1. < Autoimmune Diseases

Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

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davelt103 | @davelt103 | Apr 12, 2020

Definitely mention it to your doctor! It's not that you will be coming off as a know it all but you will be presenting your case as someone who knows their body, knows their symptoms and you would be presenting a possible avenue for him/her to follow..
Always voice your opinion to your physician. They are there to listen!

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 12, 2020
In reply to @elmay "I have read that some of the main symptoms are pain in the shoulders and neck..." + (show)
@elmay

I have read that some of the main symptoms are pain in the shoulders and neck along with headache in the temples. Another article mentioned wrist pain. All of these have been present for about 5 weeks. My biannual blood tests are due in mid-June. Should I be asking my doctor to do the lab tests sooner? The pain has been pretty severe when I am at rest. It hurts less when I am moving or exercising. I haven’t mentioned the idea of polymyalgia to my doctor. I don’t want to come off as a know it all. How should I approach this? Can my SS be causing my symptoms? Thanks for your help.

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@elmay, I agree with @davelt103. You should discuss the symptoms with your doctor. You know better than a doctor what your symptoms are and it helps them when you can accurately describe how you feel. It might even help if you can keep a daily log on the symptoms and pain levels so that helps you describe it to your doctor.

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elmay | @elmay | Apr 12, 2020
In reply to @rarelybees2889 "Hi Just weighing in, sorry its late. Nice to meet you all. Diagnosed about seven years..." + (show)
@rarelybees2889

Hi
Just weighing in, sorry its late. Nice to meet you all. Diagnosed about seven years ago. Lots of other autoimmune issues!
How many of you are on Plaquenil? This situation with the shortage really angers me....I didn't realize this drug could cause heart problems! What is everyone doing for dry eyes and mouth? Its sad that many people who don't understand see SS as ONLY dry eyes and mouth...

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Our CVS is saving it’s supply for any of its regular Plaquenil users. I asked about it and they reassured me.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 12, 2020
In reply to @elmay "I have read that some of the main symptoms are pain in the shoulders and neck..." + (show)
@elmay

I have read that some of the main symptoms are pain in the shoulders and neck along with headache in the temples. Another article mentioned wrist pain. All of these have been present for about 5 weeks. My biannual blood tests are due in mid-June. Should I be asking my doctor to do the lab tests sooner? The pain has been pretty severe when I am at rest. It hurts less when I am moving or exercising. I haven’t mentioned the idea of polymyalgia to my doctor. I don’t want to come off as a know it all. How should I approach this? Can my SS be causing my symptoms? Thanks for your help.

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Hello @elmay,

While I don't have much experience with this particular disorder, I have had lots of experience in getting hard-to-diagnose symptoms handled. Bringing in a list of your symptoms and research you have done makes you a diligent patient, not necessarily a know it all.

If you present your information (symptoms/research) in a clear, logical manner, respecting the doctor's background and education, your presentation should go well. I have done it a number of times (even creating graphs of echocardiogram changes) and my doctor is always very respectful of the work I have done.

If your doctor is not respectful, then that would be an issue where you might want to seek a second opinion.

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elmay | @elmay | Apr 12, 2020
In reply to @rarelybees2889 "Just a thought Elmay, but remember that sometimes SS issues do not show up in bloodwork..." + (show)
@rarelybees2889

Just a thought Elmay, but remember that sometimes SS issues do not show up in bloodwork...

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Thanks. That’s a good point.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 12, 2020
In reply to @becsbuddy "@elmay I see that you aren’t a new member. Is the Sjögren’s new for you? I’m..." + (show)
@becsbuddy

@elmay I see that you aren’t a new member. Is the Sjögren’s new for you? I’m going to ask @rarelybees2889 and @zenk and @peach414144 to join the conversation and see what help they can offer. It sounds like having a very dry mouth at night is especially irritating for you. Have you tried any of the artificial salivas from the drug store? Maybe the other members have good suggestions.

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@elmay @becsbuddy - during the years when I had autoimmune gastrointestinal inflammation I started having very dry mouth and eyes. I was tested a couple of times for SS but negative. It was still thought of as a SS autoimmune disease. I would have red bumps inside lips and on palate, tender salivary glands. After finishing my immunosuppressive treatment, the symptoms disappeared.
However, I ended up with enamel damage to my front teeth, they became almost see- through. Anyone else had a problem with the teeth?

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 14, 2020
In reply to @astaingegerdm "@elmay @becsbuddy - during the years when I had autoimmune gastrointestinal inflammation I started having very..." + (show)
@astaingegerdm

@elmay @becsbuddy - during the years when I had autoimmune gastrointestinal inflammation I started having very dry mouth and eyes. I was tested a couple of times for SS but negative. It was still thought of as a SS autoimmune disease. I would have red bumps inside lips and on palate, tender salivary glands. After finishing my immunosuppressive treatment, the symptoms disappeared.
However, I ended up with enamel damage to my front teeth, they became almost see- through. Anyone else had a problem with the teeth?

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@astaingegerdm Your tooth enamel was damaged by your immunosuppressive treatment? Are they still strong? What does your dentist say? I’ve been on prednisone for 2 years and CellCept and now rituxan. No problems so far. Are you sure medications caused the problem?

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1 reply
elmay | @elmay | Apr 14, 2020
In reply to @astaingegerdm "@elmay @becsbuddy - during the years when I had autoimmune gastrointestinal inflammation I started having very..." + (show)
@astaingegerdm

@elmay @becsbuddy - during the years when I had autoimmune gastrointestinal inflammation I started having very dry mouth and eyes. I was tested a couple of times for SS but negative. It was still thought of as a SS autoimmune disease. I would have red bumps inside lips and on palate, tender salivary glands. After finishing my immunosuppressive treatment, the symptoms disappeared.
However, I ended up with enamel damage to my front teeth, they became almost see- through. Anyone else had a problem with the teeth?

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What is meant by autoimmune gastrointestinal inflammation? How is that diagnosed. I sure have GI issues.

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elmay | @elmay | Apr 14, 2020

Thanks for the advice. I think I will talk to my doctor about "my diagnosis".

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1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 14, 2020
In reply to @becsbuddy "@astaingegerdm Your tooth enamel was damaged by your immunosuppressive treatment? Are they still strong? What does..." + (show)
@becsbuddy

@astaingegerdm Your tooth enamel was damaged by your immunosuppressive treatment? Are they still strong? What does your dentist say? I’ve been on prednisone for 2 years and CellCept and now rituxan. No problems so far. Are you sure medications caused the problem?

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@becsbuddy - I did not express myself correctly! The dryness of my mouth and little saliva when I had symptoms like Sjogren's caused the enamel to disappear. I got a lot of my teeth capped- now they look beautiful! Fake on the outside.

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