Am I the only one not in pain?

[Linda196]

I can't really speak to the corelation of pain/dryness, because I can't really say that my joint and muscle pain is a result of the SjS. I had Sarcoidosis, myositis and inflammatory arthritis before getting the SjS Dx. There hasn't been an unusual increase in any of the various aches and pains since the SjS symptoms started (never less than 4/10) and my dryness is "profound' according to optho, dentist and ENT. (0/0 on Schirmer's and <0.1 ml saliva in >5 minutes where normal is 0.5-1.5 in a minute).

[lesleyjoy]

Actually, the first sign that something was wrong was a deep aching pain in the backs of my legs that kept me up at night and "butt" muscle spasms, but this subsided when I scaled back on exercise.
Unfortunately, it's not just the dryness.  It's the bad "whoozy" feeling I get frequently that is disabling (although the Plaq and Medrol seemed to have helped).
I also have enlarged Parotids, but they haven't bothered me too much.
Hey, Lesley---winter in June?  That's another thing that's different now that I think about it.  I love the summer and the sun doesn't seem to bother me....

Hi yes, New Zealand is in the Southern Hemisphere and the seasons are opposite to those the Northen Hemisphere Luckily I live in Auckland(northern part of the North Island) so the temps are moderate, lots of rain during winter though!I don't know if those with less pain have more dryness issues or if they just notice them more because they have less/no pain  My weird issues started many years ago (25+) and dryness issues didn't emerge till about 4 years ago. So far no diagnosis (sero-negative) but rhumatologist acknowledges autoimmune going on (it's in my family plus I have CFS)! Given up worrying about a definite diagnosis, I may never get one!

Cheers, Lesley (NZ)

[salsen]

You are one very blessed person.  I have lived with chronic pain for over eleven years now and to have one day pain free is truly remarkable.  It is so rare now that when a sporadic pain free day occurs I almost do not know how to act LOL.  Truly count your blessings.  I hope you remain pain free for a very long time.

[gsmraxe]

I keep reading about people who have a lot of aches and pains.  I have some pain in my hips, neck and upper back, but it's sporadic and not that bad.  Am I lucky, or do many others not have real pain?  Just curious....

Hi Babs,

You are either very lucky or it hasn't hit you yet.  I get the joint pain, not enough to knock me on the couch for a long time, stretching helps, and no meds for me (yet).  I've noticed tho, that the last year, the joints are getting achier...I'm not that dry, but I think the osteoarthritis is going to be the kicker for me.  I too don't have the other symptoms that many on here suffer from, so enjoy the time now...I am.

[Wynter]

I agree that those without much dryness don't have as much body pain. I have severe dryness and don't have alot of body pain,unless I don't rest. Another lady I know has the joint pain and fibromylagia, but doesn't have the dryness like I do. My mouth hurts so bad sometimes and  so do my eyes.

[Ohiocat]

You are not the only one  that is not in pain.

I was diagnosed with Sjogrens in 2006.  Have dry eyes and dry mouth, but no real pain to speak of.   As I have found out by reading these forums, this disease seems to be unique per person.  It does not pay to worry about the problems that you don't have.  Just deal with the issues as they come up!

[navydad]

The pain came n gradually,,over the course of two ears when doctors would not take me serious, like wheni had buring feet,, my GP said well you know you have a bad back,, so it asent till this past feb that a biopsy was done and showed periphal neropathy,, the neuro said, if you ave it in your legs,, its in your arms too,, well that excplains the drops,, the numbness and tingling

[kindandcaring]

My ownexperience..I started off with zero pain about 3.5 yrs ago..Ive progressed from go to woe in that time.
My eyes are severely dry (quadra plugged) as is my mouth/skin...at the beginning all I had was a slightly dry mouth when I woke up.

I therefore beleive that when it comes to severity/progression of any diseases we have..we are all unique...some are luckier than others..some do not progress others progress rapidly/severely.

Ive read in the texts that males are unlikely to get autoimmune diseases..but when they do its usually severe...I cant say this is true (in my case perhaps)..I just think we are all unique.

The message though is simply..enjoy your life as much as possible NOW..no matter how severe or not the disease is at this moment.

All my best

[Babs659]

Oh, Navydad, the burning feet!  I've had that for years, especially at night.  Quite uncomfortable, isn't it?

[Crabcakes]

You are most fortunate. I have a LOT of pain, but little dryness. My throat and lips get dry, and the skin on my extremeties. Actually, the skin on my arms really came ot light a few months ago. I attributed it to the aging process (I am 56). I never had dry anything before. I have very oily facial skin and "normal" body skin, so to see dry arms was a shock!

Lucky me, my eyes are good. I live in Phoenix, where it is much drier than when I lived back east. I am on th ecomputer most of my waking hours and am blessed that my eyes are not affected!

[navydad]

Oh, Navydad, the burning feet!  I've had that for years, especially at night.  Quite uncomfortable, isn't it? they really dont burn anymore,, unless I have gotten used to it,, well no I havent,, Its weird,, Icant wear dark colored showe,, the sun seems to soak up the heat from dark ones and brns my feel something awefull,, I knew something else was wrong when I went to a hockey game with my son,, and we were sitting prety cloes to the ice,, my legs were so cold I had to put two coats over them,, I hate this disease,, every darm part of it