hello. I have been diagnosed with SS since sept 2010. my first symptoms were burning dry eyes, then the constant dry mouth. i was told it was allergies, then told it was occular rosacea. it wasn't till fatigue, feet hurt and elbows hurt that i went and saw my GP. my labs showed possible arthritis going on, was sent to rheumatologist. my lab came back with positive SSA and SSB, high RH, high sed rate, plus my symptoms, bang i got labeled SS victim!
march 2011 was informed by same rhuemy, I have RA as well. then may 2011 I was diagnosed with hypothyroid. I have been diagnosed enough.
I take Plaquenil 400 mg a day, Methotrexate 10 mg a week, prednisone if I need it. I had my lower tear ducts cauterized closed 1 year ago with good relief given. Restasis didn't work for me after trying it for 5 months.
Is my story in any way familiar to anyones. I have no one close to me with this problem(s). I feel very low and sad by all this happening at once. Is there any long time SS person who can offer any encouragement?
thanks for any help you can offer.
shelly
Hi eye2dry,
Let me welcome you to the SJS World and family! Please do look around the board as you'll find tons of great members plus scads of topics and oodles of information. By using the search engine, you'll find a lot of topics that you might not have thought about (you'll often find me in the stacks as I've often mentioned, I learn so much more there than with the rheumy).
I'm sorry to hear that you're having a tough time and I'm so glad to see that your doctor was able to diagnose so quickly as there are several members that had to wait years and in some cases decades before finally being diagnosed. I was lucky in that the rheumy I see has always treated my symptoms without positive blood work.
I also am hypothyroid (Hashimoto's) and it seems to one of the more common AIs that travel with SJS. I got diagnosed with that first, but it took a FN biopsy to finally get the proper diagnosis because I am sero negative for everything, always have been (our bodies can do some very interesting things thats for sure! :-\). And its not unusual to have two or more AIs, not at all.
I sure do understand dry/burning eyes as that was my first and worst symptom of SJS/Hashimoto's. I've told the story before, my eyes were so dry that I had to give up driving as I could not see well enough any longer. Thanks to a sharp optometrist and finally finding a good opthamologist made life a lot easier and I can see a almost normal.
Again, welcome, and I hope that you find this board as warm and inviting as I did several years ago.
Take care of yourself -
Patze
Welcome to the forum, eye2dry. Yes it is a familiar story.
Hi Shelly - welcome to the forum! :D
Yep, your story is a very familiar one echoed here by many, many members.
I think a lot of people are told they have allergy eyes, when indeed it's part of Sjogren's. Since you mentioned that Restasis didn't work for you, what do you use to get relief? There are soooo many OTC products available - it ends up being a personal preference as to what feels good and works for each person individually. I like Systane and Thera Tears.
If you put your drops in the refrigerator it feels really good when you use them. ;D Just make sure you use the preservative free kind.
My thyroid is hypo too.
Plus, my elbows really bug me too. My RA numbers were really high when I had my initial Sjogren's blood work done (going on 4 yrs.) - it seems just recently that my elbows have been bugging me quite a bit. To carry a gallon jug of milk makes them just ache. To me, if I look at my arm, it looks like a muscle is always swollen by my elbow. What's it like for you?
I know it can be overwhelming to be hit with all this at once. Some people have learned along the way that they really did have symptoms of varying degrees for years but kind of ignored them, or accepted them as "normal". Then, when they get a Sjogren's dx they start putting the pieces of the puzzle together and then realize they have been dealing with this for months, if not years.
Along the way, you will learn how to pace yourself and what things can trigger a flare.
Stress is NOT our friend - if there are ways for you to reduce stress in your life, by all means, take steps to keep it to a minimum.
You will have ups and downs along the way - this is normal.
One of the important things for you to keep doing is to hydrate, hydrate, hydrate - whether it be your mouth, eyes, or skin or all of them at once!
Doctors still aren't real familiar with Sjogren's, and some might tell you that Sjogren's is JUST dry eyes and mouth. Not so! There are several good books about Sjogren's which you can get to help you understand this disease and what it presents. Here are some of the ones available: http://www.sjogrensworld.org/books.htm I have 4 or 5 books that I reference quite frequently.
As Patze mentioned, if you use the search engine here on this page, you can find all kinds of information for everything under the sun. 8)
Again, welcome.
Bucky
Yep, your story sounds very familiar. Sounds like you are in the right place.
WELCOME!
Duchess
thank you for responding Bucky.
for eye relief I have/am using Blink, FreshKote,TheraTears,Systane,Soothe and flurbiprofen. If I didn't have such eye discomfort with this SS I would feel so much better. My eyes are always bloodshot, feel gritty, burn. I really love to read but have reduced it down to just an hour a day because of burning eyes.
I have tried cold compress to my eyes and use a room humidifier.
Oh my elbows are so tender. When I get up in the am. my feet touch the floor and are tender, after awhile it stops. But if I sit down for awhile or get out of my car, they are tender all over again. The hurt, feel bruised on the soles.
I am an LPN and work for a dermatologist, I worry I will have to leave a job I love eventually. I have trouble working with fine sutures, reading the small print on medication inserts,etc...My eyes are blurry despite new glasses and I too suffer from the much talked about brain fog and hard to concentrate. I am not sure if it's the meds or the SS doing that. I sometimes have to ask the dr. twice some things because I forgot before I could write it down.
I can't talk to "others" because it comes off as complaining about a "little dryness", big deal. My husband also feels if you just put it out of your mind and get up and do something, you'll feel better. Of course, he enjoys fabulous health. I lay in bed some nights and wish I can turn my health back 20 years.
Thanks for listening. I think I feel alittle better right now!
Hi eye2dry and Welcome! :D
I'm sorry for the reason you've found us, but you have come to the right place for understanding, encouragement and support. We "get it".
You've bit hit with quite a blow of diagnosis over the last year. It's a lot to deal with. We understand about talking to others, because what little people know of Sjogren's they hear "some dryness" and think it's a small annoyance. They have no idea what it does to our eyes and mouths. Or, they will say "oh yes, I have that."
I always think "Really?! You have that?" ::)
I use FreshKote drops and they do help, along with Bepreve. I have the elbow pain; feels like I've banged my funny bone all the time. Ugh.
I also have a husband who used to think that if I just "willed myself" to do more (like I was able to years ago) I would be able to do it. It took a long while for him to see that wasn't possible, and now he's very supportive.
He asked what my eyes felt like and I finally told him if you remember how your eyes burn if you've swum in a pool with too much chlorine how they burn? Well, that's what mine are like ALL the time. That seemed to sink in. I also understand your fear of needing to quit your job eventually. No one can say what course your illness will take, but hopefully treatment will begin to help.
I've begun to ramble, as I tend to do. :-[ Please know that you are welcome here to express anything at all, with no fear. Ask anything, vent if you need, comment on any posts and know that we care and understand.
Welcome again to our wonderful group.
Melinda