Just found out a month ago...first symptoms were weird feeling in feet and burning in my feet at night. Don't really have the dry eyes and mouth, however I do have horrible teeth, lots of cavities. I was told to go on a gluten free, dairy free, sugar free, fun free kind of diet. Wondering if anyone has any experience with changing their diet? Also anyone try any acupuncture for pain (mine is mostly the feet)? Appreciate the help.
Hi
I try and stay away from caffeine, eat lots of fruits and vegetables. I also drink lots of water.
I have done acupuncture for a leg and foot injury and found it worked really well for me.
Their is no one in our area that practices it now but if their was I would go to them. Make sure to check their background and credentials if you decide to do this.
It’s hard at times for me to admit and at times harder to abide by it, but a very strict diet does seem to help me. I have bladder issues too, so on top of all that you mentioned, I’m trying to avoid acidic foods too. I have lupus and SS, so fatigue can be an issue, but when I eat in the manner you mentioned, fatigue is significantly improved and pain is somewhat improved. I have odd pains and numbness in one foot. I have found strategically placing cushioned foot pads at the bottom of my foot helps. There is an OTC cream called NeuroCream that is helpful, but I’ve graduated to one the doctor prescribed for me that is compounded with several meds in it including an anti inflammatory and lidocaine. Hang in there!
Hi Kat,
I was diagnosed in October, but I had been dealing with this disease for over a year. I have hypothyroidism too, so initially I thought my symptoms were because of that. But I kept getting worse really fast. Dry eyes and dry mouth were actually the last symptoms that hit me. Long before that, I was getting horrible fatigue (that was the worst - I was practically bedridden). Then my feet were freezing cold all the time, which I now know is Raynauld's Syndrome and is apparently very common with autoimmune diseases. Then came constant headaches, joint pain, and everything else.
When I got to see a rheumatologist, and finally got a diagnosis, he put me on Plaquenil...that medicine has been a lifesaver. I'm still not "normal" and I still get tired easily sometimes and have to pace myself, but I am much, much better now. The fatigue isn't anywhere near as bad as it was, and the joint pain is mostly gone. At least now I can actually have a life. You should talk with your doctor about Plaquenil, if you haven't already. A lot of people with Lupus or Sjogren's Disease have been helped by it.
Now I'm going to say something which some people might not like. But please be very careful and skeptical about the whole "gluten-free" thing. It has become a huge fad now. Suddenly, everyone is allergic to gluten. There is even a "Gluten Free Magazine." Unless someone has a true, diagnosed digestive disorder which causes them to be allergic to gluten (like Celliac Disease), then there is no basis for believing that you have any kind of allergy to gluten. This sounds just like the "Atkins Diet" that was super popular in the late 1990's. Remember that? And look now, does anyone talk about it anymore? Please be careful about jumping on the "Gluten-Free" bandwagon.
I seriously doubt changing what you eat will have much impact on an autoimmune disease like this. I would be skeptical in general about thinking that a change in diet will suddenly, magically cure a systemic autoimmune disease. Unless you are actually deficient in certain vitamins and minerals, then changing your diet just isn't going to have much of an impact. Of course, it's important to eat properly to maintain your health (and prevent health problems from getting worse), but changing your diet is not going to magically cure a disease.
What will help is to be sure you tell your doctor about all your symptoms, especially any new or worsening ones, and to listen to your body. Get plenty of rest and try to avoid stress as much as possible. I don't know if you have noticed any rashes or light sensitivity, but you might want to consider using sunblock, even in the winter. My rhumatologist said that Sjogren's Disease can cause sensitivity to ultraviolet light and cause rashes. It might even trigger a flare where you get worse symptoms or a relapse of symptoms. You read about that with Lupus, but apparently it can happen with Sjogren's too. I get rashes on my arms (although honestly, there are times when I still feel like I might have Lupus).
It's good to educate yourself too, and try to learn as much as you can. Just be careful about where you get your information. There is a lot of junk on the internet, and you have to watch out because there are a lot of bogus health guru websites out there claiming to have the cure for everything with some "herb" or "supplement" they're selling. And others will claim that a "gluten-free diet" will cure everything from hypothyroidism to cancer. I'm surprised that someone hasn't tried to say it will cure measles yet. You have to get your information from reputable sources. I get mine from government websites and actual reviewed medical articles. To me, this disease is just too serious and life changing to mess around with.
Like a lot of other disorders, Sjogren's Disease can hit people to varying degrees. Some people might have minor symptoms like just dry mouth and dry eyes, while other people (like me!) will have their lives turned completely upside down. The good news is that there are treatments available. Unfortunately, as you probably know now, there is no cure. But there are medicines and treatments which can make things a lot easier.
Hey... I want to piggy back a little on that... It is true that going fully gluten free isn't necessary for a lot of people. I think that people should use caution before going to any extreme. However, wheat, sugars and dairy are known to contribute to inflammation. Reducing these foods can and does make a difference for many people. (which my rheumy says can be amazing for some). The thing you have to remember is that everyone's body and their disease is different. You may want to take it one food at a time and figure out what works for you. I have done better limiting the above mentioned and I do notice if I stray off the diet for a week or so. It takes a while to get back to feeling good if I do stray too far. Figure out what works for you. Some people here can't take nightshades, while I run well on them. Same with red meat. While there is no cure, there are things you can do at the base level to help your body run more efficiently.
Oh and Gateway is totally right about not jumping on to some of the junk posted on the internet. A lot of it promises cures that "the medical community doesn't want you to know about". Even if it isn't that blatant, there is a lot of misinformation. While we do need to stay well informed we also need to be very careful of getting our information from reliable sources. Even some so-called research studies aren't well executed. Work with your doctors like part of Your T
I too have been helped tremendously with change of diet. Avoiding nightshades and gluten DO help with inflammation and pain, and dairy contributes to the terrible mucus problems I experience constantly.
My rheumy says there is absolutely no evidence changing your diet helps. You can raise your consumption of stuff like cherries for joint pain, omega 3 fatty acids, etc., which are food for you anyway. I was told by my gp to go on that diet, plus all nightshades were no-no's too. I asked my rheumy before I started the diet before I tried it because no one is going to make me stop eating tomatoes without a fight, lol. GP also said I couldn't have beans or legumes of any kind. I decided if that was what it took, I would just suffer. Thank God my rheumy said it was purely experimental with no evidence in its favor. But.. as stated by others here, the disease is different in virtually all of us. What would it hurt to eliminate one food or food type for a week or two if it could work for you. Unless, of course, it is tomatoes! YUM! I can't give up my favorite food!