Hi, everyone! Just thought I'd introduce myself before I start posting. Here's my SS story.
After a year and a half of escalating mysterious & painful problems and a ton of discouraging visits to my GP and a bunch of specialists, I finally stumbled across an expert oral surgeon (Dr.A) who was able to connect the dots and tell me about Sjogren's. Although I am currently serum negative, he said all my symptoms fit, and this is the most likely diagnosis. My current GP seems a bit disinterested/skeptical that there is actually anything wrong with me... but I have Dr.A on my side, and he is willing to help me treat my symptoms until we can come up with a more definitive diagnosis.
I know I am very lucky that it only took a year and a half to get here, but it's been really tough. Before all of this, I considered myself in good health (I'm only 30!), and now I have to deal with this thing EVERY DAY. My husband is very kind and is a good listener, so that's a good thing, but the rest of my family members - old-fashioned "chin-up" northerners - have had some trouble accepting that my pain is real, and that it's not just depression.
Here's a quick list of what I have been dealing with: dry eyes, ears & nose, swollen salivary glands, painful gastritis and other GI complaints (esp. constipation), sore joints, costochondritis, swollen lymph nodes, hives & itchiness, depression, trouble sleeping, brain fog, mouth sores, etc. (this should all sound familiar to you!). I am currently taking a low dose of Zoloft, and Restasis & Pataday eye drops. I have used steroid drops in the springtime because my whole right eye swells up, and I have punctal plugs, which are great. I have been experimenting with some OTC anti-inflammatory medicines with mixed results.
It was an amazing relief to meet a couple of doctors (actually dentists) who took my complaints seriously instead of just patting me on the back and giving me the old "hysterical female" treatment. >:( After so many negative tests, I myself was starting to question my sanity! Good thing I kept pushing and talking about it... otherwise it would be much harder to endure this current flare. And I was so grateful when I found this forum, and could see how many other people have been dealing with the same issues I have. Anyway, thanks for reading this far, and I am happy to be here.
Hello Clair, welcome to Sjogren's World.
You're right, your story will sound very familiar to many people here, myself included...you were luckier than some, to find an understanding doctor fairly quickly.
Enjoy exploring the site, I'm sure you'll feel right at home.
Hi Claire :)
Welcome to Sjogren's world. There are several sero negative sjoggies in here. You are not alone. I'm glad you have a doc on your side and hopefully he'll treat you!
Because of gastritis - I'm not allowed to take any NSAIDs. Apparently they can make it worse. I take Tramadol and paracetamol and have been taking the combination for over 3 years now. (Recommended by the doc who told me to drop the NSAIDs.) I also take Omeprazole to dilute stomach acid.
I take two senna tablets every night to ward off constipation. I've read in here that a few prunes every day work very well!
Hope you find the site useful.
Take care - Scottie :)
Hi Claire!
Welcome to the pack!
Yes! Your story is very familiar, but what stood out the most to me was that you said you did not give up, but kept mentioning to your doctors, I truly believe this is the key. Keep complaining no matter what UNTIL THEY HEAR YA!!! Even my doctor said this to me, that doctors HAVE TO FINALLY LISTEN BEFORE FINALLY DIAGNOSING SJOGREN!!
THOSE WITHOUT DIAGNOSIS KEEP COMPLAINING!!!!!!!!!! TELLING THEM OVER AND OVER AGAIN YOUR PROBLEMS. DRY EYES, DRY MOUTH, JOINT PAINS, ETC..........................
Bernice
Happy to have you here Claire..
Your story is ssoooooo typical to us, no one here will ever dispute any of the complaints we suffer are in the head!
You are lucky that you have managed to get yourself a good catch in those Dentists..
I'm in the UK and Doctors over here are inclined to take SS a lot less serious than in the US,
but thank goodness for the few who do take the complaint seriously..
welcome Dolly
Hi Claire and welcome to Sjogrens World....its nice to meet you although I'm sorry for the reason!
Yes indeed...you are very lucky to have found a doctor who will listen to you and treat your symptoms without having the positive lab work! Hold on to that one..... ;D!
Read all that you can and want to here and ask any questions that come to mind...there is always someone around to offer their experiences and information or to just listen, be supportive and friendly. This is a very safe place as we all understand and no one here will think you are crazy or that the symptoms are all in your head!
Welcome to the family!
Thanks for your welcome messages, everyone! I'm sure I will be posting lots of questions while I figure this thing out.
Scottie, thanks for the tip about the NSAIDs. I think it's probably time for another visit to my GI specialist, now that I have a better idea about what's causing the gastritis. I will be asking him about some safe medications to take when the GI stuff gets to be too much.
Bernice, you're absolutely right - I had to repeat myself a lot of times before anyone listened and actually thought about it! I also did a ton of research online so I would know what questions to ask.
In the past, I was a more passive person (esp. with doctors), mostly nodding & smiling. Now, I am finding that I have to be more assertive. One time my GP was looking at my poor swollen eye and painful joints, and then got off on the wrong track & started asking me if I get tension headaches, how I sit at my desk, etc. I had to step up and explain clearly that although I appreciated her headache-fighting tips, I did not come to see her because of tension headaches... instead, I needed to know what was causing my eye and joints to flare up!
Thanks again for your support! :) See you around the discussion boards.
Hi Claire,
Late as usual I see! :D Let me also welcome you to the SJS World! Please do look around the board as there is a lot of information that you just might find very informative.
Ah, the doctors. A lot of us can tell you some stories, whew, I know what you mean about being passive when the symptoms started waiting for the doctor to put it all together, still waiting! ;) :D Actually, I'm thankfull for those doctors that believe me and are working to try to make my life a lot better, too bad that I can't clone them! :)
Again, welcome, and I hope to chat with you soon.
Take care -
Patze
Hi Claire -
Welcome!!! While I'm pleased you found this site, I'm sorry you had to look for it!!! I am newly diagnosed as well - July. Everyone here is soooooo patient with our questions so feel free to write them. I don't have much advice to give yet - but as for constipation, I've had it all!!!!! I've tried absolutely everything including the Rx meds. Finally I went to a colorectal surgeon who told me to take Miralax everyday without fail. He said you can even take it safely twice a day. After about a week, I've been regular ever since. It's been a few years now - - it's worth a try. Good luck.
Voiceteacher
Hi Patze & voiceteacher, thanks for your welcomes!
I got an appt. with the GI doc on 10/5, and will ask him about the Miralax and senna. Thanks for the ideas! At this point I am ready to try anything!