Do I really have Sjogrens? What do I do? Do I ask to be referred to a specialist

[rememberingmyblessings]

I'm a newbie as reading this I'm sure it will become all to obvious. For months Ive been complaining about joint pain. I'm always tired but chalked that up to taking my 3 kids here there and everywhere and working 40-50 hrs a week. About a week ago I woke up EXTREMELLLLLYYYYY dizzy to the point it made me vomit. That night I noticed yellow bumps on the cornea of my eyes.  Both eyes - same spots. So I went to my MD. He ran bloodwork to ck my liver because I am a recovering alcoholic but haven't drank in 2 yrs. Also, my blood pressure he explained was extremely low also. He told me that 5 times in 5 minutes time. Well, my bloodwork came back clear. I appeared dehydrated. He had no clue as to the spots on my eyes. I went to my optometrist today. Within 10 minutes he told me I had what is called Sjogrens Syndrome. The spots on my eyes are due to my eyes being so dry they are cracking and that is fatty tissue exposing itself.  I asked if it would ever go away and he said its not likely. Looking at the boards and some of the symptoms... i have a lot of the symptoms and it makes sense. But, can you be diagnosed through an eye exam. He did several test and did the test strip on my eyes as well. I told him about my achy joints. Sometimes it feels like my bones that ache sometimes it feels like the muscles. I have the dry eyes and occasionally a dry mouth. My lips were cracked about 2 weeks ago. I've been nauseated ever since I was sick a week ago.  It comes and goes.  The past week I've had a lot of pain in my ovaries. Feels like cysts rupturing. (I've had lots of cystic problems but haven't been bad the past year until now) My optometrist basically said Ok you have SS, use these eye drops, come back in a month.  That was it.  I have a really stupid question... I'm assuming total dehydration is part of this syndrome??!!  Is that right?  Because that could explain my low bloodpressure which would explain light headed dizziness.  I'm thinking I should go back to my MD and tell him.  Do I need to ask to be referred to a specialist?  What do I do from here?  Could he possibly be wrong.  I have been experiencing a dry throat, dry cough, sometimes burning in my chest, chest pain which I believe is due to my blood pressure dropping.  I obviously have the dry eyes.  Right now I feel like I have sand paper in them and behind my eyes feel extremely strained. I just don't know what to do.  I tried talking to my husband but stupid me called him while The Bachlorette was on... DUH!! He is out of town on business tonight. I dint want to be overly concerned but I DO want to know what is going on with me because I don't feel "good" and I havent for some time. So, please, pass on any help you can because right now I feel like a little fish in a GIANT sea!!  Thanks so much!

[Linda196]

Hello RMB, welcome to Sjogren's World.

Your situation could be something of a "chicken and egg" thing...yes, all of those symptoms could be caused by SjS, but they could also be the result of long term dehydration from any cause, it's a matter of which came first and caused what!

Since you were offered no actual guidance, (if it were me) I'd go back to the GP, make sure the blood tests that were done included ANA, ENA, anti-SSA and SSB, Rheumatoid Factor, and ESR (all of which could lean to an autoimmune diagnosis), and electrolytes, CBC, kidney functions and urine tests (to determine degree of dehydration)

If those tests were done, the next step is to determine the cause of dehydration (even if it is related to SJS) and treat that. it may be as simple as not getting enough fluid, or there may be more to it (best discussed with the doctor). If any of those AI tests show anything, ask for a rheumatologist referral. While an optometrist is a valuable addition to your "medical staff" you may want to see an opthomalogist, because they can order medications like Restasis, and might have other options to offer. As far as lubricating eye drops, we each seem to find the particular one that works best for us, but if you need them more than 4 times a day, get preservative free drops (a pharmacist can help you find them).

Meanwhile you could try to maximize your fluid intake, being very careful not to just flush the system with water (so called free water in large amounts can wash out electrolytes causing a whole new set of problems). Drinks that contain electrolytes can be added to your fluids to protect you (thats why sports drinks were invented) but be cautious with them, many of them contain a lot of sugar! For the dry mouth, sipping fluid and holding it in the mouth works better than gulping it down, because it stays in contact with the dry tissues for a bit.

Congratulations on your ongoing recovery...I'm toasting you with a big glass of cold sports drink!

[Patze]

Hi remeberingmyblessings,

Let me welcome you to the SJS World!  Please peruse the board as there are tons of topics that you might find interesting, and I often come just to read - that way I don't have to ask the rheumy much as he's a quiet type anyway (doesn't give out much info).

I see that Linda beat me to posting and she's given you some great information!  

By chance did the optometrist mention what the Shirmer's test revealed?

Oh, I hate to ask, but can you break up long paragraphs please?  I have dry eye issues (not nearly as bad as yours), and it's a bit hard for me to read a long paragraph sometimes.

Hang in there, and keep us updated, okay?

Take care -

Patze

[jonnell]

Hi remembering my blessings,  My 4 year old daughter Jenna has sjs.  I would recommend getting a referral to a Rhumatologist.  My fiance is also a recovering alcholic 2 years also he hasnt had a drink, kudos to both of you.  I also believe I have sjs but havent had the blood work yet.  I also had a trip to the er for being severely dehydrated and kidney stones I found out on the cat scan that I am full of stones,  and have fibroids in my uterus(im only 39)  I also have the problems with my eyes and severe back pain.  How are you with the heat?  Jenna and I both have issues with the heat and sun,  We get severe headaches and she gets bad leg pain.  I hope you get to feeling better soon.    Hugs and kissess   Jonnell and Jenna

[rememberingmyblessings]

Thanks everybody for the great advice.  It is so much appreciated.  I'm not sure what blood work my doctor pulled.  Do you think I could request my results be faxed to me?  I'm just at a loss.  I'm overwhelmed with it all. 

This morning I have a bad headache and I know this sounds stupid but I put the eye drops in my eyes and now they feel even dryer than they were before I used them. I get very frustrated with doctors because I feel like 9 times out of 10, you get the run around.

The sun does bother my eyes.  I'm constantly squinting.  Seems to strain my eyes more.  I haven't noticed the heat really bothering me.  I live in Alabama and it's just starting to really get warm.  I'm not outside much as I work in an office and I keep my jacket on here.  I get cold easy. 

Thanks for the advice on the fluid intake.  Right now, I'm spitting cotton balls.  I find that gum helps me the best to relieve the dry mouth problem.

I woke up achy this morning.  Last night in bed my ankles started hurting.  This morning it's not a constant pain or ache.  When I was walking my hip area was hurting and then I moved just right and my arm made me shriek!

Oh, I did have a urine test but my doctor didnt shed much light.  Just said my counts were off and said there was a mild trace of a UTI.  I've had LOTS of UTI's.  With the urine test he said I was dehydrated.

Is the Shirmers test that test strip that he put on my eye?  He didn't go into detail about the results.  He did ask my age which from what I've read this is more common in middle age people and up.  I'm 31.

I really appreciate everyones input.  I will be visiting the board often.  I suppose I better work for a little while!!  I'll be checking in periodically.  Im so glad I came across the board last night.  I learned a lot just from scrolling through some of the posts!! 

[rememberingmyblessings]

BTW - I paragraphed out my response and it put it all together    what am I doing wrong??  SORRY ABOUT THAT!!

[rememberingmyblessings]

Ok... so I'm losing my mind.  It is spaced out.  I must have looked at my original post

[Chickpea]

Hi remembering.....

Welcome.  You're going to fit right in here!  You already sound like one of us.

Take care - Chickpea

[rememberingmyblessings]

Thanks! 

[ohiolady]

Hi, and welcome.  I did not read every post but wanted to mention a few things.  Restasis is a prescription for eyes, Salagen or Evoxac is a prescription for dry mouth.  And, I wonder if the pain in your chest is acid reflux.  I RARELY had indigestion until Sjogrens.  Controlling your symptoms goes a long way in helping with your quality of life.  

Anna

[Redetha1]

Hello and welcome.  I live in Alabama also, Mobile.  It is hot as blue blazes here.  In the 90's every day.  My optomologist suggested Flaxseed oil--It is over the counter, not RX.  I have been using it for about one year.  When I went back to see him yesterday for my yearly checkup, he stated that my eyes had improved some and asked me if I were still taking the flaxseed oil caps.  I told him yes.  Unless I have problems I do not go back until next year.  Do you live near me?  Good luck and keep posting.  Hugs, Redetha

[rememberingmyblessings]

Hi Redetha...  I live in between Bham and Hunstville.  I'm in the Gadsden area so unfortunately we are several miles apart. Thanks for the information - I will try those.  Anybody know of anything over the counter to loosen up the joints?  I feel like the Tin Man.... someone oil me, PLEASEEEEEE   

[navydad]

Read once in my SS book a line that said,, if a Optometrist says you have SS,, you dont have it,, So with that said,, get thee to a rheummy, and get ahold of the test your GP ran,, you might have to go get them yourself, I dont think there to keen on faxing stuff like that,, but doctors dont seem to mind mine getting sent from office to office for all there to read,,, ?
  Ask around about Rheummys,, there are good ones that will listen and those that are hgolier then though that make you feel like a idiot,,
  If I lived in Alabama,, I would have dropped dead by now,, the heat up here isnt even hot and I dont dare venture to far from the shade even on mildy warm days,, I love the overcast rainy days,,

[Crabcakes]

  My optomologist suggested Flaxseed oil--It is over the counter, not RX.  I have been using it for about one year.  When I went back to see him yesterday for my yearly checkup, he stated that my eyes had improved some and asked me if I were still taking the flaxseed oil caps.  I told him yes.  Unless I have problems I do not go back until next year.  Do you live near me?  Good luck and keep posting.  Hugs, Redetha

I've been taking Fish/Flax/Borage Oil combo for two years, daily, and I can tell whn I forget. It helps so much. It helps dry skin, helps the heart, and the joints. It may take a week or so for some to notice. I started it because I was silly enough to believe someone who said it would help my blood pressure. It did NOTHING for the BP but within a few hours, my shoulder and wrist arthritis was greatly relieved. Not gone, but made bearable.

Now that my shoudler pain is almsot unbearable from Sjogren's the past few weeks, I wonder how bad it would be without the FFB capsules. I swear by them, and not willing to stop and see!