Symptom Questions

[shevonne]

Its obvious to me that I have had Sjogren's for a long time and just being diagnosed at 46.  I was wondering when any of you were diagnosed were your symptoms mild and have you picked up more symptoms as the years go by.  I ache in my joints right now.  I have had migraines all my life.  I am also concerned about seizures.  As a child I have had seizures from brain damage on the right side or maybe left; I dont remember which side now.  Anyway, I outgrew them but I always have concern about them coming back.  Do any of you have seizures?  Should I expect my symptoms to get worse, maybe so cause they have gotten worse for me to be diagnosed now huh?

[JannaLee]

Hi Shevonne,

I was diagnosed when I was 46 also (2 years ago) and have seen active disease process since then.  My symptoms are worse and there are more of them.

However, there is no way to predict this and, from what I hear some people don't really progress a lot over time.  The literature says "slowly progressive disease" so there is no knowing for any of us.

About your seizures, that is something I've NOT seen or read (on here and medical web sites) is a "common" issue, but since Sjs can affect neurological functioning, probably this a possibility.

Nice to meet you and wishing you wellness!
Janna

[mac]

Hi Shevonne,
I won't be the one to address how things progress. There are many, many more learned folk on this site who have so much accumulated info it will blow your mind!  I can only address my path, roughly the same as your's.  I was dx'd in Dec but from going to see phys for burning, gritty feeling eyes for a few weeks so bad I could barely see.  It actually took my husband's friends to convince me to seek attention.
Yep, looking back I have had all the classic symptoms., swollen lymphs, trouble eating with that, gritty eyes with discharge (which optician said 'no problem'), joint pain, back pain, utter fatigue, all of which caused me to retire from a job I absolutely loved!  I also have suffered from headaches most of my life and hormonal migraines which lasted 6 days at a clip without any relief, for 20 years.  Fortunately never experienced seizure with them.  
A lot of this I can trace back to about 7 years ago, some a lot longer.  Whether it was SjS then or not I have no way of knowing, and it wouldn't have mattered.
Checking family history, I found a cousin who was dx'd with SjS about 20 years ago but her symptoms did not worsen and she feels she must be in remission as she only uses eye drops occasionally.  May not even see here Rheumy this year.
I, on the other hand, have been using some type of eye drop since last September and much more often since December.  The joint pain, fatigue, have come and gone but more recently seem to linger.  Will see the Ophthalmologist tomorrow for the first time (and believe me this is scary since I have enough trouble just getting drops in!)  But has gotten to the point where I have to be proactive.  
I began taking fish oil supplements last week based on lots of reading (on this forum and else where).  I wouldn't expect to see any improvement in that short of time.  
I think you will find that this disease affects everyone differently, to different degrees.  There are people who are suffering greatly, navydad, Inga, Epson, etc.  They give us an idea of what can happen with it but that doesn't mean we will all get to that point.  
I think it was Carolina who gave the advice of living the best you can, do what you can do, enjoy new activities as many of the old ones we may not be able to enjoy any more.  I look at it as a chance to grow in a direction I would have never been able to imagine before.  It gives a challenge and purpose in life and a focus on something other than this horrible disease.
I'm sorry for rambling on this AM.  Perhaps I needed to give myself a little perspective about this as well.  We are all sorry to see a new person have to seek out this forum because they have been dx'd, but I believe we are all glad you have found us and may be able to experience some comfort and gain knowledge from your fellow Sjoggies.
Hoping for the best for you.
Gidgie's Gammie

[JannaLee]

Well put, Gammie!!

[Blue Kat]

I'm another one who was diagnosed at 46 last summer (I'll be 47 this coming Saturday).  I ignored my symptoms for a long time figuring no doctor would take me seriously with such weird seemingly unrelated symptoms, but then when I finally couldn't ignore them any longer I went to my GP and to my suprise, she not only listened but took me seriously and ordered the blood tests that led me on the way to a diagnosis. 

In the nearly 11 months since, my symptoms have definitely worsened and I'm seeing more bad days than good.  I'm still not as bad off as a lot of people on this board, but I don't know what the future holds for me at this rate.  I just take it one day -- and sometimes one hour -- at a time. 

[magistramarla]

Hey Gidgie's Gammie,
  I know just what you mean when you mentioned not liking to put anything in your eyes.  I refused to even try contacts, since I was so very touchy about anything coming near my eyes.  When the kids gave the entire family pink-eye and we all had to use antibiotic drops, my hubby had to pin me down on the couch, sit on me, and put in the drops.  I just couldn't stand them. Now, since being dx'd with dry eyes last summer, I've become an expert at putting in eyedrops - several times a day - both Restasis and Systane. 

Now, I'm grappling with another thing that I'm touchy about - my back.  The neuro wants to do a lumbar punch, and that scares me silly.  The mere thought of an epidural was enough to make me happily have my babies at home.  When given the choice of an epidural or a general for knee surgery, I easily chose the general.  Now he wants to punch a needle into my spine?  Its going to take me a while to come to terms with that one!

  My hubby pointed out yesterday that I've had to come to terms with a lot of things that I didn't like when I was younger, thanks to this disease - eye drops, taking meds on a regular basis, having surgery, and now the dreaded lumbar punch.  I guess that it is all a part of dealing with this - we have to learn to face some of the things that we feared the most.
Marla

[mac]

Marla,
Good luck with this lumbar punch!  I'll be praying for you (as I do for all my Sjoggie buddies).  You are so right, we have to learn to deal with things we didn't want to face before.  The eye drop things weren't too bad in Dec when my daughter taught me to lie on the bed and look to the side but lately I just know when the drops are coming and blink, or miss the eye and they roll into the eye but get over the lashes.  Yuck!  Had the husband do them today and he got them right in but I couldn't let him touch me!  He puts his hand on the face and the eye closes tight as a drum (not the kind of oil drum you find in the Gulf tho, unfortunately!  LOL)

Shevonne, don't let us scare you, you can see what we have learned to overcome!     My model in dealing with this is a little boy who has been dealing with terminal prostate cancer for the last two years.  He's now 9 (or shortly will be) and has gone thru Chemo and radiation, as much as they could possibly give him...and still goes to school and plays hockey!  If he can do all that ... at my age9pushing 65), what's a little pain?  Okay, even a lot of pain some days, still probably doesn't compare with his...and his days are numbered barring a miracle.  Puts all things into perspective!
I really hope you are one of the lucky ones who won't get much worse!   

[Blue Kat]

Mac, another way to do eyedrops is to lightly (you don't want to tug too hard of course) pull your lower lid outwards so that it forms a small pocket and place the drops in there and then close your eyes for a few seconds to allow the drops to wash over your eyes.  Hope that helps.   

[mac]

Thanks BK!  I'll try that!
Pity the poor Ophty who has to deal with me tomorrow      I don't know who will have a worse day!   

[Karen]

I was diagnosed 4 years ago, but have been dealing with symptoms for 9 years, it first started with just dry gritty eyes at that time my eye doctor did they tear test and
he couldn't believe how dry my eyes were back then but I had no other symptoms so everything was just let go.  I suffered with severe dry eyes for many years, then
it went to my skin where any kind of lotion I used didn't work I always looked like I had alligator skin on my legs I was always told by my doctors don't wash in hot water,
well I never did.
It then went to where I was constantly thirsty, my mouth was so dry, but my doctor kept checking me for diabetes test after test and it was always fine, they never
thought to check for anything else, then fevers started and aching joints, by that time I was 3 years into it and demanded I be seen by a specialists because I had bloodwork
that was coming back abdormal especially white counts were always low.
Finally after going to a rheumy it took 2 years to finally being diagnosed with sjogrens, and since then my dryness is manageable with evoxac, alot of water, mouth sprays,
gum, it's worse at night, I'm always drinking water, swallowing dry foods is difficult for me.
I just had ductal plugs put into my eyes and wish I had them put in years ago, it's made a world of difference, but I still use restasis twice a day.
I've lost my sense of smell and taste, but some days I get weird smells that no one else does.
Everyone is different if their symptoms will get worse, some people stay mild throughout life, others do progress.
Karen

[Carolina]

Interesting topic, Shevonne!

I would say that there isn't any predictable progression of this condition, although it does seem to progress a bit for all of us.

That said, I think it varies so much from person to person that it would be difficult to predict anything except that over time you might find something else going on related to your Sjogren's.

For example:   I finally figured out that the anemia that suddenly afflicted me starting four years ago, is a common co-condition for people with any autoimmune condition, and particularly Sjogren's.

Likewise, when I developed, out of the blue!, urinary tract infections (at age 64, for the FIRST TIME IN MY LIFE) they turned out to be related to the final diagnosis two years later of Interstitial Cystitis, another auto immune condition that about 50% of Sjogren's sufferers develop.

When  I started losing my hearing, and it was mostly on one side (which is unusual for age related hearing loss), and no cause could be found, it took me a long time to realize that the nerve damage causing it is probably related to my Sjogren's syndrome!

Now I have a bunch of weird test results, and some clear symptoms of Peripheral Neuropathy.  Recently besides the numbness and stocking/glove feeling, the sole of my right foot, just the bottom of my heel, burns very badly.  For no apparent reason.  Clearly nerve pain from the PN.

If this sounds like a lot, in a way it is.  But most of the time I am feeling pretty well these days.  Not running any triathalons of course.  My the primary Sjogren's problems, (mouth and eyes) are handled very well with medications.

My bladder pain I manage with exercise, and constant vigilance for the signs of a UTI.  I have my own test strips now, AND a double RX from my doctor for treating a UTI should it start, without waiting for a doctor's appointment OR lab tests to come back.

For the deafness I have hearing aids, which I only wear for certain occasions because one on one I do fine.

For the pain I take Aleve and Omeprazole to avoid stomach irritation from the Aleve.

I also have found that Cymbalta works magic for my pain.  Since I am allergic to all major RX pain meds (developed mostly in the past year), I am delighted that the Cymbalta, Aleve, and exercise help me.  But who knows what the future will bring?

For exhaustion (which afflicts 50-75% of Sjogren's sufferers) I try to rest, and I'm now taking the Alpha Lipoic, L-Carnatine combination recommended here.

For the discomfort I feel from both heat and cold, I try to dress in layers and read the forecasts so I have some idea what might lie ahead.

I have socks to wear in bed, but may take them off and put them on several times a night.

I put lotion on my feet and legs at least twice a day.

My EEG shows that my brain is having constant seizure like events.  Even tho I do NOT have seizures.  but I take an anti seizure medication, because it also helps with the pain of PN, and helps to stabilize my moods, or so I'm told!

I still need a good rheumatologist and neurologist and hope to find both when we move to North Carolina.

You know Shevonne, I just started Physical Therapy for some knee surgery I had two weeks ago, and it is so clear at the center than people just react differently to different life events and different treatments there, as well.  

So I would suggest that you treat yourself kindly, keep an open mind, do every thing possible to help yourself and try to stay in the present as far as predicting things that 'might' happen.

I would say that I am lucky, so far, tho' I have a rather large set of issues, most of them are manageable at this point.  The hallmarks of this condition are fatigue and depression.   My basic nature is optimistic and with the help of meds and support, I manage to stay that way!

Keep us posted, Shevonne!

Carolina

[DragonflyC]

I have definitely picked up more symptoms as the years have gone by.  I can trace my Sjogren's back to childhood aches and pains and to red eyes during my teenage years, so I guess it was fairly slow moving for quite a while; I didn't need treatment until 2008. 

I haven't had any seizures.  I can see why you'd be afraid of them coming back; they must have been so scary.  I haven't heard of anyone here mentioning anything like that, though, so I hope that part of your life has passed. 

Since I've been on medication, my aches and pains have become much more manageable.  My dry eyes and mouth have progressed, and fatigue can hit me even when I'm not in a flare (there was a time when being exhausted let me know it was time for a course of prednisone, but now it's just a bad day). Other than that, I usually do OK.

I think that most--though not all--of us can expect some progression of the disease, but I agree with Carolina that it's nearly impossible to know what will happen for any of us.