Newly diagnosed with Sjogren's

[saranski]

Hi,
My name is Sarah, my dad gave me the nickname Saranski many moons ago!!  I was diagnosed with Sjogren's about 2 weeks ago.  I don't know if I really believe it or not....I have slightly dry eyes and mouth, nothing that i would see anyone about.  However, it is the muscle pain, aches, joint issues, and fatigue that are really playing havoc with my body and spirit.  I have been seeing doctors for the past 10 years regarding the same complaints and i have been told i have fibromyalgia and chronic fatigue syndrome, and now Sjogren's.  I am 43 year's old and the mother of 4 and will graduate in March of 2010 as a registered nurse.  The last 2 months have been physically terrible for me, how am i supposed to work as a nurse when i can't even do the simple daily tasks?   The doctor wants to start me on Plaquenil, another drug, they just keep adding to my growing list of drugs to take.  I also have digestive issues, IBS, esophageal spasms, osteoarthritis, and heart issues.  I am going next week for some heart ablasion surgery, so hopefully that will fix the heart issue, but.....the thought of being in this "discomfort" throughout my whole body for the rest of my life really has me down.  Please tell me that this too shall pass...I need some hope.  I need someone who understands about the pain and fatigue.........my husband is a wonderful man and my children are awesome, but they just don't know.  They don't know how much i hide from them........

[harrigan]

Hello Sarah, welcome and glad you found us.  You have already been dealing with a lot before this new diagnosis so I'm not surprised you feel a little isolated and overawed.

You won't always feel so bad - I was diagnosed last March and like many here, can feel benefits of taking Plaquenil.  I have a big family and teach full time and it has really got me through some of the worst bits.  Don't underestimate how much you are doing - I have a friend who is retraining as a nurse and juggling that with family when you are well is plenty!

Hope you can find some company, support and advice here and share how you're doing.  I know how you feel about hiding some of what you are going through at home / work, but there is no need to here.  Somebody is almost always around.  It will be good to get to know you - Happy New Year to you and your family,  Ailsa

[Pisces24]

Sorry to hear you have gone through so much.  You'll find that with most of the folks finally diagnosed with SJS it was a loooong haul to get a firm diagnosis.  It is not unusual to have other "junk" along with it.

I understand that it scares the heck out of you thinking about the future.  Leastwise they have "id'd" it and can now work on effective treatment to help you so that is a plus. I was in limboland for 6 yrs and for 2 had drs tell me they were sure it was some kind of cancer!    Being finally diagnosed it is almost like you go through the stages of grief until you get to the acceptance part.    Sorry I can't tell you what your future will be with SJS. I can tell you that you are a heck of a lot stronger than you think you are and you will be able to deal with it. On the plus side you have been officially diagnosed and you have a supportive family. After you have got your "mind" settled, (counseling helps) you will have to have a talk with your kids sometime. Reality just bites sometimes. My dad was disabled when I was 13, mom not in good health and I was an only child & took care of them in their final yrs so I faced reality a bit sooner than some but I think I am a better person for it.  You've accomplished one step by coming on this site - as somehow just putting it down in print makes it seem more "final" and your mind better to accept it. Sounds dumb but true.

Everyone is very understanding here and have "been there". Stop in the chat sometime if you can also.
Good luck and keep your chin up and keep plugging away.

[Katybarstool]

Hi Sarah

Welcome from me too. We are all people who don't really want to be here, but in our adversity have found wonderful suuportive friends, who  help with our new Sjoggie lives. You will soon become one of the family.

Well done you on your training, and good luck for the graduation.

Kathyx

[Patze]

Hi Sarah,

Let me also welcome you to the SJS World!  Please do look around as there are a lot of old topics and you just might find some information that you're looking for.  I know that I often just read as the rheumy doesn't say much, pretty much a grunt now and then! 

I'm also glad to see that you have a proactive doctor, and that helps so much.  Lucky you!

Good luck on your graduation, and I hope that your training goes well.

Take care and hang in there -

Patze

[kimbo]

Hi Sarah,

Glad you found us and I hope you find your way thru to understanding and acceptance. It took me a while and I even revisited anger and despair in times of flares with fatigue. Fatigue has been the major of many of us. My eyes and mouth were not a concern when I was first DX, it was parotid issues. But the dry eyes and mouth have developed now.
We all have a variety of issues at different levels and at different times.
Please make your self at home and search past threads, as there is a great history of answers to many questions
But most of all compassion, understanding, and companions on the same path, were are here for one another.   

Blessings kimbo

[lynnmarie219]

Hi Sarah and welcome to Sjogrens World!

It's good news that you now have a definite diagnosis (even though you may not think that now  )....not that we want to be sick with anything...but its better to know what we are dealing with so we can face it head on and plan our treatment. It's also good to hear that you have a supportive family and a doctor who wants to start you on plaquenil...its pretty much a standard medication that most of us take to help with some of the symptoms and to slow the progression of the disease. I can understand not wanting to take more medications, but if it helps with the quality of your life...I say go ahead and at least give it a try after discussing it more with your doctor. 

Feel free to come here any time to get information, share whats going on in your life (either good and bad). We're all hear to help each other and this is a safe and comfortable place to be as we have all "been there" in one form or another so we really do understand.

I can relate to what you said about how much you hide from your family...I do the same....partly because sometimes they really don't want to know all the gory details and partly because I don't feeling like talking about it over and over again!

Take care and come back here often....

[Scottietottie]

Hi Sarah 

Welcome to Sjogren's world. Hopefully the Plaquenil will reduce some of the joint pain though it's hard to know what pain is caused by SjS and what pain is caused by OA. (I have both too!) I did find that Plaquenil helped with fatigue.

As well as being tested for SjS have you had your thyroid tested? AI diseases often run in packs and if the thyroid goes awry it can leave you feeling really miserable.

What pain meds are you taking? I'm not medical so I have no idea whether NSAIDs are in order when you have a heart complaint or not.  Good luck with your forthcoming surgery. Please keep posting and let us know how it goes.

Take care - Scottie 

[yankeeinthesouth]

Hi Sarah,
I am newly diagnosed with SJS as well. I know exactly how you feel because I felt the same way and didn't think that I had it. I had been struggling with fatigue, joint pains, body aches, did I mention the awful fatigue to the point that I had to quit working 2 & 1/2 years ago. I am so happy I found this site because after reading many of the stories I can sit here and say "That is what I have been going through", and it all makes sense now. I actually think that I have had it for years but because the symptoms were so minor it was overlooked, and misdiagnosed. I actually had severly dry eyes and did not even know it until I went to the eye dr in June and he said my eyes were the dryest that he has ever seen.  Good luck, and I hope that you get all of the answers that you are looking for. I know how frustrating it can be.

Patty

[graham]

hi saranski, i was diagnosed with sjogrens at 30. i'm now 34, and i can tell you there is a real hope! firstly, here's some tips for managing symptoms which i use:
dry mouth: artificially flavoured mints - just sit one in the back left or right corner of your mouth where the salivary glans are. i go through 1-1.5 tins of eclipse mints per day. while sleeping i have 2-3 in my mouth, and refill when i awake.
dry nose: apply aloe vera gel to upper nostrils with cotton tips 3 times per day - don't use vasoline - the petrolium base can, over years do damage to tissue.
dry eyes: wrap around sunglasses - mine are actually prescription so i wear them all the time. only use preservative free eyedrops - they are dear, so the sunglasses are a great investment - i never use eyedrops now.
dry skin: acquious cream applied 1-2 times a day behind ears (to avoid eczema).
whenever you go out, take a small "bag of tricks" with cotton tips and aloe vera gel, spare mints and cotton buds (in case you have an attack of dry nose from either the wind or cold air you can block up a nostril)
on cold days try to keep the extremities warm (gloves socks and hat) and breathe mostly through the mouth. take chapstick/lipstick everywhere also.

now, for the arthritis/fatigue/circulation i do a healing chinese martial art call zhineng chigong. it has helped me enormously! there are many different forms of chigong around the world. it's a fun daily practise designed specifically to prevent/cure disease. also consider tai chi, yoga...
at least 1 hour per day will both allow you to relax and exercise at the same time. i have found traditional chinese medicine/acupuncture/chigong are ancient sciences which understand what western medicine doesn't; that the body is an electromagnet. this is why magnetic underlays etc stimulate the circulation; blood flow follows chi flow. chi flows through channels known as meridians, and these channels are opened via stretching.

do your chest muscles/tendons bother you? they used to make my days hellish, but now they're hardly a bother because of the streches i do morning and evening. i wouldn't have believed it either! and i was scared to learn chigong but that fear was gone after the first month when i began to notice benefits. i've never taken anti inflammatories.
oh, another tip: for indigestion take a slow stroll after a meal of at least 100 steps (and always clean your teeth after every meal (i've had no dental problems sticking to this rule.
here's a great daily mantra:
"see the opportunity in every difficulty, rather than the difficulty in every opportunity"
feel free to email me (click on the envelope icon under my name) if you have any questions.

[Linda196]

Hello and welcome to Sjogren's World, Graham.

Thanks for your helpful and comprehensive list of survival and coping techniques! We all develop our repertoire over time, but hints like your's help so much. I use some of them myself, and I particularly like your mantra!

I sent you a PM (personal message), and you can access it and any others via the "user info" box, upper left of the forum page.

[lynnmarie219]

Hi Graham and welcome to sjogrens world!

Thanks for sharing your tips with us! I hope you continue to come and share your useful hints with us and allow others here to share with you.....that's what this place is all about!

WELCOME!

[Patze]

HI Graham,

Let me also welcome you to the SJS World and family!  Boy, you are a wealth of information, and I sure appreciate your tips!  I also like your mantra, and I also try to remember to search out the sun, even when the sky is totally cloudy.

A couple of questions, doesn't sleeping with mints in your mouth make you a bit nervous?  I have enough issues trying not to choke while swallowing.

I also walk after I eat, but it hasn't seemed to help me that much.  Is there anything else that you do besides the walking after meals to help your digestion?

Again, welcome, and I hope to chat with you soon!

Take care -

Patze