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Hi I have just come across your message, on your diet.
I am new to this sjogrens symdrome and I must say that 2011 was a very difficult year for me as I unaware of my condition. I would like to keep in contact with you. I am trying at the moment to keep off gluton, and will try the grains and corn and rice and see what happens. Good luck and keep intouch. Yvonne
I was wondering how any of you was diagnosed with having Sjogren's. I'm still undergoing test to see what is wrong. I heard the main test was having a biopsy taken from the salivary gland, but the Dr. refuses to run that particular test on me, although he states that I have all the symptoms for Sjogren's.
I was diagnosed with Sjogren's syndrome about 3 years ago. I was placed on plaquenel and a low dose of steroids. It was awful. I had terrible side effects from the medications. The pharmacy filled the prescriptions double what they should have been. I had nightmares, anxiety, insomnia, headaches, and just could not function. The doctor finally got the prescription straightened out with the pharmacist, but it was still hard to deal with the side effects. I discontinued taking all medications. I still feel horrible most of the time. Dry mouth; dry, itchy eyes; cramps and pain in my joints; and extreme fatigue. I am a nursing student and can hardly keep up. I am so exhausted all the time and now I am finding that I really can't remember as I used to. I am only 47 years old and feel like an old lady. Nursing school is very fast paced and it is taking all I can give to stay in it. No one understands what I am going through so I try not to complain. I tried the Biotene as my dentist recommended, but I hate the taste of it. I drink a lot of water but was just recently told by my dentist not to drink water in excess because it washes away the natural moisture in the mouth, causing the mouth to be even more dry. My motto is "keep it moving." I push past what I feel all the time. There are days that I literally have to stay in bed all day. I did talk with my physician about this and his advice is that on those days, that is what I should do. It is so hard to do it but I don't have a choice. I had to learn not to worry about the house or my family on those days; that it is more important that I get the rest that I need so that I can be more effective on my better days. I am sorry to read that others have the same issues, but on the same hand it feels good not to feel so alone in this.
Has anyone experienced loss of hair. I'm losing hair extremely fast and it sickens me, because I always got compliments on my long blond hair and by the end of this year if I can't figure out what' causing me to lose my hair, I know I'll be bald. On top of the pain and dryness, now hair loss. It's disgusting.
Thank you for this insight! I was diagnosed with Celiac disease years ago so the gluten free is a no brainer for me. I do eat rice and live on caffeine at this time, but I will try this approach to deal with the Sjogren's. I may not be a nice person going through the caffeine withdrawal, but in the long run it will be worth it!
Thanks for the diet information. I have been newly diagnosed with Sjogrens Syndrome. Until I saw my family physician for dry flaky ears and discussed the dry eyes, dry mouth, dry skin, and bilateral hip pain, I though my symptoms were due to aging. This week after visiting with a Rheumatologist, as recommended by the family physician, my symptoms are finally mking sense. I plan to make some drastic dietary changes. It will be very rewading to feel less dry and experience less brain fog.
After 2 years of struggle being sick memory failing and going from no medicine to being on 16 different, just found out that I have sjogerns syndrome, and possibly my 12 year old son may have it. I don't know at what point other people are at, but my thyroid is way out of whack, my cholestorol is the same as thyroid, my sugar is high, I have uncontrollable dizzy spells, i have lines in my vision, I have problems swallowing where it feels like things are getting stuck in my throat, i have severe digestive problems, and my organs are starting to shut down. The only reason this was caught at this point is because i have been getting severe leg cramps...not just in the calves but in my thighs, and not just at night, it is all day long....I do have liver disease and had asked my doctor to check my enzymes and when he found out about leg cramps he did a complete work up on me...in which in 2 years he has not done that. I love my doctor and he has been doing everything in his power to help me...I only wish this had been caught sooner. Hopefully if this is what my son has as well it will be treated correctly. I am going to try the diet advise you all have given and see if this helps me, if anyone has any suggestions on anything else it would be greatly appreciated. Thank you for all your sharing.
Iwas diagnosed with Sjogrens.Lupus and RA. Imuran made me sick I am now on Plaqunil, I have always been a very active person ,this has disabled my life, truly pissed and trying to deal with it the pain fatique and brain fog is unreal, Any suggestions? I am a person of faith this is all that keeps me going
Iwas diagnosed with Sjogrens.Lupus and RA. Imuran made me sick I am now on Plaqunil, I have always been a very active person ,this has disabled my life, truly pissed and trying to deal with it the pain fatique and brain fog is unreal, Any suggestions? I am a person of faith this is all that keeps me going
I notice this thread began in 2008; however, the illnesses mentioned are still with us, unfortunately, although, I didn't read every post. I have systemic lupus, with other auto-immune illnesses including Sjogrens. I've always thought of Sjogrens as an incidental part of my woes and am amazed at many of the responses. I must refresh my memory. My arthritis is not RA, but, is the one that goes with lupus. Its main symptom is pain, but, not deformity as in RA. I had no idea diet had anything to do with any of it. No physician has ever mentioned diet.
Managing diet, sleep, rest and stress reduction are huge with lupus. I was in denial for a long time about my lupus. And the effct of diet on lupus. And eating in a routine. Less processed food the better.
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what to do
