibromyalgia, Lupus, Sjogrens, IC, asthma, SVT, costochondritis etc. etc. I am also being tested for auto-immune liver disease and some auto-immune muscle disease based on my latest lab work that is pretty sure I have both but need biopsies to be for sure... lucky me... I do however think fibromyalgia is over diagnosed... I just talked to a woman today who has been in pain for under a month and they are already telling her she has fibro which boggles my mind because the critieria is pain for at least 3 months... it's like they just want to push you off and label you with that instead of looking further... it just seems like I talk to a lot of people... friends, family etc. who just go to the doctor with some aches and pains and right away they label it as fibromyalgia... is is more complicated than that... anyway enough of my ramble... but yes it is very common to have fibromyalgia along with other auto-immune disorders... I forget what the percentage is but in the case of lupus it is a high percent number of lupus and sjogrens patients have fibromyalgia as well...
Sillyak
Sillyak

MO6 I agree with you about first assuming its fibro. It's a quicker diagnosis and no need for further testing or meds. I worked and went to Rheumies from a prestigious medical college in Chgo and they never even ran the Connective Tissue panel on me but labeled me with a Connective tissue disease and treated me with the wrong medication. If this could happen at a reputable medical school how can we expect suburban docs who see far less to diagnosis us properly!
deleted_user
deleted_user

sillyak: Exactly why I traveled 5 hours to the lupus center of excellence... doctors and specialist who actually knew what the hell they were talking about... Now I am in this catch 22 though because I was blown off for so many years and now they are finding out I have several auto-immune disorders so it's been a rough year... still waiting on two more tests/biopsies to rule out two more freaken auto-immune diseases... like i said in my past post i dont think i would be in the shape I am in now if I would have had the proper tests done years ago and been started on treatments... ugh.
Sillyak
Sillyak

What I'd like to see on this site is: In our profiles in additionto the list of our diseases would be the antibodies that are positive. After reading a lot of research for Lupus I know that a small subset of patients test positive for anti-Sm and anti RNP. Reseachers conduct a lot of projects to this sub group because they think if they can nail down what is happening to this group they can find a cure for Lupus.
deleted_user
deleted_user

The testing for fffibromyalgia is mainly the trigger point tests. If you have 11 out of 18 you have fibro. AA good rhuemy will rule out autoimmune diseases. hugs.
JillyT
JillyT

I was diagnosed with fibro 20 years ago. In addition to the trigger points to confirm Fibro, you can poke me anywhere and it hurts, lol. One of my drs suspected RA but the blood tests always came back negative so I was treated for OA with NSAIDs. I developed symptoms of SS in the summer of 2003 and in '06 was diagnosed with RA and SS.

According to the literature and many drs, once you have an auto-immune disease it is likely that you will acquire another one.