Sjogrens
I have been diagnosed with this and I’m in pain most days and would like to have discussions.
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graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
@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?
Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2120
Joined: Oct 09, 2016
@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?
Hi @graveltruck,
Have you considered a cochlear implant? I thought I’d pass on some information from Mayo Clinic, that I was able to find:
http://mayocl.in/2fn2TZo
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.
ladyjane85
@ladyjane85
@ladyjane85
Posts: 119
Joined: Apr 06, 2016
@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?
I was not one who had anything re: dry eyes,,,…@ladyjane85
Fleure
@fleure
@fleure
Posts: 12
Joined: Nov 05, 2016
@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?
Hi,
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.
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2120
Joined: Oct 09, 2016
@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?
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:
http://mayocl.in/2fbxTuB
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?
ladyjane85
@ladyjane85
@ladyjane85
Posts: 119
Joined: Apr 06, 2016
@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?
@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
graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
@cmtg 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.
graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
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.
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Fleure
@fleure
@fleure
Posts: 12
Joined: Nov 05, 2016
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
marylou705
@marylou705
@marylou705
Posts: 101
Joined: Oct 04, 2016
@graveltruck 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.
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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blindeyepug
@blindeyepug
@blindeyepug
Posts: 164
Joined: Apr 30, 2016
I think Auqaphor works really well. I also use a moisturizing body wash (Olay). I slather Auqaphor on after my shower.
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graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
@graveltruck 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.
I have found that tree tea oil shampoo plus rinsing with witch hazel does help my head. My arms and legs keep itching.
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Fleure
@fleure
@fleure
Posts: 12
Joined: Nov 05, 2016
@graveltruck 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.
Thanks! I’ll give it a try, my shampoo (Stieprox) isnt as effective lately.
Have a great day!
Fleure
@fleure
@fleure
Posts: 12
Joined: Nov 05, 2016
@blindeyepug I think Auqaphor works really well. I also use a moisturizing body wash (Olay). I slather Auqaphor on after my shower.
Thanks! I’ve seen Olay but havent tried yet. and I’ll check for Auqaphor too.
@graveltruck
In reply to @colleenyoung
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.