ok so my post did not turn out like i thought it would, should have previewed first. try to read and sort out symptoms i have and give me input. seeing reu may 12th. hope he can at the very least help with symptoms.
Most people don't read the blogs, but I'll feature this and hopefully you will get a response. Keep in mind everyone is probably preparing holiday dinners too, but we'll give it a shot.
Keep in mind that with most of us it's "Sjogren's and", as few of us have just Sjogren's.
I can relate to the dry eyes and mouth. Achy muscles and joints, you bet, but I also have Psoriatic arthritis and Fibromyalgia. I sweat profusely, more on winter than in summer. My body is not regulated well here, and I've never had a good answer about it. I can be out in 40 below weather, freezing cold, and my underarms and feet are soaked!
Dry skin is another trademark of Sjogren's, but the leather feel may point to something else, please be sure this is on the list for the new Doc. It may be very important.
Those are the only things I can relate to, yellow rose. I do hope you get some answers soon, I understand how you must be feeling, and the anxiety of not being diagnosed is only adding to things. I am most hopeful that they will be able to make a solid diagnosis and get you on some good treatment.
Hello Yellow Rose, many of your symptoms are consistent with Sjogrens, but you really do need to have this confirmed. You should perhaps ask your rheumatologist if a schimmer test (eyes) and amouth biopsy could be done to help in the diagnosis, Sjogrens is extremely difficult to diagnose but these two tests, together with a blood test for the antibodies should give you a clearer idea. Wishing you every luck and strength, Gina
I have the first four of your symptoms. I also have a dry vagina and use key e for that. My skin is more papery than leathery. I have had a retina occlusion a couple years ago. I try and exercise and eat right like everyone does and some days it’s good and others not so good.i do get fatigued and seem tired all the time. I too am 61 and have been dealing with this for about 10 years. Oh an yes sinus issues…how could I forget? I use an irrigator or ocean spray. I had a lot of sinus infections before using one. I wake up and my throat is full of mucus and I do wake during the night and have trouble opening my eyes so I put drops in them. I do use warm compresses on my eyes at least twice a day and sometimes when they Re really bad I use tranquil eyes that helps. You are not alone with all these symptoms. Hope this helps you some what.
Yes, I have had many of the same symptoms. Dry mouth - I am drinking water all day long; dry eyes - I use Systane eye drops many times a day (I found it better to use drops WITHOUT any preservatives); I have found that taking a good probiotic morning and day help with the constipation along with liquids and fiber in my diet; many of my joints used to ache ALOT. I went on an anti-inflammatory diet along with taking fish oil 2 twice a day which help to control inflammation. In addition I take glucosamine chondroitin 2 capsules twice a day (I started with 2 three times a day). This help the joints to make more fluid to lubricate the joints with help with pain. I use tons of lotion to help with the skin problem. I also have lung involvement and I am going to my second pulmonary spec. currently. He is of a different opinion that the 1st what my problem is. More tests next week which should tell us more.
I so hope this information helps. If you want more info on the diet I will be happy to share. This seems to help me control my symptoms more than anything else. Even with that I still have flare-ups. But life can get better, maybe not perfect, but it can improve. Hang in there! If you keep searching you will find something that will work for you.
This is snowflake again. I forgot to add that when you take glucosamine chondroitin it takes 3-4 weeks to notice a difference. So be patient. I had really helped my joint pain. Good luck!
Snowflake, what brand of glucosamine chondroitin do you take, i have heard spring valley is not the best, and the best is either from chiropractor or gnc or other health food stores but they are the most expensive and spring valley is the cheapest. and where do you get systane eye drops, and what kind of probiotic do you take. i do have to be careful on some things because i take warfin. i used to love brocolli, spanich, kayle, cabbage etc which are high in fibre but because they are also high in vit k i cant eat them anymore. my blood gets to thick and causes blood clots easily. without warfin my blood protime is 1.1, they like it between 2 and 3. vit k is a natural blood clotter which i dont need right now.
As long as we are talking… What fish oil do you use? I was just using nature made from the store but this last time I went to the health food store. I didn’t realize how expensive they were and just for a month. I want something that is pure but without the after taste.
anita, the only fish oil i have found without after taste is health food store, but i was told but havent tried yet, when using nature maid brand fish oil, put in freezer and when frozen the after taste wont be there. i just havent gone back on fish oil since the thrombosis in september because i almost died with that one and i am afraid to take anything that might make my blood thicker. so waiting on reumotologist to inform me what i can or cannot take.
I do use glucosamine chondroitin made by spring valley. I have used other brands as well. When you are taking as many meds as I am there are budgetary considerations. My first rheymy put me on fish oil saying that it is a great anti-inflammatory. I order my probiotics from swansonsvitamins.com. I think there are other brands that will work as well. I look for the sales and then stock up. My naturopathic dr. said that probiotics will last "forever" if you just freeze them and pull them out one bottle at a time.
I buy my Systane drops at WalMart. They have the best price in the area there I live. Also I used to use Biotene to help with dry mouth. but my dental hygienist told me recently that at a conference she attended they said that Biotene has a acid base which would, in the long run dry my mouth out. I had been noticing that I wasn't working anymore. She put me on a mouthwash to use in the evening called Closys (long o). I found it at Walgreens. It helps some but I'm still up drinking water once or twice a night.
I think anyone is wise to let your dr. know all of the supplements you are taking. They, at times, could interfere with the action of other meds.