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Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: beautifulkrissy026 on March 12, 2010, 01:05:56 PM

Title: 26 Years Old and Have Sjogren's
Post by: beautifulkrissy026 on March 12, 2010, 01:05:56 PM
My name is Kristine, I am 26, just had my second baby and found out that I have Sjogren's.  I had never heard of it before, I always wanted an answer for how I feel, but I just don't know how to cope with this answer.  I was hopeing for an answer that could be fixed, but there is no fixing this and that is hard to accept. I just had my second baby and I feel like a horrible mother because I'm always so tired and to sore to do anything.  I get really depressed when I think about my future that it's never going to get better probably worse if anything.  It's been really hard trying to accept that.  Still trying to learn more about it, it's still really new to me.  So if anybody has some advice please send it my way.  I mostly don't know what to do about the fatigue and joint & muscle pain.  My rheumy told me to just take tylenol, like I haven't tried that.  So I'm going to be seeing a new one maybe he'll have some better advice. I'm taking the hydroxychloraquine and have been but I don't know if there's much of a difference. So hello to all who read this and all advice is helpful.
Thank You,
Title: Re: 26 Years Old and Have Sjogren's
Post by: tomsmom on March 12, 2010, 02:05:25 PM
Hi Kristine,
Congratulations on your new baby.  It's horrible when you have so much responsibility and you feel like you can't function.    I was diagnosed last year right after I had my second son so I know how you feel.  I get so fatigued sometimes that all I can do is sit on the floor with my boys and try to play with them.  I know all too well the feeling of failure as a mom.  But I tell myself that I'm doing the best I can.
I've been on and off of Plaquenil.  This time I'm determined to give it enought time to make a difference in my fatigue (I hear it can take up to a year).  I hope you like it here.  There are some great people here with lots of knowledge and advice.  Welcome!
Title: Re: 26 Years Old and Have Sjogren's
Post by: Katybarstool on March 12, 2010, 02:09:23 PM
Hi Kristine

Welcome to this wonderful, supportive family. I'm sorry to hear you're feeling so unwell. That must be really hard with a new baby and a small child to look after. I think the hydorx. can take several months to kick in, so don't lose heart that it isn't working yet.

I'm sure lots of people will come and welcome you, so I'll just say 'bye for now'.

Title: Re: 26 Years Old and Have Sjogren's
Post by: harrigan on March 12, 2010, 02:43:21 PM
Hi Kristine, welcome to you.  Sorry you are feeling so rough when you have 2 little ones to care for.  It may take time (up to 6 months) for the Plaquenil to work.  Or it may be that it just isn't the right drug for you.  Maybe you could keep a diary (in the few precious moments you have to call your own!) to look back and see how symptoms may have changed?

Just wanted to say thinking of you and hoping things get a bit easier for you soon.   XX Ailsa
Title: Re: 26 Years Old and Have Sjogren's
Post by: beautifulkrissy026 on March 12, 2010, 08:01:20 PM
Ya I have been on it for about 6 months and I will definately give it atleast a year to work. I don't want to wast the time I already put into the medicane. I would like to start feeling better sooner than later. My babies are going to grow up before my eyes and I want to be there to go through it with them not just sit back and watch them. Thank you for the welcomings.
Title: Re: 26 Years Old and Have Sjogren's
Post by: lynnmarie219 on March 13, 2010, 08:45:42 AM
Hi Krissy and welcome to Sjogrens World!

First of all...congrats on your new baby! Having two little ones would anyone tired whether you had sjogrens or not!  ;)

Try to not be too hard on yourself and enjoy all the good times you can have with your children. You may have good days and bad...but having sjogrens doesn't necessarily mean that you will continue to feel worse.....many of us don't ever progress to any worse symptoms...some of us have better days sometimes and worse days on others....and yes....some of us do get worse...there is no one answer...we all follow this path in a very individual don't get yourself in the frame of mind that you will definitely get worse....because that's not necessarily true.   :)

One thing I want to add about plaquenil is that sometimes the changes over the months are so subtle that we don't even realize how much the med is actually working until we decide to go off of it because we think its not working (hope that made some kind if all you can here and feel free to ask any questions....we all understand!


Title: Re: 26 Years Old and Have Sjogren's
Post by: sleeeepy on March 13, 2010, 10:26:53 AM
Welcome krissy :) Just wanted to mention that it is odd that some women(including me) have experienced the onset of Sjogrens soon after giving birth.  Wonder if changes/stress to the body may be one of those triggers?  Right after the birth of my daughter, I too began to show prevelant symptoms of Sjogrens..Docs weren't sure at the time what it was, but now I know what it was. One day at a time is all I can offer as advice.  It was very hard raising my daughter because I was sooo tired all the time and didn't feel good which meant I didn't feel like doing anything.   It was all i could do to get things done around the house like cooking meals and laundry. I tried very hard to ensure my daughter got to do things even when I was having a bad day.  My hubby for many years took her trick or treating which i could not, because I could not walk long distances. I missed out on some things, but she knew and knows today that I love her.  Sometimes I would go along trick or treating and go along for a couple houses then go back to the car.  That is what we have to do...make adjustments that will keep us as involved as possible without over doing it.  Sometimes a big SNUGGLE on the couch with our children to watch a movie together means more than going to the park to run and play. Take care and congrats on your precious new baby!!!  gentle Hugs Mary
Title: Re: 26 Years Old and Have Sjogren's
Post by: tmarie0183 on March 14, 2010, 12:54:47 PM
Hey Kristine,

I too am 26 and was diagnosed with Sjogrens over a year ago, shortly giving birth to my second child.  I had weird neurological symptoms, and thought for sure I had MS.  I went to a couple of different doctors who pretty much told me it was all in my head.  That was extremely difficult to hear because I was really beginning to question myself and whether I was just going crazy.  My family also began believing it was all in my head even though they wouldn't come right out and say that!! I too feel like a horrible mom because I feel like I am just so "lazy"!!  I never have energy and feel so guilty like I am robbing my kids of their childhood.  I finally had a neurologist do a bunch of tests and my blood came back positive for Sjogrens and my rheumy started me on plaquenil which has helped ( I think:).  I go through good periods and then periods where I just feel so alone and depressed.  I know it's easier said than done, but please try and keep your head up and enjoy the little things in life!!  I don't know if you are spiritual or not, but faith is always a huge help!!!                                         
Title: Re: 26 Years Old and Have Sjogren's
Post by: beautifulkrissy026 on March 14, 2010, 04:04:42 PM
It's nice to know I'm not alone.  They said usually the diagnosis don't come this young. Were like two peas in a pod. Pregnancy must definately play a roll in it. My family is the only thing that keeps me going and I am blessed for that. Maybe you might know the answer to my other question I have posted about whether or not it causes symptoms to be worse around that time of the month. I've never been in so much pain until I had my second baby. Since then two weeks out of every month I am in horrible discomfort. Well hopefully a breakthrough in treatment comes sooner rather than later, if not we have alot of time ahead to deal with it. Knowing what is wrong is sort of a blessing in disguise because now we know were not crazy.
Title: Re: 26 Years Old and Have Sjogren's
Post by: sleeeepy on March 14, 2010, 04:14:55 PM
Kristine and Tmarie, I do think there is something about the stress pregnancy makes on the body maybe connected with hormones who knows at this point. I was 27 when I gave birth to my daughter and immediately after I began to feel the symptoms of Sjogrens.  I didn't know what it was at the time though, but went to doctor after doctor and they thought I was crazy and tried to give me antidepressants and one doc asked me if I was walking if I knew that...LOL..they were trying to blame the pain and swollen glands on my walking pattern??? I am now 42 years old and I am finally getting an official diagnosis since I have always been sero negative on autoimmune tests. What a struggle it has and will be..I am so tired of trying to convince doctors to actually CARE!!! Tired of telling my same story over and over again to each doctor and ologist I see. Just hang in there and hopefully research will find a cause and cure for our suffering. Gentle hugs...Mary
Title: Re: 26 Years Old and Have Sjogren's
Post by: Patze on March 14, 2010, 04:56:44 PM
Hi Kristine,

Let me also welcome you to the SJS World and family!  Like the others have mentioned, please do use the search engine to look around the board as there are tons of topics that you just might find interesting.  And as you've already seen, there are just scads of wonderful members here as well.

Whew, two little ones, and it's no surprise that you are so exhausted! 

Again, welcome, and take care of yourself, okay?

Take care now -


Title: Re: 26 Years Old and Have Sjogren's
Post by: Lacey1981 on March 15, 2010, 03:40:08 AM
I was dx w/ sjs before getting pg w/ my second and my rhuemy told me that while pg there was a good likely hood my symptoms would get better which they did. He also warned me that there was a chance that my symptoms would get worse once the baby was born due to the change in hormones. Much of the research I have found suggests there is a relationship b/t hormones and symptoms and I can definitely see that pattern in my life as my symptoms also get slightly more prominent around the time of my period.
Congrats on you new little one. Hopefully the hydrox will start working soon but just try to enjoy your babies as much as you can  now.
Title: Re: 26 Years Old and Have Sjogren's
Post by: tmarie0183 on March 20, 2010, 09:57:13 AM
I am truly sorry that it took you soooo long to get a diagnosis and treatment!!  In that regards I have been blessed to get a diagnosis/treatment within appox 2 months of symptoms!!!  But I did have to go through asshole doctors who repeatedly told me it was in my head!!

I notice a HUGE difference right before my period!!! I get ridiculously tired and achy and weak!!!! Having an autoimmune disease sucks, but not knowing what is wrong with you is worse!!  I'm going back to my rhuemy in a couple of days because I have been in so much joint pain due to the weather changing.  I live in Wisconsin and it is killing me!!! Trying to convince my hubby to move to Florida, but we'll see!!! So whenever you need to talk feel free to message me!  It's nice to talk to someone who is going through almost my exact situation!

Take care ladies!!
Title: Re: 26 Years Old and Have Sjogren's
Post by: beautifulkrissy026 on March 20, 2010, 05:27:38 PM
Thank you for the response. I had mentioned it to my rheumy but he really didn't care. Like he could understand what a women goes through every month anyways and to have it magnified by 10 is really bad. He also made it seem like it was just me. But I will keep you in mind, it's nice to have someone to talk to around the same age.
Title: Re: 26 Years Old and Have Sjogren's
Post by: ErinG on March 20, 2010, 08:27:37 PM
Hi ladies,

I'm 29, I don't have children but I do get really bad lower back pain right before my period.  I don't think I had this kind of pain 10 years ago before I started having dry eye symptoms.  I've always had cramps, but the back pain is whole different level of pain.
Title: Re: 26 Years Old and Have Sjogren's
Post by: Bernice on March 20, 2010, 09:00:50 PM
Reading you guy's posts remind me of my younger years. I was first dxed when I was in my twenties soon after having my second child. Boy do I remember those monthly pains, I ALWAYS knew when my cycle was about to start I would have pain in my right leg, never failed. Only for me giving being pregant was always rough too, had few miscarrages and on high risk with the three I gave birth to.

BUT! Other than the pain at start of cycles I lived and enjoyed my life and children, so to say that you will not be able to do the same is not necessarily true and it's not fair to yourselves cause you will convince yourself of that. Shoot I forgot all about SJS while raising my kids, was determined I did not have time for it. When something hurt I dealt with it and went on with my life. Had a blast with my kids and was always the one with most energy.

It took 20 some years for it to get me down and I really think if I had not stopped dancing and working which caused weight gain it wouldn't have gotten me then!
L I V E!!!!!!!!!!!  E N J O Y !!!!!!!!
Title: Re: 26 Years Old and Have Sjogren's
Post by: beautifulkrissy026 on March 21, 2010, 09:04:23 AM
Wow how crazy is that my right leg and hip are probably my biggest problem areas. I also had problems with both of my pregnancies and after each one I've gotten worse.  It's very hard for me to do things with my kids, I have no energy. I have all I can do to keep up with the neccesary things.
I know what you mean about the back pain to. I've tried for many years to get it under control (chiropractors, therapy, etc.) it just don't work. I'm starting to come to the realization that I will just spend the rest of my life dealing with everything, because it's not like I can fix it.