Arthritis and Sjogren's Syndrome?

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paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/2/2011 3:50 AM (GMT -7)   
I'm 21 years old and I'm in a very difficult, diagnostic limbo at the moment. I was told I had Fibromyalgia, then Drug Induced Lupus. I saw an ophthalmologist who said I had very dry eyes (although a normal Schirmer) and he said "definitely a degree of Sjogren's, probably over lapping with Rheumatoid Arthritis". Then I had a bone scan which showed arthritis in my fingers, wrists, shoulders, knees and hips. My rheumatologist said "definitely a connective tissue disease, either Sjogren's or Lupus". I then had to see a different rheumatologist for a 1 off appointment and he dismissed my dry eyes and possible Sjogren's and said Psoriatic Arthritis.

My blood tests show a weak positive ANA, I've had two elevated ESRs and now two months of high liver function. Everything else (anti-dsDNA, SSA, SSB, anti-CCP all that) negative.

I'm waiting to see ENT for nose ulcers and a dry mouth specialist for a lip biopsy (although I've been warned against it).


As you can probably tell, I'm SO confused. I'm trying to do my best to make sense of this all, but I have two question.

I know that arthritis can be a symptom of Sjogren's Syndrome, but how do you know that you don't have Rheumatoid Arthritis or Psoriatic Arthritis as well? How do you know if your arthritis symptoms are just what's expected in Sjogren's?

And, is there anyone out there with negative blood tests for Sjogren's or other autoimmune rheumatic diseases only to have something show years later?

Thanks.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8445
   Posted 10/5/2011 2:43 AM (GMT -7)   
A lip biopsy can be painful, make sure to have
plenty of ice cubes to help with the pain....
Usually, I can tell if the Arthritis is bad cause my joints will swell up.
and yes I've had a negative blood test for sjogrens and my biopsy
was imflammed, but not imflammed enough, but my RA doctor says it's
sjogrens that I have, my eye's are dry enough, I go through the eye
plugs so very fast every 6 months they get replaced, but they
do help my eye's...Sure wish they had a better test for sjogrens...
It took a hand mri to reveal my RA...it is so disappointing when you have a lot going on and no good or clear cut
bloodwork...but you can still have a autoimmune illness, many well wishes to you and will be thinking of you.
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/5/2011 2:53 AM (GMT -7)   
Thanks Chartreux, I'm unsure if I want to go ahead with the lip biopsy. I've heard many horror stories. I'm really just wondering, what's considered typical arthritis in Sjogren's and how do you know if the arthritis you have is just Sjogren's arthritis or RA arthritis?
It sounds like you've got a good doctor. I've got dry eyes, an occasional dry mouth and arthritis. I don't think it'd take a rocket scientist to say it's Sjogren's. Why do you not have permanent plugs?
It was the bone scan that showed my arthritis, but I'm just not sure if it's RA arthritis, Sjogren's arthritis, Psoriatic arthritis or Lupus arthritis!
Thank you for your help.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8445
   Posted 10/9/2011 8:40 PM (GMT -7)   
Most eye plugs out there are supposed to last for a year or longer, but mine just don't
I consider it lucky to have them last for 6 months...they are the long lasting ones my eye doc uses...
They would probably last longer if I used the medicine your on, but I had a nasty side effect
on that medicine, if your arthritis showed up on the bone scan you've probably had the
disease for a little time now...Sjogren's is a totally different autoimmune from RA...and
yes it is possible to have more than two autoimmune illness...Make sure to keep water handy to
help battle the sjogren's...
Hope this helps...
Many well wishes to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/10/2011 12:12 AM (GMT -7)   
My ophthalmologist said that they can put in temporary plugs that last about 6 months and then if they help he'd put in permanent ones. I decided I'd just stick with the eye drops.
I think I either have RA or Psoriatic Arthritis and Sjogren's. My eyes and mouth are definitely dry and I think the arthritis I have is in too many joints to be just Sjogren's. I also have Celiac Disease, so make that three!
I drink heaps of water and always have my eye drops with me. It's so frustrating, I can't be bothered with being sick anymore!! I know that sounds stupid, but I want something else to think about/feel!

Thank you =]

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8445
   Posted 10/10/2011 2:17 PM (GMT -7)   
It can be helpful to have a hobby, maybe you do something good,
I totally understand with wanting something else to think about...
my needlework helps me keep my mind off my pain at times...
Do you knit or crochet or needlepoint (Point de Croix)..
or do you love to bake...it'll soon be Christmas cookie time...
You can still have a hobby, it's just on times that our illness makes it harder
to do, but you will get some good days, they are worth looking forward
to...Also you might want to consider maybe seeking out help with counseling now
to help when you do have a really bad day...counseling can
help teach relaxing techniques and focus on other things..
Many of us here that have a few illness do seek out counseling help...
just a thought...meant in a good way...
Many well wishes to you...
Today, I got finished with a block of cross stitch (Point de Croix) I started yesterday,
it may not be a lot but even a few stitches a day, and it'll soon be done. Keep hope.

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/10/2011 3:13 PM (GMT -7)   
Thanks. At the moment between feeling sick, trying to do some exercise and studying at university, I don't have a lot of time/energy to do much else! Thank you =]

sayyadina
Veteran Member


Date Joined May 2009
Total Posts : 564
   Posted 10/11/2011 6:08 PM (GMT -7)   
Hi paperbagprincessNZ.

So sorry you're going through all this, but I know how it feels because I've been going through something similar. I've been bouncing between many different doctors in different states for the past several years (actually so long I can't remember, though things have gotten really, really bad for me the past year or two). My ND mentioned Sjogrens, and then my eye dr did too (had only a tiny bit of moisture in my eyes near my tear ducts when she tested my tear production). Saw a new rheumatologist last week and had a bunch of blood drawn and chest xray.... then I spent the next 2 days recovering from having ~8 4ml tubes of blood taken from me!

I've gotten to the point in the past year that I've had to cut back so many things. Have had to delegate many farm tasks to other people, since I just cannot do them any more. My hands just don't work very well.... very numb and I've lost a lot of strength in my hand, seemingly overnight.

Don't have much energy either, and am in too much pain when I feel well. I'm also in school, though currently only part time, since I don't think I could function physically with a full time course load. Most frustrating thing is that I probably could function mentally.... though I'm beginning to have my doubts since I'm having a lot of short term memory problems.

One thing that's really helping me a lot is Restasis. The first few weeks were kind of uncomfortable though much better than without it. Eyes so dry I couldn't sleep. Though I don't sleep too well with the joint pain either.

I've spent some time searching online, reading up about different diseases that sound like what I've been experiencing. Just frustrating knowing there's something wrong and not being able to get any answers (and having drs treat me like I'm crazy). I've also been keeping a diary of my symptoms, too. Every time I see a dr, I print out my list and give a copy to the dr.

Hang in there. Hope you get a definitive diagnosis and get treatment that helps you.
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