Hi,
I'm a 32 year old mom of two precious girls and I'm newly diagnosed after having a lip biopsy on monday. I have had dry eye problems that they were treating as contact intolerance for over a year before a routine dentist appt revealed 7 cavitiies that needed immediate attention, and others on the watch list. That's when I asked to be tested for sjogren's. Blood work was negative and lip biospy confirmed it.
To say I'm devastated is an understatement. I have always been the energetic one and enjoy running 3 times a week and taking yoga classes. Right now I'm scared for my future and losing energy and not being able to keep up with my girls (who are just 4 & 2).
My mouth is dry all day and I wake up many times a night to take drinks and put in eye drops. I wake up exhausted in the morning and start the day all over again and wonder if I'll sleep at night or not.
I have to call monday to schedule my first appt with a rheumatologist to see what to do next. I also have ankle pain and tailbone pain and wonder now if these are related to this disease or one of the others that are commonly associated with this disease. Seems rare for sjogren's to be diagnosed alone.
Just wanted to introduce myself, you may be seeing more of me.
Thanks!
Welcome Shanmom. Some of us have posted what we take in our signature lines. I tend to use alternative therapy more than some of the others since I can not take paquinel or methotrexate.
Bring a list of what you are taking to your Dr appointment. Also a list of your symptoms.
You may want to ask about Omega-3, D3, C, B-12, Acetyl-L-Carnitine, and Alpha Lipoic Acid
Hi Shanmom - welcome to your new Sjoggie family (as we're called).
It is so disheartening to see so many young mothers being dx'd here recently with Sjogren's. There are several here in your age group and have small children.
I was dx'd two years ago, although, I think I've had symptoms for 10 plus years. My symptoms seem to hit the fan when I entered menopause. ::)
There is a lot of information here on this forum that I hope will be helpful to you.
Teeth issues are a biggie for us Sjoggie's. Are you using any kind of products for your mouth? There are quite a few Biotene products available that help - these are OTC products. Your dentist might even have some samples of these for you. My dentist was the one who suggested I be tested for Sjogren's because the dental instruments were sticking to my teeth and cheek during the examination.
If you use frequent eye drops they suggest you use preservative free drops. You might want to make an appointment with an Ophthalmologist if you haven't seen an eye doctor in a while. Some doctors put in punctual plugs which help keep what tears we do have in our eyes. I had plugs put in last year.
Yes, we can have aches and pains in other places too.
Rest when you can - stress is not a Sjoggie's friend.
Take care,
Bucky
Don't let it discourage you. I am a thirty six year old mom of 3 ages 17, 15, and 9. My first symptoms were as you described. I would definitely see a rheumatologist asap. The plaquenil is a must whether having flare ups or not. I waited until I started getting flare ups and that was my mistake. I let go of my energy level being low and chose to live each day as it comes because each day will be different. Sometimes I am good for weeks other times I am sick for months but I just keep going with my vitamins, exercise and meds. My experience has been that Sjogren's is what I make of it. I choose not to let it stop my life or my activities with my children but I also set reasonable expectations for myself. I wish you all of the best and encourage you to find a treatment plan that works for you.
Hi Shanmom,
Let me also welcome you to the SJS World and family! Please look around the board as you'll find a lot of topics that might interest you, and let's not mention the gaggles of great members too!
I'm fifty (mumble, mumble) and it started somewhere around the peri-menopause/menopause timeframe, and let me tell you, I thought I was spiraling down an abyss....whew, there were days were I'd fall asleep at my desk, and many more where I almost did. Gosh, several years later and I'm still having trouble sleeping; thankfully, I can squeak in four hours straight more nights than not in years (it's still hard to stay awake at the office sometimes, and thank goodness for Provigil).
I don't have a really dry mouth, but man oh man the cavities (the eyes are very dry though)! Each dentist that rebuilt my mouth have remarked about the "odd" cavities I always seem to get (high up in between the teeth, under the gum lines with strong healthy gums (no open areas), and breaking of teeth has been another thing lately. Egads, another tooth is starting to break and I can see crack lines on others; I don't eat very hard foods.
Again, welcome and I hope to be able to chat with you soon.
Take care of yourself -
Patze
Thanks everyone. I do have tear duct plugs since my eyes were so dry and I've been on restasis for a year now. Those were precautions when they just thought it was dry eyes due to contact use. I am in glasses and have been since July 09. Just started trying the biotene products and am meeting with a dentist on Wednesday to start repairing my mouth. Yes, I do remember them mentioning a crack on one of teeth and cavities are underneath old cavities, so the odd places definitely sounds very familiar.
I just don't want to be tired the rest of my life, thought it was just due to being a new mom and learning how to sleep again myself....still in the angry stage, hoping to move out of it soon.
I did see an oprah about a mom with no hands and no legs and made me think this isn't so bad.....just need to work with what I got.
Thanks for listening.
Hi Shanmom :)
Welcome to Sjogren's world.
I see you've had some good advice already.
I hope you find the site useful.
Take care - Scottie :)
Hi Shanmom!
Just adding my welcome to you as well!
If you have the energy now....go on like you have been with your life. You may never develop the fatigue or other symptoms that some others here on the board have. Sjogrens is a very individual thing. Some of us very have minor symptoms and others of us have more major involvement....while still others have a combination of good and bad days intertwined!
The best advice I can give is to live you life to the fullest each day and not worry what the future may bring as it may not bring any more than what you have right now in regards to the sjogrens. I know this isn't easy....but worrying about it wont change it and it will rob you of your good days right now!
So enjoy each and every day...take care of your eyes and mouth as you need to now and hopefully you wont develop any other symptoms. And if you do... you will deal with them as they come up as well. We often find out we are much stronger than we think we are when we need to be...and thank goodness for that! :)
But I also want to say....this is a new diagnosis for you...so it will all come with time...allow yourself to go through the feelings you have to in order to get to this point! You will do it! Just be kind to yourself in the process!
I am newly dx with sjogren's. In the process of educating myself about this syndrome I found this site. I am interested in the signs and symptoms others are experiencing. Due to a problem
with swelling of a lymph node under my jaw line, accompanied with a earache, I decided to see a ENT. I was so surprised when he sat down beside me and told me what he found. I concider myself lucky as my husband insisted I keep the appointment, and also that the mixed connective tissue disorder is progressing to dx that have real names. I have many dx that probably painted a class book case of sjogrens to the physician. I already have problems with mobility, vitaminosis, thyroid disorder..s/p RA131, and also osteoarthritis to name a few. If anyone on the boards would care to share your story, and progression of sjogren's, I believe it would help me with the acceptance of having this syndrome as well as preparing for what may be down the road. I have not heard from his office as far as the results of the bloodwork, and I am waiting to have the CT scan scheduled. There is no doubt in my mind that he's accurate with his dx, but I am glad everything is being done to confirm what we already know. I hope to hear from many of you soon. Patience is not a virtue I possess. I will thank you in advance. Happy autumn to all! Sissy
Hi, Sissy
I'm somewhat in the same situation as you, but have not been given a diagnosis as of yet. Hopefully that will come soon. I just had a CT on my neck yesterday after an ultrasound last week came back abnormal. I've had tender sore swelling under my jawline for several months. When I saw my rheumatologist 2 weeks ago for a checkup he looked in my mouth and ordered the ultrasound right away. I see him because I have fibromyalgia and chronic fatigue syndrome. I've suspected Sjogren's for a yr. after a nurse mentioned it to me, but now the symptoms seem she may be right.
I, too, am not that great at patience sometimes. Trying to work on that~ And I'm sure you were surprised by what the ENT told you. There really is a huge amount of great info. here. The diagnosis is a lot to take in...I wish you progress with your acceptance. Seems that for most of us that takes a while (no matter what the condition is) and it's a process I'm still working on myself, so maybe we can help one another on our journey. Nice to meet you!
Take care,
Melinda
Melinda.....I was beginning to believe I posted on the wrong site. You seem to be the only one welcoming me to the site, for that I say thank you....Yes, I was surprised at the preliminary dx. I have so many differant ones that I take a whole page to list them. I have been disabled since 2003 from my career as a nurse. I knew about sjogren's through the research I did when my ANA came up positive for RH, Lupus and sjogren's. Due to other testing about 8 yrs ago, I was dx with mixed connective tissue disorder. I knew it would be progressive in nature. The sore throat, and what turned out to be stones in my glands and lymph nodes (I thought I had infection in the tonsils) plus the ear aches and difficulty swallowing is what pushed me into having it checked out by a specialist. My PCP looked down my throat and did do a hearing test and said it was probably just a virus.....that was it. After I still felt bad and nothing had improved over 2-3 mon. I knew to be proactive. I am scheduled for a CT with contrast the first part of October. I know he's being sure I don't have cancer. I am awaiting the results of the blood draw. I am so glad to went to see this specialist.
Do you have memory problems? I have noticed that I have difficulty remembering how to spell common words, paperwork, and also what I read. I seem to do ok with what someone says, as long as it's brief. My neurologist has moved to Oregon and I have yet to have the new office to make me another appointment. It'll be intereresting on what their take is on this new diagnosis. I am going to do some more surfing through this site. I did post some replies to peoples posts yesterday. I thought possibly with medical background I might be able to help someone. Again, thanks for the welcome. Sissy
I'd like to welcome you too, Sissy, and I apologise for missing your post...perhaps you could start a topic and introduce yourself, although your replies to other member's post is always welcome, too!
Sissy - welcome to your new Sjoggie family.
You had mentioned about reading other peoples story about their Sjogren's journey. If you go to the "History/Staff" link at the top of this page, you can read about all the Staff members here and our journey on the Sjogren's Road.
If you click on a persons name and go to the first page of their posts, you will usually find some sort of introduction from them which brought them to Sjogren's World.
It's always difficult to have to wait for test results, isn't it? I hope they have answers for you soon.
There is a lot of information on this site, but also remember - each person's Sjogren journey is different. Some have very mild symptoms and others have more involvement. So everything you read that is happening to someone else, may never happen to you.
Take each day, one at a time - and enjoy them. Rest when you need to - stress and overdoing things are not a Sjoggie's friend.
Best wishes on your CT scan coming up.
Bucky
Hi again, Sissy
I think what happened was that since your post was under someone else's new post, it got a little lost in the mix. Took me a minute myself to figure out how to start a new post. Everyone here seems very friendly and encouraging, and don't we all need that!?
I was diagnosed with fibromyalgia and chronic fatigue syndrome (after another 6 mths,) as of Feb. 2009, so am still pretty new to "the new me". I worked for a government contract job until this Feb. when I just could no longer do it; the pain, fatigue, stress at work, difficulty talking, which I did on the phone for 8 hrs., eye problems (undiagnosed chronic dry eye at that time) etc. so am now in the process of applying for SS disability.
We all have to be proactive, it seems and push for tests and diagnosis sometimes. My PCP looks at my swollen glands and assumes its from CFS which could be true, but now I know I've had an infection in the salivary gland at least a couple times. I just got the results from my CT today and that's what is showing. CT is normal for any cysts, stones, etc. Thank God...but with all the other symptoms for SJS I really want to look into this more. If you look at the laundry list of symptoms, that's me...got every one.
Oh, the memory problems! Lord, yes, and have been getting worse. I try puzzles and read as much as I can, but it's gotten really bad. Also the problems with spelling common words, blank out in the middle of a sentence talking, cannot remember things even if it's written down. It's gotten so if I have an appt. I put it on the wall calendar, post it on a corkboard near the computer and sometimes put a postie on the computer screen! I think it's one of the most frustrating parts of this; I love words and now hard to remember how to use them!
I am sure with your medical background you will be a big help to lots of us here! I hope you have a good weekend and good to hear from you. Take care of yourself and let us know how your CT comes out.
Blessings,
Melinda
Thank you for the welcome. Yes, I did introduce myself by answering someone else's topic. Just another thing to add to the list of things that I do that I should know better ! I am enjoying reading the posts by everyone. I can't believe how similar their medical problems are to mine. I have been blaming the majority of my problems on thyroid issues I began having in the early 2000's. I think they started around 2001. I began having issues with a hyperthyroid. I did try oral medications that didn't help. The final treatment after being diagnosed with Graves disease and thyroidtoxicosis I had the radioactive iodine. My personal experience was horrid. I would not advise anyone to have that done. If we could only have do-overs! I am unaware if the thyroid disorders caused my health to spiral out of control, or if a autoimmune disease attached my thyroid. Then end result has been a multitude of health problems, hospitalizations, ER visits, numerous tests and medications. I would list them as others have but I am unaware how to do this so it will show up on all my posts. Anyone care to teach me? Their are just to many people on this forum to believe it could be incidental the kinds of problems and progressive illnesses prior to the dx of Sjogren's. Some of the research I've done says it's rare. Some of the research doesn't even mention the memory problems that seem to accompany this disease. I was dx with Mixed Connective Tissues Disorder almost 10 years ago. I was also told it was to include an "overlap". When I questioned my physician about this he said that it was hard to say exactly what all was wrong but over time something would get bad enough to lead them to a more concrete dx. So I guess Sjogren's would fall under that and it won't surprise me if my blood work shows Lupus or Rheumatoid arthritis. I know their is a difference between rheumatoid and osteoarthritis. So far I have not tried to research just how many people actually have both. Thank you all for being so candid with your descriptions of the problems your having and the ways you've learned to cope with this illness. Sissy
Yes, Sissy, there are lots of things that "overlap." Me being rather new to all this, I've done a lot of reading and research, and still have much to learn.
Much of the conditions that overlap can be several different things and then add to the complexity is the fact that some people have certain problems but not others; or the fact that the problems can wax and wane and it becomes VERY complicated.
My kind PCP admitted that sometimes treating patients like me can be frustrating; not that he's frustrated by me, personally, but by the fact that some meds help, others don't, I get better in one regard, then something else pops up! So, if he's frustrated I told him, imagine how I feel. :)
Hope the posts here help you. And feel welcome to ask anything...many of the "more experienced" here are very glad to help.
Have a good week,
Melinda