New Member Introduction

[wyldotter]

Hi. My name is Ellen. I am 60 year's old. I am not diagnosed as having Sjogren's yet. The symptoms I have started at the beginning of August. I went for the antibody test two weeks ago and should be getting the results back soon. I do understand that there are a lot of "false negatives" on the test.

I'm still able to work. My fatigue is not debilitating, although I am having to delegate or give up on non-work commitments.

I have dry eyes with light sensitivity. (Driving long distances is definitely less fun than it used to be.) I have dry mouth, a tender tongue, and very sore lips inside and out. My tongue does not pronounce things properly... like it's become wooden (more so some times than others). GERD. Fatigue. I have had a very "minor" case of arthritis for years. It is getting worse now.

My eye doctor (optometrist) is the one that pointed me towards Sjogren's. My PCP ordered the test. If it comes back negative, I'll need to decide how to approach him for further testing.

It is possible I don't have it. Still, it's the only illness I have found that explains all of the symptoms that showed up in August.

I'm using over the counter eye and mouth treatments. I'm doing food intolerance testing. I'm trying to get a lot more rest and I've cut way back on the stressors that I had.

I am glad to have found this place, though it is scary to see just how awful this disease can be. Still, finding people who have the same symptoms that I have been feeling for some time is a real benefit.

I look forward to getting to know you.

Ellen

[Scottietottie]

Hi Ellen 

Welcome to Sjogren's World.

I'm sorry you had to find us - but we're worth finding!

I hope you get your test results back soon. The main thing is, is to get a doctor to treat your symptoms - whatever the test results say.

I hope you find the site helpful.

Take care - Scottie 

[Joe S.]

Welcome. Dry eyes, nose, mouth, skin and bottom are the typical criteria that I used to get a DX.

[Navigator]

Hi

You do not need a diagnosis of SJS in order to get medical relief.  If the OTC options you are taking are not working and your ophthalmologist diagnoses dry eyes he/she can prescribe Restasis which is a topical anti inflammatory which many here find very helpful. Dry eyes can cause complications down the line and are best treated.  Once eye drops gets overly frequent it is time to have that discussion.    Same with dry mouth ....there are two options for that which Evoxac and Salagen that I know of which can be prescribed to stimulate saliva.

The choice is not between a positive diagnosis and treatment or bust. 

[wyldotter]

Thank you so much!

Ellen

[Carolina]

Ellen, so GLAD you found us.  My Sjogren's-lilke Symptoms started EXACTLY when I was 60.  I found the dry eyes when  my contacts stuck to my corneas and caused abrasions.

So here are some helpful things until you get medications, which you can get whether or not an actual diagnosis is confirmed.  We use the tests we HAVE, not the tests we need.

1)  Humidifier in your bedroom, which will help your eyes, your mouth and your skin.

2)  Lotions for your body, which will probably be dry.

3)  Work with your dentist as dry mouth can cause tooth and gum problems.  Less saliva means less of the healthy bacteria you need for a healthy mouth (yeah, go figure).

4) Eye drops, eye sprays for your eyes.  Rest your eyes periodically when using your computer.

5) For dry mouth, fluids with the 3S = Sip, Swish, Swallow

6) As Joe S. would say, remember to breathe, breathe breathe.

7) Sticky Post nasal drip? (feels like glue stuck coming down from the back of your nose).  Use generic Mucinex (Guaifenesin) at night.  I also take it in the morning.  It thins the mucus.  Remember everything in our bodies is drying out, even our mucus.

Dry throat?  Small bites, taken with fluid.

9) Arthritis Pain:  Cymbalta is on label for arthritis pain, and depression.

10) Depression?:  Remember Autoimmune conditions involve Inflammation.  Inflammation causes: Pain, Fatigue, Depression.   So get some help with depression, seriously.

11) Crusty eyelids?  Probably blepharitis, which goes with dry eye. Talk to your ophthalmologist and use a warm washcloth in the morning to gently massage your eyelids to help with the crust and the blepharitis.

I could go and on.  But you are HERE now, and we welcome you, and you will get lots of help.  For fatigue, you will have to pace yourself and deal with all of the adjustments that come with a chronic condition.

Hugs,  Elaine

[Kathy57]

Ellen,

Welcome!  I have seronegative Sjogren's.  I was lucky enough to find a wonderful, kind, and experienced Rheumatologist who realizes that too many of us are seronegative, but in desperate need of treatment.

I feel so much better after appropriate treatment.  I take generic Evoxac and Plaquinil which has changed the quality of my life for the better.

You have found the best place here.  These people talked and walked me through my darkest hours!  Great advice and good friendship here😃👌.

Welcome again,

Kathy

[warmwaters]

Welcome.  And don't let our conversations scare you.  Sjogren's runs a gamut of outcomes. Those of us who spend a lot of time here tend to be on the further end of the spectrum.  People who find solutions and lead a fairly normal life tend to spend less time on a support group.

So don't take our situations as the only ways things can go.   


Best

Warmwaters (one of my favorite therapies - for any problem !)

[wyldotter]

Thank you all so much.

I just sent a long list of my symptoms to my PCP last night and asked if it would be good for me to see a Rheumatologist. Hoping he responds positively. Insurance requires I get a referral.

I am getting so much information on symptoms that I have had for a long time that also fit under Sjogren's and just wouldn't "heal" with standard treatment.

I've been on antidepressants for years, but recently had the experience of just how debilitating long term, low grade, increasing pain can be. I used to take Naproxen. One night recently when I was lying in bed hurting and feeling like I was going to have to retire and spend all day lying in bed, I remembered I still had some that was not expired. Took a pill before I went to sleep. Woke up the next morning and my severe inability to cope was mostly gone. Sure, I still have pains here and there, but I feel like I can deal with getting through this process of trying various treatments until I can find something that helps.

I am counting my spoons and changing my lifestyle to spend that energy on what is really important to me. Retirement is still an option if I can't both work and do my highest priorities at the same time. Not giving up my fun to struggle away at work all day and feel deprived.

Anyway, thanks again. Hearing people's journeys and outcomes is so helpful. Just to know there are people "out there" who have experienced this kind of situation and being able to get support.

Ellen

[irish]

Welcome to this forum. We have a lot of people here with Sjogrens diagnosed and a lot with no diagnosis  yet. Many people have Sjogrens plus other autoimmune diseases. The autoimmune diseases sort of run in a pack.

Many people have thyroid disease plus Hashimotos which is autoimmune thyroid disease. Also, be aware that depression goes with autoimmune disease and it seems that people with Sjogrens seem to have depression plus a lot of anxiety disorders. I have had depression for many, many years and, thankfully, the newer drugs have managed my depression very well. I am of the opinion that depression is caused by the decrease in the chemicals in the brain caused by Sjogrens. The brain secretes the chemicals that help maintain our mental health and when we are lacking those chemicals we develop depression.

Hope you enjoy the people on this site and all the info that you will find. Be sure to use the search function to find the many threads there are on so many different symptoms. Good luck. Irish

[Sjogrensmum]

Whatever the result, dont give up. If you are feeling these symptoms and have a gut feeling you know what it is keep pushing to see a rheumatologist, possibly even an immunologist. For some of us the joirney to diagnosis has been a long one. I hope you get some help soon ?

[wyldotter]

Thank you, all.

Yes, my test results came back negative. Just saw the doctor last Monday. When I expressed concern that it could be a false negative, his response was, "Well, we're not going to prescribe medication for a negative result." But he did say he would refer me to a rheumatologist. Still waiting for the referral. In the meantime, my ophthalmologist did give me a dx of dry eyes and a prescription for Restasis. So, that's some movement.

Someone I know recommended a vegan diet for autoimmune diseases. I'm reading up on it to see if it would be easy enough for me to give it a try. (Getting healthy foods prepared is important to me, but fatigue makes it difficult for me to spend a lot of time on it.)

The last few days have been rough for me because of dissatisfaction with my limited energy available. Basically, all I'm doing during the week is working and coming home and going to bed. Looking at the possibility of a decrease in work hours in order to have the time/energy to do the things that make my life joyful (exercise, spending time with important people, cooking, etc.). I feel like I could handle 6 hours a day maybe and have the energy to get some of the fun things in. This may or may not be possible where I work. I may be looking at retiring just to have the time and energy to take care of myself.

Of course, having sleep issues doesn't help with the fatigue. (Yes, I am writing this at 1:48 am when I should be asleep.)

I'm struggling with my usual sources for support right now too. People just don't seem to get how hard it is dealing with this. I get comments like, "Well, it's only a temporary thing. You'll get better." ( Uh... probably not?) Or comments like my doctor's that without a test to give it a name, treating the symptoms won't happen (at least that's how it sounded to me).

I have only been dealing with my "identifiable" symptoms since August. (I had other little hints before then, but not a massive group of new problems.) I can only imagine how hard it was for some of you to go for years without identifying what the issue was. I want to get the peace back into my life and sometimes this just feels too difficult to deal with.

Thank you all for your support and comments. I'm so glad Sjogren's World is here.

Ellen

[Carolina]

Naproxen was my absolute marvelous medication for years and years, for my arthritis which is severe and for the pain of Immune System flares.

I took two in the morning and two at night.  Here it is OTC but also as RX.

Unfortunately after about 14 years of Naproxen, I began to have gastric pain at night, pre-ulcer type.

I took Tums and more Tums and then I could sleep.  I also always took Omeprazole at about 6 pm, before I went to bed and that was supposed the solve the problem.  And did for 14 years.

But, alas, I had to give up Naproxen.   Now I have a 'cocktail' of medications:  Cymbalta (on label for pain and depression) Gabapentin (for nerve pain, but also helps all pain) and Low Dose Medrol.  Medrol is a steroidal anti inflammatory.  I take 2 mg daily for two weeks, and then 2mg every other day for two weeks, and then repeat that cycle.   Medrol is like Prednisone, and carries many possible dangers, but at this very very low dose, and cycling down for two weeks, I am not worried.

With this mixture of all RX medications.  I have almost no pain.  I exercise in warm water to stay flexible, and practice some meditation and relaxation. 

We find what we need, and ignore anything that doesn't apply at the present time.

Warmwaters advice was wonderful:  "And don't let our conversations scare you.  Sjogren's runs a gamut of outcomes. Those of us who spend a lot of time here tend to be on the further end of the spectrum.  People who find solutions and lead a fairly normal life tend to spend less time on a support group.

So don't take our situations as the only ways things can go.   


Best

Warmwaters (one of my favorite therapies - for any problem !)"

Hugs,  Elaine