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04-09-2016 05:52 PM
April is Sjogren's Syndrome Awareness Month. While Sjogren's Syndrome is classified as Primary or Secondary, it can affect virtually every organ of the body and typically includes very dry eyes and mouth. The muscle, joint pain, neuropathy and fatigue can be debilitating. Fairly recently, it took an average of 8 years to be diagnosed and can take 3 or more years now. If you know someone who appears to have symptoms of Sjogren's please suggest that he/she talk to their PCP about testing. A wealth of information can be found at the Sjogren's Syndrome Foundation website.
04-09-2016 06:02 PM
I have most of the symptoms but my test came back negative
, no one can figure out what is going on I am going to see a Rhumotoligst in a few weeks
@msgardenia wrote:April is Sjogren's Syndrome Awareness Month. While Sjogren's Syndrome is classified as Primary or Secondary, it can affect virtually every organ of the body and typically includes very dry eyes and mouth. The muscle, joint pain, neuropathy and fatigue can be debilitating. Fairly recently, it took an average of 8 years to be diagnosed and can take 3 or more years now. If you know someone who appears to have symptoms of Sjogren's please suggest that he/she talk to their PCP about testing. A wealth of information can be found at the Sjogren's Syndrome Foundation website.
04-09-2016 06:28 PM
I was diagnosed with MS in 2007. I remember my neurologist testing me for Sjorgren's. So many of these diagnoses have such similar symptoms... Thanks for the awareness post.
04-09-2016 06:37 PM
I was diagnosed with Sjogren's. I never knew there was an awareness month. It can really be a challenge. What helps me the most is eating fresh, natural, unprocessed food. No dairy or grains. It helps, but it's hard. I still haven't given up my beer and chocolate. There is only so much a girl can sacrifice. 😁
04-09-2016 06:44 PM
Did you have a lip biopsy and or bloodwork? I had symptoms for years before it showed up in my bloodwork with a positive SSB. It took about 10 years to be diagnosed but my first symptom before dry eyes and dry mouth with neuropathy in my feet. There are so many possible symptoms and symptom similarities for various diseases.
The first Rheumie I saw for a few years did not diagnose Sjogren's; however, my Internist did. Be persistent and don't give up. Good luck and I hope you have a good experience wih your Rheumatologist.
04-09-2016 06:46 PM
I'm sorry for not posting reponses correctly...I'm still trying to get the hang of things here.
I will never give up chocolate...
04-09-2016 06:48 PM
@luv-the-Q wrote:I was diagnosed with Sjogren's. I never knew there was an awareness month. It can really be a challenge. What helps me the most is eating fresh, natural, unprocessed food. No dairy or grains. It helps, but it's hard. I still haven't given up my beer and chocolate. There is only so much a girl can sacrifice. 😁
I will never give up chocolate but I know diet is important. Kudos for sticking to a diet that helps with Sjogren's. It really can be a challenge. What is your most difficult symptom? How long have you had Sjogren's?
04-09-2016 06:51 PM
@StillFuntoShop wrote:I was diagnosed with MS in 2007. I remember my neurologist testing me for Sjorgren's. So many of these diagnoses have such similar symptoms... Thanks for the awareness post.
I'm so sorry about your MS diagnosis. You are so right that there are so many similar symptoms and so many overlapping diseases. These auto immune diseases are really tough to diagnose and deal with. How are you doing?
04-09-2016 07:13 PM
@msgardenia Amen to the chocolate! Arthritis and muscle aches are the worst. Dry eyes and mouth are annoying, but nothing compared to the joint pain. Also, some days your body feels like it's made of lead. It's overwhelming just to get up and go. It took years to get the diagnosis. My rheumatologist diagnosed it. Sometimes, I still don't believe it. I prefer to believe I have plain old arthritis and aches. Once I got the diet down to real food I had much improvement. I don't even have to take the medicines for symptoms anymore. Those were as bad as the disease itself. Now and then I have to take Prednisone for inflammation, but that is rare.
I can tell you that you can find relief, but it takes a lot of trial and error, research and sacrifices. I'm sure everyone is different. Don't give up!
04-09-2016 07:22 PM
@luv-the-Q wrote:@msgardenia Amen to the chocolate! Arthritis and muscle aches are the worst. Dry eyes and mouth are annoying, but nothing compared to the joint pain. Also, some days your body feels like it's made of lead. It's overwhelming just to get up and go. It took years to get the diagnosis. My rheumatologist diagnosed it. Sometimes, I still don't believe it. I prefer to believe I have plain old arthritis and aches. Once I got the diet down to real food I had much improvement. I don't even have to take the medicines for symptoms anymore. Those were as bad as the disease itself. Now and then I have to take Prednisone for inflammation, but that is rare.
I can tell you that you can find relief, but it takes a lot of trial and error, research and sacrifices. I'm sure everyone is different. Don't give up!
The mental fog isn't fun either. So many days I feel like I'm walking through a vat of molasses. I agree that the muscle and joint pain is the worst. However, I've had a few corneal abrasions that weren't fun either. I'm very interested in the diet aspect of this. My daughter was just diagnosed with gout at age 32 so we're pursuing that diet too. My mother had Sjogren's but she wasn't diagnosed unil age 82.
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