In another posting Pooh mentioned that she remembered exactly when she became ill with Sjogren's. But I can't put a definitely time stamp on mine, infact I think I had it as a child in a milder form.
OTOH, I can remember the exact day I fell ill from Myalgic Encephalomyelitis (aka Chronic Fatigue Syndrome/ Chronic Fatigue Immune Dysfunction Syndrome). Not only can I remember the exact fall day, but I remember absolutely everything I did that day from working in the garden to feeling ill when we went out to dinner etc.
Can you pin point the exact time you developed Sjogren's?
Skylar
Hi Skylar :)
I can't remember when I got ill with SjS. I think it crept up on me slowly. The dryness did at any rate. I've never been particularly healthy. It must be a lot worse for people who had great health before hand.
I had bad episodes after all my kids were born that lasted for quite a long time and I certainly always seemed to want to sleep more than average. I can't say definitively though.
take care - Scottie :)
I can remember the exact date and what I did that day. It was June 4, 2007. I woke up to severly dry eyes. A week or two later I developed dry mouth and arthritis problems. I can never forget the day that changed my life forever. Now I dream about the day that I can say changed back my life forever.
nope can't put an exact day on it. i think it crept on me. I can remember a whole year where I had terrible knee pain no other symptoms and the Dr. could never figure out what was causing it we tried many different TX but nothing helped then one day it just stopped. I think that was probally related to my sjs so it is possible I had it from a young age cuz i can remember having joint pain back in Jr. high which the Dr's. all said was just growing pains since they could never find a cause.
Scottie, yes, it seems like it just creeped up - until it exploded a few years ago when they thought I had MS.
Kcoffiner - that's how I felt about my ME date
Lacey, yes too bad the doctors didn't even think it could be Sjogren's back then.
Skylar
The exact date for me was April 11, 2008. On April 10 I was normal and on April 11 my mouth went suddenly dry.
:-\Sue
Totally creeped up. I remember many years ago an eye doctor telling me I couldn't wear contacts because my eyes were too dry. Years of weird dry or overly mucus sinus/throat to the point of annoying everyone around me with my throat clearing noices. Later Carpel tunnel later weird sweating from face ....things just built and built up. No....no exact moment for me.
Steve
Hi Skylar,
Yep, I can remember when the Sjogren's started for me, and I can tell you the day, year and weather the day "Fred" (my periphrael neuropathy) kicked in. It was July 12, 2003, and it was a dreary summer day. I was walking around in WalMart and suddenly my legs just refused to move. It hasn't quit since. I wobble and dance all over the place. It's like trying to walk on a mattress. :o
I'm sure I had Sjogren's a long time before I really started to notice it, but the neuropathy I can almost pinpoint the time it started.
Can't remember what I had for breakfast, but I can remember these times. Weird, huh?
Hugs, Pooh
This post prompted me to make another You-Tube video and talk about some of my early symptoms. I made it because when I was trying to figure out what I had this site here was what lead me to the answer and I was able to help my doc with a diagnosis. I hope that my video's will help others when they are trying to figure this stuff out.
Here is my latest video....
http://www.youtube.com/watch?v=TeY8LmRuWx8
Thanks...just don't laugh because I'm incredibly shy and doing this is stretching outside my comfort zone.
Steve
Steve, That looks like a very big mushroom that you have growing behind you in your video. Thank you for another one.
Back in the early to mid-1990's. My eye doctor commented on how dry my eyes had gotten, and asked about any autoimmune diseases I might have. I mentioned the diagnosis of RA I had had since the 1970's. He suggested telling my rheumy about the dry eyes, and from there the rheumy added Sjogren's to my list. But the Sjogren's symptoms had started before then, looking back on it.
Genko
Hey Joe, that does look weird doesn't it. Its a glass lamp of course. I bet it distracts people.
Like some of the more mature folks on here, I wonder if I didn't have "it" or something as a kid. I always seemed to have heart problems, IBS and other non-specific things through the teen-age and young adult years. I used to have strep throat all through my teen years and every time I healed, we did not get my tonsils out. When I was sick, we'd say they were coming out. They have been fine since I graduated from high school.
I've always been "tired." But so is every working wife and mother. And father. In January 2000, I had the ever-popular Lasik eye surgery and my life as I knew it has never been the same. I was deemed a good candidate, but was never checked for dry eyes. (I trusted the doctor would know all he needed to know as I gave him all information.) My eyes never healed and have been dry ever since. Doctors denied the Lasik causes dry eyes, but many of us know different. The docs NOW admit it causes dry eyes. I kept on working with my burning, blazing eyes for 5 years. I had to put drops in every 20 minutes. I went all over the country looking for help with famous doctors.
Shortly after the lasik, I was diagnosed with cataracts too. At the 5 year mark, I was having trouble working and my doc and I thought one cataract surgery might help me enough to see to work. After the cataract surgery, it was apparent immediately the vision was way off. I went off on disability and got permanent SSD at this time. Right after this, I was going in for CARPAL TUNNEL surgery and one night was looking for info on the internet about the surgery. Right on the side was a list of 10 things that point to Sjogrens. I had 9 of them. That was 3 years ago. I was officially diagnosed in September 2006. That was my lightbulb moment. All the time with dry eyes, not one ophthalmologist asked me about Sjogrens or mentioned it to me. I had my GP test me a couple of times for it during the 5 year span. I was the one, actually, who diagnosed myself, but my bloodwork and lip biopsy did come back positive and by then I was very sick.
Lucy
P.S. Also had knee replacement in 2002. Mouth became dry later than eyes. Much pins and needles in hands and feet, also face.
I think I have had problems for years as even in my teens there was stomach problems, allergy problems and yes aches called growing pains. I can always remember needing a nap when most kids my age were full of energy. That has never been me. In the late 90's I developed aching feet that I contributed to standing all day at work. By late 2001 neuropathy was being investigated along with SJS.
In Jan. 2003 though I tripped and twisted my knee which started a cascade effect after having the knee scoped in Sept. By 2004 I had both knees replaced and by 2006 and early 2007 I had three hand surgeries. It seemed suddenly all my joints gave out at once. In April of 2003 I was going to Jazz Fest in New Orleans walking all around with minimal knee problems and by July of the same year I was struggling to stand up much less walk.
Whatever had been going on previously, I think the minor episode with the knee triggered an avalanche effect. That was my real indication that my body was beginning to struggle with recouping from illness, injury or over-use. Today of course I have learned the consequences of doing too much and try to avoid those situations when I am able.
There is no specific day I can point out. There is though in reflection signposts of events that were leading the way to where I am today.
My Sjogren's just sneaked up on me too.
My first symptoms were my decreased thyroid function, then several years later I lost my sense of smell. I repeatedly went back to my internal medicine doc because I just wasn't feeling right - she was sympathetic and did lots of diagostic stuff but just didn't think about Sjogren's.
When my parotids swelled up, then finally that symptom prompted her to think of autoimmune stuff. It seems as though once the salivary glands were affected, then suddenly I felt much much worse. That was five years ago. I definitely feel better than I did at diagnosis, but as everyone else here knows, I am not the same person that I was before this kicked in.
Good question and discussion.
Julia
Dear Steve:
Thanks so much for doing these You-tube videos! This will help so many people in raising awareness about our condition.
Sue
I knew something wasn't right in 1999. I had been diagnosed hypothyroid in 1980 and in 1989 diagnosed with Addison's disease, I was 18 and 27. Life changed a bit with the Addison's dx but for the most part i did "resaonably well" to steel Julia's catch phrase ;). But about 1999 I knew "something is just not right" my phrase to several dr's. It seemed to cycle or flare around that time of the month. I was referred to a reproductive endocronologist in Ottawa, Dr Elaine Jolly about 2001-2002. The first interview with her and her intern introduced a suspition of something called "sjogren's syndrome". I am amazed how quickly she came up with it and that she was able to sort out all kinds of symptoms in my "auto-immune ball of string". I did end up in auto-immune early menopause within the year probably due to the Addison's. It still took several years for the positive dx of sjogren's with a referal to a rhuemy and finally with a lip biopsy in May 2006. Referals take forever here and when dealing with an illness like sjogren's it takes a handful of referals/specialists. Since then I've been trying to learn just what "sjogren's syndrome" is and what's normal whats not and what to seek help for and not and how to live as comfortably as possible with it. That's all hard work too. Thanks to you people it makes things much easier. Thanks, Sandra
Like many of you, I had lots of throat infections and tonsillitis as a child - these also used to trigger seizures until I hit puberty. Then the seizures stopped but the joints started being a problem. I can never remember feeling really healthy, and was always much tireder than my siblings. I have had dry eyes for many years, and lots of allergies. I lost all my teeth by the age of 21. However, things never really escalated beyong that until I developed lung problems about 5 years ago. My hysterectomy almost 3 years ago seems to lead to a downward spiral and then my eventual diagnosis last year.
Kathyx
My Sjogrens came along very sneaky and silent. I've had it for years, maybe even since early teens, but I remember I suddenly got trouble with my contacts in 1999. In 2000 I stopped wearing them. My mouth has been dry since the teens.
I was diagnosed in 2001.
Rania
I can remember the period of time, but not the exact date. Iwas dxd with colitis in 1996 after a long spell of ill health. I recovered well on medication and apart from the odd flare up was fine. Years later in 2005 I spent months going to and from the doctor as I was feeling so unwell again, only to be told I had a virus, depression etc, or another flare of colitis. This was the start of the SS.
It was so annoying not to be taken seriously at the time, and was only due to an ENT consultant who was on the ball and referred me to an excellent rheumy that I got a dx 12 months ago.
Think we all remember it as a life changing experience, and for most of us it's not a change for the better. But hey - here's to our good days, and I pray there are still plenty left for all of us.
I'm so glad so many people are responding to my question, I find it interesting whether we can pinpoint the start or not. Seems most people see it more as a progression.
Steve, I think it's wonderful you made another UTube video - so many people don't get diagnosed properly at first - it seems SjS is just not considered a possibility.
Skylar
Yeah, it all sounds familiar, when I was young it was growing pains and when I hit 40, it was old age!
My foot doctor sent me to a rheumatologist when he felt all the bones popping in my feet. Apparently popping bones and ANA of 1280 is bad. Well, I guess it wasn't all in my head like some of the doctors were saying.
Billydude,
That was a good tape. I forgot about a lot of the symptoms that you brought up, infact I think I will watch it again. The phallus behind you kept distracting me.
I remember well the exact day I began to suffer big problems---one day in the Fall of 1999---joint pain, fatigue, fevers, dizzy, terrible body pain--It lasted 14 months and at that time I never got a good diagnosis other than "chronic fatigue". Although I do advocate for vaccinations and I am almost reluctant to share this, my symptoms started within 24 hours of getting a flu shot. I felt so ill I actually had to leave work. My legs just would not work. My food started sticking on its way down. I did have to stop wearing contacts during this time due to dry eyes. I altered my diet and lifestyle and pursued "naturopathic" remedies. I had a few exacerbations of symptoms and even had two positive labs for SSA and SSB, but was dismissed by doctors as a head case. I also developed adult onset asthma in 2003 and my rheumy thinks the breathing problems might be related to SS. I finally found a doctor I could trust and help me last October. By then my mouth was also extremely dry. I guess for me the eye and mouth symptoms have always been the least of my problems since the joint pain and fatigue and brain fog when I am sickest are so incredibly disabling.
I like others I have seen had lots of strep throats, sinus infections, allergies, growing pains and incredibly bad menstrual dysfunction and endrometreosis, migraines starting at age 19, and was in terrible pain in my arms and hands from about age 14 on. Both of my parents were very ill (lung cancer,diabetes, heart disease, Alzheimers) when I was a teen and I really felt I could not complain. Now I just allow myself to be ill and down when I need to...versus years of denial.
thanks for asking,
Mary in Los Angeles