Rant: I am too young to have this darn disease

[alwaysimproving]

I'm 21. There is of course no good time for illness to strike, but I feel as though many of you have had at least somewhat of a good life and been able to establish your career and build a family before you began to experience symptoms.

I had been hopeful that I do not have Sjogren's because of my age, gender (M), negative serology, and only had dry mouth....my Rheumatologist was confident that it was not sjogren's.  Well I recently began to develop dry eyes, and not only is that more painful than the dry mouth (which I can ignore with pilocarpine).... It seems to confirm sjogren's. Of course I'll have to check with my Rheumatologist and Opthamologist.

I feel so frustrated because I've been a very hard working student in college and have overcome other non-reactive adversities. I had expected to enjoy this final year before grad school like my peers. Having to deal with the painful dry mouth and FEAR of worsening conditions (and while my dry mouth did not worsen each day like I thought it might, but maybe it still will... I still got the dry eyes) is not what I had been prepared for.

I know I'm not thinking about this in a healthy way. I know there are many people with worse conditions - I have friends with SLE, Juvenile RA, and physical disabilities - that are still happy. I don't have a great family support system and I know that's part of what makes this difficult to deal with. I want to be resilient and I want to be able to adapt. But right now I just feel hopeless...

So to get hope maybe a few questions :
Are the majority of sjogren's patients in good control of their symptoms?
Am I scaring myself with the symptoms of all the people on this forum - might they only represent really progressed disorders?
For the dry eyes are restasis effective?
Have there been people who have had large scale remission?
Are there any youth I can get in touch with?
Are symptoms relatively stable after a point?

Is there good research being done on sjogren's?
Is there hope for this condition? What inspires you?

Just  a few questions for now... Thanks for your help

[warmwaters]

Sorry to hear you may have to deal with an autoimmune disease at your age. 

One thing you should know about this forum is the folks who stick with the forum over the years generally have more severe symptoms. It makes sense that folks who come and ask a few questions, and can get back to their lives without a lot of problems usually don't continue to spend a lot of time here. So you shouldn't think of some of the things here as "the normal case".

There are some younger people here on the forum who might have better input than some of us who didn't get it til later. Might want to start a new topic with a title asking about young people with sjogren's.

The actual experience of Sjogren's varies wildly. Some folks have mild symptoms that are a nuisances. Some people do well for a while, and only have occasional flare ups of symptoms. Some people are in a lot of pain, or fatigue, or get additional problems like neuropathy.  Some people get reasonable results with meds, or changes to diet, etc, while others have poor results.  It's a very individual thing.  I know that sounds discouraging, so let me tell you some good news.

There's a lot more research and medicine development going on now than there was when I was diagnosed 7 years ago. I see a doctor who continues to give me hope because there may be some treatments available in the relatively near future (5 years) that may make a big difference. (I should note I have some pretty bad issues.)  See http://sjogrens.org  for information on how they are pushing for research. If you like reading medical info, you can also look at research articles.

There are some resources listed in other sections, here. https://sjogrensworld.org/index.php.

One other thought - it's totally normal to be upset by having your life changed by something you didn't expect. If you got hit by a car, and had some permanent injury, you'd be upset, and everyone would understand. And you'd figure out what you could and couldn't do, and work around the things you couldn't. Don't beat yourself up because someone may have a worse problem than you - your problems are still very real. (BTW, that is not just health related.)   

As you deal with doctors, try to get their sense of the future for you. Some of them are better at assessing that than others. Hang on to the doctors with whom  can you can have an honest conversation.

I'm sure more folks will chime in.

[fi]

Hi!! I got told I had SS at about 27, a bit older than you but still, I was frightened when I googled etc. BUt here's the advice Id give....you said you only had a dry mouth, honestly that may be all you ever get....Ive found that Ive had the odd 'flare' but really it hasn't held me back at all (so far) I'm 34 now, married with three beautiful sons and I have a good job (high school teacher in a top private school) dont worry about it, you could live the rest of your life and never get worse.......i've found my 'flares' have been connected to hormone changes (child birth and breast feeding) but as a man thats in your favour, also even if thins do get worse, they get better.....A lot of more elderly people on here where great when I had similar concerns to you, just get on with it, its really not the end of the world.......and I honestly the vast majority of folk with the live a really good life, heard of Vinus Williums.....she's living her dream I think you'll agree.....life is good, even with this, don't let yourself get down, stay happy!! :-D but a good old rant can feel great!!!!

[fi]

OH and PS In terms of remission, I go for literally YEARS and hardly notice it!! And even when my eyes are bad (its usually my eyes) so long as I follow a strict eye drop routine Im OK and its totally manageable.....Im sensing you might have a bit of health anxiety? I recognise this as I have had this VERY bad in the past...if that's the case I would give 2 pieces of advice 1. Dr. google is your enemy! 2. dont let fear be crippling when your illness isnt....... :-D

[quietdynamics]

Setting life goals.. and then being thrown a curve ball, uninvited, is to say the least daunting at any age.
"I had plans and life got in the way".

-So to get hope maybe a few questions :
-Are the majority of sjogren's patients in good control of their symptoms?
Sjogrens can present along a spectrum of symptoms. Some seropositive may not present any symptoms (ever), others Sicca (exocrine gland), some extraglandular manifestations (organs) <---- and then there is any combination.

-Am I scaring myself with the symptoms of all the people on this forum - might they only represent really progressed disorders?
I would be to the right of the spectrum.
Knowledge can be very powerful, it can help one be pro-active.. or can paralyze one with "What ifs". Only you can chose or know your personal leanings regarding how you handle 'vetted' information.

-For the dry eyes are restasis effective? 
As a college student, likely you are using computers and reading a great deal of time. General pop. blinks less when doing this tasks. There are some OTC aids and lifestyle/environment (humidity tweaks that may help your eyes. I have gone so far as to use a very tiny bit of eye gel during the day.. and take Omegas. Hydration. I do not use Restasis.
The Optho will exam for SJS and/or other causes.

-Have there been people who have had large scale remission?
-Are symptoms relatively stable after a point? 
We are all unique, some as with SLE have periods of remission, depends upon symptoms and if there is an overlapping condition.

-Is there good research being done on sjogren's?
Research in autoimmune disease often overlaps in possible application, investigation and builds a strong foundation for progress in understanding. Institutional data collection (private is for profit) and all the newer disciplines, etc as well as pushing forward for better earlier diagnostics. There is the global work being done, for example, by the The Sjogren's International Collaborative Clinical Alliance (SICCA).
So a great deal is being done. But, if you narrow a search to only "Sjogren's" you will miss a great deal.

-Is there hope for this condition? What inspires you?
There is always ~hope~ .
Inspiration: I worked with special ed and special needs students. Some never made it to their teens, their twenties. I have a relative who is a paraplegic... so I advocate for myself (my symptoms for quality of life) and am grateful for small blessings. There are things I am realistically not going to be able to do now.. so I watch and enjoy seeing others do them. Cheer them on.

*I was my PC doctors 1st SJS patient.. then she got a 5 year old child.

I hope you use the search (upper right) for at-home remedies and articles for "dry" relief.
Ophthalmologist and Dentist may help provide more pieces for the Rheum. There are other conditions that cause Dry eyes.. and it would be a travesty to not cast the net wider.

[trc1962]

I was 42 when I first had symptoms and once I been on Imuran for about 3 months I went into remission and for the most part have lived a very normal life. I have had short bouts of needed a bit of prednisone and a little more rest but overall a normal life. I am in a major flare right now, but because of the past I have great hope that once again I will get over this flare and get back to living normal agin. I feel that you are so young but I do think the knowledge of the disorder will only grow and help all of us.

[Wal]

I'm sorry to hear that you're struggling and I understand. I've had a variety of health issues since age 28 which I now attribute to sjogrens or some autoimmune disorder. The dry mouth and eyes started this year at age 36 for me. Initiallly (at 28) I started out with crazy nerve sensory issues. They were awful and at times extremely painful for one year. It subsided and then I had it off and on mildly for the next 8 years. During that time I also had a lengthy bout of laryngeal reflux and chronic candida infections. Then at 36 this January I developed the dry mouth and eyes. It's very frustrating all that I'm going through and haven't even hit menopause yet! I often have a pity party for myself that I haven't been healthier. Needless to say this doesn't help. One thing I want to point out though is that my symptoms have come and gone waxed and waned over the years. Even since January, my dry mouth and eyes have been better at times and awful at others. All of our bodies are different and respond to treatments and stimuli in various ways. Hang in there, things really can change in a minute, and not always for the worse. I would try to learn all about how your body works...keep a diary or mental note of triggers etc.

[SabbraCadabra]

The earliest I can remember having my symptoms was around 5 years old, so 21 doesn't sound so bad...heck, I don't even know what it feels like to be healthy, so I have no basis for comparison when it comes to what's normal and what isn't. I'm always surprised to learn that things like sleeping with a glass of water next to the bed aren't normal.

As far as "remission", well I find that my symptoms come and go...they get much worse when I'm under stress, and unfortunately, since starting a full time job (plus constant overtime), I'm pretty stressed out almost every day =)

[JoanElizabeth]

I am 20 and also starting my senior year of college. However even though I was only recently diagnosed I am at a very different stage of acceptance as I have had symptoms since age 10, my first surgery due to it at 16, and have been in and out of the hospital throughout all of college.

I will say everyone has their challenges even if it does not always seem that way. I was recently talking to a doctor about struggling to keep my head above water while all my peers seem to be thriving. Her reply was that everyone else probably thinks I am thriving with the added challenges of my health and they may feel the same way about just surviving but I would never know. Just a little perspective on comparing yourself to others.

What I have found is forums generally contain the sickest patients since the rest are busy living their lives. Based on what I have read you have a pretty good chance of not being greatly affect aside from sicca syndrome. Plus everyday AI diseases are being researched we are closer to more treatment options and hopefully a cure.

[gurs]

I was diagnosed when I was 12 or 13 years old..now Im 52. Yes, this disease has taken a toll on me over the years, and im convinced hormones play a huge roll. I started on plaquenil when I was around 20, and it really seem to help with the dryness etc I was able to live somewhat of a normal life. It also seem to prevent the disease from getting worse. Would recommend having ALL your hormones checked and balanced.

Each one of us is different. You may just have some fatigue, dry eyes, mouth, etc, but can still live a full life.
Try not to stress, because this will just make your symptoms worse. No one knows what the future holds.one day at a time!

Gursie