Questions, questions; lost and lonely

[littlelou]

Hello.

I posted the other day on the Newbie board and got a lot of great support.

I'm particularly interested and wondering, though, if anyone gets dizziness and instability, and just kind of a STRANGE feeling overall...? It's been like this since my symptoms began. It intensifies when I stand for long periods. I think this (and the fatigue) is the worst part for me.

Also, can you pinpoint the exact moment you really felt unwell?

I've heard you can have flares. When you're not having a flare, do you feel normal? Or are you symptoms present to some degree?

I can't imagine a life like this. It seems like there are so many years before me (I'm 26), and I know I would be blessed to have them, but I can't imagine living them like I've spent the last four months. And no one gets it. No one can know your pain like you do because they don't live with it 24/7. Even those who love you, they can't totally understand what you're going through and I envy people because they don't have to feel this way.

((sorry: crys))

Thanks, guys. Any answers/input would be appreciated.

[Dolly Dimples]

  Poor Little Lou, I do really feel for you,  The symptoms you describe could well be attributed to Sjogrens, but also to other complaints. e.g stress --which can magnify any symptoms...  Some symptons go away for a time ,but for me I am always dry,dry mouth & eyes .. dizziness can also come & go, fatigue is a problem with most of us.. But you should wait until you see your rumy and if you are truly diagnosed with something then the appropiate medication will be given which can help to lesson the symptoms. You are young to be having such troubles to deal with but you will get a lot of warmth and advice on these boards. Of course you are scared, but you will come deal with what ever comes along  as you learn more about your problem.  We have all gone through all of this as you are experiencing  with family& friends..  People just don't sympathize with anything that they haven't had themselves, so just ignore any remarks ,but keep vigilant... Good Luck for your appointment.  Hugs and sympathy, Dolly

[Scottietottie]

Hi Littlelou 

Flares are not uncommon. So if a flare happens - a flare also subsides! Keep hold of that thought! Flares can go on for days, weeks or months - but not everybody has them. SjS seems to affect everybody differently. There's no predicting how it will go or what symptoms people will experience. Some get off 'lightly' and others don't.

Like Dolly says - dizziness maybe connected to SjS but there are loads of other things that can cause it, so mentioning to your doc would be worth your while.

I certainly couldn't pinpoint exactly when this began. Some may be able to - but not me.

There is life after SjS however. I had a 'remission' that lasted for years at one point. SjS is not terminal - just interminable. Most of the symptoms can be alleviated.

Take care - Scottie 

[Sjenny]

Hi Littlelou:

I think you are very insightful for a young woman.  You are right, nobody who is not suffering this doesn't get it, because it's not like a broken leg, they can't really SEE your discomfort and fatigue.

I know some people, even doctors, who think this condition is a life sentence, but I refuse to believe it - there is new research and hope around the corner.  See https://sjogrensworld.org/index.php?topic=7248.0

https://sjogrensworld.org/index.php?topic=7114.0

Hang in there!

Sue

[littlelou]

Thanks. This is hard--not being well. Makes everything else that I thought was big seem small. Insignificant. ((Sighs.))

[Scottietottie]

Hi Littlelou 

My 24 year old son could so identify with that feeling. He had a bad bout of illness when he's just turned 20 and was ill for a year and a half. He eventually recovered, though he's not high on energy, and he went to College. He was amazed at what a big deal a lot of students made out of things that he now considers trivial.

I know that's not the same position you're in because SjS you're stuck with. There is life after SjS though and hopefully remissions along the way. It's not a bad thing realising what's really important and what's not though.

Take care - Scottie 

[JannaLee]

Lou-Lou sweetie,

My experience is still new (diagnosed 10 months ago), but I'm kind of expecting periods of wellness (with lessened symptoms) mixed with periods of illness.

I'm 47 but realize I've been sick with this since my teens.  I guess I've always pushed myself (with a deep feeling that I'm lazy because everyone else's life looked effortless) to function when I felt terrible. 

I think living that way caused me to feel depressed and anxious.  There was always that internal voice telling me, "Shame on you, get it going!"

Now that I'm diagnosed, I have EXTERNAL voices saying it! (Friends who admire bravery and stoicism, and abhor complainers!) Ugh!

My hopeful part to tell you is that I'm feeling so much less awful these past couple weeks.  I think it's due to Plaquenil.  I felt somewhat better after 6 months taking this stuff, but am starting to feel a LOT better at 8 months. 

I've read on this site about people who went into complete remission for several years...We can pray for that.

Can I pinpoint when it started?  Not really, I had dry eyes as a teen (and lots of related illnesses) and often a feeling of terrible fatigue.  When I was about 30 years old we moved to a new house, and I remember suddenly feeling distinctly unwell.  Over the years since then I never stopped feeling that way and eventually decided it was some sort of emotional problem along with getting older.  NOW I know different.

I hope your story will be better than mine because you were diagnosed so many years sooner and will get earlier medical intervention to slow/stop progression.

There is promising research and a cure might be on the horizon...We can pray for that too.

Wishing you to feel better, Little one!
Janna

[littlelou]

Thanks, Janna.

I guess I'd been living the past four months feeling deep down like something was truly wrong with me but hoping that it would just be a virus. It was awful, but there was more hope to return to normal. Now suddenly a virus seems like a treat. It's just: the difference in my life is staggering, as I know it is for everyone here. I want so desperately to go outside and play disc golf or trail ride. I took all those things for granted. Now I rest after making the bed.

Also, I never really thought about people with chronic diseases--or even those of us facing the possibility of one--could feel so guilty. But I do. It comes with my sadness. I feel bad that my new hubby, my parents, my friends have to rearrange plans, life around me. I feel like I'm watching as it all--as life--goes by me.

[littlelou]

It's crazy to me how long it takes diseases to be diagnosed. It's getting a doctor to believe you. It's getting a doctor to order tests. It's those tests coming back normal and the doctor telling you to "live your life and you'll forget your sick." (Real quote.) It's finding a new doctor. Then another new one. It's not knowing who to believe. It's convincing yourself that you have to be persistent if you believe something's wrong. It's waiting for new appointments. It's battling with insurance. It's waiting for tests. First conservative ones. Then waiting for results. Re-testing. Then testing for other things. ARGH.

Janna, I think you're right. I think that there will be really dark times and not-so-dark times. I'm hopeful from Scottie's few years of remission. And your experience with Plaquenil. And by the support given here. Every time I read a thread, I'm amazed at how people have gone from strangers to friends who've never met to lifesavers.

[ohiolady]

Aw, littlelou, I feel so bad for you.  My daughter is your age and I would just hate it if she had this illness.  I came down with this illness two years ago.  It hit me suddenly and very hard.  The first year and a half were very hard.  I went from being a very active 51 y/o to being immobilized.  I would get up every morning and say I only have to get thru today.  One day at a time.  I was depressed the first year with Sjogrens and I had to grieve the loss of so many things we take for granted.  Quite frankly, I felt sorry for myself.  But, in time, I've started feeling better and resuming more activities.  Do not give up hope that things will turn around for you.  Autoimmune illnesses can and do go into remission.  That doesn't mean that you will be rid of all your symptoms but you can feel better.

Hang in there!!!!!!!!!!!!

Anna

[JannaLee]

I agree with everything Anna says too.

Like you, I was just sure I would get better and then after I was diagnosed I kept hoping the lab made a big mistake.

It's starting to sink in now and I'm grieving less but it cuts me in half to see the worry in my 2 son's eyes when they were here for Thanksgiving.

Your description of the whole "Medical Diagnosis Process" is right on and wears us all out.

Thinking of you and getting real emotionally attached!
Janna

[Sjenny]

Your description of the whole "Medical Diagnosis Process" is right on and wears us all out.

Right on! And some of the diagnostic procedures are as brutal as the disease.

I think I'm starting to see a pattern too - if the docs are frustrated regarding the diagnosis, they label the men as "stressed" and the women as "depressed".  (Hey, what if I want to be "stressed" rather than "depressed"?  Is that an option?  I think I should get a choice, here.)

Sue

[littlelou]

Awww, Janna. I'm sorry it hurts you to see your sons look at you with such worry. But that means you must've done a good raising them. Their worry means they're compassionate, loving, and caring, and I can't really think of better qualities than those.

Sue, I agree on the depression part. I've been told that so many times recently. I always answer, "Well, I may be now, but I wasn't when all this started." So many docs tend to point to depression if they don't know what's going on and don't care to investigate. Or they simply say it's a virus. "What virus?" I ask. "A virus," they answer.

[JannaLee]

Lou Lou!

I love your response to the doc. "depression/stress" remark so much!  I would like it embroidered on a pillow for my living room!

"Well...I may be depressed ("stressed" if your a man) now, but I wasn't when all this started."

Thank you for your kind words about my son's.  Honestly I don't know how I got such good ones.  I love them more than anything!

Sue,

I want to switch to "stressed" too!

Love to you all!
Janna

[iluvbooks]

Hi Littlelou,

I became ill with Sjogren's when I was 26--19 years ago! I understand your frustration and depression.  Being chronically ill at 26 is difficult.  All of your friends are having great lives, and you have to worry about indoor heating!!!!  I hated being different, and I hated having to take more pills than most friends' grandmothers!   It is very unfair, and you are right, no one understands the pain.  I remember the hardest part for me was knowing that I wasn't going to get any better, and I was possibly going to get worse.  But that isn't true.  You will actually begin to feel better once you find the right treatments--I promise!

Hang in there!  It will get better.

Dawn