Sjogrens

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.

@kkteel1

I forgot about the terrible brain fig I suffer from its no joke its seriously bad to the point that my mother in law comes by frquently during the day to make sure I have put the towels in the oven and turned it on or something. Sorry to have to post all of my problems but im in serious need of some guidence, help and just some compassion would even be nice.

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Yes my Rheumatologist is the one who diagnosed me and she just acts like its nothing and just try and control my dry mouth eyes and nose. She put me on methotrexate for my psoriatic arthritis and it has helped and has helped clear up my psoriasis. The wierd thing is that I am having all these liver and pancreous bile duct problems and none of my DR'S are putting 2+2 together but it seems from what im reading that my bile problems and pancreous problems could possibly be related to my sjogrens

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@kkteel1

I forgot about the terrible brain fig I suffer from its no joke its seriously bad to the point that my mother in law comes by frquently during the day to make sure I have put the towels in the oven and turned it on or something. Sorry to have to post all of my problems but im in serious need of some guidence, help and just some compassion would even be nice.

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@kkteel1, Thank you for your post. I would like to welcome you to Mayo Connect and say that we are pleased to have you join this discussion. I want to provide this link to information on Sjrogen’s. I invite you to look at it since you have been recently diagnoses with this autoimmune condition. http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
I cannot begin to imagine how frightening this whole situation must be for you. I am concerned that from what I am reading, there is no one person who is coordinating your medical care. With all of the symptoms that you are describing, it is no wonder that you are looking for some “guidance and support, and compassion”.

I am not a medical person, but I am concerned about your mention of stents. That is the only part of your message that touches on my experience. How long ago were they inserted, and do you have any follow-up for that? I once needed stents in my bile ducts, but they slipped out of place, and were useless. Might be something to look into.

We are here to support you, and we do have good ‘listening ears. But we are not able to provide any diagnosis.
Does anyone live with you or near you, to lookout for your comfort and needs?

Rosemary

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@kkteel1

I forgot about the terrible brain fig I suffer from its no joke its seriously bad to the point that my mother in law comes by frquently during the day to make sure I have put the towels in the oven and turned it on or something. Sorry to have to post all of my problems but im in serious need of some guidence, help and just some compassion would even be nice.

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Hello @kkteel1,

I’d like to add my welcome too; you don’t have to be sorry at all! This is what Connect is all about: sharing, supporting and learning from one another’s experiences.

@jewel8888 @oldkarl @marylou705 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne do you have any insights for @kkteel1?

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Greetings from Jacksonville! Horrible dry eye and dry mouth. Using 4 over the counter eye products with hot wet compresses…they are the best for eyes. Complicated with dystonia in eyes, cervical, tremor in voice box and GI tract.
Water as soon as I drink it, it flows downhill. Been on a Plant Based Diet and helping lower GI tract. Now 80% off of gluten and have not had my ongoing spasms in my esophagus that stops me from breathing. Spasms from dystonia with sicca equals weird body I’d say. Test positive for Scleroderma with High Titers…? Have the F-word, fibromyalgia, designer bones = osteopenia, no balance on right side from an infection in right ear years ago.
Teeth enamel pretty much off with bad recession of gums. So I need to put a car in my mouth, to have a good smile as I once did. Can’t afford the teeth reconstruction, like buying a new car?
Dry eye with dystonia in bright light closes my one eye, wearing a hat and FL-41 dark glasses that wrap around.
People think I wear the hat and dark glasses day and most nights for fashion…the Maui Jim’s filter is the best for glare on the market I have been told. Glare, bright sun is resulting in moving back up to a city with public transportation, DC area. Hate to not have the Mayo Clinic 12 miles away. They have made me successful with this weird body!
Any suggestions? I’m blue eyed, DNA Scandinavian, British, German, Dutch ,French, Irish so I got what I got!
Hard to move but I need public transportation, and not live in a car society.
Comments, please……wishing you all well, Kristina

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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i had plugs put in all 4 ducts. sorry to say: no relief however, restasis used twice a day helps somewhat. there is sort of an antibiotic in restasis that helps prevent infections because of the dry eyes. i have been on restasis for about 10 years now. i think the plugs might work if your dry eye problem is not to severe. trying to help.

Liked by nybronxbombers

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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I get plugs in my eyes every 3 months. They wear down & by the next of my next appt they are gone. I thought the plugs would be annoying. In reality I feel them at all.

I was diagnosed with Shogren’s Syndrome last month via a inner lip biopsy. The surgeon said that he could tell when he made the initial incision that I have SS but he would send it to the lab as backup. The lab reports supported the surgeon.

It was a relief to get a diagnosis but frustrating because the treatment isn’t a cure, just a handle of symptoms.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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I use Restasis twice daily and it does have something in it.  If you need something in between, I use liquid tears with no chemicals in it.  My CPAP seems to make my eyes drier.  We're at 6200 ft and it's very dry in CO.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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Welcome to Sjogrens.  I have recently had cataract surgery on both eyes, and have Chronic Sinusitis.  Restasis works quite well for me.  And Biotene Spray and Gel at bedtime.  Theramints also.  Good luck!

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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there is a different cpap mask that if you have upper and lower teeth you can use it. it is very small and i think it might be better for your eyes. ask your doctor about this. besides the restas[s i also use liquid tears. but each person must listen to their doctor.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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I need a full face mask because I will happily breathe through my mouth!  That's why the one I had before didn't work for me.  I'm marylou8 on this group.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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My first mask covered my nose and mouth. I could never get comfortable because it was leaking all the time.

Now I use a tiny one which is so small, it only covers my nose. However, the air pressure is such that if I open my mouth I feel like I am choking. So I keep my mouth closed when I am sleeping. Much better.

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Hi, @gemmax and @mickie75 — I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome — in themselves or in a loved one — here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 — wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Liked by Gem

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@lisalucier

Hi, @gemmax and @mickie75 — I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome — in themselves or in a loved one — here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 — wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

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@lisalucier Lisa Lucier, Connect Moderator My first symptom of sjogren ’s was 23 years ago. One side of my face and neck swelled huge and was painful even to the touch. I was coming back from a trip when this occurred. As soon as I got home I went to a new doctor that I had seen only a couple of times (my doc had retired) He said I had an ear infection and put me on antibiotics. A week later I was back. in his office with a very dry and painful mouth, lips and swollen tongue. He then said that I needed to see an IM doc which I did immediately and she sent me to a rheumatology department at a regional diagnostic hospital. I went for about a year before I saw a doctor. (a 200 mile round trip)They did a type of X-ray of my right parotid gland (a sialogram??) and it showed a lot of inflammation. They decided to biopsy a lip salivary gland. 1st try they couldn't find any 2nd try they couldnt find any. 3 rd try they thought that they found one, but it turned out to be a nerve. My lip and a part of chin was numb for 10 yrs! Anyway my lip glands had atrophied and been reabsorbed by my body. Since that time, my mouth has been dry and painful, although I do have some saliva, from the left parotid.SJS also causes very dry nasal passages and sinus problems and dry and painful eyes. I use artificial tears eventually it causes a number of other systemic problems. Sjogren’s was the second autoimmune illness that i have. I had Sarcoidosis in my lungs within 2 years of having Legionaries disease. It iscommon for a severe infection to cause autoimmune problems. I will write more about sjogrens ,my search for help,and what treatments that I have had and how i manage it now, tomorrow. I am going to bookmark this post.It is difficult at times but it can be managed. Tomorrow, Gem

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@lisalucier

Hi, @gemmax and @mickie75 — I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome — in themselves or in a loved one — here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 — wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

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@ Right now the nails on my right hand have decided to rot and peel away. Somehow they are not painful. This happened last year. All the nails crumpled up and slowly fell off. When the nail bed was exposed there was great pain. It took a long time for the nails to grow back. So…….here we go again but i think that only the thumb and the pinky will be affected this time,l I have a boyfriend and darn it I have the skin peeling off of a portion of my nose. A medicated cream seems to be working. I am 80 an the boyfriend is 85. Grab on to the world it will not stop turning around. Have a good ride. There are nice people and then there are the others. Be a good guy and be there for yourself and others. Never stop helping others and yourself. Whjy? Why not. What else is there ? More of the same agonies so work with it and cry when you have to it seems to be a good release of tension and heartache. With love Peach414144

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@lisalucier

Hi, @gemmax and @mickie75 — I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome — in themselves or in a loved one — here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 — wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

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I forgot to add. Thje doctors here do mot know what to do. perhaps there is nothing to do. But the doctors can not even say a work of consolement. I do not even think they look up in their medical books for a way to help with the pain WITHOUT OPIOIDS . When I was at the dermatologists with a great skin rash over the entire foot I told the doctor there was great pain with the rash and was told there is no pain with psoriasis. Theyw ere wrong and the horrible pain lasted for three months. I was fairly a cripple as I live alone. The doctor should have ordered medicare to send me hekp for a while. Well, I did need to lose the 15 pounds. It can get horrible. But hang on the good times will come soon enough and we will know how to appreciate the god days. Shame to some of the people in the medical field when a person comes to them with peeling skin a[most exposing the bone and tell you they cannot help you but come back in 3 months for your next visit. WHAT THE HELL IS WRONG? ARE THEY OUT FOR THE MONEY AND NOTHING ELSE.? What a screwed up world. But still. you must be strong AND believe in yourself. Continue to hang in there and you will win. peach414144

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