Sjogrens World Forums

Hello
I am exploring this new world and am looking for somebody to talk to on this subject.
best wishes,
Ballerina

Hi Ballerina  :)

Welcome to Sjogren's world. I'm not in the category you are interested in although hypermobility has been an issue. I just wanted to say welcome!

Take care - Scottie  :)

Welcome Ballerina, I am sure I have read of someone here being a dancer in the past.

                  (Mind.. my memory shoulden't be bet on!)

                 If you go back through the threads you may find some answers to your apparent worries..

                   We have people from all walks of life , and some very knowledgable ones too!

                     Do you think you might have SS, if so you are at the right place.. 
                      I hope that you don't ,as your dancing must be  so close to your heart ....

                                  I do know that  a lot of extremely hard work goes into this dancing , but as Ive said there could be someone who just might have some ideas of what it is you are wanting answers to....  Please com in often, and hope you find some help,  good luck , Dolly

Hello
How sweet of you to respond so quickly!
I?ve had a very tough year and performances were soo painful. First I thought
there was something in my pelvis causing this terrible stiffness.
Then I became weak. I?ve had fevers. And lack of energy.
Some days I feel I won?t wake up. I take danceclass asleep...
I thought I was lacking iron.

Now I just have to confess to myself that the symtoms
I have are too strong to ignore.
And all that together with superdry mouth and dry eyes.

I immediately changed diet to lactose free, gluten free. meet free.
I also take some oil and it at least helped my eyes. Joints are less painful.

Tomorrow I will see an eyedoctor.

I wish you strength and courage, all you brave people here!
Love from Sweden

Hi Ballerina

Welcome from me too. Good luck with the eye doctor tomorrow.

Kathyx

Hi Ballerina

I don't dance, but my paradise is riding horses and walking my three dogs.  Some days it is hard - painful joints, extreme fatigue and sore eyes - but I find the meds I have now have helped me tp continue to enjoy this passion.  I hope you find something that helps you too - ballet is a wonderful art  :D     xx

Hi Ballerina,

I am not a professional dancer, but was addicted to salsa.  I have more or less given up my dancing.  I used to go to a class everyweek and then go to clubs and dance for hours at the weekend.  My husband and I used to practice at home, we bought our living room furniture so that we could move it easily to make space for dancing  :) .

I guess the first thing I noticed was the lack of energy, and it was kind of like halfway through a dance my batteries were removed (like the bunnies on the adverts who don't have duracel batteries)

Since then I am struggling with my dance shoes, I guess my toe joints and knees are struggling with my heels.

I am now saving energy for a few club nights a month, and then deal with the consequences.  I find that the adrenalin kicks in and I can (if I rest up the night before) still enjoy myself.  I tried going and just watching, but the feet just want to move  :)

I really feel for you, it must be so bad if this is your job, your life and your passion

Take care

To all sweet people

I was diagnosed today. Yes with Sj?grens Syndrome. I live in Sweden where dr Sj?gren came from. The eyedoctor however didn?t give me any numbers of the Schirmer?s test. It says "None measurable something!" But he told me even though my tearproduction was way too low, it had good quality so I might not suffer so bad. As I told you I already started to treat myself with a new diet and this alternative medicin from a flower (nightlight in Swedish) that gives body more oil. It helps the pain and the drness. Tell me your experience! I?d like to learn it all. And I wish to continue my brand new job in a theatre I would love to work in for the rest of my life. If possible. Do you guys cope with work and all?

with love from a shocked person in Sweden

Ballerina

I'm glad you got the diagnosis. I'm sure you will have lots of emotions over the next few days, shock being just one of them. However, so long as you get the treatment that you need, that's all that matters.

Another welcome from me.

Kathyx

Hello Ballerina,

I am sorry to know you have this, but glad that at least you have your answer to what must have been very puzzling for you. I say I'm sorry because sometimes I just get so tired of knowing more, especially younger ones or those with full active lives with dreams that demand a strong body may be affected by this.

However there is ALWAYS hope that you will be one of the ones less affected. I am now 46 soon to be 47 in a few months, I was dx in my early twenties and have managed to live a very active life with little ailments at times and many years without any at all. You will find that this disease is a individual one, it affects one in one way and another in a totally different, but the thing is we all manage our lives, both the ups and downs.

I used to love to dance, not professionally, but I taught 14 or so teens hip hop and believe it or not I had more energy that most of them! And this less than 4 years ago! LOL! Now I have my good days and my not so good days, but the good surly outweighs the bad by far!

You will find your way through all of this, will come to a reasonable acceptance and will learn your body's needs, all in time! Just do your best to stay as positive about it as possible.

Know that you are not alone, so when you need someone that understands and cares remember us!

Peace and Be Blessed!
Bernice

Sorry to hear of your diagnosis. I am in the same position, recently diagnosed and still in shock.

Re. the dancing, I know it's not quite the same but there are rheumatologists in this country that specialise in sports-related joint problems, there's actually one at my local rheumatology department (though no one who has a clue about Sjogren's, sadly). It might be worth seeing if there are any in your part of the world, they might be able to help answer questions about how you cope with joint/muscle issues as a professional dancer, and also suggest specialist physiotherapists to help if there is a problem which needs rehabilitation. I know it's not quite the same, but we race/lurecourse our dogs, and it makes all the difference being able to take them to specialist vets for sporting injuries; the advice they give on physiotherapy/rehabilitation is much better than general practitioners.

Dear friends on the other side of the Atlantic,

I feel good to know you are here too and I am so grateful for
your sharing of knowledge.
I just turned 42 and I have two children, 9 and 11 years old. One has
diabetes type 1 since 2002. Both are totally lactose intolerant.

Is there any book to read about Sjogrens? Sjo with two dots means lake
and gren is a limb. Lakelimb, that is the name.

Love to you
Ami

Hi Ballerina and Welcome,

  You joined a really nice community.  If you have any other questions, this would be the best place to ask them. : )

  I'm not a dancer, but I am classically trained singer/musician (there are other singers/musicans here as well).  I was just diagnosed with Primary Sjogren's in August 2009, and I emphasize with you and how you're feeling.  For me, Sjogren's has affected me a little differently.  I'm 24, and I began experiencing severe, painful facial spasms in July 2008.  The spasms were debilitating to the point where I couldn't eat solid or soft foods for a week, and for a month, I couldn't open my mouth no more than the width of two fingers.  I couldn't sing at all for two months, and I had to go on Short-Term Disability at work.  By the end of December 2008, I was trying to train for Grad school auditions, and I experienced a new symptom where I was feeling upper back spasms.  It felt like the intercostal muscles were tightening and while this was happening, I couldn't take deep breaths.  It was a very painful experience, when it first started.  It still continues, but it's not as painful.  I had to cancel my application process and auditions because I did not have the proper breath support to complete my songs.  Not to mention, I just wasn't sounding as strong as I normally would've. 

You asked if there are any good books to read about Sjogren's, and I did check out two which you might like if you haven't read them already.  The first book is, "A Body Out of Balance: Understanding and Treating Sjogren's Syndrome" by Ruth Fremes, M.A, and Nancy Carteron, M.D.  The second book is, "The New Sjogren's Syndrome Handbook" by Steven Carsons M.D, and Elaine K Harris.  Both books have really great information, and they touch upon different things that the other does not.  I would recommend checking out each of them from your local library if you haven't already.

Many blessings and wishes!
~Music

Hi Ballerina and Welcome to Sjogrens World!


As the others have said...you will find a lot of information here on these pages, but if you cant find something in particular that you are looking for...feel free to ask and someone will always be along with some helpful information and support.


At the top right hand section of the pages..there is also a link to some good books on Sjogrens along with some reviews about them. The 2 books that Music mentioned are also listed here.

Glad you found us....

Hi Ballerina
So sorry to hear you have been struggling so much recently, it must be so hard trying to cope with the SjS and your job and I truly hope that you start to get some treatment very soon that may help you.

I started ballroom and Latin dancing at the age of 6 and went on to do all my medals then competition dancing, when I married the dancing got sidelined until I picked it up again about 10 years ago and became a serious amateur dancer, doing a few competitions along the way.  Unfortunately my joints started to trouble me, plus my energy levels started to dwindle and the amount I could do became less and less until 4 years ago I was just about managing a salsa session once a week.  Not long after that I got my diagnosis of SjS which explained a lot of things and started on Plaquenil which has helped with a lot of my symptons.  I've not danced now for about 3 years and yes I miss it terribly, but have recently been considering trying a gentle class for perhaps an hour a week to see how I get on.  Things may be different for you, dancing is your job and I was trying to combine keeping up my job with my dancing as well as running a home etc.,and I physically couldn't manage it.  I honestly hope you find a way to keep up with your dancing, and don't forget it affects us all differently so my story may be entirely differtent to yours.

Please keep us up to date with how you are getting on,
Love
Wen x

Hello!

I suffer with you. What a terrible experience with those spasms.
Last night I was able to find the books you mentioned from a Swedish internetshop.
I was amazed there are no books in Swedish, yet the disease was named by a Swedish doctor.
I?ve written a book on what it?s like to be a parent of a diabetes type 1-child.
I hope it will be published by someone. Maybe I should write a book
on Sj?grens in the future.

Do you know why you got the disease? I know there might be no answer.
As for me I blame myself a lot, for I?ve done crazy crazy things. Many times
I?ve been performing with hight fevers. And I?ve been working in places
trying to convince people how important art is, like banging my head in the wall,
and receiving no thankyous. I think the last one has been the most stressful and
this is when I started to feel the symtoms really really strong.
(Yet, I have been healthy all my life. I don?t do drugs. I exercise.
I eat good food. I go to bed early...blablabla...)

But when I got ill again this August, I was doing the most wonderful dance project in lappland. It scared me. I would love to think that
if you do things that make you happy and you feel you do things for other people,
then you will stay healthy. You will not become ill. I was sure it was just lack of iron. But it wasn?t.

I feel life is laughing at me. There are so much to think of and to understand now.
I called the reumathologist today. It made me depressed. People in stress.

and then I blame myself for blaming myself. And I think of all brave people, like my son,
and you, who all are fighting for your daily lives.
I guess I just need to be both hopeful, miserable, complaining and fighting.

Again thankyou! Let?s keep in touch.

Ami

Hi Ami and welcome:

A lot of people here have given you good advice so far.

While I am not a professional dancer, one of the things I do is practice and teach Japanese tea ceremony, and this requires a lot of whole body movement - walking a certain way, getting up and down from the floor using just the strength in your thighs and core trunk, and so on. My form of Sjogren's affects my balance, among other things. The doctor told me that without my tea practice, I would likely be in a wheelchair, as the balance problem is so severe. So you may find that Sjogren's eventually changes how you do your dancing, but you may also find the dancing has given you some tools to help you.

Often the fatigue is the most challenging part of this disease - you get partway through something and simply can't go on. For me that means shorter tea performances, or arranging them differently so I don't have to stress the joints around my pelvis so much.

Please let us know what you find out from the rheumatologist.

Genko

  Hi Ami, I see you are now learning fast about Sjogrens..

                                                        In answer to your query as to what causes this affliction, no-one can answer that !

                         All we know is that the immune system starts attacking ones body, and it can attack just about anywhere,

                                                                                             so we all just live in hope!!

                          You certainly sound like an up & go girl, & I'd love to see a book written by you about SS  sometime soon in the future,

                               I too am surprised that there are none available in the country from whence  this man hailed from..
                                                                                                                                     
                                                                    Best wishes  Dolly x..

good morning! Ohayogozaimasu!!

I have found out there is a woman my age in Gothenburg who has Sjogrens. She is also new to this.
I practise nihon buyo. But last time I taught nihon buyo to some iaido students I noticed my hands
were so painful that I found it hard to grip the fan. I had no idea about Sjogrens (Lakelimb) then.
I just thought I was catching a bad flu. I love tea ceremony. I sometimes make my own macha.
I learned how to whip it at Urasenke in Kyoto (only 3 classes) My nihon buyo sensei
is Nishikawa Senrei in Kyoto. I think I am the only nihon buyo dancer in Gothenburg.

I am thinking how to work with the fatigue. You must be experts. You have learned
when to give in and go to bed or just try to get on? I am often so tired I could cry.
But when I go to bed I feel like dying. I feel worthless and I worry my husband has to
work too much.

I had a big argument with my husband yesterday. I told him to do some kitchenwork.
He was too tired and I freaked out. I acted like a teenager. It was just horrible.
I even accused him for making me ill...  :-[
My youngest son cried. We are friends now, but I wish to have some calm in the house.
So much to deal with. Who will vacum clean?
I wish we had a butler...

Today is World Diabetes Day. I will sell some hedgehogs to raise money for
juvenile diabetes. What is the symbol of Sjogrens? Do you show people
that you have this, with pins or T-shirts?

Yours again from autumn-Sweden
Ami

Hi Ballerina,

Let me also welcome you to the SJS World and family!  Like the others have said, please do look around as there are just tons of topics that you might find interesting.

I'm glad that you got diagnosed fast, and it's good to see that you have doctors that are on top of the situation.

Again, welcome and hope to chat with you soon!

Take care -

Patze

Evening Primrose Oil is what I try!

Hello and welcome from me too, Ballerina,

Your posts are very charming, even the one about the fight with your husband.

We all know EXACTLY how you are feeling and understand the difficulty that comes with fatigue and needing to cry with it!

Most sincerely your friend,
Janna

Thankyou.
I cooked healthy food yesterday, then got so weak and had pain in hands.
Very frustrating. Had to sit down with closed dry eyes.
I boiled rosemary tea. It tasted wonderful.
Have one yourself!
Rosemary leaves and hot water. Soak for 30 min or so.
Lovely.
I think of you heroes and heroines.
Yours,
Ami

I was studying to be a dancer as a young man.   I think success eluded me because even back then I struggled with stamina.

Ballerina,
This is another thing I enjoy about this site, I get to learn more about other's customs and such. You said a whole lot I had no clue about, I think it was some kind of dance you do, right? BUT in the same post you spoke about selling "Hedgehog" for a benefit. Now me coming from the mid south of the USA I would think I would know what that was, after all it sounds like something we oughta have around here. Just what is hedgehog?

Bernice

Hello!
Good news, I will se a reumathologist in Nov 27th.
At first they told me I had to wait for 3 months, but as I told them what the eyedoctor said
and what my profession is and that I start a new job on Wednesday and don?t know how to handle it.
I hope my doctor will be a good one!

Hedgehogs are native to Europe, Africa and Asia. Because they have spines allover their backs someone thought they
would be perfect associated with juvenile diabetes. So they made the hedgehog the symbol.

Have a great day. I am tired and I am freezing. :-(
Ami

Bernice you are pretty cute!  I'm from Texas and was wondering if a hedgehog is a spiny version of the armadillo?

Ballerina,

You don't sell live hedgehogs, do you?

Janna

No no the hedgehogs are cute soft toys...
They are close to echina?? in Australia.

Ami

Hello Ballerina !

I found your post - and would like to know how youre coping ?
Ive always loved dance - all genres - will probably be taking some dance lessons soon and would appreciate input on dancing from you-

Thanks!
By the way I found a list of famous people with autoimmune disease on google search

http://community.wegohealth.com/profiles/blogs/famous-people-affected-by

Hi Ballerina

Welcome to our little community.  I was diagnosed just about a year ago.  I was diagnosed with Fibromyalgia before that .  I'm 50 and spent 25 years either as a student ballet dancer followed by teaching.  I used to love teaching children ballet but had to give up 12 years ago as I was diagnosed with cervical spondylosis and found the teaching too hard.  I was very hands on and kept fit up until then.  I also had osteo-arthritis which led to a knee resurfacing operation in 2006. I went down rapidly from then. 

I HATE not being able to dance.  My body itches and twitches when I hear music and I long to be able to plie and grand battement to my hearts content.  Now, I couldn't even do a full plie in second.  My wonderful balance has gone.  Oh for those days of wonderful long adagio's.  I can't even stand on  my own two feet for long without needing to sit down.  To think that I used to stand up teaching for 7 hours every Saturday.

Now my life is lots of aches and pains and dry eyes and mouth,nose. 

I changed my career and am now a Solcitor (Lawyer).  It is tiring in its own way but I can sit down a lot which makes the day easier. 

I'm in the UK .

Divingdancer (Amanda)

oh the diving part is because I used to love scuba diving.

Hello Ballerina,

I relate to you so much.. I'm currently Directing/Choreographing  Beauty and The Beast and I'm in a flare.  I'm only 37 years old and I'm walking around like I'm 80 and directing from a chair.  I'm two weeks away from blocking out two of my biggest scenes and teaching the choreography and honestly I haven't had the energy or mobility to even begin to work on my choreography (except in my head).  When I'm not in a flare, water aerobics seem to be the best way to loosen my joints up and get in shape.  I wish I had better advice for you but, I'm new to this Sjogren's stuff too!

If you ever need to vent you can always message me.

Good luck to you  :)

Ballerina, I notice you said one of your daughters has Type I diabetes.  So sad for such young ones.  I'd just like to add that my daughter has Type I diabetes too, but hers didn't show up until she was 27!!  In fact, she got the diabetes years before my Sjogrens diagnosis.  In fact, she was the first to come up with something autoimmune.  She also has to have her thyroid removed a year after the onset of diabetes.

I'm sorry you and your girls have to suffer, but this forum is wonderful.  Welcome.  Lucy

I have treaded the boards (professionally or not) for most of my life, principally as an actress/ singer. As a dancer, I was usually in the chorus! My ballet training has helped all aspects of my life.

I taught high school theatre arts (and loved every moment)  for the last 19 yrs and retired early due to the health issues.  I am still singing in a trio,  although it is getting more difficult to hit the high notes.  Fortunately, the 2 other female singers are versatile :). As you performers know, the theatre life is addicting - it has been hard to give it up, but now I am focusing on improving my piano skills - if I can summon up the energy to get to the piano :)

The comedy/tragedy mask of theatre has taken on a whole new meaning as I learn more about the 'human condition'.  I run the gamut from laughing hysterically to weeping pitifully.  Of course, there are many in-between-moments, as well.  The show does go on...

Quote from: Scottietottie on November 10, 2009, 11:37:59 AM
Hi Ballerina  :)

Welcome to Sjogren's world. I'm not in the category you are interested in although hypermobility has been an issue. I just wanted to say welcome!

Take care - Scottie  :)

Hi Scottie,

You say hypermobility has been an issue?  When I first went to my rheumatologist he diagnosed me with benign hypermobility syndrome after seeing all of my joints were hypermobile but then decided to order blood tests due to other symptoms (like dry mouth and swollen salivary glands).  My blood test came back positive for SSA and ANA and he then diagnosed me with Sjogren's.  I wonder if hypermobility is a trend with us?  I know I get tendinitis frequently and I now attribute that to being hypermobile. 

Thanks for sharing!
Shelly

Shelly

I have hypermobile hips and knees - only diagnosed a couple of years ago, and I'm almost 55.

Kathyx

My understanding is that people who are hypermobile are more likely to suffer from arthritis. My youngest daughter is ridiculously hypermobile - all her joints apart from her hips. She has hamstrings and has been told it is her body's desperate attempt to keep itself together!

I once watched a podiatrist dislocate all her toes and then pop them back into place. (It didn't hurt her) He was just demonstrating to me how loose a lot of her joints are. She's absolutely incapable of picking up jugs or pans of liquid with one hand. Her wrist just keeps on travelling backwards!

I'm not that hypermobile but when I had a knee replaced I kept complaining that it didn't matter how much physio I did - it wouldn't straighten like the other leg. The physio gently pointed out to me that that was because the other leg wasn't straight - it was hyperextended.

Take care - Scottie  :)