Any dancer or physical actor with Sjogrens in this forum?

[Ballerina]

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

[Scottietottie]

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 

[Dolly Dimples]

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

[Ballerina]

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

[Katybarstool]

Hi Ballerina

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

Kathyx

[jaygee]

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       xx

[Bonnie]

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

[Ballerina]

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

[Katybarstool]

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

[Bernice]

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

[~elizabeth~]

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.

[Ballerina]

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

[MusicismyLife19]

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

[lynnmarie219]

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....

WELCOME TO THE FAMILY! 

[wen.uk]

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