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 :)
I think maybe you're lucky!! :) I got a lot of joint pain (tendons) before the dryness ever developed. Started on Voltarol in my 30s. Am now in late 50s and have osteoarthritis as well so I don't know what's that and what is connective tissue any more. Once upon a time the pain was mainly in my elbows. Now it's feet, achilles tendons, calf muscles, knees, one hip intermittently, upper back, neck, elbows and shoulders (but I think they are OA) So saying - I am NOT in as much pain as many. I'm not disabled by it. I was disabled briefly due to bad arthritis in one knee which a joint replacement sorted. The rest of the pain is not like that.
I wish you many years of NOT hurting all over!!
Take care - Scottie :)
Short answer: Yes. ;D
Owie, owie, ow, ow.
You're lucky girl and I hope you stay that way.
Diag March 2009 and I don't have pain either, thankfully. But I know it is a possibility in the future as drs just do not understand SJS completely yet, Yes, I also feel very lucky. The immunologist said I test very high "blood tests" for the SJS antibodies too.
For some time I had lots of doctors "ticked". My gp cause the specialist couldn't figure out what was causing the abnormal blood#s; the "specialists" as I wasn't sick enough or progressed to very sick and didn't have the symptoms they thought I should have. They kept asking me how I felt which was pretty good except the doctors were driving me crazy and causing me anxiety!
I was relatively pain free from September (onset) till March/April. The pain has hit me now.. I have terrible pain in shoulder/neck... make the most of not having pain as it can come on so suddenly - with me it was overnight... and no other explanation other than SS (awaiting diagnosis).
On painkillers 24/7
Quote from: fluffiebunnie on June 06, 2009, 09:05:53 AM
I was relatively pain free from September (onset) till March/April. The pain has hit me now.. I have terrible pain in shoulder/neck... make the most of not having pain as it can come on so suddenly - with me it was overnight... and no other explanation other than SS (awaiting diagnosis).
On painkillers 24/7
Seconded! I had twinges in my hands for three weeks or so, and the overnight went to OMG! levels of pain. It comes on fast and hard!
REALLY HOPING this doesn't happen to you.
Enjoy the peace while you can and I pray you never know the pain a lot of us have. You are indeed lucky.
Some of us have been selected by Sjs as favorites (?) and I use the term very loosely. These poor souls have been the receipents of all the gifts Sjs can give. Swollen glands, osteoarthritis, heart problems, lung problems, pancreas and liver problems, joint pain, neuropathies (both autonomic and peripheral), Central Nervous System problems, and I could go on.
So yes dear, you are extremely lucky, enjoy it.
Pooh
Gee, Pooh. Sounds more like Lupus, doesn't it? So far, I've got the fatigue, lightheaded, dry cough, dry mouth and eyes, GERD and malabsorption. No fun, but thank goodness I'm not in pain on top of it.
Best of luck.
Hi Babs, lucky, lucky you! Can you tell that I'm jealous? I'd love to get up and not hurt just for a few days. It started with my muscles hurting all of the time, and now it's also migrated to my joints too. I see some more physical therapy in my future (other than the vestibular rehab I have yet to do), not my favorite things to do.
Ah Pooh, I'm so glad that I'm not one of it's favorites and that's a list I don't ever want to be on!
Take care -
Patze
Yes...consider yourself very lucky if you aren't experiencing pain...and take full advantage of those great days. I'm not one of those people unfortunately...but I hope that it continues for all of you that have very little to no pain days!
Hi Babs, don't feel bad about not having too much pain, I'm like you, I get it sporadically then have long periods of good health in between (just dryness issues mainly). However, I've got some bad shoulder soreness/pain going on and am on anti-inflammatores again and having physio. I've no idea what triggered it as I haven't had it there before grrr...It's winter here in New Zealand so the cold doesn't help :(
Here's hoping you stay pain-free ;)
Cheers, Lesley (NZ)
Since pain or joint pain is not part of the criteria of Sjogren's like it is for Lupus and Rheumatoid Arthritis, I would guess that you are not necessarily in the minority. The hallmark signs are dry eyes, dry mouth, and fatigue. I think I read somewhere that about 50% deal with joint pain. You have to remember too that most people that seek groups like these are the most extreme cases where a lot of people are out there that don't have the same symptoms beyond dry eyes/mouth so its hard to gauge when you are comparing people. Its just impossible to tell.
I'm very happy that you haven't had too many problems beyond the dryness. ;D
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....
Babs,
I mostly struggle with severe dryness of eyes and mouth, fatigue, GERD and brain fog. Interspersed, like you, I've had muscle and joint pain and some neuropathy but it comes and goes and most of the time it is not there. I had more pain issues in the beginning. So, you are not the only one. I've noticed that a lot of people with more pain issues don't seem to have the severity of dryness. ???? Just my observation.
Anna
Anna, that's a very interesting observation. Do you all agree, that those the most dry have less pain issues?
I also have GERD and a dry cough, etc.
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).
Quote from: Babs659 on June 07, 2009, 04:08:49 AM
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)
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.
Quote from: Babs659 on June 06, 2009, 06:21:26 AM
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.
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.
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!
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
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
Oh, Navydad, the burning feet! I've had that for years, especially at night. Quite uncomfortable, isn't it?
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!
Quote from: Babs659 on June 10, 2009, 06:17:43 PM
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