I have been diagnosed with this and I’m in pain most days and would like to have discussions.
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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
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!!!!
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.
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.
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
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
@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.
Marylou…that is horrible. Now I know why I took an entire year to have a plate placed in my clavical. It was splinters. I wanted to have it left alone. I was terrified ad to what else could happen to. I am finding it difficult to trust doctors anymore. My Vertibra was crushed when I fell. Again surgeon brought his whole staff in to explain what they would be doing. If they didn't I could not walk without a brace. Two days later I said ok, and they took me immediately before I could change my mind. They used concrete to repair. I was drugged heavily.
I just don't think they look at Ys as individuals.
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 have had temporary plugs put in and they really helped. My Dr. didn't want to put the permanent ones in as he was concerned about having to take them out. He has replaced them a few times but they are wonderful. I was using drops every 15 minutes and now I can go for hours without using drops!
Should I start taking plaquenil that has been prescribed by my doctor for inflamation caused by sjrogens syndrome I am very nervous of all the side effects of this medication especially possible loss of vision.
Is there anybody out there that has taken or is now on this med?
hi, going out on a limb here, so work with me, ok. Having myself just gone through an emotional awakening a few years back and spending the last 10 years learning about how /i have left psychologists puzzled by my success.
So, here it is for you to run around in your head. What does the brain do when a person is out in the freezing cold? The brain has a back up plan for every possible situation that might shut it down, in other words its a survivor. Now the brain shuts off circulation to the limbs. Right?
I believe with all mind and body illnesses the brain is the one behind it all. Just imagine your brain getting a signal telling it, the eyes are never outside, so they fail to need to produce moisture, like they would if they were outside all the time.
Take Alzheimer for could it be the brain is realizing the person is using pictures to remember people, push one button on a phone and a call is made, and so much more, so the brain realizing it can be a little more effencient by shuting down part of the brain used for memory. don’t need memory working so hard when there are tools to use.
Thus, use the medication, but, don’t depend on entirely. spend more time outside or at a floral shop. find things to that will tell the brain need to work here, need moisture. Too the medication might work even better by being in places you normally be go. goodluck
Use glasses…the Jackie O type if your outside and it is breezy/windy…really helps cut down on the drying effects of the blowing air…also inside if near a air handeling unit. I have been using a honey based drop as the others also have scarey side affects longterm. So far so good. Helps to stay really hydrated. Drink lots of water and other fluids., down side is alot of bathroom visits, but I notice a big difference if I don’t. I am trying my best not to use DMARS and so far so good.
How severe is your Sjogrens? Some times it pays to slow down and not just react to a “diagnosis”. Now that you know what “it” is research on line, get a second opinion..investigate alternative remedies, the more we know the better choices we can make for ourselves. We are fortunate to have access to medications, but they often come at a price or create other health issues….as side effects. But make informed choices and good luck.
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