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.

@redhead63

Hi:
I too have Sjögrens but I do not have pain. Did the Doctor suggested any diet changes? Mind did, she told me try to eliminate grains and beans for 30 days. I am already on a Lactose Fructose and Gluten Free diet. Not by choice. Maybe that’s why I don’t have pain.

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Some people just have dry eyes and mouth. You may not have it w/other organ involvement. I am gluten free and it is debilitating for me. My entire life changed. I went from working full time to such fatigue i didnt want to move along with anaphylaxsis

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@peach414144

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

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@peach414144 I have was just thinking of you and wondering how you are glad your still here good to hear from you It's to bad this is how we do. I have sjorans also but am thankful I just have dry eyes and mouth .I use Biotene it helps me .I do have M.D. and glucoma my eyes water for no reason.I put drops in 4-5 times a day After reading how bad it can get I feel blessed its just my eyes and mouth Bless us all.

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@kimber3429

Some people just have dry eyes and mouth. You may not have it w/other organ involvement. I am gluten free and it is debilitating for me. My entire life changed. I went from working full time to such fatigue i didnt want to move along with anaphylaxsis

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Hello @kimber3429, Welcome to the group. Thank you for posting and sharing your experiences. How scary to wake with your throat closed off! Do you have access to a physician that specializes with Sjogrens?

While waiting for other members of the group to reply, please see the link below. You may find this thread of members talking about Prolactinoma helpful-
https://connect.mayoclinic.org/discussion/prolactinoma-then-some/

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@jamienolson

Hello @kimber3429, Welcome to the group. Thank you for posting and sharing your experiences. How scary to wake with your throat closed off! Do you have access to a physician that specializes with Sjogrens?

While waiting for other members of the group to reply, please see the link below. You may find this thread of members talking about Prolactinoma helpful-
https://connect.mayoclinic.org/discussion/prolactinoma-then-some/

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So far not yet. I have just recently found out about it. My case is being reviewed by a Harvard Dr. That specializes in SS. Just to confirm my Diagnosis. It showed up in my bloodwork. I thought it was more Lupus. But my SS is primary. I had to be off work for a few months. The fatigue severly deteriorated my quality of look life. I have really severe brain fog to the point i can hardly create sentences, talk or comprhend anything. Which i do technical support over the phone for a living. Which ive been at my job 6 years. It has me questioning if i can even continue work with the amount of mistakes ive been making. Its been devestating. I am on Plaquenil now and prednisone. Which really helped the first fee months. Im ferling the effects of brain fog really bad again along with severe aches and pains. After having a non stop flare up for 6 months i thought i was starting to make progress but now i feel like one step forward, 2 steps back. The medication they gave me for the prolactinoma was toxic to my body. So my options are now limited there. I do see a rheumatologist, which i am not sure what he specializes in. This will be my 3rd visiit coming up. My eyes were swelling shut everyday for months and i couldnt get any Drs to listen. Its been a frustrating experience

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@kimber3429

So far not yet. I have just recently found out about it. My case is being reviewed by a Harvard Dr. That specializes in SS. Just to confirm my Diagnosis. It showed up in my bloodwork. I thought it was more Lupus. But my SS is primary. I had to be off work for a few months. The fatigue severly deteriorated my quality of look life. I have really severe brain fog to the point i can hardly create sentences, talk or comprhend anything. Which i do technical support over the phone for a living. Which ive been at my job 6 years. It has me questioning if i can even continue work with the amount of mistakes ive been making. Its been devestating. I am on Plaquenil now and prednisone. Which really helped the first fee months. Im ferling the effects of brain fog really bad again along with severe aches and pains. After having a non stop flare up for 6 months i thought i was starting to make progress but now i feel like one step forward, 2 steps back. The medication they gave me for the prolactinoma was toxic to my body. So my options are now limited there. I do see a rheumatologist, which i am not sure what he specializes in. This will be my 3rd visiit coming up. My eyes were swelling shut everyday for months and i couldnt get any Drs to listen. Its been a frustrating experience

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@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I wish you success ,you may have to see other,s also but the Harvard Dr may find the problem I hope so.

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@lioness

@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I wish you success ,you may have to see other,s also but the Harvard Dr may find the problem I hope so.

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They also specialize in sjrogens & lupus. The harvard Dr id a rheumatogist and he specializes in sjrogens. He has over 35 years experience. Im pretty confident it is sjrogens it doesnt hurt to double check. Ive had 7 crowns this year.i never heard of it prior. My ssb Ro was 53 my ssb La was only 1.

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Hi Kim, A Rheumatologist is your best bet for providing the best treatment for you. I was prescribed Methotrexate many years ago for severe sjogrens with gland swelling and joint pain . It helped a lot and I continued to take it for 10 years . The Rheum will know the best treatment for your particular symptoms. Best of luck, Zenk

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I live in New Orleans, obviously very humid. Moved here a year ago. I live alone except for my dogs. I have had severe arthritis for most of my adult life. There is a theory that burning mouth syndrome and arthritis are related – both autoimmune diseases. Under Sjogren’s syndrome. ( pronounced ‘shogrins’).

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@donnass

I live in New Orleans, obviously very humid. Moved here a year ago. I live alone except for my dogs. I have had severe arthritis for most of my adult life. There is a theory that burning mouth syndrome and arthritis are related – both autoimmune diseases. Under Sjogren’s syndrome. ( pronounced ‘shogrins’).

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@donnass
Hi
That’s an understatement if there ever was one.
I was there at the 1984 Worlds Fair. I can’t count how many times I changed my clothes or how many showers I took.
Jake

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@graveltruck

Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.

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I can relate to that. It happens to me all the time too.

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Does anyone have a low white cell count from Sjogren's Syndrome?

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Welcome to Connect, @mnmboys13.
You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to connect with the many members who are discussing Sjogren’s syndrome.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some informations from Mayo Clinic about Sjogren’s syndrome: https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Could you tell us a little more about yourself? Have you been diagnosed with Sjogrten’s syndrome?

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