Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
30 DAYS TO IMAGINE HAVING SJGRENS
April is Sjgren's Awareness month! It is our opportunity to educate and inform everyone we know about Sjgren's and increase the visibility of the disease.
Below is our 30 Days to Imagine Having Sjgren's. We hope that each day of April you will take one of these 30 comments and post them on Twitter, Facebook or elsewhere online.
Help us increase awareness about Sjgren's one day at a time!
1. IMAGINE seeing ten doctors over ten years and still not knowing what youve got.
That is Sjgren's!
2. IMAGINE having chronic fatigue that can take the living out of life.
That is Sjgren's!
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjgren's!
4. IMAGINE your dry mouth makes you lose your public speaking career.
That is Sjgren's!
5. IMAGINE that its terrifying to be without your water bottle to alleviate your dry mouth. That is Sjgren's.
6. IMAGINE when water is not enough to replenish the lacking moisture in your body. That is Sjgren's!
7. IMAGINE having your eyes hurt every day. That is Sjgren's!
8. IMAGINE feeling as if there is sand in your eye and being told your eyes are fine.
That is Sjgren's.
9. IMAGINE having to regularly see a rheumatologist, dentist, ophthalmologist, OB/GYN, psychologist, neurologist, urologist, endocrinologist, internist and gastroenterologist. That is Sjgren's.
10. IMAGINE being constantly fatigued and being told, You are just depressed.
That is Sjgren's.
11. IMAGINE have a mysterious disease that no one can diagnose. That is Sjgren's.
12. IMAGINE losing all your teeth in middle age. That is Sjgren's.
13. IMAGINE knowing you are sick and being told you are crazy. That is Sjgren's.
14. IMAGINE you are male and diagnosed with a predominantly female disease.
That is Sjgren's
15. IMAGINE living with a chronic disease unrecognized by many health practitioners. That is Sjgren's.
16. IMAGINE having dental problems 50 times more than a normal person.
That is Sjgren's.
17. IMAGINE the debilitating disease you suffer from is sometimes referred to by physicians as a nuisance. That is Sjgren's.
18. IMAGINE burning symptoms in your feet keeping you awake at night.
That is Sjgren's.
19. IMAGINE having a disease with no simple solution or treatment.
That is Sjgren's.
20. IMAGINE having a disease that is hard to explain to your best friends.
That is Sjgren's.
21. IMAGINE having a disease that can leave you disabled, yet no one has ever heard of it. That is Sjgren's.
22. IMAGINE knowing there is an increased risk of your baby being born with fetal heart block. That is Sjgren's.
23. IMAGINE having episodes of diffuse joint pain with no explanation.
That is Sjgren's.
24. IMAGINE living a life absent of intimacy because of your chronic disease.
That is Sjgren's.
25. IMAGINE feeling terrible constantly, and being told its all in your mind.
That is Sjgren's.
26. IMAGINE having a disease with no cure and only symptomatic treatment options. That is Sjgren's.
27. IMAGINE worrying that this will happen to your daughter or granddaughter, too.
That is Sjogrens.
28. IMAGINE feeling as if you have the flu, all day, every day, and no one knows why.
That is Sjgren's.
29. IMAGINE having a disease with a name no one can pronounce and almost no one has heard of. That is Sjgren's.
30. IMAGINE a world where everyone has heard of Sjgren's.
That CAN BE Sjgren's!
April is Sjgren's Awareness month! It is our opportunity to educate and inform everyone we know about Sjgren's and increase the visibility of the disease.
Below is our 30 Days to Imagine Having Sjgren's. We hope that each day of April you will take one of these 30 comments and post them on Twitter, Facebook or elsewhere online.
Help us increase awareness about Sjgren's one day at a time!
1. IMAGINE seeing ten doctors over ten years and still not knowing what youve got.
That is Sjgren's!
2. IMAGINE having chronic fatigue that can take the living out of life.
That is Sjgren's!
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjgren's!
4. IMAGINE your dry mouth makes you lose your public speaking career.
That is Sjgren's!
5. IMAGINE that its terrifying to be without your water bottle to alleviate your dry mouth. That is Sjgren's.
6. IMAGINE when water is not enough to replenish the lacking moisture in your body. That is Sjgren's!
7. IMAGINE having your eyes hurt every day. That is Sjgren's!
8. IMAGINE feeling as if there is sand in your eye and being told your eyes are fine.
That is Sjgren's.
9. IMAGINE having to regularly see a rheumatologist, dentist, ophthalmologist, OB/GYN, psychologist, neurologist, urologist, endocrinologist, internist and gastroenterologist. That is Sjgren's.
10. IMAGINE being constantly fatigued and being told, You are just depressed.
That is Sjgren's.
11. IMAGINE have a mysterious disease that no one can diagnose. That is Sjgren's.
12. IMAGINE losing all your teeth in middle age. That is Sjgren's.
13. IMAGINE knowing you are sick and being told you are crazy. That is Sjgren's.
14. IMAGINE you are male and diagnosed with a predominantly female disease.
That is Sjgren's
15. IMAGINE living with a chronic disease unrecognized by many health practitioners. That is Sjgren's.
16. IMAGINE having dental problems 50 times more than a normal person.
That is Sjgren's.
17. IMAGINE the debilitating disease you suffer from is sometimes referred to by physicians as a nuisance. That is Sjgren's.
18. IMAGINE burning symptoms in your feet keeping you awake at night.
That is Sjgren's.
19. IMAGINE having a disease with no simple solution or treatment.
That is Sjgren's.
20. IMAGINE having a disease that is hard to explain to your best friends.
That is Sjgren's.
21. IMAGINE having a disease that can leave you disabled, yet no one has ever heard of it. That is Sjgren's.
22. IMAGINE knowing there is an increased risk of your baby being born with fetal heart block. That is Sjgren's.
23. IMAGINE having episodes of diffuse joint pain with no explanation.
That is Sjgren's.
24. IMAGINE living a life absent of intimacy because of your chronic disease.
That is Sjgren's.
25. IMAGINE feeling terrible constantly, and being told its all in your mind.
That is Sjgren's.
26. IMAGINE having a disease with no cure and only symptomatic treatment options. That is Sjgren's.
27. IMAGINE worrying that this will happen to your daughter or granddaughter, too.
That is Sjogrens.
28. IMAGINE feeling as if you have the flu, all day, every day, and no one knows why.
That is Sjgren's.
29. IMAGINE having a disease with a name no one can pronounce and almost no one has heard of. That is Sjgren's.
30. IMAGINE a world where everyone has heard of Sjgren's.
That CAN BE Sjgren's!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Thanks
Tammy
Oh yes. There are many of us who have gone through all of that. There is an active thread started by MissMuse that has a lot of responses about all of that. Just spend some time going through some of the posts already here. If you have anymore questions, start a post of your own or contact some of the people who have some of the more detailed responses.
Everyone is here to help as well as learn. I hope you feel better.
There are some symptoms on this list which just don't seem like they belong here. Tinnitus, tingling in extremities, burning tongue, bleeding gums... I'm wondering if these symptoms weren't a result of undiagnosed SjS people.
I don't think the diagnosis is as important as getting the treatment for the symptoms, seeing there's no cure it's not like a diagnosis is going to get rid of it. I have an appointment with my first rheumatologist next week. After all I've experienced up to this point and what I've read here I'm banking on NOT not getting a SjS diagnosis. I just want treatment when I need it. I'll also be seeing a homeopath MD so if the formal MD fails to give me what I need I'll be able to get holistic remedies.
From all I've read so far I'm leaning towards hormones playing a huge part in this disease, whether its the estrogen or some other hormonally linked malfunction, who knows. I'll discuss with the homeopath as she's also into women's health and see about working on a treatment/diet/regimen to address that aspect as well.
tossie- maybe you are right about the hormones.
i had tests show i have unexplained unusually low estrogen..i am 25 (was 22 when it started).
i have not been diagnsed with sjorgens... it is something i only just came accross a few weeks ago. i have suffered' an extreeme dry mouth (and nasal passege) since 2007 when i started getting ill. i got no idea why/what it could be... its not medication and its not a lack of fluids.. or peeing too much..
My own daughter has had irregular periods since day 1, usually getting about 4-6 per year. She has recently seen a homeopath and is being tested for various issues, some the blood tests are being done to find any issues regarding her menses as well as ovarian cysts.
I find your post very interesting - low estrogen and now symptoms of dry mouth and sinus. And then SO many women who are my age (your mothers age, lol,) who are perimenopausal are predominately in the Sjogren's pool.
I also did some research on myasthenia gravis and found that they believe the thymus gland (located in the chest and shrinks/atrophies around the age of puberty..) is responsible for triggering the autoimmune response for MG. I know that diabetes is AI and hormanally linked straight off the top of my head. I haven't researched any of the other AI diseases but I wonder how many of them are also linked to hormones.
I'm not sure that it matters as there is no cure... but I'm such a skeptic about medicine being a business that I do believe there are cures out there - but with money to made, who wants a cure? Now that's cynical... but look at HIV. If HIV weren't such a threat to humankind in general and it were only a threat to homosexuals and drug addicts, I don't believe we would have seen such quick results for the treatments we see for HIV patients today. People were dying within 10 years of contracting the virus, not diagnosis, but contracting it. Today this is what they are saying about the prognosis for HIV: Researchers calculated in 2008 that modern HIV treatment would mean that many people with HIV will be able to live well into their 70s.
Now how is it that they can find drugs to sustain life in HIV patients in such a short amount of time since knowledge of the disease but they haven't found a cure for cancer or autoimmune disease which have been established for decades?
After I have my tests with the rheumatologist I am taking them to a homeopath and designing a plan for myself to include treatment for my menopausal symptoms. Since menopause seemed to trigger this disease for me, I'm certain there's a hormonal link involved. What can be done about it? I bet a researchist knows and I bet I'll never find out...
Sorry, I'm on a soap box again -
May I ask if you have had hormonal replacement therapy? And if so, did you notice any improvement with your dryness?!
no, they only put me on the pill (BC) the only thing that did was give me a regukar cycle... but the bleeding was still off and was still ill with all my symptoms.
it sounds very much like your daughter could have PCOS.
no probs :) go ahead with the 'soap box' it was a good read, haha.
I've told people here many times about getting their hormones in order.
Women have it rough and getting your hormones in balance might fix some ails.
Men have a different path mine was my testosterone being low. It was, next bloodwork comes back low we will use the patch to correct it.
You should for sure make sure your hormone levels are ok.
I watched a show on it last fall its pretty amazing how women bounce back from getting it corrected.
It is VERY expensive though.
I'd say for women that would be a first step - Robin McGraw, Dr Phils wife has had hers done and she also talks about it openly you might look that up on google.
It is interesting-
At this point I've got to soldier on with the usual medical professionals and then I'll seek a homeopath to address the menopause/hormone issues.
I did try low dosage BC pills about 2 years ago. The night sweats lasted all night and I was getting next to no sleep. Summer is especially awful and that episode lasted through Sept. I took the BC pills starting in Oct and found relief so I went off when I finished the pack to see if the sweats returned. They didn't at that time, but one of my nipples started to bleed and I found myself in a breast cancer facility the day before Thanksgiving. Nothing came of it and no further bleeding. The hormones scare the heck out of me. The Dr. did advise that it was a good possibility coming off the hormones triggered some reaction in my system which caused it to bleed.
I'm not against a natural remedy and the BodyLogicMD Bioidentical Hormone Therapy Program that Mrs. McGraw uses seems to be a natural remedy. I am hoping the homeopath I visit will have some insight to that.
Gosh I sound like a hypochondriac at this point. I really don't want to do any of this follow up with Dr's. I'm sick of it. It's such hard work. I'm mentally exhausted.
I applaud you and your tenacity and your positive attitude. You're a breath of comfort and inspiration and balm to my draining energy levels... I feel better knowing you're out there helping to lead the way. Thank you.
ditto, know the feeling very well :-/
The good thing once diagnosed and you know what's what you can limit your exposure to them. I see a dentist every six months , my eye doctor once a yr , my doctor once a yr, my rheumy twice a yr.
At times I feel like I spend more time with them than family. I dread almost every visit. On the off months I work in the dogs vet.
Sometimes I wonder why I cannot just go to one doctor - doctor know it all- that would limit my cars odometer from working so hard. :-) He does my dogs shots, my eyes, teeth cleanings, blood pressure, and check ups.
Like it used to be- lol
I liked this post because it gives a picture of what we go though for those that don't understand or those that 'think' they do but are clueless.
So sorry it's taken so long to get back, yes it does seem as though some of these symptoms don't belong but I have the ear ringing and nerve sensations described. Just have not had a burning tongue (knock on wood). I think this just shows that many of us have such strange symptoms and it's hard sometimes to have a doctor look at you like you're not going nuts.
I myself never had the lip biopsy but my blood work came back with strong confirmation of Sjogren's. Many AI ailments mimic each other that it is almost like finding a needle in a haystack to find the correct one. Knowing I have ANA's and finding out which one(s) I have can be problematic. Test, test and more tests.
I too have had fibromyalgia for 10 years now. 30 years ago I found out I have Hashimoto's Thryoiditis. Now I am learning that AI's don't like to be lonely so they bring along all their little AI cousins to join in the fun and live with us.
Female dryness - Ask your primary care doc about Estrace, it's a creme that you can insert or rub on dry areas. It did wonders for me.
Sassie