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Sjögren's Syndrome Message Board
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Old 06-26-2012, 05:33 PM   #1
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Wondering about Sjogren's

Hello,

I would appreciate any helpful opinions from those who are experienced with Sjogren's . I'm 26 and have been in & out of the doctor's office for a while now, ruling things out and coming closer to a diagnosis of fibromyalgia.

I am tired, all the time, and achy. Along my jaw behind both ears my salivary glands are always a little sore when touched. One side in particular has become increasingly inflamed, and for the last three days has been swollen and painful even when not touched. For years, this gland has acted up suddenly and seemingly out of nowhere to the point that I scream in pain when trying to eat - it sends an intense stabbing sensation behind my ear. Usually it goes away as suddenly and randomly as it starts, but a few days ago it happened and my gland has remained swollen and sore ever since. I am planning to see the doctor for this, but upon looking up what might be causing it, I came across Sjogren's and am realizing that almost all of the symptoms of the fibromyalgia that it is believed I have are covered by Sjogren's , and then some.

Aside from general fatigue and joint soreness, for several years I've had a very itchy throat - almost every day I'm compelled to swallow as hard as I can to "scratch" the itch but it doesn't help, nor does drinking fluids. My eyes have begun to feel increasingly dry although this has not been an issue in the past. I am also often dry vaginally and have frequent vaginal yeast infections that are difficult to kick. I also have frequent tingling in my extremities.
I wouldn't call most of these symptoms 'severe' except for the salivary gland pain, and the increased vaginal dryness in the last year has started to negatively affect my sex life.

Does this sound like an early catch of Sjogren's, or do these symptoms seem too minor/coincidental? Would it be worthwhile to ask for tests to rule out Sjogren's?

 
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Old 06-26-2012, 06:53 PM   #2
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Re: Wondering about Sjogren's

Definitely sounds like you should pursue this with whatever doctor is most aware of all of your symptoms. Are you seeing a rheumatologist? Have you already had all the blood work needed for autoimmune diseases? Best wishes!

 
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Old 06-27-2012, 08:49 AM   #3
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Re: Wondering about Sjogren's

Swollen salivary glands, check. Fatigue, check. Dry mouth, check. Dry eyes, check. Vaginal dryness, check. Extremities tingling, check. All are symptoms of Sjogren's and can and should be treated. See your Primary and see your gynaecologist. I have heard of Gynaecologists being the first one's to pick up on Sjogren's, in fact. A rheumatologist would certainly be in order as well.

 
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Old 07-02-2012, 06:07 PM   #4
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Re: Wondering about Sjogren's

Fibromyalgia is not an autoimmune disease, but sjogren's is. You can tell by bloodwork and/or biopsy. Go get tested.

 
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Old 07-04-2012, 08:39 AM   #5
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Re: Wondering about Sjogren's

Quote:
Originally Posted by lamplightballet View Post
Hello,

I would appreciate any helpful opinions from those who are experienced with Sjogren's . I'm 26 and have been in & out of the doctor's office for a while now, ruling things out and coming closer to a diagnosis of fibromyalgia.

I am tired, all the time, and achy. Along my jaw behind both ears my salivary glands are always a little sore when touched. One side in particular has become increasingly inflamed, and for the last three days has been swollen and painful even when not touched. For years, this gland has acted up suddenly and seemingly out of nowhere to the point that I scream in pain when trying to eat - it sends an intense stabbing sensation behind my ear. Usually it goes away as suddenly and randomly as it starts, but a few days ago it happened and my gland has remained swollen and sore ever since. I am planning to see the doctor for this, but upon looking up what might be causing it, I came across Sjogren's and am realizing that almost all of the symptoms of the fibromyalgia that it is believed I have are covered by Sjogren's , and then some.

Aside from general fatigue and joint soreness, for several years I've had a very itchy throat - almost every day I'm compelled to swallow as hard as I can to "scratch" the itch but it doesn't help, nor does drinking fluids. My eyes have begun to feel increasingly dry although this has not been an issue in the past. I am also often dry vaginally and have frequent vaginal yeast infections that are difficult to kick. I also have frequent tingling in my extremities.
I wouldn't call most of these symptoms 'severe' except for the salivary gland pain, and the increased vaginal dryness in the last year has started to negatively affect my sex life.

Does this sound like an early catch of Sjogren's, or do these symptoms seem too minor/coincidental? Would it be worthwhile to ask for tests to rule out Sjogren's?
The problems with the salivary gland swelling and being painful while eating points to Sjogren's. For months I would have to palpitate my salivary glands to get them to flow, and sometimes the fluid would back up all around my ears. It got particularly bad, and the ducts became clogged with calicifications so that my primary thought I had a tumor. After xrays and tests, I was diagnosed by my ENT. That was in 1997. Try warm compresses to keep the glands flowing, and manually "milk" them to avoid swelling. It is helpful to look at the anatomy of all the glands and ducts to learn where to massage. Hope this is useful!

 
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Old 07-04-2012, 02:06 PM   #6
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Re: Wondering about Sjogren's

I feel that I need to add a little something to this discussion about salivary glands becoming swollen. For many years, I have had times when one or more glands seem to cramp up for a few minutes -- sometimes when eating or drinking something acidic or citrus. When the salivary doctor was doing one of my tests and trying to "milk" one of my glands for analysis, this happened and I had a horrible pain for a few minutes. She "massaged" out the pain and we continued with the test. This salivary doc has told me twice now to not try to rub and massage a gland myself. She said that it can lead to a permanently blocked gland which might take a professional to give help. For many years, I have tended to rub my jawline when I was feeling pain. Sometimes I can't tell the difference between a TMJ kind of pain and a glandular pain. I'm going to do some research to see exactly where the salivary glands are located. Since she has given me this warning twice now, I am going to be very careful about doing my own massage. Just wondering if anyone else has had a similar warning.

 
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Old 07-04-2012, 04:07 PM   #7
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Re: Wondering about Sjogren's

Mine will not milk, my Rheumy said that all of my glands in my face and in my neck were visably swollen. When I had my glands opened they were sealed shut. Does the heat compress help? I wish I could milk them and make them go down. There are salivary glands in front of your ear all underneath your jaw bone and all inside of your mouth. I have not been told that but mine will not milk anyway. My ENT cleans and opens them he is one of two doctors in the country that does the procedure, its easy and done outpatient. Mine were sealed though so it didn't help me. Good luck.

Last edited by NBY; 07-04-2012 at 04:15 PM.

 
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