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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Brain Fog and Sjogren's

 

What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is Brain foginappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.

 What YOU can do about Brain Fog:

tear Manage your lifestyle to optimize your health and sense of well being.

tear Develop a close working relationship with your doctor(s):

  • Always report changes in cognition/memory and mood (depression, anxiety).
  • Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients
  • over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
  • Inquire about your hormonal status, thyroid function, and blood pressure.

tear Additional actions:

  • Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor.
  • Minimize stress and anxiety:
    • Set realistic expectations
    • Plan ahead
    • Take breaks throughout the day
    • Learn relaxation exercises and practice them at regular intervals
    • Balance work and leisure
    • Let yourself laugh
    • Talk about feelings
  • Limit multi-tasking and focus on one task at a time.
  • Reduce caffeine and alcohol.
  • Manage effectively musculoskeletal and joint pain.
  • Exercise regularly. Adequate physical exercise enhances cognition/memory.
  • Train the Brain! “If you don’t use it, you will lose it.”
  • Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally
    stimulating activities and establish new friendships and relationships.
  • Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function.
  • Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s, not the absence of any disease!

tear Suggested reading: The Memory Bible, by Gary Small, MD, Director of the UCLA Center on Aging, available from the Sjögren’s Syndrome Foundation.

***This information is from the Sjogren's Syndrome Foundation's "Patient Education Sheet: Brain Fog." Click Here to view more Patient Education Sheets from the SSF.

We encourage you to comment below and share what you've found helpful when dealing with Brain Fog & Sjogren's.

Comments

On the job, I came to the point where I had to use "cheat" sheets for everything. Some days when I worked customer counter however I couldn't even remember where to send people for information, etc. and I couldn't make change! The anxiety I experienced was astronomical. Is there a possibility that the "brain fog" is linked to some sort of vasculitis?
Posted @ Tuesday, January 08, 2013 3:45 PM by Barbara Nicolai
Brain fog is a very frustrating and made it difficult for me to continue working in accounting. I function best in low stress situations and have had to set boundaries for myself. I totally agree that the anxiety it causes is frustrating. At times I felt like I was giving myself mini panic attacks.
Posted @ Tuesday, January 08, 2013 5:38 PM by Mary Meyer
My husband says I don't focus, I'm spacey and don't pay attention (he has to tell me to look at him when he's talking so he knows I'm listening). I also occasionally am confused. All of these problems seem to coordinate with the diagnosis of my Sjorgrens. I know exercise is important but fatigue is a big problem for me and I don't have the energy. I have always been very active so it's especially hard on me. Any suggestions to help with the fatigue would be appreciated. I have two Rheumatologists and when it comes to fatigue they don't seem to have any answers.
Posted @ Tuesday, January 08, 2013 6:06 PM by Cynthia Schwarz
I was having a lot of fatigue. I decided to up my Vit D and these days I'm doing much better. I also take a Vit B50 daily and try to get lots of sleep. Sleep is another whole issue.
Posted @ Tuesday, January 08, 2013 6:45 PM by Sandy
Brain fog, confusion and slight speech problems have worn me out, completely. I am really struggling to stay employed.
Posted @ Tuesday, January 08, 2013 6:59 PM by Mary Beth Lowery
I have the hardest time remembering numbers I have to write everything down. And the fatigue is also really bad. Also If something is abbreviated such as OIP(orignal Italian Pizza) I for some reason say IOP ??? It is so frustrating. I am only 53 and sometimes I think I am 83.
Posted @ Wednesday, January 09, 2013 9:26 AM by Tamme
i'm 44 yrs old, suffering from sjogren's syndrom 8yrs ago but is diagnosed from 3 yrs.  
eye dryness, fogy brain, has not any ability to do anything and can not sleep at all. 
i take plaquenil daily, avara daily and lustral too for depression. 
i feel good but not all the time 
 
thanks good for every thing. 
Posted @ Wednesday, January 09, 2013 10:57 AM by khaled
I was told I have Sjogrens in April 2012 Now I know why my mouth, eyes, & nose is so dry. My throat is so dry it hurts most days. Hard to talk a lot of times. I take Evoxac for meds it helps with some of the dryness with my mouth and throat. But my eyes are so dry they burn and itch most days. Fatigue all the time. Can't remember anything. Always for getting something. It's really hard for me to deal with this. The swallowing is the hardest. Sometimes I feel like I am going to choke to death. Wish there was more to help with this disease.
Posted @ Wednesday, January 09, 2013 11:40 AM by Judy
Find the fatigue/sleep issues contribute to the fog. It is more difficult to deal with than the pain usually. And no one has answers for it. Spontanity is great but one can not live life in a spontaneous manner unfortunately. 
I would love to go back to work, part time. But the unpredictability is the problem. Some times I can link triggers, other times there is no rhyme or reason. Vey frustrating.
Posted @ Wednesday, January 09, 2013 4:18 PM by Pat
I have heard that many sjoggies suffer to forget somethings and special as you to tired.  
 
Posted @ Wednesday, January 09, 2013 4:51 PM by Richard Troost
Has anyone tired holistic approaches to dealing with some of this? I started taking gingko biloba for fogginess, increased vitamins for energy and use a humidifier at night. I think the humidifier has had the best effect so far. The brain fog is so very frustrating and is tied to the fatigue for me.
Posted @ Thursday, January 10, 2013 5:20 PM by Kathy D
I am also suffering to brainfog and cannot sleep well that is also because of the neurological pains at my body, so is sitting and lying in bed. So the fatigue becomes also trough such things. It is very frustrating to want to do working but it is not possible. People and also dorctors too, do not believe you because they are seeing nothing......They do not understand you.For the neurological pain they cannot help me. Perhaps does someone knows something to help me further with this specific neurological problems? Especially the nerves at the bottem of my body and leggs. Thank you!
Posted @ Sunday, January 13, 2013 6:28 AM by Alma Siereveld
I use lyrica. But because I am obn the chemotreatmenttherapy the Lyrica is not so working. In March we look farther when I have got a appoitement with my neurlogist.
Posted @ Sunday, January 13, 2013 6:59 AM by Richard Troost
Tucker Inventor Medhat Atef Mohamed Awad "Egyptian needles like acupuncture" and obtained a patent from the Egyptian office of patents. 
These needles are made ​​of gold or silver or platinum and are divided into two types: a vertical acupuncture needle is designed to be twitching in a manner so as not to exceed the vertical puncture the skin surface directly and the length of the needle 2 mm. The second type is a needle to be installed under the surface of the skin length of 2 cm, is the installation and acupuncture in specific placements body; so that they have an effective impact in controlling the chronic diseases that affects treated medically, such as nail psoriasis and acacia and fish-eye and a nervous breakdown and all mental illnesses. 
 
actually i did it and stop all medicines from 2 months, i wish every body try it. thanks god. 
Posted @ Sunday, January 13, 2013 1:32 PM by khaled
Yes, I have tried a number of less abrasive measures for the symptoms I was experiencing. Comfort measures really do help the situation.  
Fish, flax, olive and avocado oils have helped the skin and dry eye/nose issues quite a bit. 
As far as the energy issues/stamina/fog goes....it doesn't always go so well. Thankful for the good days... 
Neurological symptoms come and go, 
joint pain, did a year of BV every other day for a year and it was very helpful. And so is a mister next to the bed, sleep a little easier. 
Trial and well, trial....no errors... comfort is always worth efforts.
Posted @ Thursday, January 17, 2013 5:36 AM by Pat
Thanks for the response Pat. My only question is what is BV? (pardon my ignorance). :-)
Posted @ Thursday, January 17, 2013 9:49 AM by Kathy D
Hi Pat  
What kind of flax oil is that in pill form? The mister is that a humidifier? What is BV?
Posted @ Thursday, January 17, 2013 7:19 PM by Judy
BV is Bee venom, I did live honey bees for a year, every other day. It was very effective for the joint pain. Not the easiest form of treatments, but really worth it. 
There is an injectable form available, used with an insulin syringe, that is said to be a bit less painful. I always iced the area before application. (I worked with a MD back in the early 90's and she utilized this for the arthritic patients. 
Flax oil, I always use the liquid types, organic. This needs to be kept in the fridge.Flax can become rancid easily. I take 3 tablespoons each morning. And I cook with lots of olive oil and avocado oil. 
Yes the mister is a humidifier.  
Another product that I have found to work for my eyes is Boric Acid. Your pharmacy will have it behind the counter. I mix 1/2 teaspoon into a pint of boiling water, cool to room temp. I wash my eyes out each morning and evening and the eye issues are far less frequent. Moisture drops am/pm and in the winter I use them as needed. The dry heat of winter aggravates the situation. 
Diet changes has helped improve the situation also I believe.  
Hope you find relief. The trial and error with the comfort measures is worth the effort, most of them become habit and really do improve quality of life.
Posted @ Friday, January 18, 2013 4:34 AM by Pat
The Doctors want to put me on Restasis for my eyes but I really don't want to get on more meds if I don't have to
Posted @ Friday, January 18, 2013 8:17 PM by Judy
I have been dx: with LUPUS for 1 year now. 
Every day I wake up, there is something else wrong. Went to the docter's on Wednesday, and just had residual trace of the 2 weeks of Celulitis on both feet/feet. 
I started to have some sores in mouth and tongue 4 hours after the visit. Went to the docter's again this morning and my mouth is very full of sores, black tongue syndrome is worse. 
They just told me to stop all the mouth washes I have had scripts for, and stop the Biotene toothpaste, mouth wash, and sprays.  
My mouth is killing me tonight, and I have been doing research all day. I came across this site where you all have a blog. I don't like joining "thongs", but this blog has me feeling a little better tonight. 
 
Thank god you are there for me tonight. 
 
SMILES (nancy)
Posted @ Thursday, January 24, 2013 8:58 PM by nancy m.
I hope you feel better Nancy. Sorry you are having so much to deal with.
Posted @ Thursday, January 24, 2013 9:33 PM by Judy
Hey NANCY ! I also have had a black tongue too. So the doctors have controlled my bowels, but they were all right. Many visits later I was diagnosted with an allergy to nickel in FOOD but also to the skin of course. Nickel allergy in food is not wellknown it is hidden in food such as bread and so Ialways have to eat whitemeal products and have to cook not in aluminium and so on. Als peanuts and chocolate is forbidden. Even my tooth........and thats is a worse thing I cannat have dental implants because of this, so it is a drama . After a while I have live with an empty mouth........awful, lovely greetings from Holland, Alma
Posted @ Monday, January 28, 2013 9:16 AM by Alma
The penny finally dropped for me during the process of being tested for celiac. The immunologist made me eat tons of gluten foods for 6 weeks prior to testing to ensure an accurate result. They were the worst 6 weeks of my life - the worst brain fog I had ever experienced - trying to think was like staring into a black hole ... nothing made sense, I couldn't string two intelligent sentences together, couldn't think or remember anything. I had trouble staying awake during the day, then couldn't sleep at night. I was a mess, and my eyes were the worst they had been in years. The tests came back saying I had "no problems" with gluten, so the immunologist said it was fine for me to continue eating it. However, experience has taught me I do much better when I omit gluten from my diet. Gluten free also helps with oedema. I no longer have "cankles" (ankles shaped like cans). 
 
I also tried a 7 day juice fast and 90% of my Sjogren's symptoms simply went away, and I didn't have to take any meds for about 6 months (I normally take Prednisone between 5mg & 15mg daily, depending on how much pain I'm in). It was fantastic. I plan on doing the juice fast thing every 6 months. It's hard work, but worth the effort (but if you want to try it, make sure you are supervised, try Jason Vale or Joe Cross programs online, and work with your doctor or dietician). 
 
My advice to anyone with Sjogren's is to do some research, start experimenting with changes to your diet & see how you react. I've discovered I react severely to RYE in any form, worse than to general wheat based gluten. I also can't eat oats. My energy levels are noticeably better when I make an effort to eat low GI. Many gluten free foods are very high GI, so you have to be very careful when trying Gluten Free diets. 
 
I hope this information helps someone. 
 
Posted @ Friday, February 08, 2013 7:41 AM by Cheryl
Cheryl: Your post was very interesting. Question: what is GI? You indicated many gluten free foods are very high in GI. I have been tested for celiac and test was negative so wondering how avoiding gluten helps SS?
Posted @ Friday, February 22, 2013 9:39 AM by joy
I also too was wondering who avoiding gluten helps SS. I was negative tested for celiac. I have tried to eat some food whitout gluten, but I was not to able swallow it! @Cheryl I think GI is the sugar level in blood.Bye Alma
Posted @ Sunday, February 24, 2013 1:15 PM by Alma Siereveld
How do you find a reputable nutritionist who might help with gluten or other food allergies. I am HATING these medicines for dry mouth (have every possible side effect) and wish the Sjogren's Foundation would give more support in the area of natural supplementsor diet--not so many drugs all the time. Didn't I read somewhere that Venus Williams has had a good bit of luck with raw diet???
Posted @ Monday, March 04, 2013 4:22 PM by Virginia (Ginny) Fodor
Sorry for the delay in replying (and for the long post) - yes, GI is the Glycemic Index, which is the measure of how quickly/slowly a food causes your insulin levels to rise.  
 
@Ginny, Of course, the official answer is to consult with a dietition, but quite frankly, I've found all these "experts" to have their own agendas, they all seem to have some extreme belief, such as "no dairy" or "no meat" or "high protein", lots of grains, then no grains. You will get confused and probably spend a lot of money for the privilege. 
 
So, having run the "expert" gauntlet, and thousands of dollars later, I have now learned to listen to my body very carefully, and follow my "gut instinct", pardon the pun. As Michael Pollan points out about disease free indigenous cultures all over the world "... The Masai subsist on cattle blood and meat and milk and little else. Native Americans subsist on beans and maize. And the Inuit in Greenland subsist on whale blubber and a little bit of lichen," - all healthy not because of what they do or do not eat (in terms of meat / vegetables / dairy / fat or no fat, etc.) but in that their diet is composed of natural foods, i.e. not processed, no preservatives, no flavour enhancers, no long shelf life, and no plastic wrapping.  
 
So I just eat pretty much whatever I like if it grows in the dirt or on a tree (although I do insist on organic and/or free-range grass fed (not grain fed) meat, chicken, eggs, etc.). I react to seafood, so I steer clear of that. Bread & flour-based products are processed, and the gluten gives me grief. Although I've just been experimenting with Ancient Grains bread, and I'm ok with it (yay!) 
 
I've read a lot of books & info on the subject, but my favourites - 'cause they make sense - are: 
"Wheat Belly" - Dr William Davis - a real eye opener. 
"Farmacists Desk Reference" - Don Tolman (Don is THE guy for no-nonsense info on Whole Foods) 
"In Defence of Food" and "Food Rules" by Michael Pollan - well researched, beautifully written, will help you make peace with food, and learn to appreciate REAL food. 
If you can't afford to buy the books (or don't like reading), there are lots of Podcasts & YouTube interviews with all of them you can download & listen to/watch for free. 
 
I try to make as much of my food as possible at home, from scratch - no bottled sauces or packet flavour bases. Just fresh herbs & spices, fresh ingredients - like Grandma used to make! Unfortunately, I was spending 3/4 of my life in my kitchen, so I got a Vitamix and a Thermomix, which cut my cooking time down considerably. They are both pretty expensive (particularly here in Australia, for some unknown reason), but worth it if you can afford it. If you're on a budget, I'd start with the Vitamix (cheaper), then get a Thermomix (does the cooking as well) further down the track. You can still make hot soups in a Vitamix (and they are technically still raw, which is great), plus your juices & smoothies, prep meals etc. The more raw stuff I eat, the better I feel. But I'm not a fan of raw - and it's tough on our Sjogren's affected teeth! - so I do a lot of slow cooking, steaming, braising, etc. 
 
I, too, have noticed all these Sjogren's foundations & associations focus heavily on drug-related therapies. I get so frustrated with it, I'm thinking of creating my own website where people wanting to know about natural therapies can get together & share their experiences. (And here's a hint - a cooled Cammomile tea eye bath works a treat for my eyes, much better than any eye-drops I've tried - very soothing & cleared up infections quicker than they antibiotic drops the eye specialist had given me).  
 
Posted @ Tuesday, March 05, 2013 2:50 AM by Cheryl
... And I forgot to mention an important benefit of having a Vitamix (or similar kick-ass blender) - SPEED & 20 second clean-up. On those days when I have zero energy, I can always find enough to put some frozen fruit/berries, a splash of milk or yoghurt & a few ice-cubes (and some raw cacao powder, if I need a chocolate fix) into the blender & whizz up a smoothie. It's my healthy meal when I'm too tired to cook - my personal super-sized "fast food" that doesn't leave me feeling worse the next day. Hands up everyone who has experienced lying on the bed, too tired to move, with your stomach grumbling so loud you can't hear yourself cry? Yeah ... get yourself a serious blender. You won't be sorry.
Posted @ Tuesday, March 05, 2013 3:04 AM by Cheryl
@Joy and @Alma - When I avoid gluten, I notice (1) less pain in my body (2) dramatically less fluid retention/inflammation (3) less brain fog (4) more energy.
Posted @ Tuesday, March 05, 2013 3:07 AM by Cheryl
Cheryl, I agree the push is for drugs and more drugs. There is a lot of info out there, but it is never a one size fits all. I had symptoms for a couple of years and found myself addressing them as things came up. Since skin, eyes and mouth where becoming increasingly dry...supplemented with fish oil, increase of "good" fats etc. Started the flax....and so on..it is trial and error to some degree...and patients, some take time to see results. More natural remedies for the most part do not happen as "quick" as a chemical/prescribed ones (although there are always exceptions). Diet is a big one, literally get to the GUT of the matter.  
As far a finding a person/naturopath or dietitian...think you can do well on your own. I found that my knowledge exceeded theirs, for the most part. I was a nurse and worked for a few more progressive physicians then what is usually found out there. And so, from what I have observed there is no such thing as a one size ideal...we are all wired a bit differently etc. 
Perhaps, you could suggest to your physician food allergy testing. It may save you a lot of time and you could go from there. 
Active bowels are important to expel toxins...keep them moving. 
I have used chamomile and linden tea bag soaks. I have also found that especially when a flair occurs (eyes feel like bolders/sandstorm exposure) that a mild solution of Boric Acid, a 1/2 tea. dissolved in a pint of water cooled wash eyes with an eye cup. Don't seem to need it as much now, with the exception of winter/dry heat/wind. 
Still have fatigue issues, and the randomness, and range of intensity is terribly unpredictable...think this is the worst issue of all.  
Trial and no errors..:)
Posted @ Tuesday, March 05, 2013 8:12 AM by Pat
@ Nancy You might try using coconut oil for you mouth may help with the sores and dryness as well. I use it when ever my mouth feels inflamed or if my lips get dry I use it as a lip balm I had tried many lip balms and they never help me but the coconut oil helps alot with both . Hope this helps
Posted @ Tuesday, March 05, 2013 12:00 PM by Cathy
Coconut water is very hydrating also...and a nice change from water :)
Posted @ Tuesday, March 05, 2013 12:48 PM by Pat
Cheryl Thanks so much for your informative comments--have already order the Wheat Belly book up from our library. You are so right about "the experts" having their own biases; think that's why I hesitate to go there... 
 
We grow our own collards, kale and spinach (especially easy to grow in our Southern US Winters), but we're waiting for real Spring to come around to plant more now. Can't wait to make those green smoothies for lunch again and we only have a Ninja but it does the job for us. (I also add protein powder, a little fruit juice and 2-3 fruits with the greens.) Thanks for your input, Ginny
Posted @ Tuesday, March 05, 2013 1:41 PM by Virginia (Ginny) Fodor
Thank you all for your information. It is very helpful to share.
Posted @ Tuesday, March 05, 2013 4:13 PM by joy
Thank you each for posting. I feel as though others do understand what I am going thru. Neurological/feet/toes/fingers, horrible pain, doctors tried diff. things and didn't know what else to do.Desperate, I looked online. Found a place in ID that has studied for yrs. about pain in feet. Guaranteed to help stimulate nerves etc. Now have it delivered every mo. Totally pain free in feet. Also cleared up my sores on tongue/mouth. I take lots of vitamins and eat super healthy. I still cannot gain weight over 107 lbs. Dehydrate easily. Drink Zico as an instant IV. Cottage cheese, cheddar cheese and boiled eggs pick me up. I get so tired I almost drop. Still have to work at 69 so don't have a choice. This forces me to keep keeping on even in the really bad days. My neck feels broken all the time. I finally started taking ibuprofren only thing that touches some pain. Throat dryness so much it squeaks when I swollow. My spine will hurt when I swollow or turn my head. Pain moves around all the time. I have splitting skin and very dry mouth.tongue. Coughing with dryness but I have asthma so maybe from that too. I also am on heart med. that causes coughing so never know. I still keep trying to ignore all of this. I do not want it to get me depressed. Please do any of you think it is a never ending battle and want to give up? I don't feel like I can share this to others, only ones that are going thru it. Thanks for listening.
Posted @ Thursday, April 04, 2013 12:05 AM by Ronni
I have been reading all of these posts, and I can't believe how much I can relate to most of this! But I have to ask, have all of you had positive ANA and RO/SSA or RO/SSB tests?  
I have SO many of these problems/symptoms but I have only had a positive RO/SSA so I can't get a definite diagnosis!! I am sick of telling doctors my problems/symptoms only to hear ~ your eyes/mouth aren't dry enough, your test results are not far enough into the abnormal range, etc.  
I have had "brain fog" for YEARS now and they all look at me like I'm making this stuff up! I hate that you all have it but I have to say, I was really glad to come across these posts, it's like finding proof I'm not crazy! My first experience with it was forgetting the name of a child that I took care of in my daycare! I had to ask my young daughter his name! My biggest concern now is that I have had three pleural effusions with no evidence as to why lung specialist says autoimmune rheumatologist says NO!  
I am going to start keeping a medical journal to keep track of everything because I can't remember anything and I've had some docs retract statements, lose test results/records etc. 
Thank you all for the posts, tips, and advice! Even if I don't have a positive Sjogren's diagnosis, I plan to try these things!
Posted @ Friday, April 05, 2013 11:56 PM by Lisa
I guess I should have said that my list of problems/symptoms is way longer than pleural effusions and brain fog, but I thought I would spare all of you! The list includes a diagnosis of degenerative disc disease (I have osteoarthritis in several places the worst of which is my neck and upper back) my new rheumatologist says this is all normal for someone my age... I am not even 49 yet! :( 
She says if I get my anxiety under control, learn how to relax and get more quality sleep, a lot of my problems will go away! :)  
Posted @ Saturday, April 06, 2013 12:12 AM by Lisa
Yep..gotta love when they blame it on your inability to control anxiety (this disease has brought out the sarcasm big time, but hey...humour, no matter what type will pull you through). I couldn't live with out it!  
The sleep depervation alone will increase this 100 fold. That coupled with all the other symptoms that contribute to it. Not to mention that life marches on and, well, needless to say it and events can also contribute to the stress margins. 
I feel blessed when I obtain 6 straight hours of sleep at a time! 
The fog/very feisty fatigue, that is unpredictable at best causes anxiety also. Live it and you'll have a clue what we're talking about! There's that sardonic coping skill again...:)! 
Dispite the ability to meditate and utilize other relaxation methods IT still happens, even on good days when I am able to exercise etc. Clueless, really...so don't take "their" comments and woeful suggestions to seriously, it will only worsen the stress level and increase your anxiety. And get a Rx for Xanax. I use it for sleep (not on any other meds, but did do a round of Rituxan, for Bcell Lymphomia). Rarely do I use it during the day, but if I can not control it (often successful)I take a 1/4 or a 1/2 a tablet..., works like a charm. 
Since this is causing you some anxiety in itself (your physicians comments) I suggest you and well, everyone obtain your medical records on an ongoing basis...it will enable you to see if they are on the same page as you, frequently they are not. Or they have screwed up with content and either they are way to overworked, don't care, or are high themselves....Move on..., wish I had done this early on as it would have saved me a considerable amount of time and ANXIETY/STRESS. 
My heartfelt condolences to all who have encountered any resembelance to my experience. What doesn't kill us will only make us stronger. 
Find your voice and make it loud and clear....I had a voice, and was making myself heard...but no one was listening....My RA factor was over 500...that only begins to tell my story. 
Good luck, believe in yourself and your body's voice and don't back down. Get your records and stand your ground, smile and know they really are clueless with some issues. 
Comfort measures can and do help most of the time, but not always and that is a reality of this disease for many of us.
Posted @ Saturday, April 06, 2013 1:30 PM by Pat
For @LISA I recognized your problems about diagnose, please read this carefully it is from my dokter J.P. van de Merwe from the Netherlands. He is written also about that! Here is the link:www.van-de-merwe.eu/Sjogren 
Lovely greetings, Alma Siereveld the Netherlands
Posted @ Sunday, April 07, 2013 7:00 AM by Alma Siereveld
For @LISA and others of course :) 
Mentioned that rheumatologist are looking after sjogren in a different way than immunologist do!
Posted @ Sunday, April 07, 2013 7:06 AM by Alma Siereveld
I am asking a total different thing: Are there people who also suffering to allergy to wool and woolalcoholics ???? It is in cremes and I am looking for cremes for my very dry eyes and skin, face, without woolalcoholics ??? 
I have uses for example duratears . My eyes are damaged. 
Please who knows more about this and can help me? Thanks a lot! Greetings Alma
Posted @ Sunday, April 07, 2013 7:12 AM by Alma Siereveld
@Alma, You might give organic coconut oil a try for your dry skin I have trouble sometimes with my lips getting very dry and this is the only thing I find to help it and is good for your skin. some times when I feel like my gums are getting inflamed I use it in my mouth as well. I use over the counter eye drops to moisten eyes doctor can give you salegen for dry eyes & mouth good luck 
Posted @ Monday, April 08, 2013 4:01 PM by Cathy
I am newly diagnosed with sjorgens... I have been doing some research that titanium or any metal implants can cause auto immune disease. Does anyone else have implants? Would love to hear if you do...I am seeing a Dr. about getting my out soon.
Posted @ Monday, April 08, 2013 5:16 PM by Catherine
@Cathy thanks for your answer! I already taken salagen (pilocarpine) only once a day 1 from 2,5mg but I am reacting not good on it because of my asthma. Oke I am looking after coconut oil! And eye drops I also already have this but my eyes are damaged and it is not enough, therefore I have to take eyeointment but now I am suddenly allergic for that because of the woolalcoholics. But thank you ! Greetings from Alma the Netherlands
Posted @ Tuesday, April 09, 2013 10:46 AM by Alma Siereveld
@Catherine I am diagnosed years ago with Sjogren. I have a lot of allergics becuse of that. Everything is dry also in your mouth and troath, stomach and lungs. SO one day I got an allergic to nickel! And it is also in implants . The best thing you can do is to test yourself on allergic materials to ALL the materials they will use to make implants. I am toothless at the moment and implants are forbidden for me. It is very hard but there is nothing for me . My underjaw is shrinked too much. It is awful.! So I have to warn you be careful! But it is not impossible. Titanium is a metal how is filthy naturally. Doctors are not saying that. Please be careful! Let me know something? Greeetings Alma the Netherlands
Posted @ Tuesday, April 09, 2013 10:59 AM by Alma Siereveld
@ Lisa, Have you ever had a tear stain test done at your eye doctors. When I started seeing an RA doctor he sent me for a tear stain test which showed NO tears the stripe was completely dry. It's a very simple test. It could help with your diagnose. Good Luck
Posted @ Tuesday, April 09, 2013 11:25 AM by Cathy
I have all symptoms of Sjogren's with neuopathies and constant pain & oral lichen planus lesions confirmed by biopsy and salivary gland biopsy confirmed atrophy/destruction of the gland but still can't get a diagnosis because I don't have a positive ANA, SSA, or SSB despite many professional journal articles say only 40 or 50% of patients with Sjogren's actually have positive blood tests! Wanted to post new information I found in case it helps someone. I have not been able to find anything to help chronic oral lichen planus and burning mouth syndrome and a treatment...just ran across info online about purslane plant/herb which is kind of a weed actually that grows wild in lots of the U.S...have pull up buckets of it from my yard every spring and had no idea it is edible....it has extremely high omegas, antioxidants etc. and actual studies have been done on the effectiveness of purslane in treating oral lichen planus and burning mouth problems! The plant is supposed to work better than the extract but if you can't find the plant the extract is available online. Now if only we can find effective treatment for the brain fog and fatigue! I have started 500 mg Rhodiola extract daily which does help some with fatigue/physical endurance/weakness but does not seem to do much for brain fog if that makes sense..just seems to make the difference between so exhausted and weak am in bed vs able to function most of the day but still in horrible constant pain 24/7 despite mutliple RX meds including neurontin for the large fiber peripheral neuropathy & small fiber neuropathy. Here are the links for purslane info: 
http://www.drugs.com/npp/purslane.html.... http://askville.amazon.com/purslane-whewre-find/AnswerViewer.do?requestId=5696336
Posted @ Tuesday, April 16, 2013 3:51 PM by Christina
Ronni...I completely sympathize with you for how much pain you experience...for your neuropathy pain have you tried Benfotiamine (Vitamine B1)? It has been studied and found effective in small fiber neuropathy in diabetes and thus I researched it and have been taking it for months for autoimmune small fiber neuropathy from sjogren's. It has helped a lot...my right leg and foot was so painful and numb was on crutches and in constant pain even when sitting...you must take Benfotiamine type not just any Vit. B1 and need too take approx. 100 mg to 500 mg. per day for it to be effective...I take 300 mg in a.m., 150 mg at lunch & 150 mg at bedtime and I had immediate improvement the day after I started only 200 mg per day. Peripheral neuropathy including small fiber neuropathy are pretty common in sjogren's patients with nervous system involvement...google sjogren's neuropathy & sjogren's neurologic complications & you will be amazed!...I think I saved at least 10 articles on this subject yesterday...of course google Benfotiamine too and ask your doctor first but I couldn't find any side effects or drug interactions and I have experienced nothing negative from this supplement only positive! good news for a change! Take care and let me know if it helps you...Christina
Posted @ Tuesday, April 16, 2013 4:04 PM by Christina
Hi Ronni and Cathy. Thanks for commenting on the blog. 
I had my Gastro Dr. do an upper endoscophy, after he saw the "Black Tongue'. He found that I have something called "Berrett's Esophagus. It is a pre - cancer cell, contributing to early stage Esop. CA. 
I was having swallowing problems, and the MD stretched my Esop. 
I still get sores and ulcers in my mouth, and I am scheduled for a mouth biopsy next week. 
My eyes are sooo dry. I too take Evokac ? for dry mouth. I have 12 cavities that need fixing, and a tooth pulled and an implant. 
Thanks for the suggestion of coconut oil. I go to the "Dry Mouth Clinic", Tufts Med. Ct, Boston. They have me on Liquid Vitamin E, to help with the dryness. 
I can't take any pain meds as it pre empts my liver - to elevate my enzymes. 
I have RA and Lupus, and very severe Arthritis. 
Check out a Teaching Hospital for all these Clinics. I use Mass General to help me get a handle all my Memory problems,; getting neuro pys testing and am starting to go to Mass Gen.'s Memory Clinic. 
I lose words, thoughts, ; finding myself day dreaming and very bad at completing projects.  
I was forced into retirement, by losing my job as a social worker, MSW, back in 6/10. I am living only on SSD. 
i do a lot of research every day. Now, especially on this BARRETT's ESOP. I suggest every one check this out, especially if you have mouth problems, Black Tongue, sore throat, inflammation in mouth, chronic Candidas ?sp. 
A Weakened Immune System is causing all the Diseases and Disorders. I am heading toward a New immune system. Stem cell, embryonic cells, or some type of infusions. 
If any one knows a Clinic or Teaching Hospital that is using this approach for Lupus and Sjogren's, please write to me. 
I am subscribed to this blog. 
Thank you, Nancy M
Posted @ Wednesday, April 24, 2013 9:23 PM by nancy m
I experienced a scary episode of brain fog after I was newly diagnosed. I didn't even know what it was at that time. I believe lack of sleep is a factor, along with a few other things. Hope this helps. Three months ago I was sleeping a half hour at a time, getting up and wandering around the house. I was probably averaging two hours of sleep. No one can function this way. My doctor put me on Klonopin, a low dose to get my body used to sleeping again. Yes, it can be addicting, but it was that or lose my mind! I sleep about 6-8 hours now, and feel good. Also, get your vitamin D level checked. I was low, and that cad wreak havoc with your body. I take a powder form, nutra Metrix. You can purchase it online. I have juiced on and off for 20 years. Now it's part of my everyday routine. All greens, kale, spinach, cucumber, half an apple, ginger, Nd half a beet sometimes. I have been told grapefruit is great for memory, I'm going to try that. I started running a cool mist vaporizer in my bedroom. Keeps us hydrated, and the sound is soothing. One more suggestion, I have an app on my phone that allows me to learn different languages. I'm currently learning Italian. They are great memory tests, spelling, pronunciation ,ect. And it's fun! I had some not so great news recently. I have Lupus and Scleradoma in addition to Sjogrens. I will not let this beat me down. I just refuse. I count my blessings everyday. God bless all, and I hope you benefit from my tips. Please share yours too! Sue
Posted @ Sunday, May 05, 2013 6:48 AM by Sue
Hi, forgot, lol, one more tip. I carry a very small tape recorder in my pocket. If it's important I record so I won't forget. Also, I have a large cork board in my kitchen with a calendar that has space for notes. Dry erase so I can reuse. I have had too many embarrassing missed appointments, forgotten phone calls, just forgetting in general. People who don't have this often mistakenly think you are making up excuses. Sue
Posted @ Sunday, May 05, 2013 7:17 AM by Sue
Thanks to all that responded to my post, I really appreciate your feedback!  
@Alma,I read your document and found it to be very interesting! I believe you are right, Immunologists and Rheumatologists do look at it differently. I took your information did some more research on my own and took the information to my next Rheumatology visit. It helps to be informed and to know in advance, at least somewhat, as to what the doctors are talking about. 
@Cathy, I have not had a tear stain test even though I have been seeing an Ophthalmologist regularly for several years due to the dry eyes and use of Plaquenil. My new Rheumatologist was surprised at that, and she recommended that I have it done. I recently woke up in the middle of the night with pain in my left eye. It felt like my eyeball was being peeled off when I tried to open my eyes! I have not had to get up in the night and use eye drops for quite a while! My Rheumatologist also recommended a lip biopsy, which I am scheduled to have next week. 
@Nancy M. I see that John's Hopkins Hospital in Maryland has a Sjogren's Syndrome Center, I don't know if they do what you are looking for but you can call and ask. Also Mayo Clinic in Rochester, MN. I've heard Mayo Clinic is the best at most everything! I went there with my second pleural effusion but my visits were directed mainly at the lungs and heart unfortunately, not rheumatology! May God bless you, Nancy, I read your post and feel bad about complaining! :( 
@ Pat, thank you for listening and the encouragement... it truly helps to correspond with people that can relate!  
And, yes, what doesn't kill us will only make us stronger! :) 
I will keep all of you in my prayers!
Posted @ Tuesday, May 07, 2013 10:55 PM by Lisa
I received an email from a friend insisting that there is a "cure" for all autoimmune disorders.  
Called "Digestacure" and manufactured by a company in Florida, advertised as a 500 mg capsule containing "pure natural concentrated immune modulators." My response was that if this product cured autoimmune illnesses, the whole world would know about it and it sounds like a major scam to me. I am just curious if anyone else has heard of this. I could not find out much information on the internet except one complaint.
Posted @ Wednesday, May 08, 2013 9:11 AM by Joy
Does anyone else seem to experience much more pain at night? I am so baffled by this disease. I can have a decent day, then, the witching hour, usually 1-3am, where I wake in excruciating ankle, knee, and now, wrist pain. I hate to complain, but it feels like torture. Pain meds are last resort. I do take Plaquenil & prednisone, do not want to increase the prednisone. I really want to get more info on the LDN. Anything to get away from the joint pain. I was scheduled for a biopsy of my hands today, my rheumatologist suspects Lupus along with Sjogrens. Wednesday eve I started bleeding post 6 years menopause. So, the transvaginal ultra sound takes priority over any other test right now. This is like a nightmare I can't wake up from! That's another thing. Since diagnosed with Sjogrens, I don't dream anymore. I miss my dreams! It was like going to the movies sometimes! Now, I feel as though I just fall into a stupor of sleep until I am awakened by the band playing on my joints. I am so grateful when I sleep 6 hours pain free. Bengay is my best friend in the wee hours, lol. God bless, Sue
Posted @ Monday, May 20, 2013 1:47 AM by Sue
Yes, Sue, I have more pain at night! I have Osteoarthritis in my neck, hands, and right knee... so far! I feel like I toss and turn most the night due to neck pain! I was on Cymbalta but I was not liking the side affects at all! It made the brain fog and fatigue so much worse! I also had just about every symptom/side affect known to Cymbalta! While on it, I did not wake up at all in the night and had a lot less pain at night as well as during the day, but I would wake up feeling lost almost like I didn't know where I was! Now that I'm off of Cymbalta I'm waking up, or sleeping lightly, again... and yes, between 1 and 3am!!
Posted @ Wednesday, May 22, 2013 10:30 PM by Lisa
I have to say brain fog has hit me big time! It is so frustrating especially when I use to be able to remember everything and multitask with no problem. It is really frustrating when family does not understand and feel that I am faking. I try to keep up my brain by reading, writing, and getting on the computer. I truly understand everyone's pain with brain fog.....I am glad I have the SSF to help deal with my frustrations. Yolanda Martinez, California
Posted @ Wednesday, May 29, 2013 7:13 PM by Yolanda Martinez
I have been recently diagnosed with Sjogren's and they have put me on cellcept and reducing my prednisone slowly. Has anyone else been put on cellcept? and if so how has it been?
Posted @ Thursday, July 11, 2013 5:22 PM by Pam Perkerewicz
Take this product for all above posted problems now! Expensive and worth every cent. 
 
I am just a consumer not a salesman or owner.
Posted @ Sunday, August 11, 2013 3:17 PM by Dan Kreitzer
Teeth’s whitening isn’t the permanent process. That’s why you have to maintain some rules and condition with good medicine to control the whitening condition.
Posted @ Monday, April 21, 2014 7:40 AM by Richter @Teeth Whitening Results
It feels so good that people actually understand what I am going through. Sjogrens can sometimes be a lonely sickness. Fatigue, brain fog, reflux, body pains. Sometimes I simply have to stop whatever I am doing and rest. In the office it helps when I leave the office for five minutes just to clear my head.
Posted @ Monday, May 12, 2014 2:00 PM by Morrisa Singh
Juice Plus Shakes 
 
Really i appreciate the effort you made to share the knowledge.The topic here i found was really effective to the topic which i was researching for a long time. 
 
 
Posted @ Monday, July 07, 2014 1:06 AM by Simpledietnutrition juiceplus
Sou brasileira. Será que receberão esses comentários em inglês ou em português? Gostaria de participar e aprender com vices. Obrigada.
Posted @ Thursday, July 10, 2014 6:37 AM by Marilene Guimarães
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