Hello - I'm Kate

[KateMa]

Hello Sjogrens world!

I don't know what's going on. But I am starting to think it must be Sjogrens. Long term dry eye turned into SEVERE dry eye, and suddenly my mouth seems dry all the time too. I have Celiac and recently I had two bouts of norovirus (or something similar) and I cheated a few times on my gluten free diet. Maybe it was the two bouts with NORO... Anyway, suddenly my eyes are so dry that everything is blurry all the time, even right after I put in drops, my eye drop use has gone from twice a day to all day. My optometrist put me on steroid drops and said I have severe severe dry eyes that are developing ulcers. (eye ulcers?) The drops haven't helped for 3 weeks. I have an appt with a ophthalmologist in September to further look into this. I guess I'll have to take stronger steroid drops? I don't know but not being able to see clearly is really freaking me out.

Last blood test was negative for autoimmune stuff, but that was before this crazy "flare up" or whatever it is. I'm scared to go to a doctor because he thinks I'm a complainer because he's a uncurious person and probably a sexist the way he pats me on the head. But I think all GPs seem to think I'm a chore. I just want to know what's wrong, even if there's no cure.
Symptoms:
-Extreme Dry Eyes
- dry mouth and throat
- headaches
- aches and pains
- fatigue
- Raynauds
- Celiac
- lots of GI symptoms (regularly burping up food, and liquid often with no stomach acid taste) Also constantly feeling bloated.
- iron-deficiency (being treated with IV iron)
- dry skin, some acne (still)
- chapped lips
- a touch of the old depression/anxiety/BFRB with a big ol' scoop of ADHD
(41 yrs old)

ANYWAY, grrrr, I feel helpless.

[araminta]

Hello Kate and welcome!   Sorry you are feeling so fed up (does your doctor really pat you on the head??!)

I am older than you but otherwise in almost exactly the same position with many of the same symptoms.   My bloods were all negative, Schirmer test was normal, neither my GP nor the rheumatologist thought I had Sjogrens, but I am pretty sure I have.   I too have an ophthalmology appointment in September and wish it was sooner.

If your GP is so dismissive would it be possible for you to find another one?   You do need to be quite assertive in this situation.   Because Sjogrens is dealt with by so many different specialities it often takes a long time to get a diagnosis, and in the meantime the best thing you can do is find ways to alleviate some of the symptoms.   I have tried lots of different eye drops and gels and am still in the throes of experimenting with various supplements.   One thing I've found quite helpful is a drop or two of castor oil (must be pure organic) in my eyes at bedtime.   I also found diluted tea tree oil effective for blepharitis.   If you keep searching this forum I think you will find a lot of helpful suggestions.

You are not helpless unless you give up trying!   

[Jasper]

Welcome to the forum.

The problem that seems to be the most urgent to treat is your dry eyes, eye (corneal) ulcerations, and vision problems. It is actually extremely urgent that you see an opthamologist ASAP. If you have corneal ulcerations, you should be able to get in to see an opthamologist on an emergency basis. You can have permanent eye damage from corneal ulcerations. In fact, the ulcer can perforate and cause even more damage. I am not trying to scare you, but you really need to see an opthamologist before September. You need to see one ASAP, on an emergency basis if you do not want damage to your cornea.

I would suggest calling the opthamologist that you have an appt. with and letting him/her know that you have ulcerations and blurred vision. He/she should get you in for an appt. within a day. If he/she cannot see you on an emergency basis then call around and find an opthamologist who can see you on an emergency basis. Be sure they know how dry your eyes are also.

They will probably put you on Lotomax or some other prescription steroid eye drop for a 2-3 weeks. After you are seen for the corneal ulcerations and that is stabilized, at some point the opthamologist will probably put you on Restasis eye drops.

Restais eye drops (Cyclosporin eye drops) are thought to act as a partial immunomodulator with anti-inflammatory effects when administered topically to the eye. Topical application to the eye reduces cell-mediated inflammatory responses associated with inflammatory ocular surface diseases. It also increases tear production in some people.

The important thing is to get in to see an opthamologist ASAP, before permanent damage is done.

If I was you, I would not put anything else in your eyes (other than what the optometrist ordered already) until you see the opthamologist. You do not know how much damage you have and you do not want to potentially add to it by experimenting with eye drops on your own.


I agree that getting a new primary care doctor would be a good idea. If your PCP is uninterested, condescending, dismissive, sexist, or anything else that is undesirable in a PCP, then getting a new, competent, and caring PCP is very important.  We need doctors who are well educated in our disease, competent, and caring.

I would also suggest seeing a Rheumatologist who is affiliated with a large teaching medical facility or university affiliated medical center. A Rheumatologist at a large teaching facility should be more current on Sjogren's Disease, diagnosis, treatment, etc.

Up to 50% of people with Sjogren;s have negative blood work so having negative blood work does not mean you do not have Sjogren's. If you see a good Rheumatologist the/she can order other testing to determine what is wrong with you. He/she will also most likely order a lip biopsy  as a further diagnostic test for Sjogren's.

Best of luck going forward.

[warmwaters]

Ditto to what Jasper said.

Plus... you should see a rheumatologist.

[KateMa]

Thanks guys! (BTW My Optometrist said the Schemer is "outdated" but that if she did it I would have a strong positive.) Regarding the ulcers:  I am fuelled by your support and information. THANK YOU.

[Jasper]

Kate .....

I really do not want to scare you but the corneal ulcers can be extremely serious. I have 3 friends with Sjogren's who had severe damage from the corneal problems and ulcerations caused by dry eye. One has corneal melt. One has warped corneas (and thus has distorted vision and can no longer drive because she sees 3 of everything). And one has a corneal ulcer that ate all the way through the cornea. She now has a permanent contact lens to cover that area.

So, while I don't mean to sound alarmist, I know how serious this can be, and that is why I am so strongly urging you to be seen by an Opthamologist ASAP, on an emergency basis. I don't want you to have the problems that my 3 friends have.

[susanep]

Welcome Kate.

I have just been seeing a optometrist, but he does all the tests, and looks for eye disease, knows I am diabetic and on Plaquenil. He is the one who put me on Restasis, and advised me also to use Systane. He put in the Punctal Plugs, but I still have dry eyes. He seems very knowledgeable, but it still may be I need to see a Ophthalmologist.

I hope you get the answers you know. We all know how that is in always searching for more answers.

susanep

[JoanElizabeth]

Almost all if not all of your symptoms do seem like than can be caused by Sjogren's. My rheumy said the incidence of Celiac in SS is much higher than the general population (I have Celiac as well). A lot of you GI stuff sounds like GERD and possibly some gastroparesis/dismotility.

I second much of what Jasper said. If you have a PPO insurance plan you can probably see a rheumatologist without a referral if your PCP is blowing you off. However I also suggest finding a new PCP

[KateMa]

Now I have a swollen salivary gland. I guess this is my first serious flare up. My body is just proving every symptom - check check check. Ugh... I tried to get through to the ophthalmologist today. I'll make an appt with my PCP tomorrow. Hopefully I won't have any problem getting to see a rheumatologist. It's time these doctors start taking me seriously. Ill see my optometrist tomorrow and she'll say there's very little improvement and... yeah, I guess she wants to put a stronger steroid in my eyes. BLURP BLORP BLEEP  -- yup -- life!

[alwaysimproving]

Kate,

I am sorry that you are experiencing this unexpected and challenging set of symptoms.
I know that these symptoms can be very scary when you start to think about future implications and if the pain will last forever.

If we may ask you a few questions :
--- When did these symptoms start?
--- How long have you had the dry mouth?
--- Do you have a family history of any other systemic illnesses?

The first few steps to take now:
1. Recognize that it is very normal to feel depressed and anxious about this, but the depression and anxiety ARE the worst symptoms at the moment and require the most immediate attention. Please talk to your friends and family about how you are feeling and your fears.

2. Avoid researching Sjogren's on the internet. It will not help you think that you have a different condition or make you feel any better. Remember: MILD cases of any disease get much less attention (mild cases are always grossly missed or under-reported)than SEVERE cases.

3. Schedule an appointment for Bloodwork and Rheumatology in advance. Insist on seeing a rheumatologist soon.

4. Understand that Sjogren's has a very wide presentation and even if you do have the condition, which I know you would rather not, it will be manageable. Is there a cure for it now? No. But there may be one within the next decade with increased research in immunology, stem cell therapies, and genetic therapies.
Can you REDUCE the symptoms to where you don't feel miserable daily? YES. This last part is important whether or not you have Sjogren's.

[SunshineDaydream]

Welcome to the forum, Kate. I agree with prior posters who said see an ophthalmologist as soon as possible so you can avoid permanent eye and vision damage. With those symptoms, a doctor would probably agree to see you well before September - hopefully within the same day or next day of your call.

[KateMa]

The optometrist said not to worry, keep going with the drops and she'd call the opthamologist and try to get an earlier appointment (like sh'e doing me a favour). I'm not feeling too hopeful right now. The opthamoligist only answers her phone first thing in the morning, I work, I already missed a day of work this week because of IV iron. We've tried to get through to my PCP.

I'm scared - and right now, honestly kinda beat down by the physical symptoms. and frustration. Do I go to emergency? Do I miss work to go to a walk in doctor tomorrow?

I haven't read the newer comments, I have twins asking for attention so I'm popping in and then out again.

OH gosh:

--- When did these symptoms start? dry mouth just started when the eyes went from dry to REALLY DRY 3 weeks ago. lump in the top back of my mouth started yesterday. Fatigue-- 4 years My eyes have been "dry" like causing problems with contacts and needing drops since I was 15 and I got contacts.
--- How long have you had the dry mouth? (noticeably? 3 weeks but my voice has changed (my friends say) so it may have been there but below the radar for a long time. My throat seems always sore, (months?)  but at some points in the day I have saliva.
--- Do you have a family history of any other systemic illnesses? MY mom was always in pain and tired but fought through valiantly and without seeing doctors like the martyr she is haha. mom and dad both have thyroid issues (high + low) mom also has a history of cystitis as do I

Thanks for the advice "always improving" I am usually positive. I'm just having a tough day:)

I am currently being treated for anxiety and depression and feel OK - just a rough day - not in deep depression - which is good. I just hate dealing with doctors!!