Sjogrens World Forums

I was at the SSF conference today, and this question was asked at my table. We were all interested in each others replies. Please vote!

I would have to say before, I didn't know what was wrong with me.

SueAnn

Mine was also years before diagnosis

The fatigue started years before my diagnosis. I just started not being able to keep up bit by bit.

Hi  :)

I haven't voted because in my case the fatigue set in a good 15 to 20 years BEFORE I got a diagnoses.

Take care - Scottie  :)

I've been diagnosed about ten years, and was symptomatic years prior to that, but the fatigue didn't hit until this last year when I started having flairs.  It's bad enough that I'm projecting how much longer I can continue to work and be effective in my job without hazarding my health.

I'm the same as the others who have answered.  My fatigue began 10 to 15 years prior to my diagnosis.

mine also started before DX. it really only hits me now during a flare.

For me the fatigue also started before the diagnosis. The fatigue and joint pain and stiffness is what made me seek help.

Before for me as well.

It was the fatigue and joint aches that made me go to the docs.

Now only get fatigue when I'm in a flare.

My first symptoms began with extremely dry mouth - then came the fatigue and aching joints etc., This was all a good few months before I was diagnosed with sjogrens.

I had fatigue before I was diagnosed.

Mine also started a good 10-15 years before diagnosis. 

Yes my fatigue started 10 - 15 years ago too.

I answered "immediately", but only because like the others, mine started years before any diagnosis.  I remember fatigue just getting worse and worse since high school, and checking out lots of options: depression, chronic fatigue syndrome, etc, with no answer. I did have a positive ANA back then but that was it, and I had no other symptoms other than the fatigue, so they didn't pursue it further at the time. 

I guess there's no way to tell for sure, but I'm wondering if I had something way back then and it just manifested itself slowly.

For me, fatigue was the major problems that led me to seek a diagnosis. It was normal for me to want to be on the couch all the time.

I also had it before.

susanep

Ten to fifteen years before Dx. For about 10 years before Dx, I used homeopathy, which takes the edge off the symptoms.   And I thought the dryness--mostly in my eyes-- was normal for menopause. One of the weirdest things was the photophobia.

beth

.

Answered immediately... though had fatigue at least 15 years before diagnosis.

at least 15 years before my dx :(

Fatigue started many years previous to diagnosis.  Looking back I think it was the first symptom to show up.

I started having fatigue and leg pain when I was three. I was diagnosed at 43. So..I had it 40 years prior to diagnosis.

I voted immediately, but that needs a bit of clarification. I experienced the same AI fatigue for many years, because of my sarcoidosis, but that had been fairly quiescent for some time. I probably had more fatigue than a "normal"person for a while, but I was used to it so it didn't count.

Following my first referral to my rheumy for the new (SjS) symptoms, within a month I had my workup (labs, scans, biopsy, etc) and it was the biopsy that tipped me over, I slept 20/24 hours the first day I had off after that (3 days post op).....granted I worked 12 hours the night before the BX, 12 hours the day  after, and 14 the day after that, but that was my usual routine and I had been doing it for at least 2 years with an average of 6/24 sleep and I had enjoyed 3 whole days off in the month prior to diagnosis.....oddly enough, my rheumy seemed to feel that my workstyle contributed to my illness ;).

Years before, but I will vote immediately.

~Laura~

I had the fatigue years before, and for me too, that was one of the symptoms my diagnosis was based on. Interestingly, I became so much more tired after giving lots of blood samples when I was being considered as a match for someone who needed a bone marrow transplant.

Kathyx

I just got diagnosed a couple weeks ago via a blood test after I was diagnosed w Raynaud's and my mom and RA. My SS-A # was pretty high. I didn't know little pains, dry mouth and stuff were symptoms until after I was diagnosed and I started looking into it.

I thought I just needed to start going to bed earlier. But something didn't seem right to be in my late 20's and feeling to beat after work when most of my friends went out for happy hours, running errands and everything after they clocked out.  After the diagnosis though, a lot of things are starting to make sense.  :(

Anyone do anything to help with the fatigue? Caffeine only helps so much.

Hi LauraLou,

I'll start with a welcome!  ;)

My fatigue also began about a year or so before diagnosis.  Fatigue and muscle pain were the issues that sent me to my doctor to begin with.

Well, what can help with fatigue? I honestly don't have a good answer.  Sometimes a little exercise like a short walk can help me, and sometimes I just need to flop on the couch!  It just takes learning your body...maybe someone else will have a better answer.
Melinda

This is really interesting to hear - the vast majority of those who answered suffered fatigue years before, or at, diagnosis.......this actually should give a lot of hope to those who have the basic symptons (dry eyes and mouth) and have been worried (like me) that it might PROGRESS to fatigue.  The odds seem to be in our favor that it won't. Thanks, everybody, for your input.

As many of the others have said, my fatigue started years before the diagnosis.

I posted never since the fatigue set in about 20 years previous to the Dx of Sjogrens.

Same here. Many years before diagnosis.

I voted immediately, but, have been fatigued for about 17 yrs. My was told then that it was sleep apnea. I ever fell a sleep at the wheel and had an accident (I was ok). I went through my cancer treatment and became even worse. After a few years of tests and doctors, my neurologist said it was from something else and not the apnea. Now I have a cause. Thank you for enlighting me that I wasn't going crazy and thinking it was in my head. My husband says that I should go to bed earlier, but, whether I have 10 or 4 hrs of sleep it's the same. :-\

I haven't slept more than 2 hrs straight in about 14 yrs. I have had CFS for about 6-7 yrs, with the last 2 yrs being the worst.

This meditation helps me and others
1. find a comfortable position
2. With your eyes closed, look to the top of your head
3. Breathe in and think "I am"
4. Breathe out and think "calm"
5. repeat by going to 3.

Last weekend "Ren" found that it worked well for her at an Anime convention.

I had fatigue long before I was diagnosed. I just didn't know why. Thinking back it might have been my first symptom.