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 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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Welcome to Connect. Although Sjogren’s has been known to cause ear issues, it must have been awful to lose your hearing! I’m so sorry.
There are many members here who have had similar experiences with Sjogren’s syndrome. Please meet @marylou705, @kyjeanne, and @cmtg; I’m confident they will be able to give you some information.
@graveltruck, can you tell us a bit more about how you were diagnosed? Have your doctors mentioned anything as to how and why your sense of smell may be affected, and are you on a treatment plan?
I lost my hearing overnight. The specialists called it something like Sudden Sensorial Hearing Loss. All 3 said they see 2-3 patients a year with it. Some regain part or all of their hearing. Not me. Stone deaf. However, I thank God it is silent. No roar or any noise.
I have taken thyroid medication for 30 years and prilosec for probably 10.
The Mayo Clinic diagnosed me thru blood tests.
I went to a rheumotologist but he said Sjogren’s was nothing to be concerned about…….. My primary doctor takes better care of me.
My doctors do not offer me any helpful solutions other than what we all read about stuff for the dry eyes and mouth. I have found that taking 3 Flax Seed Caps a day keeps my eyes moist. The only thing that is helping my throat are Halls Honey Cough Drops. I keep Avon Care Deeply lip stuff on my lips which does help until it wears off.
I am not willing to take any of the drugs. I personally think the side effects are too dangerous. Just my opinon for me. I do not fault anyone for whatever works for them.
Fortunately, I have primary Sjogren’s. I see where there are 3 stages of it and later I may develop Lupus in addition to it attacking my pancreas, liver and kidneys.
Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.
Have you considered a cochlear implant? I thought I’d pass on some information from Mayo Clinic, that I was able to find:
Do go to the ‘Expert Answers’ tab, as you will find a lot of information on this procedure.
I would also encourage you to connect with @ladyjane85. and @reneewise50, who seem to have found some solution for dry eyes.
Hope this helps.
I was not one who had anything re: dry eyes,,,…@ladyjane85
My doc, is going to put “plugs” in the corner of my eyes to help keep them humid. I figure its worth a try, not a drug, ye!
Also have humidifyer witch makes a big diffenrence.
Thank you so much for clarifying, @ladyjane85.
I was viewing an older message from August 10, in the Chronic Pain group, where you wrote about having tubes put in near the tear ducts. You can find that discussion here:
Would you be able to offer some insight to @graveltruck who has primary Sjorgen’s, which can affect the eyes? Did it help putting in the tubes, and do you have to replace them?
@mayocl.in/2fbxTuB and @kanaazpereira I am so sorry – I forgot my former dry eyes. I have such other painful issues. Yes, I had trial tubes put in the tear ducts and then the longer lasting ones, and they still are doing a good job. Cannot remember but think my optometrist, told me they would be good for a year. There is no pain involved and you will tend to ask did he already put them in…. @ladyjane85
I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.
There is fluid in the cochlear and the little hairs in it died. So, I am totally deaf in that ear.
Does your skin itch. My arms and legs really itch. I apply lotion twice a day and take benedryl. Guess it helps. It puts me to sleep.
Hi, first experience on such a site, thank-you for ur reply and thank-you to the others who also replied. I’ve been reading some on the site…U people r amasing, u really do care about each other, and u share ur own experiences. I am impressed! Amd thankful ur all out there doing so!
That said, i have dry skin/mouth/nose/eyes (burn, sand, red, flares up). I use Xylitol gum, Xylimelts, Biotène toothpaste + mouthwash, electric toothbrush (added recently). Secaris gel 4 my nose. Hylo drops to lubricate eyes, and now will get plugs. I dont now much about body cream yet, so far i,ve used Aveeno. Recently added an ultrasonic humidifier with option of warm or cool mist. I’ve been using warm mist and it makes a big difference, really. Sometimes i also take Benedryl.
Do u have a body cream to recommende? Thanks
Yes, my skin and scalp itch a lot. I use a mild shampoo and mild soap. Have tried various lotions. Right now using Walgreens Dry Skin Cream. Have just begun on Orencia. Needs a three month loading dose.
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