Author Topic: Hi Everyone  (Read 3807 times)

nursenoor

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Hi Everyone
« on: July 18, 2009, 06:03:55 AM »
Hello fellow members :)

   My name is Nur and I was recently diagnosed with Sjogren's syndrome. My mother was diagnosed a few months before me with Fibromyalgia and it has been interesting and sometimes frustrating navigating the waters of autoimmune disorders. There are so many questions I have and the changes in my body seems to be happening faster than I can keep up. I am so happy I found this community and hats off to the founders because this diagnosis is overwhelming. I am 25, married and have a 9 month old daughter. I am finding it harder and harder to keep up with her in my young age and I just want to know if there is anyone that can give any advice for managing the joint pain. Also is it true that breastfeeding or rather the increase in prolactin and lactating itself triggers flare ups? I read a blurb in the SjS foundation handbook about this link. I was ready to stop breastfeeding for a min, but I am torn as I know it is best for my daughter and it took a lot to establish it. Also does sjogrens make eczema worse? I guess this might be more related to a food allergy, but I have never had eczema this bad before. Usually a topical steroid just clears it up. Anyone please shed some light on any of these ???: I'd really appreciate it! God Bless all of you.

   Nur

lynnmarie219

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Re: Hi Everyone
« Reply #1 on: July 18, 2009, 08:55:18 AM »
Hi Nur and welcome to Sjogrens World!

You are not alone in the feelings you are experiencing....frustration, questioning, and confusion about the changes in our lives are so very common. Given time and information....this seems to get better....just be patient with yourself!

As far as the breastfeeding...I'm not sure I have an actual answer for this...but I do know that hormonal changes in the body MAY add to a flare...so with all of the changes your body has recently gone through with childbirth and breastfeeding....this could be a reason for increased symptoms. I would discuss it this with your doctor though as we are all different in how we go though this journey called Sjogrens. It  is such an individual process and no two of us are affected in the very same way all of the time.

Eczema (as I understand it) is an inflammation to the skin...so that would make sense to me that if your body is flaring and inflammation is increased that your skin conditions may be worse as well...but again...I'm not a doctor and its always best to check with him or her on any of these questions!

Keep coming back here for a lot more information as you read through the posts...you will also find so much support and friendship here from all of the members....this is a special place!
« Last Edit: July 18, 2009, 01:53:04 PM by lynnmarie219 »

Poochie

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Re: Hi Everyone
« Reply #2 on: July 18, 2009, 10:31:17 AM »
Hello Nur,
Welcome to Sjogren's World.  Aww a new baby, that's wonderful.  I'm not sure about the breast feeding, but I've heard from a few that had babies, that their Sjogren's went into sort of a remission. 

Like Lynnmarie said, this is such an individual disease, it's hard to know what to tell you.

As far as the skin condition goes, if it were me I would definitely see a dermatologist.  It could very well be Roscea that hits a lot of us with Sjs.  I am among those that got it.  However, it's  under control and I haven't had an outbreak in years. 

Take care and again, Welcome to you and the little one.

Pooh

tomsmom

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Re: Hi Everyone
« Reply #3 on: July 18, 2009, 12:26:17 PM »
Hi Nur,
My name is Danni and I also have a nine month old baby.  I also have a four year old.  Concerning the breastfeeding-- when I stopped my symptoms increased with a vengeance.  I wish I hadn't stopped breastfeeding.  A few weeks after weaning my son, I got up one morning and found it hard to walk.  It felt like walking with weights attached to me.  I started getting bouts of enormous fatigue and lightheadedness.  I almost passed out shopping.  I attributed it to stress as my baby was hospitalized for a month and thought it would go away.  After bloodwork, I was diagnosed with Sjogrens Syndrome.  Four months later I feel miserable as ever. 
I also have a hard time keeping up with my children.  So much so that it reduces me to tears sometimes.  I'm only 29 and my body feels so much older.  I also have Graves disease that was diagnosed after the birth of my first son.  The Graves hasn't been too bad a problem for me lately though.  Something about childbirth has triggered both my Autoimmune illnesses.  My ObGyn told me that my hormones wouldn't go back to normal for at least a year after giving birth-- so childbirth, breastfeeding, and weaning--in combination with my body's susceptibility to autoimmune issues has created the perfect storm of misery in my case.  I hope as my hormones even out, everything else will.  I hope that you find this site to be a great resource.  I sure have.  Take care and I hope you feel better soon!  You might consider fish oil to help the joint pain.  It's a great anti-inflamatory. It's made a big difference in my achiness-- make sure you find the mercury free kind.  I use the one from GNC.  The added benefit for fish oil is that it's ok when you breastfeed (as long as you get the pcb and mercury free kind)   If only the fish oil could help the fatigue. :)

Scottietottie

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Re: Hi Everyone
« Reply #4 on: July 18, 2009, 12:33:09 PM »
Hi Nur  :)

Welcome to Sjogren's world. Congratulations on your baby.  :)

I'm sorry you're feeling so rough. It does sound like you're having a flare. Hopefully it will subside.

3 out of my 4 children suffered from eczema and it turned out theirs was triggered by dairy products and eggs. People can have different triggers. It may be an idea to keep a food diary and a symptom diary and see if there is any correlation. I also took them to a homeopath and all 3 are pretty well eczema free now. All will still get 'flares' if they indulge in ice cream or pizza - but that's self inflicted.

I hope you find the site useful.

Take care - Scottie  :)
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nursenoor

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re: Hi Everyone
« Reply #5 on: July 19, 2009, 08:22:39 PM »
Hi,

     Thanks for all the welcomes, advice, and encouragement. I will look into some of the suggestions.

God bless, Nur

Patze

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Re: Hi Everyone
« Reply #6 on: July 20, 2009, 07:18:22 AM »
Hi nursenoor,

Let me also welcome you to the SJS World!  Please do look around the board as you might find some topics that you're interested in.

I'm glad to see that you've gotten some good information and there's not much I can add.

My kidlet also has eczema and there's no particular trigger for her, and believe me, she even kept a food log to try to pinpoint why she was having so many flares.  I guess sometimes there's no rhyme or reason to it.

Take care and I hope that you feel better soon!

Patze
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