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Sjögren's Syndrome Message Board
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Old 07-28-2012, 12:57 PM   #1
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AshleyRo HB User
Help - I'm a Newbie

Hi Everyone. I just wanted to share my story, and I'm hoping to get some words of wisdom. I was diagnosed with Sjogrens two weeks ago and frankly I'm pretty freaked out about this. Oddly, I was diagnosed because I had a rash on my arms that didn't resolve with a steroid shot. My doctor ran tests which showed a positive ANA, Anemia, and low B12. I was referred to a rheumatologist, which confirmed the diagnosis after additional testing. I don't know how long I've had this. I'm 45, but I've had dry eyes for 10 years -- I assumed it was because of my contact lens use and I've had punctal plugs all this time. I didn't even realize that my mouth was dry until it was suggested to me (now it is driving me crazy). I'm always kind of achy, but I work out 5 times a week so I assumed it was pain from working out. The one thing that is completely driving me crazy is I had a corneal abrasion back in February after going for a run, being completely exhausted, and falling asleep with my contacts in. This is now a re-occurring issue with my right eye. I've had stomach issues for years (not bad enough to keep me from living my life, but certainly annoying) that have gone undiagnosed (all kinds of tests run). Now I'm realizing this could be the cause. I haven't eaten Gluten for two weeks now after doing research about Sjogrens, and my stomach is 50% better. I work full time in high tech and I have a teenage son. I'm usually a pretty stable person, but I'm having so much anxiety over this, I'm having difficulty eating and I'm starting to become withdrawn. I guess it is the fear of the unknown and what my future is going to look like. I've always been a very active person, and did not plan to slow down yet. I could really use some advice.

 
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Old 07-28-2012, 05:47 PM   #2
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shar621 HB User
Re: Help - I'm a Newbie

I know this is scary but getting the help now is good. I have not been diagnose with this disease but i believe i have had for as long as ten yrs as well. I had symptoms that i dismiss but when i seek help about it, i had doctors tell me crap about my symptoms so i dealt with it by myself. It was then a few yrs later that i literally couldnt get out of bed because i was so weak. I was admitted to the hospital and spent three weeks there while doctors couldnt figure out what was wrong with me. I was later diagnosed with an autoimmune disease called dermamyositis. I am currently in remission. I recently went to my doctor who actually listens to me and i ask him to prescribed pilocarpine to help with the dry mouth. I didnt have swollen glands but my ANA has been high. I suggest listen to your body, do your research about this disease and let the doctors know of any treatments that you want to try. If your doctors give you a hard time, replace them they are worth wasting your time because they doubt results. Good luck!!

 
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Old 07-30-2012, 08:39 AM   #3
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Catalina1 HB User
Re: Help - I'm a Newbie

I also started with a skin iisue. Red circles for awhile, then a kind of rash on both hands and ankle. Ankle also turned sort of purple. Dermatologist did blood work which came back positive ANA SSA SSB. At first they thought I had Sjogren's and Lupis. After seeing a my Rheumy just Sjogren's was decided.

During the last year and one half I have had sores on my tounge, rash, dry nose, dry eyes, dry mouth, swollen and blocked salavary glands, Carpel tunnel ( both hands), neuropathy, (burning feet on the bottom) ,Blepharitis (eye infection) cracked skin on heels, and IBS for many years. Sometimes I just feel really tired and have to lay down. Thank goodness not all of this happens at the same time. During this time I was also diagnosed with Osterporosis. Last fall I had an IBS attack, passed out (Vasovagal Syncope) got so stiff with spasms I fractured six vertibrae. I had two kyphoplasty surgeries to fix my back and four months off work. Also during all this they did a CT scan of my salavery glands and found that I have very mild emphysema. Thanks goodness I quit smoking 15 years ago. My Rhemy manages my overall care for Sjogren's ,but I see my PCP for some things, and specialists for some of the other symptoms. The most annoying part is the dry mouth and eyes at niight. Sometimes it wakes me up. I am taking fish oil for me eye health and a prescription for dry mouth. I am also using blink for the dry eyes. The opthamologist talked to me about the duct thing, but we will see. I am also giving myself a sub cue shot everynight for the Osteoporossis, (Forteo).

All in all, this sound terrible, but most of it is just annoying. I really don't consider myself sick. Sjogren's affects my quality of life to a certain degree, but it is not life threatening. That would be really unusual.

I am 61 and I work full time and keep up with my house. I don't feel like I did ten years ago, but I do pretty well.

I have a dear friend going through Chemo and radiation with her second round of breast cancer.

I really try to stay positive, and keep a proper perspecitve on all this. That's what works best for me.

I hope this helps some, and I wish you well.

Rebecca

Last edited by Catalina1; 07-30-2012 at 09:23 AM.

 
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Old 08-05-2012, 03:32 PM   #4
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sjogrens HB User
Re: Help - I'm a Newbie

I am young for having this disease, and it can be life changing no doubt. It is scary, and can be overwhelming. My rheumatologist has told me repeatedly that Sjogren's can cause any symptom lupus does, but our kidneys generally fare much better than with Lupus patients. Our lungs, however, tend to be affected more often. If you develop a persistent dry cough, please see a pulmonologist. Lung disease (usually one of the varieties of interstitial lung disease) is fairly common with Sjogren's, and can be treated (usually) if caught early.

 
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Old 08-27-2012, 08:10 AM   #5
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Catalina1 HB User
Re: Help - I'm a Newbie

That part of it scares me a little. Hope for all of us that never happens.

Thanks for the great advice

 
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Old 08-28-2012, 10:07 AM   #6
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Knot HB User
Re: Help - I'm a Newbie

I was diagnosed last Nov and I started with skin issues as well. I think my initial reaction was one of relief. (I finally had an explanation for everything) I think that the first year is the hardest. I'm now beginning to find my way through this. My advice is to educate yourself as much as possible. Listen to your inner voice and always remember to be your own advocate. Someone on this site recommended a really good book to me. It's called "The Sjogren's Book Fourth Edition" It's been a great help to me. Other things that I have found help me is really watching my diet (no gluten, no dairy,watch refined sugar and preservatives. Basically an anti-inflammatory diet.) I like Tosca Reno's cookbooks on clean eating and a book by Julie Daniluk called "Meals that heal Inflammation" I have also found acupuncture to be a great help to me personally. All in all you just have to try different things until you find what works for you.

I hope that something I've wrote will help you. I wish you well... and remember to not try to "over extend yourself" Keep your energy for what is important and you will find a new "normal" Keep us posted!

 
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