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I have pain in my feet and as I person with fibromyalgia pain is something that you grow accustomed to. At any rate, I knew it wasn't the FM that was causing the pain on the tops of my feet and hands. Once I was diagnosed with SS I understood why and how I knew the pain was different. As for the blood test, I have taken it twice and it has been negative both times however my rheumatologist explained that a negative test doesn't mean that you don't have the disease.
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.
Hi Mereeve, I know just what you are saying. I have many of these same symptoms as opposed to dry eye. I was diagnosed about 1 month ago. Have had this pain, I believe all my life but has gotten much worse in the last 5-7 years. Sometimes I feel so inflammed and so much pain and fatigue that I don't know how I will continue to live or even want to live like this for the rest of my life. The Rheum doctor put me on low dose steroids and Plaqunil. I do find it interesting that Diet, water and regular exercise play a huge part in symptoms. I know that when I did weight watchers and stuck to it, I felt much better. I did not eliminate anything completely from my diet as they do suggest, no grains wheat etc; But I think that because I was eating such limited portions of these foods that it actually helped me to feel alot better. So, I am very encouraged by this news. I am planning on starting the elimination of these foods tomorrow and see what happens. I really would give anything just to feel normal, what ever that is as it has been so long. I am also having more problems with sleeping and brain fog. Really hopeful that this will help. Sounds like this diet would be worth while for you to try also.
My 12-year-old daughter was just diagnosed this past June with both Celiac's and Primary Sjogren's Syndrome. Quite rare in a 12-year-old. So she is completely on the gluten-free diet. I do believe that she needs to limit but not completely eliminate all grains in her diet like rice, etc. I do not notice any problems with dairy or egg products. She definately needs vitamin supplements...Folic Acid is huge! This will help prevent any kind of sores that may occur in your mouth from the Sjogren's. She also takes Vitamin D and a Calcium supplement. Her pediatric rheumatologist has warned us NOT to be in the sun. She must wear sunscreen and cover up in the sun. The exposure will aggrivate her disorder. That's why she wants her on additional vitamin d and calcium for her bones that she would naturally get in the sun. She is also on a multivitamin...but again watch everything you ingest! Vitamins, medicines, lip balms, dishwashing detergent, etc. all can have gluten in them. She is also on methotrexate and plaquenil for the pain and other symptoms.
And guess what...now my husband who is 42 is one of the 10% of the patients who is diagnosed with Sjogren's. He also has R/A and Krohn's disease. He has more of a problem with dairy. Each patient is different. He does fine with all grains...we tried changing his diet...didn't make a difference. And funny thing...what seems to help him most with his R/A pain and Sjogren's is the Q-Ray bracelet that everyone makes fun of. It 100% works for him. So he is on no medication for his pain...just his Krohn's.
I stumbled upon a diet for my Sjogren's Syndrome and I wanted not only to share it with others but also to invite anyone else with Sjogren's to share what they have done to manage their condition(s).
Since I began my "diet" I feel phenomenally better. The diet is simple, I eat no grains. No wheat, no rice, no corn, nothing - nada! I do eat all manner of fruit, vegetable, dairy and protein. I eliminated caffeine from my diet. I'm not a smoker or a drinker so those aren't a problem. As with all Sjogren's patients, drink plenty of water.
The philosophy behind my findings is like Celiac Disease (your body's reaction to gluten) causes your body to not be able to absorb vitamins and fluids properly and so you get all manner of other problems. I tried gluten free and it helped a bit, but it wasn't enough that's why I went completely grain free. You should also be aware of the hidden grains in condiments and other processed foods.
About two weeks after starting my diet, I began feeling so much better, I sleep better, I drool when I sleep, I don't feel sleepy after I eat, and my eyes aren't itchy!! Who would have thought drooling would be a good thing? More than anything else is my brain fog has cleared. For a while, I thought I was entering into early dementia and now that awful feeling of brain fog is gone!
Whereas before my diet I couldn't eat eggs and dairy because they caused me a lot of upset, now neither is a problem for me. I was disinterested in food before and now, I truly look forward to my meals.
I'd like to hear from others with Sjogrin's Syndrome - what have you tried and what has worked?
I think the Sjogrin is very painful disease. I hope you get well soon. But you want to get any information regarding leaky gut syndrome then you get that from leakyguttreatment.com
I have been on the no grains diet for about 2 1/2 months and boy what a difference! I am off of at least 3 of my meds, my mental clarity is back and my memory is beyond much improved. I want to THANK Myfanwy because without that diet I am sure I would be in a psych ward somewhere. I am now at the stage where I want to increase my exercise regimen and lose the countless pounds I've gained because of inactivity and false fat reactions due to allergic reactions. Just to let you know, I ate a delicious bowl of rice and peas one day. I ate it because I did not want to resist and was curious to see if something would happen. Within a hour my feet swelled so large I could not bend my toes! Not only was I shocked, I was somewhat happy that my restrictions weren't in vain. I urge all of you to read up on the effects of grains on your system, false fat, reactive foods, trigger foods, food sensitivities etc. I am still amazed at what I found! More importantly, the very things that we are influenced to eat to make us healthy were the very foods that were killing me. Please know that I do have pain intermittently but it is NO where near the level it was before and I don't have many flares. The few flares that I do have aren't nearly as severe considering flares in the past would leave me unable to walk.
I stumbled upon a diet for my Sjogren's Syndrome and I wanted not only to share it with others but also to invite anyone else with Sjogren's to share what they have done to manage their condition(s).
Since I began my "diet" I feel phenomenally better. The diet is simple, I eat no grains. No wheat, no rice, no corn, nothing - nada! I do eat all manner of fruit, vegetable, dairy and protein. I eliminated caffeine from my diet. I'm not a smoker or a drinker so those aren't a problem. As with all Sjogren's patients, drink plenty of water.
The philosophy behind my findings is like Celiac Disease (your body's reaction to gluten) causes your body to not be able to absorb vitamins and fluids properly and so you get all manner of other problems. I tried gluten free and it helped a bit, but it wasn't enough that's why I went completely grain free. You should also be aware of the hidden grains in condiments and other processed foods.
About two weeks after starting my diet, I began feeling so much better, I sleep better, I drool when I sleep, I don't feel sleepy after I eat, and my eyes aren't itchy!! Who would have thought drooling would be a good thing? More than anything else is my brain fog has cleared. For a while, I thought I was entering into early dementia and now that awful feeling of brain fog is gone!
Whereas before my diet I couldn't eat eggs and dairy because they caused me a lot of upset, now neither is a problem for me. I was disinterested in food before and now, I truly look forward to my meals.
I'd like to hear from others with Sjogrin's Syndrome - what have you tried and what has worked?
There is a lot of speculation out there that grains are not a diet that would be eaten naturally by humans "in the wild". Without some processing many grains cannot be eaten by humans and some even carry toxic components in their natural state.
The only thing I might wonder is how you are getting your B vitamins. I hope that you are supplementing or eating other items which are high in B vitamins.
thank you for posting this, it is very interesting. Have you found much in the way of support in the Alberta area, I am in Calgary and still looking for someone that gets that it is more than dry eyes and mouth. thanks and let me know, any info will be a great help.
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.
Joint pain is my primary issue as well, along with bowels and nervous system. I find that slow constant movement, like walking and yoga on a daily basis is by far the best help, along with that I chose a dairy free and gluten free diet, and in the new year I am going to chose all grain free diet, to help.
I have had this condition since childhood and it is hard to deal with, but you are in the right place and many sjogren's sufferers have much issues other than or along with dry eyes and mouth. all the best to you
Hi I have sjogren`s and I hate it. I did not know that certain food could make you hurt.
I love bread, rice, it will be hard. but at this point I am willing to try anything.
does anyone else have pain in their feet? if so what do you do. I am not on any meds right now. I do not have medical insurance and can not get the blood work done. I figure the meds damage the same organs as the sjogren`s I try not to complain and when I am so tired that I hate to get up and go to work I have to push myself hard. I don`t think my family really understands how I feel.
God Bless
Deb
I was having horrible pain when rising in the morning. I could barely stand on my feet it hurt so bad. I read someone else that had the same problem and said peanuts made it worse so I gave up eating peanut butter and the pain went away. What works for me may not work for you, but good luck! Hang in there, the key to making it better I believe is changing ones diet.
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if so what do you do. I am not on any meds right now. I do not have medical insurance and can not get the blood work done. I figure the meds damage the same organs as the sjogren`s I try not to complain and when I am so tired that I hate to get up and go to work I have to push myself hard. I don`t think my family really understands how I feel.
