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.

@fleure

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

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@fleure welcome to this site I'm glad to hear you have the dryness also I've had dry eyes for ages but no Dr diagnosed it ,then all the other dryness followed hearing loss so have h.aides, dry mouth but the eyes drive me crazy ,feels like sand in eyes ,burning and the drops don't help all that much. Glad you posted I'm going to be more aggressive with my eye Dr.As I have macular also.Dr did put me on Perservision AM D it's OTC. Where did you find Hylo drops? And how often do you use? Thanks Linda

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@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.

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@oregongirl It is frustrating I know Dr.s out hear listen to me but really don't do much to help Pain Dr.inj.back but it only last for awhile I need something to help daily but nothing has helped I can't believe the wealthiest country in the world and all they think no of is exploring space why can't they explore the human body and come up with results I am suppose to go to sons for pool party today but I feel like crap Other countries take care of finding cures ,don't understand it .

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@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.

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It's absolutely SAD and PATHETIC, that the UNITED STATES, has the means to solve problems and help those in NEED; but our GOVERNMENT doesn't seem to CARE! I frankly feel CHEATED, EMBARRASSED, and AFRAID, to be in our Country! I'd prefer living in a Country where EVERYONE SOLVES PROBLEMS TOGETHER, and actually CARES about the CONSTITUENTS to WHOM they SERVE!!!!!

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@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.

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Hello @rachelanne, welcome to Connect where we the people – patients and volunteers are part of the solution not the problem. We share our health stories, ask questions and learn from others with similar health problems. I came here in search of answers for my idiopathic small fiber peripheral neuropathy and other health issues. One of the things I have learned is that I need to be my own advocate and learn as much as I can about my own health history and background so that I can ask better questions and communicate better with my doctors. Hopefully through better communication comes better treatment.

@rachelanne are you able to share what brought you to Connect? Whatever it is, I'm glad you found us and I'm hoping you will find some answers here.

John

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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 just spotted your post today. I don't want to scare anyone away but I really need someone who understands… today especially. I have had Sjogren's for as long as I can remember. Have always had trouble with my teeth even though I am scrupulous about taking care of them. Earaches since I was a child. I also lost my hearing totally in the left ear suddenly 3 years ago in August. I am so lucky to have a husband who at least acts like he's listening but I'm sure he doesn't always want to. I belong to a fun group of artists that get together weekly to paint for two years now. Today they had the music so loud it was impossible for me to think let alone paint. Someone would ask me if it is too loud and turn it down the next song someone would turn it up because they liked that song. It seems like she's the one always doing that. 2 years already and I have to always be the bad guy. I'm so down about it today I'm thinking of quitting. The worse part about it is we are new to this area and this is about the only activity I really enjoy. Thanks for listening. We can share more about you and hearing if you reply I can be a good person to talk to on a better day.

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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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Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

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Warm Epson salts bath and soak

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@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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@redhead63 , my bestie has that very same thing. Hi, I'm @mamacita, and you can usually find my comments on the Fibromyalgia, Depression, and Autism sites. My friend is on a no sugar, extremely low carb diet, and usually has no pain in her hands. The only carbs she consumes come from fruits and veggies. Fruits allowed for her are a small handful of blueberries or strawberries. She is religious about it because of her Type 2 Diabetes. Everything works better for her on this plan. Just thought you might find it interesting!

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@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

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Dear Jih658.2: I am 81 and the following are some of the times sjogrens has acted up on me. It has a mind of it's own. Often enough when there is a great rash over a joint (foot, hand, finger, knee, etc. then: within a few months from that, the joint becomes red, swollen and painful for at least one, two or three months. FOR EXAMPLE: Rash over the knee area on the top of the knee (not under the knee), then the pain after the rash leaves. And so on for the foot (and again there is no rash on the botom of the foot. and then the pain for months. Same for the hand. Rash only on the top of the hand but none on the bottem of the hand, except for the fingers, the rash s all over the fingers and when the rash is gone for about a months time then the pain for one, two or three months. Perhaps this is just for my body and maybe it is different for other people. I have been lucky for I have hardly any deformed bones. (so far) Good luck and with caring Peach Barb

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@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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See my reply below please

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@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

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My joints started swelling only a few years ago, hands, wrists, toes. I was also diagnosed with Sjogren's many years ago and so far that's been the diagnosis accept now rheumatologist says inflammatory arthritis. I noticed that red meat makes it worse also corn products. I try to avoid sugar. I have to limit salt for my blood pressure but if I don't the swelling from the salt also makes the inflammation and pain worse. Whether or not it helps I try to drink an anti-inflammatory tea recipe I found online and use the spices also suggested in cooking at health websites. I do eat a lot of walnuts and blueberries. I just don't want to be a fanatic about foods and diets. One of these days someone is going to say brocoli is bad for us.

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@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

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Don't get a rash but I do get Raynaulds often and then pain. Have you mentioned the rash to your doctor. Maybe something else is going on also. If you have one auto-immune diseases you're bound to get more even if it takes years to develop.

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@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

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I have Sjogrens too and I was getting a chest scan frequently from m.y Cardiologist.  He kept spotting something in my right lung and we thought it was the Sjogrens but this time I got a shock.  It was lung cancer so I had a lobe removed in May.  Add to that I had a stroke in January and I now have an infection on my liver!  I am only saying this is possible, but rare.  I also have itchy ankles.  Primary problem is Psoriatic Arthritis.  Have you tried an OTC cortisone ointment on your itch?  @marylou705

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@jlh658

Hi I have had Sjogrens for about 20 yrs, Just started having joint pain in both thumbs and and my toes. At first I thought it was arthritis but now assuming its from Sjogrens. Don't have appt with rheum. for awhile. Any suggestions to ease the pain make it go away? And curious why it started–just progression of the disease? Appreciate any comments!!!!

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Hi Barb,thanks for sharing. No rashes or swelling anywhere so far. This is a nasty disease. I thought I was done getting new issues since I have had all my teeth pulled and have a mouthful of implants, wear hearing aids to try to counter act the tinnitus I have gotten, have moderate to severe kidney issues and of course the terribly dry eyes and infections. Also have two spots on my lung they have been watching. My mom is 87 and only has terribly dry eyes and thats lucky for her. But I got it around 40 so I assume thats why everything is worse. Who knows? I am not anxious to make dietary changes but I will try that since I am so tired of taking medicine. I appreciate the way everyone shares what they have and what they do to try and help. I appreciate all of you. Thanks Judy

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