Another newbie

[scoobieworld]

Hi everyone

I haven't been diagnosed yet, just had my blood drawn today for testing. I have very swollen submandibular salivary glands and am completely exhausted.

I feel very frightened as my life has been bleak in the past three years as I have had leaky gut with ever increasing food intolerances due to candidasis and now to have this horrible incurable illness makes me wonder how long I can carry on

Sorry that's my first post is so negative, am just alone,exhausted and frightened to loose the hope of doing the things I love.....like going on along hike with my dogs, riding my bike or even going back to work, as finances are getting pretty bad

Sorry so blue for my first post

Xxxx

[loulou]

hi scoobie

so sorry to read your feeling so exhausted and understand the fear of the unknown of this illness. I was diagnosed in 2004 and remember quite well how I felt at the thought of having a long term illness, but on the other hand relieved there was a reason that I felt so poorly. We are all different in how we feel and react, but I am glad you found this amazing site for support and valued care and helpful tips, and knowledge. someone will be along with experience of some of the symptoms you are dealing with.

Keep your chin up and hope you get to feel better soon.

x loulou

[Navigator]

Hi newbie

The good news is you are taking steps to get better.   I was very sick also before I was diagnosed.  I had very painful flare ups...at first with my presentation of symptoms they thought I might have a brain tumor.  I too was very tired all the time.  But...the important thing is to get diagnosed and get medicine.   Many people live quite well with SJS.  You don?t know yet how you will react to treatment.  I have had this for 8 years and have been mostly much better...I exercise, walk the dog etc., work.... Have hope and stay in touch.  While your at it have your Vitamin D levels tested.  Most of us are super deficient and getting your blood levels up will help a lot.

[Pisces24]

I used to get a lot of swollen gland just below the ear. Think it is the partroid gland. Anyway, antibiotics finally took care of it but ENT doctor said sometimes you can get a little blockage in it that can make it swollen.

Some of us with Sjogrens, it sneaks up on us. We just get used to it until it gets bad or the doctor insists to do some looking. Some of us too just plain feel like c&*^ and the doctor doesn't listen to us. Hey I even had a "specialist" tell me it was probably something i got from my cat.  I had just got a cat a month ago and been going to "so called specialists" for 2 years already.  Is wasn't the cat.

Sjogrens is a very individualistic symdrome. It can effect people differently. The common symptoms are fatigue, dryness all in head and some skin, and easily gotten infections & gunk.

Glad you found us but sorry you had to. Welcome to the Group. If you have any questions, chances are someone can answer or has gone through the same thing.  Good Luck!

[finallyadx]

Hi Scoobie - welcome - so sorry you had to find us but glad you did - folks here are supportive, kind and informative.

I have to agree - I was grateful to get my diagnosis - had been sick for quite some time and was glad to have a name and some potential treatment options to relieve some of my symptoms.  I take plaquenil and cevelimine right now along with supplements to help.  The plaquenil, after about six months, helped me with my fatigue and some of the aches and pains I was feeling.  The cevelimine helps with my salivary glands/dry mouth/nose/sinus issues. 

I hope you are able to get the answers you are looking for.

Many sjogrens folks go on to lead very fulfilling lives and can continue to do what they love...learning limits and pacing yourself may be needed, but can be done.

You are not alone here.

Keep us posted.
Sending positive thoughts your way.

Kim

[Dolly Dimples]

Welcome Scooby, sorry to have another newbie here, but we are glad you found us.
     Your letter is so typical of every new member , but I can assure you that you will cope as time goes on ,

If your tests are confirmed,find out all you can about the condition, here is the best place to start,

   Your among people who know exactly how your feeling, and some are so knowledgeable about this stuff , you will learn    much yourself.
Ask questions to your Doctors too, and find the best you can. 
                     Hope you feel  more comfortable soon,  please let us know how things go.
                                                                                                   Good luck, Dolly x
   

[cccourt1942]

Scoobie-- 

Your post both tears my heart out...and makes me realize how far I have come in less than 1 1/2 years.  I remember the shell shock of the dx.  I recall the fear...the puzzlement.   To me, honestly, I either have all the right meds now, or I am just recently coming out of the dx fog.

Hold on to your socks:  you are going to learn so much in the next six months.  You will be reading one of these posts (like yours) in a year...and you will be the one to respond.  THEN you will think back as I am presently.  You will adjust..it isn't fun.  You will survive, you will learn to live with the modifications it takes to be comfortable with this disease.  You will be okay.  Believe me.  Always remember we have ALL been where you are right now.  We have all wanted to cry..but ...no tears!  We have all been stopped dead in our tracks thinking about the fears for our futures.  You can't believe it now, but you will be okay.

Ask any questions....if we have answers we will share freely.

Try to relax however you enjoy relaxing..reading, TV, music, movie.  Anything to give your head a rest.  We are one sisterhood/brotherhood here.

Have a comfortable evening.

c3

[Kathy57]

Scoobie:

Don't be sorry for your post.  We have all been there!  I was diagnosed last August but like most of us here, I  had been sick off and on for a loooong time before any of my doctors caught on.

I am seronegative but am lucky because my doctor is treating me anyway.  He did not insist that I have the lip biopsy because he said he felt certain I had Sjogrens and was going to treat me regardless.  I lucked out!!

I am taking Plaquinil and Cevimeline.  The Plaquenil took about 6 weeks to kick in and about 6 months for the full effect.  It helps with the awful fatigue, pain, and rashes.  Cevimeline helps right away with the awful dry mouth, sinuses, throat, etc.    I started out with Pilicarpine (for dry mouth) but found the Cevimeline to be more effective for me.

I remember being absolutely miserable with overwhelming fatigue, horrible dryness, pain, depression and terrible anxiety!  I felt so alone and I didn't know a single soul who had Sjogrens!

But then I joined this group and now I know people from literally all over the world who share my problems and concerns.  I've found this forum to be invaluable to me just for the comraderie and advice!  I hope that you will feel this way too.

Do not give up hope!  This will not be "a walk in the park" for you, but it will get better!  You will learn what meds/ treatments work best for you and you will learn to manage these awful symptoms.  It may take some time but you will regain your quality of life.  And the people here will be glad to cheer you on every step of the way! 

Remember that you can communicate with us anytime you want and even on Christmas!  (I know that for a fact). You can discuss anything you want here and just be yourself.  This is a safe place.

You may not feel completely normal ever again, (but you might!) but you will define a new normal.  You will discover what is most important to you.

Welcome and never apologize for the way you feel.  Tell it like it is!

Kathy

[scoobieworld]

Thank you everyone for all your lovely positive replies, it was so very very kind of you all to spend the time, made me cry, again!!

The trouble is my life was pretty awful before SS. I had ME Years ago just after getting married, then found out my lovely hubbie had no sperm, we went through icsi, got pregnant, but had a still born baby girl, Abby. Following this had unsuccessful Icsi treatments, did manage to get pregnant, but baby was so ill we had to abort and docs left baby inside, which it gave birth to on plane to USA to have break after trauma. We had three more miscarriages and another sick baby that we had to abort as wouldn't have survived.

Our marriage broke down and we divorced, I still miss him terribly

After a few years health started to improve, and I could see I was getting my life back. But after moving and a load of awful things happened, my leaky gut started. I have been battling this for three years and nothing has helped, I've just deteriorated. the only food that I can safely eat is salmon and cucumber, without reacting....the doctors here don't believe in candida or leaky gut, unless you go privately (hindsight I should have just gone to Harley street doctor to try and sort before my body succumbed to SS.  )

The worst sympton has been the fatigue.

And now am just counting down the hours until I get results of blood tests. Intuitively, I know I have this as there is no other reason for my swollen glands or the worsening fatigue, both got worse after loosing my baby substitute, kookie, my dog suddenly and my cats kittens all died.

I just look at future and it looks even worse than it did before SS. If it makes sense I love life but I have no life, so I just don't see any other alternative but to call it a day after I get diagnosis.

Sorry for this depressing essay folks and for sharing such misery !!!

Jane xxx

[Kathy57]

Jane,

Wow, you have had more than your fair share of misery!  With everything that has happened to you, I can only hope that you were offered some professional help.  My mother always said that "God never gives us more than we can handle", but sometimes I wonder!

I am so grieved to hear of the loss of your babies and your marriage!  My heart breaks for you.  You have reason to feel depression (but you don't need a "reason" to feel it.). Much has been taken from you, and now your health.  Are you taking any meds to help with this?  Sometimes they help.  I'm take Lexipro for anxiety/ depression and I have to say that I feel much better than I did. 

Of course it will take much more than a "pill" to make things right. 

I've been told that autoimmune disease sometimes follows leaky gut and might actually be the cause of it.  Do you have GERD?  I have gastritis, Barrettes Esophagus, and GERD that I feel is related to my Sjogrens.

It is quite common to have GI symptoms with Sjogren's.  Many people here do.  Sjogrens affects  many systems. 

I meant to say earlier that I hope you get diagnosed soon and find your answers. 

I will be thinking of you and praying for you (as I'm sure many people here will also) as you travel this dark place that you have found yourself in.

Praying that light will find you sooner!  Please hang in there and keep in touch.

Kathy

[Dolly Dimples]

Dear Jane , just echoing Kathy 57,
I too pray that you will find some hope and help at the end of all youve been through, way too much indeed.
   Hope you get some positive answers soon.  Have you had or thought about some counselling,
   talking everything through with a professional councillor can and does help.
     and we are always here to listen and try to help.
                              God bless, Dolly x
     

[nannysbaby]

Jane

Don't regret "sharing your misery," that's what this forum is all about.  Sometimes it's misery and troubles we share, but other times it joy and new discovery and information.

This forum is filled with caring people with an abundance of information and experience and very large shoulders.  Welcome.

Nancy

[Princess Tusi]

Hi Jane,
I too am new 'just out of the wrapper'. I wanted to share with you how supportive, knowledgeable and encouraging this forum is, I'm glad you've found it!
Please know that ~40% of SS sufferers have negative blood tests (myself included) but this doesn't mean we don't have it!!!! Just wanted to give a heads up in case the results aren't as telling as you hoped for.
Have you heard of the Auto Immune Protocol (AIP)? Some people have found it helpful with healing the gut.

Please feel free to let your steam off here, the community is very understanding and come from shared experience so can offer personally relatable options.
You have been through so much already and yet you're still looking for answers, seeking help which shows a strong character.
Hugs and positive thoughts to you.
Caroline

[Carolina]

Oh my dearest darling scoobieworld!

Our immune mediated conditions (Sjogren's, and others) all cause inflammation and inflammation causes: Profound fatigue, pain, DEPRESSION, and other horrible effects.

The depression is CAUSED by the inflammation and also makes the tragedies of our lives, such as you have suffered with the deaths of your babies and the divorce from your husband, even more unbearable.  Try as we might, to face and address our losses, the depression physically caused by our conditions continues to drag us down.

I have ALWAYS taken antidepressants, scoobieworld, for depression and for pain.  But the depression of my conditions can swamp even the medications.

Just recently I have experienced a FLARE of my Immune Mediated Condition, so I have fatigue, bone, muscle and joint pain, depression and burning, itching skin (the last is my own particular 'joy).   

Antihistamines, pain medications, antidepressants, all are important to me when dealing with this Flare. 

It will pass, never quickly enough of course, but it will pass.

We are all here for you, scoobieworld.  We all have different lives and experiences but we share so much, and we are here for each other.

Hugs,  Elaine