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Myfanwy I apologise for gate crashing your thread but I am unable to find my way around. I google Sjogren's and came to this site but have come to a full stop. If anyone is reading and can redirect me I would be very grateful.
I am very newly diagnosed and am totally ignorant.
What I was wanting to know about is mainly my hair and nails. My hair is so dry I have to wash it every second day (even though my hairdresser says it doesn't need it and I am drying it out.) It is so unbearably itchy and dry the water seems to help.
With my nails they split across but way up on the nail bed. I have just been thinking maybe this is also part of the problem.
Hi Ann: Read my new post that specifies my diet that I follow - my hair and nails are better and stronger for following my diet. I recommend the book Going Against the Grain by Melissa Diane Smith.
I have had mild sjogren's syndrome symptoms for many years. I have also had stomach problems for all my life. I finally decided to try a gluten free diet. After eliminating wheat and eventually corn, virtually all my stomach problems were gone. I am soo anxious to try being grain free. I have great hopes it will help my sjogren's symptoms.
I have sjogren and celiac. My diet gluten free of 5 month , I take steroid on reumatologist. My pain ( jont in hand ) is very big. Ja no eat No wheat, no rice, no corn, nothing - nada!. I eat potato, carrot, broccoli, fish, turkey.
1) When you have celiac , your sjogren is secondary sjogren.
2) When you not have celiac, your sjogren is primary sjogren
I have secondary sjogren because i have celiac.
My ANA is negative, hipergammglubime too
16march.2009
p/ transglutaminazie EMA IGA - 66 ( 0-8 )
p/ endomysium TGA IGA - 529 ( 0-8 )
3.april.2009
p/ transglutaminaze TGA IGA - 9 ( 0-8 )
16.april.2009
p/ transglutaminaze TGA IGA - 6 ( 0-8 )
p/ endomysium EMA IGA - 143 ( 0-8 )
To day my antibody are near zero.
my questions:
1)When i have better?
2) Do you have celiac?
I have found that eating anything with Aspartame in it will trigger a 3 day flare up. Has anyone else experienced this? My rheumatologist doesn't believe me. However, I can drink one can of diet soda and suffer for 3 days afterward.
Hi all, I have been gluten-free for a while now and think it helps. I am not celiac but do carry the gene for it. Wheat makes my eyes itchy, sneezing and bloating. I found nuts of any kind made symptoms worst (itchy and diarrhea) and the joint pain is a lot worst eating potato. I suppose we all react differently. But what has definitely helped me are 'cold water' salmon oil capsules. They calm the intestines.
What I can't seem to overcome is the dry and itchy scalp. Any suggestions. I have tried hemp shampoo, dry skin lotion etc but the scaling and itch always comes back. help!
Hi..The grain free diet is working well for me. It makes a huge difference as does the garlic and fish oil I am taking. I also notice that when I limit other carbs--especially sugar--that helps tremendously. Mostly, I am eating meat and vegetables. Also, I really have to make sure to get to bed early. Thanks for putting the idea out there about the grain free diet. I REALLY appreciate it.
I am new to this forum but have found these posts very helpful. I am currently seeking diagnosis confirmation from the Cleveland Clinic for a diagnosis of Primary SS. I DO NOT suffer at all from dry eyes or dry mouth at this time but tests indicate positive for this. My main problem is MUSCLE AND JOING PAIN and stiffness to the point where I cannot participate in hardly any of the physical activities I used to enjoy regularly (biking, hiking, aerobics, spinning). The pain is constant and sometimes so bad that not even NSAID's provide relief. I am constantly fatigued because the muscle pain and cramping in my legs and arms keep me from being able to fall asleep and stay asleep throughout the night.
Does anyone else with diagnosed SS suffer these symptoms as opposed to the dryness issues? I feel like my symptoms are WRONG for this condition, most blogs and articles focus on the eye/mouth issues. Is there any relief for the muscle/joint pain, any diet or supplements that can be followed or used? I feel like I am getting no answers from medical providers, even the Cleveland Clinic has not been as helpful and I had hoped.
I'm not ready to give up on getting back my former lifestyle, please if anyone else has had experiences like mine I welcome any feedback or suggestions. Thank you so much.
I am sorry about your diagnosis. I was finally diagnosed with Sjogrens about 6 years ago. My biggest issue at the time was a burning tongue. I went to a rheumatologist who confirmed SS. I had muscle and joint pain and was also diagnosed with Fibromyalgia. The Sjogrens and Fibro are causing my muscle and joint pain. I'm taking Lyrica and Plaquenil and 800mg of Ibuprofen 3x a day. I also see a chiropractor 3 times a month and try to get a deep tissue massage 1-2 times a month. I'm not pain free, by any means, but it all helps. I try to take the dog for a walk everyday and get to the gym whenever I can. I am also very tired but the medication helps me sleep so the pain doesn't constantly wake me up. When I went to a new massage therapist recently he asked me when I received the "death sentence". Yikes! That hit home. Good luck.
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