New to Sjogrens- living with the illness?

[belovedchaos1]

Hi everyone, I'm new to this forum- and I've also just been reciently diagnosed with Sjogrens. I'm in my late 20's and I'm still trying to fine tune my symptoms, and to learn how to reduce flares.To find a way of living with this illness. I'd love any advice you guys could give.

I've noticed that I tend to get a flare closer to my monthly cycle... is this common? Also, how do you guys approach people or talk with people who seem ignorant about the illness. I've been dealing with a lot of people lately who just don't seem to understand what "chronic" really means. I keep having people saying to me "get over it already!", or "you'll get better soon and things will go back to how they used to be".... I've found it really hard and isolating. My symptoms were pretty severe - leading me to my diagnosis... I just can't physically do what I could before. Even now starting treatment... I find I have short bursts of energy and can only do so much.

Do symptoms get worse over time? Do things get better? What things have helped you all to manage and cope with this change in life? I feel relief knowing what's been happening to my body... but lost on what to do now?

Thanks guys. I appreciate it very much.

Have you guys dealt with similar situations? How do you approach it?

[Bigleyj]

Hi,

Welcome to the forum. I joined 2 years ago when i was diagnosed. I'm sure you will get lots of support here.
It's really hard to come to terms with not being able to do all the things you used to but yoy just have to learn to be kind to yourseft and relax as much as you can.

Others who don't have chronic disease don't understand, you are right. Some try really hard and can empathize well. Others just don't get it. I am lucky my family and friend are great and dont push me to do things that push my energy over the edge. I have a few work colleagues who are good too but, as you say, they make silly comments sometimes. Hopefully you will get used to it and just brush it off like I do now.

What are your main symproms? Have you been to see a rhumy yet and have thwy given you medication? Plaquanel helps but takes a month or so to kick in. It helps me with fatigue. It can upset your stomach but I have found it worth it for the reduction in fatigue.

Keep smiling,
Jo 😀

[gmpurple]

I also have noticed flares coinciding with my monthly cycle. I've found that rest and reduced stress help the most to combat flares. This is a great place to search and post questions because Sjogrens symptoms vary so much from person to person. Stay strong!

[Carolina]

Dear Beloved,

Hello and welcome to this forum.

You asked if Sjogren's gets worse over time.  I think for most people it stays pretty stable, and once the symptoms are dealt with, life goes on with Sjogren's in the background.

There is a group, however, who continue to progress with more organs/systems involved, or other Immune/Autoimmune Disorders are added to their lives.

As a general rule, those of us who post here, are in that much smaller group.  But please remember that each of us is different, and while we support each other, we know that not everyone will have the same experiences.

In fact what works well for one of us may be of no use, or even cause problems for another.

So, my advice:  take what you need and leave the rest.  Try not to anticipate problems for yourself from what you read here.

And know that you can share anything you are experiencing, including frustration and sorrow.  We are generally pretty resilient and there are some very knowledgeable people here.

Begin a daily diary of your experiences and how you are feeling.  That will help you see any trends and serve as a basis for sharing concisely with your medical team.

One of the biggest challenges we all face is finding medical professionals who really 'get' Immune Disorders.

Another challenge for those us with more complicated Immune Disorders is realizing that many conditions just don't have the tests to identify them or the treatments to help us.

My husband is a research Immunologist, so I know first hand how complicated our Immune Systems are, and how little is truly known about them.

Keep breathing, find joy in your life. 

Hugs,  Elaine

[quietdynamics]

belovedchaos1... Welcome to the forum. Great username LOL!

Here is a link to a 'survival guide/tips' for Sjogren's  https://www.sjogrens.org/home/about-sjogrens/survival-tips

In 2011 Neurologist asked me to keep a headache diary.. so I began using that technique to monitor symptoms.
Just a Word Doc in a simple spreadsheet form. When something adverse presented I would note it (along with what I had been doing or even environmental factors, holidays, etc ) to discern 'triggers'. Over months I could see some patterns.. connect some dots and learn how to avoid my triggers. Later for Rheum appts. I used diary to create a short, concise outline (you will see overlap, redundancy).  And you can monitor improvements as well. I go into appt with two copies.. so Dr and myself can 'hit' the checkpoints and list my questions/concerns at top.  More than half a page is too much.. you will see.


At beginning I was seeing a therapist ( My 1st degree is in Behavioral Science) and she was a nurse as well, with many Autoimmune patients. I benefited from her wealth of experience, it made me more determined, as initially a Dx was a long process. Discussed how to self-advocate.
I mention this as you are young, and reaping the knowledge of an experienced/knowledgeable therapist can set a strong foundation. For some symptoms can be a roller coaster of highs and lows (and this confuses people around us).
Something to consider.

Sjogren's patients present along a spectrum.
Some people (studies) have positive labs and yet never present with symptoms.
Some go into remission (symptom free after active)
Some get complicated.. that would most of us here, self included. So we tweak our lives and manage, make life adaptations (some which we do not like.. but, we weigh benefit/risk of say a flare or other manifestations)

You really "Can lead a horse to water, but, can make it drink"
Well...... maybe the horse is simply not thirsty. No Need.
There are thousands of diseases out there of which I know nothing, not even their existence. And I do not need to know, I have my own full plate.
So I never assume that I need to educate anyone. I just let them know that if they ever 'want' information they can call me.

Occasionally someone will step over the line: Sjogren's Chronic meaning no cure and progressive.

If it is family you can send them this https://www.sjogrens.org/home/about-sjogrens/symptoms     
Visuals are wonderful...to help someone have some insight.
Some people are somewhat familiar with Lupus.. Sjogren's is referred to as "the kissing cousin of Lupus".  But, most people do not 'really' understand about Lupus either.. just familiar with name of disease.

Holidays and the New Year is near.. I am wishing you an early good one.

You do not mention meds. Some do take months to reach full efficacy. Plaquinel up to 4-6 months. And it is recommended to be taken with meals.

[cccourt1942]

Hi Beloved,
    You are young, and for many of us, we can barely recall that time!  Sort of kidding.  I like this type of query because it does take me back to a) what I was doing in my late 20s (to answer your question), and b) how my body/life changed after that. 

First:  I was ONLY suffering dysmenorrhea at that period.  So as to "flares"...if I had SjS that long ago, and I called my painful periods "flares" it was the only physical problem I had.  In my case it included several days before my period...up to (eventually) a week prior.  In other words, I was losing about 1/2 a month to periods.  I was in college, commuting 130 miles a day, raising a family, and married to a demanding husband.  And I thought those darn periods were my only problem.  Ha, ha.

Three years after finishing school, my ob/gyn performed what he considered an emergency hysterectomy.  Partial as he left my ovaries.  Well..that took care of that.  Within 6 to 9 months my gastro problems began.  My unquenchable thirst began..and my sensitivity to sun became unbearable.  Now in all fairness, by that time I was living less than 100 miles from the equator.  But still...lots of vague problems.  I put it off to a 1/2 way around the world  move and the post surgery.

Fast forward about 10 years:  The eyes started.  I was in mid 40s.  By this time husband (much older than I) had retired..and we were in W. Texas.....you know---dust, wind, dry.  Didn't think much of it.  Eye dr gave me a brand of OTC eye drops to use.

Aches, pains...and cervical surgery within a few years.  Oh..and all this time I worked.  By early 50s the fatigue began. 

I am going to stop there.  You get the gist.  Did I have SjS?  Did I have discomforts, symptoms, etc over those decades?  I don't know.  What is important: I raised my children, I completed education, I worked at a profession I loved, I had an adventure living and traveling extensively, I moved to a beautiful area of my home state, returned to my profession, children grown...later grandchildren...and wham: at 71 I could no longer function.  Though I had retired I continued to work part time in my profession.  Then I couldn't talk, my eyes were exhibiting horrid symptoms, my oral cavity worse.  Though I worked, the remainder of my time I was on the sofa. My husband had been dead for a decade, children 250 miles away...and wasn't searching for a dx.  This is important to know: I treated my symptoms.  That is important because AFTER your dx you will follow that model.  For example, the rheumatologist does not know eyes...he does not understand the dry mouth...the rheumy doesn't understand vaginal dryness, etc, etc.  So after my dx, it was quite simple to continue to follow my routine---even though not one of those individual specialists had ever thought "sjs".  That being said: I NEVER put all my symptoms together in order to present to any one of them.  And my stupidity?  It was thinking they were all linked to old age.  A lot of them WERE associated to age.  And one condition completely unrelated to SjS was discovered within a year of my SjS dx.  That condition, when I was wringing my hands and SO upset on this forum I was told by a contributing member to "get over myself."  I will never say anything like that to you.  I know you are scared, you are looking to your future, and you read our posts and see the complications within same and it frightens you.  Relax.  (Easier said than done.) I believe you have your dx.  You may not have hard symptoms for decades.

As to your friends understanding? Forget it.  We ALL have this problem with friends and family.  The only thing that happened which alarmed anyone with me was a dramatic weight loss.  You see the importance of certain things in our culture!!    Find solace here...and cry here, and ask here, and find comfort here.  Few negatives here.  If you run across any, ignore them.

You will be fine..you will live a pretty normal life.  You are lucky that you know in advance what is causing various symptoms which hit you.  Keep a good set of records for the rest of your life.  I keep mine in a loose file folder.  Many here keep notebooks with sections for blood work, different specialties, etc.  I am seen in a diagnostic practice where all my doctors are linked electronically...but for my ophthalmologist...and I know they can look at my neurology updates as easily as my bloodwork from rheumatologist to internist. 

Best of luck to you.  In the meantime...this time of year...try to relax and enjoy your holiday season.  (I use Holiday as I do not know if you are Jewish, if you are Muslim, etc).  I do not leave Christ out of Christmas.  I just prefer not to confine this time of year to Christianity. 

Sjoldier c3

[Joe S.]

Just posting to say hi and welcome to the form.

[belovedchaos1]

Thank you all so much for your wonderful responses and for the warm welcome... it truly means a lot to me. I can tell that you all were sharing from the heart, and I know that this forum will be a place of knowledge, solace, and support. Thank you for also letting me know that it's a process, but little by little I've just have to stay strong! I'll do my best! I'd also be happy to share a little bit more about my experiences so far.

To be honest it's hard to say when it all started... I think I started getting these really odd symptoms about a year and a half ago. It ranged from vertigo, to bad bouts of nausea, to weakness... but then it came on like really bad flu symptoms that started happening once a month and then progressed to once a week. The chronic fatigue had kicked in pretty bad, the joint pain, the muscle pain, brain fog....It took everything I had just to get out of bed in the morning. I was losing a lot of time from work, and going from doctor to doctor trying to explain to them that something was wrong. It was hard because I had to really advocate for myself and keep pushing them. Initially they had thought it was my thyroid because I has some swelling start forming there, but my blood work came back negative for that. Finally about about a month ago now, I had an internal med doctor do extra antibody blood work because my antibodies were really high. They came back with abnormally high Anti-SSA (Ro).

The internal med doctor conferred with a rheumatologist and agreed that it was most likely Sjogrens - even though my dry eyes, mouth, other areas were not severe. I've been on Plaquenil now for 3 weeks - and it's made such a huge difference. It's like I have started to get a manageable life back. My joint pain is now in livable measures, and I feel like I can do short bursts of things where as before I couldn't even get out of bed.

I have a follow up with the rheumatologist at the end of January, and an ophthalmologist appointment in March. I have noticed my eye sight within the last year has really been getting worse though. It's almost like I have to blink more otherwise my eyes feel blurry or burning. Not all the time, but it's been getting more frequent even before winter hit.

I will take everyone's advice and I will start writing a journal of all of my symptoms to try and see where flares occur. I'm happy to hear that flares can tie in with menstrual cycles (makes sense in my case). I also really appreciate the emotional support. I am lucky to have a boss in the medical field who is sympathetic and my husband has been a big help with many things.... I've just had such a huge differing response from people, with some being out right negative... that it was hurtful. I still haven't built up emotional my buffers yet and will use the advice from here to try and inform people about the illness. Still, having everyone on here is already making me feel like I'm not alone. I finally have people to relate with. I'm really glad for that.

I will do my best to reduce my stress this holiday season, and to stay in good spirits. I believe thanks to you all, I can start to do just that. Merry Christmas and Happy Holidays to everyone!