Do symptoms just disappear for a while?!!

[Jaws]

Hi Everyone

Greetings!  Aren't these lighter evenings a bonus?  Can't wait for Summer.

Update and question:

I had test results about a week ago, and everything was negative.  I've managed to get a referral anyway, on the basis of symptoms and family history (lots of auto immune disease and connective tissue disorders).

My question is this...does anyone find that their symptoms disappear for a while?  I've had the dry eye/mouth/swollen gland symptoms since Christmas, along with other symptoms such as the terrible fatigue and joint pain.  The fatigue and joint pain have been going on for a few years - it comes and goes, and I had put it down to other conditions that I suffer from (EDS and CFS) until the eyes/mouth/gland started.

I got as far as buying more 'gloopy' eye stuff last week, but didn't have to use it in the end, as the symptoms just seemed to stop in their tracks for some reason.  I still have the terrible fatigue, but because I have taken some time off the last few days, have been lucky enough to have taken naps in the afternoon (I then sleep again all night!)

Do any of you get phases like this - is it possible for dry eyes/mouth to just disappear like that and gland swelling to go down?  It lasted about 2 months in all.

I'm not sure about the cognitive side of things at the moment, as taking time off work has reduced stress considerably, and I have not been doing anything especially challenging - I've given my poor brain a rest!

I am having to look closely while I type this, and have found a few mistakes, but it is first thing in the morning, and I'm not quite awake yet!

Anyway, it would be very helpful if someone has an idea about whether I could still have Sjogren's, whether it can just go into remission like that (like Lupus can) and if so for how long.  Does a diagnosis mean that the eye symptoms have to be a permanent feature?

Thanks!

[kim31072]

Most people have periods of symptom being active and then (hopefully)returning to a somewhat dormant phase..this is commonly called a "flare"..which basically means you notice an increase or more activity out of the symptoms you first presented with and commonly add new ones.

Flares are very common and are completely different for everyone..the have no set time frame and wax and wane..some may get a flare a year others six or eight..and others stay in one for a year or more.It is part of what makes diagnosis(if you have nothing going on)or relief(if you catch no break)so challenging to both patient and dr.

You will learn to listen to your body and that will usually help keep them to a minimum and hopefully of a short duration.

take care

kim

[Jaws]

Thanks Kim.

It certainly is confusing, especially as both the Chronic Fatigue Syndrome and the Ehlers Danlos that I suffer from both seem to flare and abate too!  It's hard to work out what is going on here. I just felt that the eyes, mouth and glands were worth investigating, as they are so specific to Sjs. 

I hope the Lupus clinic that I am hopefully going to will be able to carry out more specific tests than (the very extensive) ones that my GP has already done (that are all negative!)

The trouble is that now I am feeling better, it is difficult to remember how crap I felt, and I worry that I will not be taken seriously at the referral!

Thanks again.

[pudmott]

In one word Jaws ..yes

in a few more words we can sometimes go into a kind of remission. Im there at the moment. i tend to go into a remission like state in Summer which it is for me now and in winter its flare time

I have saliva now and eyes are ok but when i get sick no saliva dry eyes and big parotids as well as all the usual stuff

so basically yes it can come and go

pud

[Linda196]

I'm not sure about the cognitive side of things at the moment, as taking time off work has reduced stress considerably, and I have not been doing anything especially challenging - I've given my poor brain a rest!

That may also be having an effect on the physical symptoms...it's like the butterfly effect, change one thing and everything responds.

[Jaws]

Thanks Pud and Linda

Pud - that is interesting.  My eyes/mouth/gland all started together, and all disappeared together. 

Linda - so true!  The negative blood tests may have immediately reduced the panic, so the body calmed down in response to that.  The rest has helped with the mental side of things (although not the fatigue).  I just find it very 'odd', as the symptoms were very real (and were there for 2 months, so I doubt it was some weird virus).

One more question....you mention tears Pud.  When I went to the doc with the symptoms, and he asked about my mood, tears welled up in my eyes.  If they were Sjogren's type dry, would I be able to do that?!  Are the moisture producing glands that are attacked in sjs, involved in tear production?  I am a bit confused on this point.  Although my eyes were very very dry (sticking to eyelids some nights!) I am sure that I could have cried buckets if pushed!

Thanks again.

[lesleyjoy]

Yes they can...some people have periods of time where they are relatively symptoms-free. For many years I had this pattern, then some mild symptoms decided to stick around for good  I've noticed that everyone's so different in the way autoimmune conditions affect them! Probably due to genetics and immune system workings.

Cheers Lesley (NZ)

[Carrottop50]

For me I have been dx for 20 years now....but I had swollen glands and that is what my GP went by to start the dx for me.  Most all the test were negative at first but my dr still dx me with Sjogrens and some other drs disagreed for a very long time but now everyone knows I have it.  I just tried to stay with drs that agreed with my GP so I would get the best of care.... But when she moved away I had a terrible time finding a good dr ... I finally found one that was wonderful and had him for about 5 years and he decided to move on to a different style of practice... so now I am back to looking again.....

I really don't know what my blood work will show when I see a new rhuemy next week.... but have been in major flare... eyes are so dry the worse they have ever been... have blurred vision and seeing double... but to let you know I have been able to cry all of these 20 years and even as dry as they are right now I can still cry.

My mouth is so dry at night I wake up at least about 5 times a night.... no moisture in my mouth what so ever when I wake up at night.... never been this bad before...never... usually I have only been the type to have to carry water around with me most of the day but was able to get by at night with maybe one slip of water.   I even went to drug store to get something to help with the dry mouth for the first time in my life (had to have something for dry eyes off and on for years now)

So to answer your question there have been times that you will have flare and I guess it all depends on how your body will handle the flares to how long they last and how bad they might be.  through the years flares have mostly come and gone for me so I am hoping the same for this flare.  I have been told through the years keep a journal as to how you feel during your flares so if you are not able to get into see the dr you still will know how long it lasted and what you felt like.  I have not done this but at this time in my life I wish I would of because maybe I would have more understanding why I was feeling the way I was and what might of been going on in my life that caused flares and tons of other things I could of learned from a journal... Plus I am thinking maybe my daughter might have sjogrens.... she is sort of following my foot path with lots of medical things so maybe the journal would be a great help to her or maybe even one of my grandkids.  I am on disability since 1999 and there has been some times that I think to myself....why do I not go back to work well then in about a month I totally remember just why I am on disability and as the years go on I am sure now I could not ever return to work...

I have started a journal in the last month... a little late but I am sure it will be helpful for me at a later date.  I also have a list of things that have been going on in the last few months that I need to chat with my new Rheumy about but I am sure that I will not be able to address all the things in one meeting but at least I won't forget everything and go into his office and tell him I am fine....because that is just about what I ususally do... I also take my hubby now and when I start to say I am doing ok ...he will jump in and say what about this and what about that....which is a big help.

Good luck finding out more about what is going on with your body.  I sure don't wish Sjogrens on any one but if one has it they need to know and learn how to take good care of themselves. 

Carrottop50

[Jaws]

Hi Carrottop

I just wanted to say a big THANK YOU for taking the time and trouble to write such a detailed reply.  It has been really helpful.

I know what you mean about the employment thing - I have been planning a career change (to something less stressful, but being self employed so that I can set my own pace to some extent).  However, the symptoms fo the last 2 months have been so debilitating that it has left me feeling very insecure - how can I help others when I am feeling so low myself?!  It is something that I hope does not return for a long time.  From what you all say, the symptoms just reappear when you least expect them!

Let's hope that all the medical research going on brings us some answers and new treatments in the coming years.  There seems to be very fast progress in some areas of the medical profession, so you never know.  We have to try to stay positive.

Hearing what you've all had to say above makes me feel slightly more confident that I will not be dismissed out of hand by the Lupus clinic (who tell me that they have seen lots of Sjogren's cases).  With my family history and symptoms I feel reasonably confident that I was right to encourage my GP to refer me despite bloods being negative.  There must be at least a 50% chance of having Sjs I would have thought.  Anyway, we shall see!

Thanks again Carrottop!

Jaws