Hi Everyone,
I'd like to introduce myself.
I'm new to Sjogren's world. I've had primary Sjogren's for the last 8 years. I'm 43 years old. I'm a registered nurse eager to meet people with Sjogrens. I feel I'm the only one with this syndrome. Even doing nursing I haven't met anyone else with primary Sjogrens. The doctors in Australia that I've come across seem to know only limited information. I'm keen to learn more about this disease.
Sjogrens has treated me well so far. Theratears liquid gel to start the day, systane during the day and genteel gel before bed and I'm right eyes-wise. Hand warmers to keep the Raynauds at bay. Zoton keeps the reflux nicely under control. I do have elbow pain which makes my hands numb when I sleep and hurts during the night. The physio said I have nerve entrapment issues and has given me exercises to help. They do help a little but I have to be careful not to overuse my arms or my elbows will flare up. Tiredness is the only problem I have trouble with. I work 2 days a week and have 3 active kids. I used to be able to do everything but now at 3pm and 5pm I have trouble putting one foot in front of the other. Also have develpoed an intolerance to wheat - have no idea whether this has anything to do with Sjogrens?
This sounds like such a grizzle. I'm actually an optomistic cheerful kind of person!
Looking forward to meeting everyone!
Hello chelle
and welcome to sjogrens world forums I'm pretty new myself but find the people here are good kind and caring people we all have sjs and some have many more. I was the same as you when I first come to this board thinking I'm all alone I'm an Aussie with secondary sjogren's and Secondary fibromyalgia thanks to Lupus funny that cause my Lupus S.L.E has been in remission for about 10 years now and I only got sjogrens about 20 mths but like the Dr's say I still have to say I have Lupus cause there are still some aspects of the disease the that I and Dr's have to be aware of he told me it never go away or to put it in easy terms the wolf is there hiding. Its all due to my blood work esp ANAs that are not high enough last reading to call it lupus any more but some aspects are still there and enough to lupus is still there odd I know LoL its like nobody wants to be the responsible for saying the wolf is gone :-\ crazy these autoimmune diseases can be. It sounds to me you have a pinched ulnar nerve in elbow I have for many years should have had a op but got preggie and it did not happen next time you see your rheumy tell him about it my rheumy at the time told me about mine and he did a test he put little ring things on my fingers and the machine showed up the nerve it was all done in his room and did not take long either worth having a talk to yours about it if your seeing a rheumy that is. Looking forward reading more post from you keep us updated how your doing
Nice to meet you, Gerty
I do have a rheumatologist, a lovely man. I've only seen him once though and I dont think i had sore elbows at that time. Next time I see him I'll mention it.
Speaking of rheumatologists should I be getting regular checks, blood tests, appointments etc? He just said to me two years ago "come back if you have any problems". Being a nurse I'm curious as to whether I should have yearly bloods done or something.
sorry sweets I can't help you that when I first got dxed with sle it was the first blood test but it was not until my symptoms got worse he did another then helped to knock it into remission I cant tell you how he did that but it worked when I was dxed with sjs I moved but Dr told me there was very little if anything at all apart from artificial saliva chewing gum sipping water but I also moved and only just starting seeing the Dr again now sorry no help here make a post in Discussion Board
here that is where most will ask things good luck keep intouch nice to meet you as well. Ive also made a few post there asking stuff very kind and friendly and helpful people here
Welcome, Chelle and Gerty!
We seem to be collecting a contingent from Aus, I'm sure you'll meet others. I'm in Eastern Canada, so literally the other side of the world, but it amazes me how much in common SjS gives us, no matter where in the world we are.
Chelle, one thing I've found as a nurse (retired) is that some doctors seem to think that they need not explain or discuss much with me, since I've probably run into it in my practice anyway. I explained to my Rheumy that there is a big difference between, for example, injecting someone else with methotrexate, or teaching them how to, and giving it to one's self...I only wish I had been as detail oriented when caring for others!
If you were diagnosed with positive blood work, there probably isn't much need of repeated testing, since (according to my rheumy) once you got it...YOU GOT IT! I have regular testing of liver and renal function because of the meds I take, and my doc always throws in an inflammatory panel anyway, just to see where we stand.
Gerty, I'm so glad you're finding the site helpful and friendly...sometimes when you have a chronic illness, you might start feeling your friends aren't as available to you, but WE are always here!
Hi Chelle,
I'm another Aussie, with primary sjogrens. I'm 29, work part time and have two young kids. Fatigue and dry eyes are my worst symptoms, and they work hand in hand - the more fatigued, the worse my eyes are. I use FML drops for my eyes, as well as systane or PVA forte. I also have a bottle of plaquenil that I continue forgetting to take.
My rheumy in Perth is brilliant, though very hard to get into. I chose him on the basis that he does a lot of research and has a wide knowledge of Sjogrens. I'm originally from NE Vic, but moved to WA last year. I don't live in Perth, I live way up in the Pilbara.
Mine is somewhat complicated as I also have LAM - I have cysts in my lungs. I'm still trying to determine if I do in fact have both, or just Sjogrens. But I have no symptoms and that makes it very difficult!
anyway, welcome to the boards, and I look forward to talking more with you and other fellow aussies!
Welcome Chelle and Gerty, and everyone else on Team Sjogren's!
Since I'm sero negative and always have been, I don't require the 'test' results to include anyone in the group.
When you have the symptoms then you are walking the walk............... of course getting a good diagnosis is important and I'm hoping for one too.
But everything I read shows me that whatever the diagnosis might be, there isn't any magical cure for one specific thing we might be suffering from. So we're pretty much all in the same boat.
We have members here who've gone all the way to the top medical sites in the country, and STILL no definitive diagnosis. Even tho' it's clear to anyone that they suffer the plagues of heck.
One thing for sure, very few (perhaps none) treatments help everyone, and the drug or treatment that is a lifesaver for me, might actually make another person worse!
My AI (auto immune) condition has produced allergic reactions to about 7 or 8 drugs, over the past 10 years. So even when something is working, I always say 'for now'.
For me, all who suffer and worry and need support, advice, information, and a place to share are respected and loved here! It is a great solace to me.
Yesterday I had to take a nap, and right now I"m wishing I did NOT have to go to the beach with the general family vacation planned to start tomorrow and last a week. I'm finding that being around a lot of different activities and noise is very tiring for me. Let's hope everyone will be out and about most of the time, and I can have some quiet time alone. I need that more and more.
Which is odd for me, as I'm the original party planner, group organizer!
And friction between people does make me very very tired! I used to just ignore it, and I still do, mostly. But since I don't hear very well, and don't move very fast, and tire so easily, I need lots of breaks.
OK, that's m y vent for the day.
Oh, and also yesterday I talked to a bunch of different mortgage company people, and developed the worst case of brain fog. I simply don't have the stamina and attention for complex conversations and sorting through all the information any more.
If someone had told me this was going to happen, I would have been upset and angry. Now I just feel more or less tired, and it doesn't frighten me, but it makes me want to get off the merry-go-round!
OK, that's my second vent for the day.
So far!
Keep us posted on what's going on 'down under'
Kisses
Carolina
Hi Chelle :)
Just wanted to add my welcome too!
Hope you find the site useful. It's certainly friendly and supportive.
Take care - Scottie :)
Hi chelle, I am new too, from London, UK. Still learning lots, I have RA diagnosed last July, fibromyalgia diagnosed April 2010, my rheumy now adds SjS. I am waiting for an appt to go to the SjS clinic to have a lip biopsy, had the dry eye test and that was positive, or whatever its called when they are definitely dry!! just use visco tears eye drops and biotene products for toothpaste and mouthwash. No idea what else I should be doing lol!!! Anyway, its a shame you are "alone" with the illness, in that you know no one else. Everyone here is very friendly supportive and helpful, so just come on here when you can. I still work full time caring for 2 little ones under 2 years, and its killing me!!! but hey ho such is life!!! Take care of yourself, how is your winter, bet its hotter than our summer!! currently 23c in London :)
Hi chelle
Welcome! Everyone here is really wonderful! Everyone is really willing to help and lend support. There is lots of info here also.
I tested positive for SJS May 2009. I have had many flare ups. I also have had my tear ducts coutterized because of bad dryness.
best of luck, we are here for you. harlin
It's so nice to meet everyone! Thank you for your welcome! I feel so much better already. :)
Everyone seems to be taking plaquinel - I've not heard of it. Does it help? I've avoided prescribed drugs so far (except Zoton) as I never like the side effects.
Maiestro: How does the strong sunlight in the Pilbara go with your eyes? I lived in Perth for a year (many years ago) and travelled around alot. Absolutely loved it especially up north. Kalbarrri and the desert were spectacular!
Hi Chelle...I'm from Florida, USA. You'll find lots of really nice people here who can help you with their expertise and experiences. I've learned more about Sjogren's here than anywhere else.
Chelle - to be honest we don't go outside a lot! Its just warming up again now, 31 tomorrow I think. You tend to go from air con house to air con car to air con shops! And when you are outside, it's usually at night. I wear sunglasses everywhere, always have and I'm lost without them. I get polaroid sunglasses too (which means when I go to bali I can't buy cheap sunnies!!)
My opthamologist actually thought living here would make it worse, but i find my eyes better here than they were in Victoria.
Plaquenil - I'll let you know if it helps when i remember to take it. I'm terrible at taking medicine. As far as I know, and what my rheumy told me, there isn't many side effects. It's supposed to help with the fatigue too, but takes a while to kick in. I really need to take it regularly as fatigue is one thing that I really do hate.
Oh and you asked if blood test results should be regular, and based on mine I think there should be some, particularly kidney function. I notcied i my last results that mine are decreased, but not enough to warrant any worry, just something to keep tracking.
Hows everyone else going?
Hi Chelle,
Not sure if you will get this message. I am Aussie too. I was a member before and just rejoined again. I havent met anyone else with Sjogrens either. I have just had an ultrasound on my parotid gland as I have had pain. I have known about my Sjogrens about 4 years or so but I know I have it for years before that. I will get the results of the test Wed and I will probably need to ask some questons in the forums. I live on the NSW Central Coast where are you in OZ??
Kim
Hi Everyone
I'm another Aussie to add to the list (it is nice to see there are a few of us here) I am 41 married with 2 kids.
I was diagnosed last year and found this forum in my search for more information and I have to say I had been feeling really miserable and alone and this website made all the difference. I read a funny post on 'you know you have Sjogren's when....' and laughed for the first time in weeks. It was also so comforting to discover people all over the world who understand what it is like.
I use Systane eye drops daily and after a disastrous attempt on Imuran I have just started Plaquenil. All is going well so far.....
Thank you to everyone here who shares their lives and those who offer support - as has been stated many times in other posts - It is a life saver.
Kaos
Welcome Punk and Kaos. Why don't you drop in on the social side and start a thread to give yourself a more complete introduction?
Some of us have posted what we take in our signature.