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Sjogrens

Apr 03, 2015 8:03 PM

I watched a video on Sjogrens, on the www.Sjogrens.org site. I learned a lot I didn't know. Recently diagnosed and started on drops for my eyes, I was surprised to find out many of the symptoms are shared by other diagnoses like fibromyalgia, lupus and MS.

Apr 06, 2015 7:28 PM

So I went for splint molds today at the orthodontist (for TMJ) and I told the technician I have Sjogrens. She said, "What's that?" ๐Ÿ˜ฎ Really? ๐Ÿ˜• I told her it affects my mouth and eyes and other moisture producing glands, and its an autoimmune disorder. She said shed never heard of it, and she's 37. Wow! Lol ๐Ÿ™๐ŸŒผ

Apr 06, 2015 8:36 PM

Flappsy I know you would think that they would know these things. When I tell nurses that I have Syringomyelia they look at me and ask what's that they have never heard about it.

Apr 06, 2015 9:31 PM

True weezie true. But Sjogrens usually affects the ability to make saliva & tears, and being a dental professional, I guess I just thought they'd know. When I saw the eye doc two weeks ago she knew. She even said its caused me to lose eyelashes more than normal, but luckily not affected my eyesight.

Apr 06, 2015 9:40 PM

It is amazing how much we live in our own worlds and yet how interconnected those worlds are. Things we think are common knowledge because they are so central to our worlds seem obscure to others (even in the medical community) yet the same can be true about something else for the person next to you in line at the grocer store. You just never know what others are experiencing or living with. It's sad really that the connections can't be made and utalized more for the greater good because of closed minds and tunnel vision or just plain greed. But I digress, our worlds can be so big and yet so small all at the same time. But we are all connected in one way or another. #feelingphylisophical

Apr 07, 2015 8:20 AM

You're so right Lymie. I wonder if it's because we've become such a "me first, self gratification" world. ๐Ÿ™๐ŸŒผ

Apr 07, 2015 9:44 AM

Flappsy I believe you are right. Back in the 50's,60's,70's and 80's it seems everyone was close and cared about their families and neighbor's. It seems as technology has become more accessible to everyone people have gradually closed themselves off from everyone else. It's become a me first society, a touch of a button and you can have anything you desire sent to your front door. Where most of us remember the old dial phones, with 5-6 people in your neighborhood on that line. People actually went to family,friends,and neighbor's and sat on their front porches and helped she'll beans,peas,and shuck corn to help each other out. Now if you ask a lot of the younger generation to help do that they want to know how much your are going to pay them to help out. Sorry I got on a rant this morning.

Apr 07, 2015 11:11 AM

I think every one is going through something, whether physical or emotional. My best friend was so stressed by her family trading her she was cutting. It seemed ironic in a way, because she's beating herself up while my body beats me up. Sorry I'm not familiar with Sjogrens.

Apr 07, 2015 3:10 PM

Ferretbandit, I'm just learning about it. I was diagnosed a month or so ago, but have had symptoms for years. It's another autoimmune disorder that affects the moisture producing glands in the body; eyes, nose, mouth, vagina, bladder, kidneys, etc.

From what I've found so far, it can go along with lupus or MS or Lyme's. Mine so far (to knowledge) has affected my mouth and eyes. My eyes don't tear like most on a daily basis so they get dry and irritated. It can affect your vision and even the heart. It also causes some of the same symptoms as the other diseases and fibromyalgia, like fatigue and fog.

I have a splotchy rash on the inside of my cheek that has been there for 3+ months and finally getting a biospy next week. I've wondered if its lupus.

Apr 07, 2015 3:16 PM

Flappsy I'm sorry to here that, it seems like you have been hit with so many new diagnosis this year. Hopefully this is nothing too serious. Will keep you in my prayers

Apr 07, 2015 3:44 PM

Thanks Weezie. I already take 20 meds daily. The list of as needed meds is rediculous, but as sure as one runs out and I don't have it on hand...crisis! (Migraines, muscle spasms, anxiety, IBS, etc). My doc tries to keep me with a 3-7 day supply in case of emergency and he's out of town. It could be worse. I could be with a fatal disease. With so many diseases sharing the same symptoms, like Sjogrens & fibromyalgia, no wonder I'm staying exhausted. Fifteen minutes of activity costs me 2 hr recuperation, sometimes more. I do wonder when the darn tremors will show up again.

Apr 07, 2015 4:00 PM

Flappsy I know what you mean about running out of meds and then needing them and can't get filled without seeing him. I was so worried Tuesday at the hospital ,we had to stay 24 hrs for observation and 24 hr urine. I was so exhausted when we got home I had Fibro Fog so bade I didn't even know my name. Lol I forgot my appointment with my Dr on Thursday for my pain meds refill for the month. I had to sign a sheet saying if I missed my appointment then I would have to wait until the next month for a new appointment. I was so scared I called Monday morning and explained why I had missed and Thank God they gave me another appointment next week.

Apr 07, 2015 5:54 PM

That's good they understood and worked with you. I'm worried for you though. You've got to take care of yourself or you'll be no help for your daughter/grandbaby at all. Hugs & prayers because I know its hard for you...I've been there. ๐Ÿ™๐ŸŒผ

Apr 09, 2015 9:50 AM

Oh Weezie that doesn't sound like a good set up at all. I'm very happy to hear that your doctors office understood but even the threat of making you wait an entire month without pain meds if it's been determined you need them ongoing like that sounds irresponsible for anyone treating chronic pain. Certainly doesn't sound like anyone that understands pain the way a pain doctor should. Maybe I'm not understanding the situation properly but something doesn't sound right to me.

Apr 09, 2015 10:01 AM

Flapps I know how scary and frustrating it is to have so many seemingly unrelated symptoms, actually many of yours sound very familiar to me including the dry areas. I've never been diagnosed with Sorjens but I've never really daughter a diagnosis for the dry eyes and mouth per sรจ. I have Lyme and have attributed the dry areas to that and or treatment. But I have something you could try for that rash inside your cheek. If I'm understanding correctly and its inside your mouth have you tried oil pulling? Either just with pure coconut oil or coconut oil and a drop or two of essential oil, I would start with Theives (or equivalent) or Clove but there are other choices as well. I have had great success with oil pulling and most any mouth issues. I need to remember to do it more often actually to circumvent issues I just haven't gotten myself into enough of a habit of doing it most every day. Just a thought anyway.

Apr 10, 2015 6:28 AM

Lymie, thanks for the info. Sjogrens actually goesit's MS.long with Lupus sometimes. And I'm wondering if the rash and other symptoms might be lupus for me. The neurologist said it may be, though he thinks it's MS. I'll check out the oil pulling. Thanks again & have a good day! ๐Ÿ™๐ŸŒผ

Apr 10, 2015 10:29 AM

Flappsy and Lymie I know that I'm going to have to take better care of myself, so I can take care of them.I don't have a pain specialist, just my PCP and Nuro. I don't think we have a pain specialist here anymore. It was my PCP where I had to sign that agreement.

Apr 10, 2015 10:32 AM

Oops I have never been diagnosed with Sjogrens but I keep a dry mouth. I have heard of oil pulling,but have not tried it yet I think I will try it .

Apr 25, 2015 9:37 AM

Lymie, Although very disgusting, I think the oil pulling may have reduced the rash spot on the inside of my cheek. But I had to reduce the amount to half a teaspoon, and I have to spit it out after only a few minutes, wait a few more and then redo again. I do this a couple of times.

Its almost funny that my dentist misdiagnosed, saying it was lichenplanus. Then my PCP misdiagnosed, saying it was something else like a bacteria or virus related issue. Then the rheumatologist said she too thought it was either bacteria or viral, or yeast. However she sent me to the ENT for a lip biopsy, because I had the rash 3 months straight, and a blood test was positive for Sjogrens antibodies; but she was betting against it. And last of all the ENT said he would almost bet it was yeast, so he requested the lab rule out both yeast & Sjogrens. The biopsy results were Sjogrens; no yeast or fungus or bacteria/virus. They were all wrong. Lol

Now if I could just figure out how to keep my mouth, nose & throat moist! I couldn't even talk this morning because my lips kept sticking to each other and my teeth. I tried using Biotene but I just got my TMJ splint a few days ago, and I have to wear it 24/7/365 except when eating. I'm reluctant to suck on candy or use anything with sugar because the splint gapes at the roof of my mouth, let's in liquids and such, and I don't want to feed cavities building up.

Any suggestions would be appreciated from all! ๐Ÿ˜š (puckered from sticking together)! Lol. ๐Ÿ™๐ŸŒผ

Apr 26, 2015 11:21 PM

There was a gel I used to use for dry mouth. It's made for the problem but I forget who makes it. I got it s the drugstore or walmart something like that in the area of stuff for dry mouth. I know there was something else that worked well for me. Let me give it some thought.

Apr 26, 2015 11:29 PM

Oh also on the oil pulling just keep doing it and you will work up to more time the more you do it. You can spit out just some of it when your mouth gets full too instead of all and then starting again but whatever works for you. Give it a try while your showering I find that s great time to do it. I start as I'm getting ready to shower and then continue in the shower that way I'm doing something while pulling and sometimes the distraction helps. Also I like to add a couple drops of Theives or Peppermint essential oil. Glad it's helping!

Apr 27, 2015 7:10 AM

I'll check at the drugstore. Thanks!

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