I have been diagnosed with this and I’m in pain most days and would like to have discussions.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
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.
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.
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!
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.
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.
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.
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.
@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
@ 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
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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