Newly Diagnosed and don't know how to feel...

[MusicismyLife19]

It's been almost a year, and I finally got a diagnosis yesterday.  I saw my Rheumatologist for the second time, and the blood work which was specific to see if I did have Sjogren's Syndrome, came back positive, along with the ANA test which also came back positive for the third time in a row.  My Rheumatologist wants me to get a lip biopsy, and she wants me to get an "xray" of my glands to see their status.  Along with those tests, she also wants me to start taking Fish Oil and Plaquenil.  The final diagnosis is Sjogren's and Secondary Fibromyalgia.

This is all very overwhelming for me, and I know there are other diseases that are worse, but I really don't know what else to do other than cry.  My boyfriend came with me to doctor's appointment, which was supportive, but then he said, "Well at least it's not that serious".  I felt it was kind of insensitive of him to say that because from what I've been reading, it sounds like it can be very serious, and the symptoms I've experienced since July 2008 lead me to go on Short-Term disability at work because I could barely talk and eat hard foods.  Then my parents who live in a different state are kind of having a hard time trying to digest this information as well, especially my mother.  I spoke to her today and she said, " You sound down." and I replied, "Well, yeah I just was told life changing information".  Then she went on about how I shouldn't be feeling so down because there are worse things out there that other people have.  I know that, and I am very grateful, but why am I not allowed to mourn?   I am NEVER going to feel completely normal again, and I haven't for a while!

I'm sorry for the venting and the rant, I feel very upset/sad and kind of alone here.  None of my friends, family or even my boyfriend have ever heard of this disease.  To be quite honest, I never heard about it myself until the Rheumatologist was suspecting this could be one of the triggers for what was causing all of my symptoms.  I was doing so much research on other stuff, but I didn't really think it could be Sjogren's.

Anyway, I would appreciate any help, suggestions, and advice about what I should do about the lip biopsy, plaquenil and how to deal with the diagnosis.  Thank you so much for taking the time to read this. 

[Billydude]

I think your boyfriend is just trying to assure you that its not fatal or anything.  Give him a break...he's there which is more than many of the Sjoggies here can say.  People sometimes just don't know what to say.  If I had a nickle for every person who just said "well we'll all getting old with our ailments".
If you have positive blood work results I think its unnecessary to get a lip biopsy.  Many of us have negative blood work results so the lip biopsy is the one final thing that gave us a diagnosis.   I say skip the lip biopsy!!!!  Many have had lasting lip numbness from the procedure.
All I can say is that it seems overwhelming at first but we all just learn to incorporate it into out lives.   We've had all the little symptoms all along and now the only difference is that we have a name to put to it.   I remember when I first received my diagonsis I was relieved!   It had been a long road to get to that point and I and elated to have a final diagnosis and a name to put to it.   I hope this helps just a little.   If nothing else this site is a life saver.
Steve

[kimbo]

Hi music,

And welcome to a great group of pals that come together and share our sjoggie journeys.

I agree with Steve. In fact my Rheumy said if you have a positive test indicating Sjogren's , it is not necessary for a lip biopsy. I would simply ask your Rheumy , why is it necessary?

It is an acceptance process that we all go through in wrapping our mind around a new situation in our health. Loved ones and relatives have a hard time understanding it. Its almost a denial response as, they really don't want you to be ill. I suggest you find a good article that explains it in a way that they can understand. Place that in their hands and express you need them to understand, so your not alone in your journey. No, it is not as bad as some deceases, and we are thankful, but it is still life altering.

We all here have our times of ranting and feel angry because life is not what it was. But it is what it is, there are good days and bad. Make your self at home and read thru all the threads, just lurking and reading , you will find many answers to your questions.

You will find lots of encouragements, compassion and understanding . Post any specific questions and there is so many on this forum who have very good advice and lots of information.

What are your symptoms?
We all have varying symptoms and levels that we deal with at different times. Mine all began with paratid tenderness and swelling of glands/ In 07 I have never been as bad as when I was diagnosed. Fatigue and almost flue like at times. I am fortunate, as I am not as severe as some on this board.

What is your involvements in music being your life.   
Glad you found us.
blessings, kimbo

[jonnell]

Hi Music,  Im sorry u are down.  People say the same thing about my 4 year old having sjs.  Well at least its not cancer or something serious they say.  Then they ask what it is.  I got tired of trying to explain so I just say it is the sister disease to Lupus  that gets a little more sympathy but not much.  Peoples lack of knowledge about sjs makes them say some dumb things.  Maybe you should invite your boyfriend or your mom to visit this site and read some of our posts then they might understand just how hard living with sjs is.  Id give anything for my daughter to have a normal life but sjs is just a part of who she is and it makes her understand and have empathy for people with disabilities.  We just tell her she is special and we just need to love her more.  I hope you feel better you are in our thoughts and prayers.  Hugs and Kissess   Jonnell and Jenna.

[Linda196]

Hi and welcome, Music.

I am NEVER going to feel completely normal again, and I haven't for a while!

This is true, but what we sometimes forget is that our lives change regularly, what was normal for the teen age girls isn't for the young adult woman, and her normal changes for the new mother, again for the mature woman regaining her Independence, and the older woman leaving behind some of her professional activity. The problem here is, this change wasn't expected, natural or chosen...it was brought about by disease and naturally we resent it! Over time you'll find it becomes your "new normal" and you will cope with it. And always remember, we are all here to help you, as well as to get help for ourselves.

When people say things like "it's not serious" or "lots have worse problems" they are reminding themselves that what you have isn't fatal, they aren't in jeopardy of losing you. When it starts to sink in for you, try to find a way to let them know that, although you appreciate their efforts to make you feel better, there are times that comments like that feel "belittling" and that you feel that they are making you feel that your symptoms aren't of any concern....personally, I'd rather hear something like, "I know you feel miserable, but you seem to manage so well and look so healthy, I'm always wondering if there's anything I can do to help!" If you think it might help them understand, please invite them to visit this site, we welcome family involvement and even have members who are not patients themselves, rather are here to support a loved one.

As far as the lip biopsy goes, I'd skip it too, and ask exactly what the doctor expected to find from it that the blood tests haven't confirmed. It seems she is ready to treat you without it, and that's the important thing. Plaquenil and fish oil are both appropriate, and many people find either of them to be very helpful.

[wednesday mc haggis]

music

i understand exactly how you feel, i think most of us do.

yup everyone you know is right there are worse things, but your not dealing with them, your dealing with this, and its a right hook no matter what way you look at it, i know it was for me.

   6 months ago i was in pain, looking at life at 37 like it was over, and cried alot. I cant say anyone in my life knew how i was feeling except one firend being tested at the time for lupus, now turns out to be fibro and hypermobility for her.

  the thing is, what your dealing with is the initial shock and YES the grieving process, what i couldnt understand when i came here was how pl could be so positive, until i realised at the ending of the grieving tunnel, came exactly that for me too

   My partner said well least its not cancer, and my mother at time thought i was exagerating it all, and it sure is one lonely time, but i doubt unless it was you yourself youd fully understand it either, i know i didnt.

  You l go through 50 emotions, and then another 100, but trust us all when we say one day you l not be dealing with quite so many, and the day after you ll deal with less, your young and you got fight in you, youve just been overwhelmed right now, and that stress will make the condition alot worse, so in a way your dealing with it all at its worse right now.

Yup it can be serious for some, others quite mild, its individual is SJS, and dealing with it hour by hour even right now will just get you through it.

   One day i found my fight again, and after being told id never work again, last night i retnred to the job i love

  Just dont be hard on yourself right now, its not a nice time, and come talk here to ppl who know exactly how newly diagnosed feels, and get support and information, i know it helped me 50 fold


thoughts with you music

T x

   

[perry]

I'm still struggling with accepance after a year of diagnosis. Actually, I think my doctors unwittingly helped me with denial because dry eyes and dry mouth didn't become an issue until 5 months ago and we were busy looking for another reason for the surface numbness on my shins.
My father and older family are of the pull yourself up by your bootstraps and quit whining sort. My kids 17, 22, 24 are great but it's still hard for them to grasp what they can't see and Mom's not invincible.
It can be lonely. Coming here is helping me a lot.
It seems that this is a very unpredictable disease and I've placed having top notch doctors as a priority. I've quit 2 rheumy's and will drive 1.5 hrs to Boston for a specialist.
And I just keep figuring that I'll be one of those folks that responds well to treatment and has minimal issues once I've figured it out and can focus on doing the things I love from now on!
One day at a time!

[Chickpea]

Hi Music...

I'm so glad that you found us and that you feel able to tell us how you are feeling.  As you can see, what you're feeling at the moment is very 'normal' and familiar to all of us.  Diagnosis is the beginning of the journey rather than the end, and when we get the diagnosis of SjS it leaves us in an odd place because it isn't an explanation others understand.

One thing I've realised - and Linda is right about our nearest and dearest reassuring themselves with their 'other people have worse' and 'it's not cancer' comments - is that other people's responses tell us more about them than they do about us.  I'm sure for some lucky people a life-changing diagnosis like SjS means that their families rally round and are as kind as can be.  For most of us it's business as usual, with all the family 'games' in play.  For example, I don't tell my Mum much because she likes to match symptom for symptom and then outdo each one!  I've come to accept that that's just the way she is and I don't look to her for support.

You need and deserve lots of love and support right now.  We're here and happy to give that, and then in time you'll be doing the same for others.  Maybe your boyfriend and parents just aren't able to give you what you need at the moment, but their love for you is just as true.  They're also overwhelmed and worried.

Take care - Chickpea

ps One thing about feeling 'normal':  you have a new sort of 'normal' now and it's how you feel each day.  I describe it to people by saying I've aged 30 years in 3 years, which makes me 78 as far as my walking, thinking, ability to work and need to rest.  As I have lots of friends in their 70s it works out quite well!

[dbab]

Hi Music,

Welcome to our SJS family. 

It's very hard, especially in the beginning.  When we first get a diagnosis, it hits pretty hard and then what do we do?  We read about it via the fabulous internet  and we get LOTS of very overwhelming information.  You know when I first was told that Sjogren's was what I had, I read all about it and I read so much info about lymphoma that that is what I started obsessing over.  For weeks!!! 

This is a hard disease to tackle but you will learn to cope with it the best way that works for you.  This place is great because you can learn a lot of great tips and coping methods and you have wonderful people that can actually EMPATHIZE with you (so much better than symptathy!  ).  Medications are probably going to be a part of your life from now on but you will learn to take it in stride.  There will be times where you will get upset and then you will go through times of accpetance and that pretty much happens over and again.  There is a lot of emotions dealing with this but you will find a way to fight through it.

I'm sorry that your partner seemed to be not very sensitive.  You do have to remember that it is hard on them also, maybe more so.  If you go through a diagnosis with them by your side though, it really makes a big difference.  My husband doesn't always sympathize for me (or at least doesn't always show it) but I think about him and what he is feeling.  His wife has a very serious chronic illness that will not only change my life but his as well.  The difference is I don't have a choice to live through it but he does and he chooses to stay by my side.  Men naturally like to fix things and this one he cannot fix.  I know it tears him up inside so I'm sure there is a lot of denial on his part.  I don't talk about every little ache to him because I don't want to be that kind of person.  I do tell him though when I am not feeling well and I can't participate in family things.  He has been supportive but doesn't fully understand.

I hope that you continue here.  Please read through the posts here so you can get a good idea of what real people actually go through and not the textbook editions.  You will see that we can still smile and cope through it all

[MusicismyLife19]

Hi Everyone,

First of all, I just wanted to say, to all of you who have responded to me so far and who will in the future, THANK YOU SO MUCH for your kind responses, your advice, your support and stories.  They have all been a tremendous help. 

Secondly, please excuse my lack of intro in my first post.  I was very upset when I wrote it, and I'm afraid I did not share very much about myself.  I'm 24 years old.  I went to school for music, and my instrument is my voice.  Before two days ago of the Sjogren's and the Secondary Fibromyalgia diagnosis, I was only having to take medicine for Epilepsy, which I've had for nine years.

This past summer (7/2008), I began experiencing very debilitating symptoms: severe painful muscle spasms and weakness immediately following in my face to the point where I had to go on a liquid diet for a week because I could barely eat hard and soft foods.  I was also experiencing stiffness in the front and back of my neck and upper shoulders.  At this same time, I was experiencing confusion, slurred speech, dry mouth/throat, anxiety, huge amount of weight loss. 

A month and a half passes, the facial spasms calm down, and then my knees begin to start up to the point where I can't walk.  The left one would be a lot worse than the right.  It's the same thing just in my knees, and this continued through early September.  At the same time, I was trying to bring myself to apply for grad school because I thought since I wasn't experiencing the facial spasms, I would be okay.  I was sooo wrong.

By mid December, I had been training for my auditions for grad school, and I began experiencing upper back spasms and weakness in my diaphragm and intercostal muscles.  The dry throat wasn't helping much either, and water washes away natural saliva.  I knew at this point I had to cancel my auditions and I had to cancel my grad applications because the schools that I wanted to apply to required auditions in order to get in.  That's how the Opera world works. 

I was devastated because I realized that whatever was happening to my body was getting worse, and I still did not have an answer.  I had so many MRIs, so many blood tests, and still now answers.  I was so depressed.   My body was changing and I couldn't help it.  At the same time, no one understood what I was going through.

After 11 doctors from July, my Neurologist finally recommended that I see a Rheumatologist, and from day one, she was a dream come true.  She was the nicest of all the doctors I have met since day one.  I kept saying, "She was worth waiting for", because she truly was.  She listened to my whole story, she explained everything thoroughly, she encouraged me to ask questions, and she genuinely cared.

However, there are so many questions that I still have to ask, which I suppose is normal.  Have any of you experienced the severe muscle spasms?  Is this part of Sjogren's, or this that part of Secondary Fibro?  What are your symptoms?  I know everyone is different, but what are the flares and remissions like for you?

Thanks again for taking the time to read this.

[Scottietottie]

Hi Music 

Welcome to Sjopgren's world. I really can't add much to what's already been said. I understand you 'mourning' and like any grief - the last stage 'acceptance' does come eventually.

Hopefully now you have a dx you will be given meds which will make you feel better than you are right now - even if you have to get used to a whole new normal!

I'm sorry - I don't have the answer on muscle spasms. I've seen posts about them before. I don't know if they are direstly to do with SjS or whether they may be due to a deficiency of some kind - eg Vit D - potassium - magnesium - but I'm not a medic and don't know.

Take care - Scottie 

[Tryfan]

Hi!  Just wanted you to know that your posts have really helped me as well which is what this site is all about, I suppose.  I, too, did an awful lot of research and when it came to diagnosis, it was a sort of relief.  Since then (very recent), I've been quite shocked at the emotions I've been experiencing.  A book I bought told me about anger, grief, denial etc.. but I thought I would accept it straight away because I had expected it for a long time.  I had to go to the dentist the other day who said that my SJS was not nearly as bad as other people with it... I was so upset because although she meant well, it is so belittling and implies you are making a fuss about something which is not that bad.  It has also been very difficult talking about it to anyone.  I feel like no one will understand and that it is not fair that I burden them but I suppose I need to be patient with myself and understand my own SJS before I'm ready to offload everything.  I'm so pleased that this site exists and I'm glad you've found it too!

T

[Bucky]

Hi Music,

Welcome to the family.  All the previous posts have given you good information - don't think there is much I can add to it.

I would suggest to you to keep a symptom journal or diary and take it with you when you visit the Rheumy.  It can get confusing to remember when symptoms started and ended - did it last hours, days, weeks??  If you think of any questions you want to ask your Rheumy at your next appointment, I'd write them down too.  (I'm good at writing things down . . if I just remembered to take them with me to my appointments!!   )

You can search on this site for specific posts by typing the word(s) your interested in, in the "search" section in the left hand side of this website above

We have several members who are in your age bracket - perhaps they will pop in and make themselves known.

It will take time for you to adjust to your new diagnose - we DO know how you feel.   There are also some great books available about Sjogren's  (check out the books/reviews site that you can get to at the top of this page) - I've got several that I refer to frequently.

Feel free to join us in "live" chats too.  The schedule is posted when they are hosted - just check for your local time.  

Take care,
Bucky

[Nathan]

Welcome Music,
I am one of the aforementioned younger crowd. I am a 23 year old guy, I've been symptomatic for the last 1.5 years or so, and I do not have a confirmed diagnosis yet.
I understand the whole process can be a bit daunting at first. It must be overwhelming that this disease is effecting your life so strongly, especially interfering with your one passion. It can be incredibly difficult from time to time, but just know that there are going to be better days.
Relationships are definitely made more "interesting" by chronic illness; especially if only one person in the relationship has one. As other members have mentioned before, if you show people in your life the way you feel, and what you're up against, it may help them understand, and cope with what you are dealing with. Odds are, they just don't understand.
If you ever need someone to talk to, feel free to contact me.

[Chickpea]

Hi Music

You must be devastated that your voice is affected by SjS.  I know some of us here still sing - Scottie is in a choir, for example - but others like me have found their singing voices have been changed by SjS.

Muscle spasms:  I have these particularly in my legs, as well as cramps and electric-shock type pains in my fingers and toes.  Like yours, they started on one side first (in my case the right) and then developed on the other side.  I've had a series of 'episodes' - like mini strokes - after which I've had numb patches and muscle spasms in parts of my face, throat and tongue.  I think they're part of the central nervous system effect of SjS.  I was initially diagnosed with Primary Progressive MS which was then changed to SjS with cns involvement.  I wonder if that's what's happening to you too?  We're the people for whom the more 'aggressive' treatment is seen to be best:  immunosuppressants/chemotherapy.  The earlier you start this the more effective it is. 

What meds are you on for epilepsy?  Do you need to tailor your SjS meds to fit in with the epilepsy meds?

What are your current plans for your studies?  Are you planning to apply to grad school when you've got SjS under control?  Or apply for a different subject?  It's sometimes hard to stay optimistic, especially soon after diagnosis, but it's important to plan for the future and be as positive as you can.

Take care - Chickpea