Hi - I am new to your Forum

[TripleC]

  It has been hard & I am scared.  I was officially diagnosed with Sjogrens at the beginning of the year but I have had problems for several years.     In reading the threads, I know my health problems are probably small in comparison but I worry about what is in store for me.  Up until about 9mo's ago then all of sudden I got;

1. Pinched nerve in neck - could not move my arms and some days it was hard to dress myself due to pain.  ( It is better now )
2. Complained of overall pain to Dr. Had an RA test - I have a factor of 343.  Ra Dr said I did not have RA but I do have Sjogrens
3. Planters Fasciitis/heels spurs/achilles tendon - I could hardly walk ( It is getting better now )
4. Carpal Tunnel - Could hardly write last week.  Seeing Dr. on Tuesday.

All of this has occurred in about the same time period.  I would like to believe these are all not related to sjogrens,  just a coincidence that it is all happening at the same time.  

Of the Sjogrens symptons, my eyes are the worst.  I do have dry mouth but not as bad and sometimes I notice hard swallowing but not bad.

This is what I have done so far to help my Sjogrens;

1. Restastass's ( sp ? ) twice day
2. Eye plugs both eyes
3. Tears ( Refresh etc ) - I keep in refrigerator because I like to cold fluid on my eyes
4. Very warm moist towelettes - use as an eye compress, when my eyes are really bad or when I need to relax my eyes.
5. Biotene toothpaste, mouthwash etc.
6. Menthol Lyptus cough drops - I eat these constantly for dry mouth.  Probably bad for me ??
7. Coconut water - I sip on this throughout the day.  I know it is healthy for you so I thought I would give it a try.
8. I see the dentist every three months - used to have a lot of cavities but not anymore.
9. Drink coffee, diet pepsi and water.  I know I should quit the coffee & diet pepsi ( but it is hard )
10. I have been noticing that I like a lot of cold stuff.. such as fruit bars, smoothies and anything that is cold.
11. I do not like spicy food anymore.  My husband likes to cook and I am always accusing him of adding too much spices. Then I read something that this is also a symptom of sjogrens.

I am so scared I could just cry. I am so afraid what the future has in store for me with my health.   I am really not sure what other steps I should take ? How do I know I am getting worse ?  Are they any specific tests you can take to monitor your condition ?  The RA Dr. was not too concerned about the Sjogrens, all he said was see my family  Dr. for a follow up in a year.

Thank you.... for listening and any comments would be appreciated !

[lynnmarie219]

Hi TripleC and welcome to Sjogrens World!

First of all take a deep breath...you seem so afraid of things that haven't even occurred yet but this is not uncommon...I think we have all been there...I know I have. Try to take it one day at a time and deal with whatever issues are bothering you at that time. It's hard to say what is and isn't sjogrens as so many symptoms overlap with other things.

A couple of questions for you...

Are you seeing a rheumatologist (you mentioned the RA doctor)? If not can your GP refer you to one or if you are not happy with one you are seeing you can always go for a second opinion. This type of doc may know a little more about the immune system and how to treat some of your symptoms.

Are you on any medications? There are some available out there to help us deal with dry eye and mouth as well as inflammation and pain.

As far as monitoring, my rheumy does lab tests every 6 months now to monitor some of my issues. This way she can keep everything in check and I feel this has worked for me so far.

Hang in there, read all you can here and ask any questions that you have...we are all here for each other...it's a great family of support here!

[TripleC]

 
  Thanks lynnmarie219

  My family Dr. did recommend to a rheumatogist who is the Dr. that said I had sjogrens but no RA.  I got the impression he was not real concerned about the sjogrens since he said to followup with my family Dr. in a year.  I always have the feeling that I should go get another opinion.


I am not on any medication except Aleve.  Three pills a day seems to do the trick so far......

[JeanFour]

Hi--welcome, sorry for your problems, but I just have to tell you to quit those menthol cough drops--you will get cavities fur sure.  Read the xylitol threads that are recent on this board and switch to that (gum and mints).  I am on plaquenil (generic) 200 mg /day and it has helped a lot. I am hoping it will keep  my salivary gland function/eye dryness at present level and not get worse. If I wasn't on that I get a lot worse fast.  Blood tests show I', normal when I  am on it.   Good luck!
[url][/https://sjogrensworld.org/index.php?topic=16591.0]

[Scottietottie]

Hi Triple C 

Welcome to Sjogren's world. I totally understand you being worried but stress can make SjS worse so it's important to concentrate on NOW. None of us know what the future holds. With most people SjS in interminable - not terminal.

For many people it is a disease that progresses very slowly. Reading the boards in here can be scary but SjS is a very individual disease and really does not hit some as hard as others.

We only get one life so we really need to try and make the most of it and we can spend a lot of time and energy worrying about things that may never happen.

I hope you find the site useful.

Take care - Scottie 

[Joe S.]

Welcome.

[Patze]

Hi TripleC!

Let me also welcome you to the SJS World and family!  Please do look around the board as you'll find a ton of information by using the search engine located in the upper left hand side of this page.  If you can't find what you're looking for, don't be shy and ask away as there is usually someone about that might be able to help.

I understand being afraid, I sure know that I was the first time that I posted here!  And I sure appreciate all the members that didn't give up on this sero negative person in their mist.   Seriously though, don't forget to breath as SJS can seem very daunting (there are many members that have been dealing with it for ten, fifteen years and some even longer).

Again, welcome!

Take care of yourself -

Patze

[quilt4fun]

Welcome, TripleC,
     I've was diagnosed 15 months ago; have seen a rheumatologist, and a SS specialist.    I have had to change many things - from medicine to food.  It has been a growing  and learning process.
     Please find a rheumy who will understand and work with you.  What works for one of us, won't necessarily work for you--it takes time to find the right combination.   And be sure to tell all your doctors and dentist that you have Sjogrens, it might help in your treatments.  There are good days and bad days- never know what the day will bring.  But, enjoy those good days!!
      My husband also likes to cook., and he is learning to be careful what he puts in our food---he now adds his pepper to food on his plate.( I cannot tolerate pepper!)
Be good to yourself, rest when you need to.  Read, read, read, there is lots of available information, and share it with your family. They can be a big support for you.
Here's a hug!
Quilt4fun

[Meld256]

Hi TripleC ,

Welcome to the forum!    As others have said, you'll find loads of great info. here and very understanding and caring people.

I understand your fear of the future. When we are diagnosed with something chronic, and so individual to each of us it can be scary.  However, it is important to remember some of us have few symptoms and others a few more.  Yours may stay the same for a long time.
If you feel that you want a second opinion, by all means I would suggest to do that. Sometimes we need to "shop for a doctor" a bit before finding one we are comfortable with.  Please try not to worry too much about the future, and work with what you have now. Feel free to ask anything here.  We are here to support one another in our journey.

Looking forward to hearing more from you.
Melinda

[TripleC]

Thanks for all the encouraging words