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

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Sjogren’s, More Than Dry Mouth and Dry Eyes

 

One of the main difficulties with diagnosing Sjögren’s is that symptoms vary from person to person. Often patients will visit their dentist for dry mouth or excessive tooth decay and then their primary physician for joint pain and fatigue. This makes it difficult for both the patient and physician to put the symptoms together.

As we continue on the road of achieving our breakthrough goal of shortening the time to diagnose Sjögren’s by 50% in 5 years, it is important to first identify the main reasons why people go to the doctor and seek a diagnosis.

In a recent survey of over 4,000 Sjögren’s patients, it was discovered that the four main reasons patients sought a diagnosis (in order) were:

  • Dry eyes
  • Dry mouth
  • Fatigue
  • Joint pain

While we know Sjögren’s is much more than just the hallmark symptoms of dry eyes and dry mouth, it is important to note that they are the two top symptoms that caused patients to seek a diagnosis.

What is also important to note is that in the same survey, dry eyes and dry mouth were ranked #1 and #2 for symptoms patients currently still experience after diagnosis:

Common Symptoms Experienced by Patients Post Diagnosis were:

  • 92% Dry eyes
  • 91% Dry mouth
  • 86% Sleep disruption

This is why, it is imperative that we reach out to dentists, dental hygienists, ophthalmogists, optometrists and rheumatologists with information about Sjögren’s and its hallmark symptoms.These are the physicians who are on the front lines and can help speed up a  diagnosis of Sjögren’s.

So remember, the Foundation offers “Dry Eyes,” “Dry Mouth” and “What is Sjögren’s Syndrome?” brochures to all medical offices, free of charge. We hope you will consider taking some of them to your next doctor visit! Sign up to be an Awareness Ambassador or help us spread the word about Sjögren’s by distributing brochures!

Just call our office and request some brochures and we will mail them to you. Or have your doctor’s office contact us or sign-up online for brochures. Visit www.sjogrens.org or call us at 800-475-6473.

Comments

I have sjogrens syndrome. It is really disabling and confining with all orifices symptoms. This bout has been going on for over a month and is exhausting. I am taking the proper meds,going to a rheumatologist but still it hangs on....
Posted @ Monday, April 09, 2012 10:50 AM by Melinda Gwin
I did not find out I had this until six years of random odd issues, losing smell and taste, vocal cord dysfunction, serious dental issue that turned into a cyst that grew into my jawbone and ate 3 holes into my jaw...finally after mentioned these odd things to my kids pediatrian, he said he recommended some autoimmune testing by my PCP. Well guess what? All if it explained with the Sjogrens disorder. I saw so many ENT's, Dentists, Oral Surgeons, my PCP, no one thought to go checking for an autoimmune disorder!
Posted @ Monday, April 09, 2012 10:54 AM by Heather G
I have all symptoms of sjogrens, but cannot get a diagnosis because my bloods are negative, it does not stop me suffering though :(
Posted @ Monday, April 09, 2012 11:01 AM by Gill
I was diagnosed with Sjogren's Syndrome in 2007 and the reason I had gone to the Doctors, even though I had dry eye's & nose for years but never did anything about it. Was because one day the Parotid Glands in my jaw area started to swell up and became so uncomfortable. I was also getting shooting pains through them. I knew I had mumps as a child so figured it probably wasn't that, but It worried me sick, so I went to the Doctors and he referred me to an ENT specialist, who suggested I might have SS and referred me to a Rheumatologist and she did more tests and confirmed I had SS, they also thought I might have MS & was tested for that but it wasn't MS it was the SS. I have never been able to wear contact lenses, because my eyes would get too dry and irritated, plus for years I have been getting a very dry nose to the point it would bleed, and my mouth so dry I had trouble swallowing things without taking a drink with it to moisten it. but non of that had ever been picked up on, It was the swollen glands that triggered investigation..
Posted @ Monday, April 09, 2012 11:07 AM by Joan
I have fought SS for years with dry eyes and mouth and the aches and pains. But the eyes were my big problem. Had plugs put in and used lots of drops. I started having trouble with inflamation of the eyse and fought this for years. After putting pulgs in the upper drains thing sgot worse and I could not use any of the lubercating eye drops becaus of rejection. I have bee using basic salt solution only for several years. At last they removed the pulgs in one eye and cauterized the drainsa and that was the key. after having the other eye done I am now free of inflamation and even have a little moisture in my eyes.
Posted @ Monday, April 09, 2012 11:47 AM by June Johnson
I sound like June. I had the plugs put in after I got worse after cataract surgery. First lower plugs & then upper. My eyes got worse after the upper. They ran & gooped up & still do all the time. I have asked 3 eye drs. to remove & they don't think it is a good idea. It took yrs to diagnose and signs for autoimmune even though I have Hashinmotos. It did not show anything till 3 mos. before diagnosis. My dentist told me about sjogrens & thought thats what he thought it could be. Several yrs. before. I have lived with my eyes hurting, burning & running for 3 yrs now. I have been told it is just the nature of the beast. Wish I could find relief it is hard to go into public as I have to clean out my eyes constantly..
Posted @ Monday, April 09, 2012 12:47 PM by Terry Thompson
I haven't had any plugs at this point. but I am having a lot of eye problems, as well as the dry eye, burning etc. I have Angle Closure Glaucoma, I had laser surgery on both eyes and they are now good and I get a special eye test every yr to make sure the pressure isn't building up again. I also have Cataracts and need them doing soon. Also the Plaquenil I am on for the SS can in rare cases damage your eyes, so I have a regular test for that too. Other than that my eyes are great lol.
Posted @ Monday, April 09, 2012 12:54 PM by Joan
I've have a scratched cornea 7 times in the last 10 years due to dry eyes. I use Refresh ointment every night and that helps a lot. I have dry mouth that causes constant mouth pain. I've been on high dose Salagen and it helps a little. So far nothing helps my overall pain. I would be miserable without Ambien. Even with it, I still have trouble sleeping.
Posted @ Monday, April 09, 2012 4:12 PM by Donna
I was dx with RA and secondary Sjogren's Syndrome in March 2010. My first symptoms were dry mouth and fatigue. Soon after came joint pain. As months passed, the joint pain and fatigue became debilitating. I have good and bad days. Without treatment all my days would be bad , no doubt.
Posted @ Monday, April 09, 2012 6:29 PM by Pat Skidmore
My symptoms appeared suddenly 8 months ago and were severe. Dry eyes, nose, mouth, throat and female areas. Salagen, plaquenil and eye drops were started. The joint pain & fatigue is awful. I've found some help with acupuncture and Chinese supplements. I don't like the constant discomfort.
Posted @ Monday, April 09, 2012 6:48 PM by Diane
Gill 
My blood work is negative also, but was put on plaquenil and got som relief right away, and more relief as eight months or so has gone by. Ask you doc to treat for sero negative sjogrens
Posted @ Monday, April 09, 2012 8:23 PM by Pam
I had joint pain for several years, the gum-line cavities then the dry eyes, etc. My antibody tests are still negative but I finally got my dr. to order a lip biopsy in the late 90's and it was positive for SS. Have the puntal plugs upper and lower, losing teeth all the time due to cavities, am on pain meds but nothing specifically for Sjogren's.
Posted @ Monday, April 09, 2012 10:50 PM by mary
I finally diagnosed myself through research on the net. I was first diagnosed in 2007 with leukemia. Since then many other chronic autoimmune issues that have since developed not even including SS. When I finally was tested for SS (by two different rheumatologists), the tests were positive.  
 
As it turns out, I have primary SS, two of the 3 rheumatologists I saw are convinced I've had it a very long time. As I look back, I remember being so ill as a child with many of the same symptoms. I thought I had outgrown the "asthma" that put me in the hospital many times; I now realize that all through my adult life I've had many symptoms associated with SS.  
 
It's all but impossible even in SoCal to find a decent rheumatologist, why I have no idea, just a strange arm of the medical field according to my best friend who is a nurse.  
 
I’ve gone to the ER 3 times in the last few months. The last time the ER doctor said that my complaints were due to anxiety and insomnia and that I should see a psychiatrist. One nurse didn’t know leukemia was a cancer; forget about anyone knowing about SS. I tried to file complaints with various agencies about the hospital to no avail. It’s like tilting at windmills. 
 
The leukemia has progressed to where I might need treatment, however I’m tired of jaded and/or incompetent doctors, tired of dealing with insurance companies, guess just plain tired of it all.  
 
At this point, my main goal is to get all our financial and personal affairs in order; my beloved husband who tries so hard doesn’t know how to do any of it, too late to teach him now. I guess it’s my fault for always taking care of that end of things. No use looking back, though I sure would like to have something to look forward to. I hope that the US will join the rest of the world in having a single payer health system. Our children and grandchildren deserve no less.  
 
Apologies for the long post. Take care of yourselves as best you can and keep up the good fight! Best to all, Jennifer
Posted @ Tuesday, April 10, 2012 11:51 AM by Jennifer
Note to Terry Thompson who felt the plugs were causing her problems. You can have the plugs removed and have the punctal openings surgically closed. I did this as plugs wouldn't stay in and cauterized openings just opened back up. This was my final solution. You have to find an eye doctor that does this procedure fairly often.
Posted @ Tuesday, April 10, 2012 3:57 PM by Ann Duncan
Wow, I will have to ak my Dr. My eyes got worse after the upper plugs were put in. As I said 3 eye Drs. won't have them removed. I quess I will search around. Thank you.
Posted @ Tuesday, April 10, 2012 4:14 PM by Terry Thompson
This goes out to "Jennifer" who postedon April 10, 2012. 
 
 
 
I have also gone to the ER to be seen several times and have had doctors state to each other as if I am not in the room .. that my symptoms and complaints were due to anxiety, insomnia, OBESITY, and of course depression. I am 5'3" weigh about 170...and I have always had a "Big Bone" frame. Once I had my child, of course my hips spread and I am of Mexican American BLOOD, in essence, most of us, Hispanic Latina women, are not that tall and have beautiful child bearing hips! I was also told by the ER dr that that I should see a psychiatrist. Furthermore, just like you, I also tried to file complaints about this ER treatment but to no avail!  
 
I feel like trapped hamsters running in circles in an enclosed cage and everyone is laughing at me or talking about me instead of helping me get out my cage! 
 
Lets hope and pray this autoimmunie disease becomes more widely known and medical facilities train their employees to be more compassionate with patients! 
 
 
 
Posted @ Friday, April 13, 2012 9:07 AM by dm224
How nice to find a site that talks/realates to what has /does transpire with this disease!  
 
I finally was diagnosed with Sjogens @ the same time CutanousBcell lymphoma was DX. For 3-4 years the lesion grew on my neck...PCP- "chromic inflamation" Dermatologist- kept shrugging his shoulders, referred to another Derm.-he wanted to do lazer for cosmetic appearence!!! Lymph out in neck..."thats what lymphs do",you look good, things change as we age.....try this antidepressent (no), doing PT, TENS, OTC's by the hand full, herbals, heat pads, hot baths/showers, massage etc., etc. over the top, ever increasing pain, sleep issues etc. Had 4 sesions of Rituxan/chemo...what a world of difference!Pain gone (blessing) at first, dry eyes/mouth much better, now months later starting to become an issue again, but tolerable. Pain began to creep back in and so started Alternative treatment (Apitherapy) Bee Venom, it is amazing, keeps the pain at bay and it's affordable. Not on any other drugs with the exception of xanax, take for sleep issues once in awhile, so from time to time I can have 6 straight hours of sleep...what a help that is! Haven't been on any of the standard drugs for Sjogrens because the DX of so much at once warrented the chemo. Diet helps some alo I beleive. Flax oil, expencive but worth the $, Lots of olive oil in diet and fish oil caps. I still have to use drops but haven't had to carry them in my pocket for contiual use. The bolders in your eyes feeling now only happens on rare occ. I worked with an MD years ago and she utilixed the bees for other Rhumy issues, glad to have had the experience. Some MDs and Natropaths can guide the inital treatmens. Educate yourself! Read, read read! I started this back in Sept. of 2011 and so far so good. Still have bouts of fatigue that come and go, usually not as intense as they had been. I do sweat at times but usually tolerable, except when they wake me at night once in a while. Over all quite tolerable, compared to how they had been. Have lost some sence of smell and prior treatment would have problems with numbers, recalling names etc. Any one else experience that? Who knows if this was/is from the Sjogrens. Fatigue/sleep issues/pain etc. all contribute to cognitive issues. That and the sheer fustration dealing with the medical community...funny thing is I was a nurse..so I am all over the medical records....past and present. I strongly advise everyone to obtain your records! Alarming the errors, misquotes, Dx they toss around that forever STICK to you, and are wrong or just an opinion of an ego maniac practicioner. They plagerize off each others notes! so if one of them isn't listening, the next three....get it all wrong too! Heaven help us of electronic MR's goes national. Witt some of the stuff in my chart- like cardiac surgery in my 20's...that never happened, could prove to be fatal in it's own right for the unsuspecting person. GET YOUR MEDICAL RECORDS ON AN ON GOING BASIS. Talking to others that full disclosure by physicians should be mandatory...HOLD THEM ACCOUNTABLE FOR EACH VISIT! we pay dearly for health care in this country and it is shameful at best in soooo many ways. A one payer system would help, not perfect but a lot better that what we have now.
Posted @ Sunday, April 15, 2012 5:30 AM by Pat
I was diagnosed with SS along with Fibromyalgia and Hypothyroidism and Hypercholesterolemia in the 1990's. Lately I have had thickened sinus drainage that is very annoying and fatiguing. My MD  
 
treated me for a subclinical sinus infection, no relief, my rheumatology NP said try Mucinex (didn't help). I do nasal irrigation with a neti pot, use a cold steam vaporizer at night, saline nasal spray & gel, increase fluids, hot & cold packs. The ENT doctor prescribed Evozac which thins my saliva (I get cramps in my parotid gland, have had a stone in the past) but doesn't seem to affect the sinus drainage which is exceptionally thick to the point of gagging to expectorate and manually pull it out of my mouth. I have used Restasis for many years, and had plugs at one point, which fell out. I take Fish Oil caps and use lots of olive oil. I am very frustrated to have to constantly clear my throat. Antihistamines are not the answer (blood test for allergies was negative) and steroid nasal spray just dries you more. Any one out here with a similar problem who has any further suggestions? The ENT doctor suggested a drop of baby shampoo in the neti pot so I'm doing that. Don't know what else to do.....and I am a retired nurse educator.
Posted @ Monday, April 16, 2012 1:02 PM by Connie
I have problems with teeth; eyes sleep fatigue and wonder what canhelp. I anon methotrexate for the inflamination of sjogrens. I would love to hear of other help. I have plugs in eyes. Lost teeth and now the fatigue is bad. Tired of hearing your depressed. How can you help being depressed when I have lost my singing art etc all from tho disease.
Posted @ Wednesday, April 18, 2012 11:39 AM by carole
My SS test was negative but my Dr said He believed I still have SS! because I have all the sympton. I would like to work but I do not feel I can due to fatigue,pain and dryness.I forget the words most of the time.Could you please let me know if you stil are active or not?
Posted @ Friday, April 20, 2012 8:55 AM by zoe
All posts were informative. Thanks
Posted @ Saturday, April 21, 2012 12:27 PM by Sam M.
I was diagnosed at age 50 with SS. The initial blood tests came in positive. Three subsequent blood tests were negative! It drove me crazy wondering whether I had the disease or not. The doctors I saw said I didn't, including a Rheumatoligist! A few years back I saw a new Rheumaloligist. He said that 30 percent of his patients never tested positive, but still had SS.
Posted @ Tuesday, April 24, 2012 8:04 PM by Anne
I was just recently diagnosed with SS, here is what i don't understand,except for my eyes, and mouth i have EXCESS perspiration. i also have reynaulds, neurapathy, swollen stuff and hurting joints, muscle aches and weakness, hair loss, weight loss, huge hormonal changes, abnormal menstral cycle, and yes there is more, all in one month, i feel like there is more then SS, but doctors are of no help, the majority of days i can not feel my hands and feet, and sometimes fall because my knees get weak. anyone have any advice?
Posted @ Monday, April 30, 2012 8:49 PM by Erin Brooke Greeson
iwas diagnosed 5 years ago with Sjogrens. Over the past 5 years I have failed a great amount. 2 years ago suffered nerve damage in my mouth pallete which brings me GREAT pain when it flares up. I have been on pilocarpine, mouth washes , pain meds & now steroids..Nothing helps! This is so debilitating and painful..HELP!
Posted @ Thursday, May 17, 2012 1:09 PM by Marcia Anderson
I was sick for months it started in 2009 with dry eyes then in 2010 with horrible generalized joint and muscle pain and severe dry eyes, abnormal menstrual cycles with extreme back pain, swollen stiff and sore hands, knees, feet, neck, back and excruciating throbbing teeth and jaw pain. I broke out in a rash a year ago in March and that would not go away. My dermatologist thought I had lupus and took a biopsy, that was negative. I then saw a primary dr and was then led to a Rheumy that told me I had fibromyalgia and to go home and change my life. Being a nightshift nurse, that was a tall order. I suffered from extreme flu like fatigue, I thought I had cancer or something, did some more research and asked to be tested for sjogrens. It ended up being positive so I had a name to call my demon. Anyway, I too feel like the rest, outcast, misunderstood and frustrated. I have changed my life but not entirely by choice, I have been on medical leave since Sept, lost my position at work, will not be able to return. I joined a nutrition school to learn about health to help myself since most doctors can't do anything for this. I did a purification cleanse, acupuncture for a little over 3.5 months. Eat all organic, or try to now, use most all chemical free health products and wear no eye make up or if any maybe once every 2 weeks. It irritates my eyes too much. I am on restasis eye drops which help, refused the plaquenil due to side effects from it, but may have to start back on it. I had a uterine ablation due to hemorraging and pain sothat has helped some with no longer bleeding the back pain has improved in my lowerback. I have severe muscle jerking and twitching and was put on gabapentin for nerve pain-that is helping the muscle jerking. I flare up when I try to do much in one day or get too busy or stressed. Normalcy is gone, I never know how my body will feel from one day to the next. I have lost so much strength due to pain. I eat gluten and dairy free which helps alot and seems to have rid me of the flu like fatigue but if I can't sleep at night, everything flares and I am in bed most of the next day. Have good days with my meds and I have bad days. The bad days are more than the good because you can't stop living and I refuse to lay around if I can help it. I try to stay very positive. I have the best family and some wonderful friends but I still feel like the leper on the block. If I had cancer, ( which was ruled out, and tested because of a low WBC count for approx 5 months,) I would be getting get well cards, with sjogrens you just get talked about. I am waiting for a lymes test to come back now because Imy symptoms mimic that of lymes. The odd thing is my eastern medicine tests are getting better. On a zytos scan my biomarkers dropped 34 points in 6 months just by changing my diet and stress levels. I guess overall I am better but I still have the flares every week for a few days and they are completely crippling and I never know when they are gonna hit me. if I rest for a day or two I come back alive but with the unpredictability of that I cannot work a scheduled job. I also cannot work on my pain medicine as a floor nurse. I am trying to increase the awareness for sjogrens and fibromyalgia through friends and on facebook. I have accepted this. I will not stop trying to find ways to get this disease under control or in remission and keep it there. Follow my healthpage karen4urhealth on facebook and if and when I do get these autoimmune diseases under control or CURED as I pray for, I will let everyone know. I will fight these demons until the end! Without your wound, where would your power be? We can still help people! We are still good friends, better friends now because we care more. We value everything more because when you are "feeling like you are going to die" (that is how bad my pain gets) we are so grateful for all we have and don't take anything for granted. I too have lost much sense of taste and hearing is getting worse. I can live with that, what I can't live with is the lack of kowledge people have for these diseases, that is why I am posting a book here so someone else will get diagnosed sooner than the average 5 years! It only took me 1 year and I attribute that to being an anal retentive nurse! God bless you all that suffer with this, may we find a cure or a way to live with less discomfort. I pray His will be done for us all and hopefully it matches ours as I am sure I can speak for most of you....for relief, awareness, understanding, compassion and a cure! Karen4urhealth
Posted @ Thursday, May 17, 2012 3:08 PM by Karen4urhealth
hi im italian,i write from milan,sorry because its difficult to say well what i feel;hope you understand.i lost my son in a car accident i5v years ago,i was divorced already,im 63 now.ten years ago doing blood tests i discovered an RA and ANTI ANA lightly positive,doctors said never mind;few years ago my eyes started to be more dry but with drops its still ok,last week i went to see my rheumatologist as i do every year,nothing new a part some little more dryiness in the mouth;he said never mind,there could be a suspicion of sjiongren but ill not do 20 biopsies to your lips,go on with your drops in the eyes;the day after, started a terrible dryiness in the mouth,like fire and a taste of metal;i said omg,im in sjogren so now i repeted all the blood tests and im trying to go back to the doctor;im not tired, i mean im tired because i cannot sleep because of the mouth,not thet kind of tireness i had with flu;when i have flu, cough or soare throat i never have fever;i do not have pains and i wonder of some of you started like that;how can you sleep with that terrible fire in the mouth?oh,some years ago i started dryiness in the vagina but they said it was menopause;i think,but i would like your impression,that stress and melancholy makes this thing go worse;when im alone,usually most of the time, i feel less water in my mouth;if im with people this is better;its the same for some of you?and when sjogren started were you in a bad moment?thanks all,ciao
Posted @ Wednesday, May 23, 2012 12:54 PM by doris
 
My mouth is so dry and I actually have been to the ER and fight dehydration every hour. I have found a wonder water. Is Zico~~pure coconut water. Not juice or drink but the pure water. Made from water of green coconuts. Very expensive but is like an instant IV to hydrate me. I think it helps my body as a whole. Eyes, tissues etc. besides my mouth and tongue. I can't even think when I am dehydrated and start to pass out.
Posted @ Friday, May 25, 2012 9:48 AM by Ronni
just went back from one of the best rhumatologists we have in italy;my blood tests are the same since twelve years,slightly positive RA and anti ANA,all the others are negative so he said that its not sojngren but that i should take somethig for anxiety thats the reason why i have dry mouth;what can i believe? anyone had the same experience? same blood tests for years and years ,always the same ngative and just two slightly positive,and just dry mouth and dry eyes?
Posted @ Friday, May 25, 2012 11:26 AM by doris
I was diagnosed with Graves disease at age 15. Treated it radioactive iodine. Still required to take synthroid to control my thyroid levels. I am now 32 and my thyroid levels are off again. I started breaking out in a rash nearly everytime I was in the sun, or hot weather, having gastro problems, weakness, extreme fatigue, anxiety and depression, dry eyes, etc. I just thought it was from the thyroid levels being off. My Endocrinologist referred me to a Rhumatologist for consultation. Did bloodwork and diagnosed me within 2 weeks. I tested positive for SSA and SSB antibodies as well as ANA. He put me on Plaquenil 2x a day. I have seen NO improvement in any of my symptoms and I have been on the meds for almost 2 months now. I don't know much about the disease and the Dr. was not very informative at all. Do you guys think I should get a second opinion??
Posted @ Tuesday, May 29, 2012 11:25 AM by Telisha
I am a new SSF member having been diagnosed with primary Sjogren's in August 2010. I have the dry eyes, dry mouth, my voice was always hoarse but my throat didn't hurt! Very strange. The fatigue was so bad I knew I had an undiagnosed, probably fatal, disease. The problem was I felt so bad I really didn't mind the idea of dying, felt I was going to die in my early 60's like my mother, and I didn't have enough energy to search the internet for a diagnosis.  
Of the posts made on this site I've noticed many are made by nurses!! How interesting. Is this a coincidence or are nurses more likely to post hoping to help someone else through the experience? Is there a way to do a head count and see how many of us are nurses? According to research, Sjogrens predominately affects females and nursing is a predominately female profession. But is there more to it than that? I wonder. Does anyone know?
Posted @ Friday, June 08, 2012 2:00 PM by Sharon
Two years ago I was told I had SS. For years, probably six years I had all kinds of symptoms. what I have done has been become my own advocate. I have read everything I can on SS, and fibormyalgia, which I have also. It has been so dibilatating. I have gotten in with a wonderful rheumotologist, and ent, denist, optomologist, lung doctor,dermatologist. The eyes have been the worst, i do serum drops, which is they take my own blood and make my eye drops and that has been a blessing. I still use restastias, but do the serum drops, i am down to every five hours. in the beginning it was every two hours, has been a great help. I also went gluten and sugar free. i do a protein drink every morning with coconut water, fruit and spinach leaves. I am getting my energy back and the fatigue is going away. I am back 80 percent and I am thrilled. I also could not get out of bed and could not function because of pain in joints and just could not function. I started in janurary with the diet, and I take all the oils, flaxseed, fish oil, etc. I also found a supplement for fibromyalgia which is all natural, take three tablets a day and it has really taken away my pain and the fatigue. Lets keep praying that find a cure for SS because it is a very strange animal. It effects everyone so differently.
Posted @ Friday, June 08, 2012 10:55 PM by Kathy Cocain
I am so glad I found this web site . Have all of what everyone is saying. Doctors would always say dry eyes were due to pre- menopausal or as we get older that happens. I have the dry mouth and when I eat have to have a drink because im so dry. Have joint pain and weakness in my hands . problems sleeping. like some of you doctor told me it was from depression. I didnt agree with that and couldnt take the medicines for depression as they didnt agree with me. I'm sensitive to most medications. Thank all of you for sharing . 
 
Posted @ Saturday, June 09, 2012 11:49 AM by Cathy
I have had SS for years; MS as well, eye doc stumbled on Sjogren's when evaluating my optic nerve. It was so severe I had adhesions all over my corneas. Several eye docs, rheumatologists missed it; Just want to tell everyone who tests negative for SS anti-body and your doc says you don't have it due to that, keep looking for doc that knows this- only around 80% will test positive for SS. I Have sero-negative SS. Cluet to this, I believe is being HLA Positive, gene responsibility for other rheumatic disease. Hope this can help someone from going through the mess of docs who don't know, suffering and being wrongly diagnosis, put down, etc.
Posted @ Sunday, June 10, 2012 1:08 AM by Beanie
I had done more reading on this . Wanted to ask if anyone else has been told they have dry ears.About three years ago I went to see a ENT and was told I had tmj but at the time when he examine me . I remember him telling me my ears were very dry. Never thought anything about it until now. All of what everyone else is saying fits. It was at that same time when I begun to have many problems with my teeth. and like someone else had said the cavities are always near the gum line. My dentist made me a mouth guard to wear at night for the tmj. But as far as the dry mouth I was told it was due to premenopausal.
Posted @ Sunday, June 10, 2012 11:03 AM by Cathy
I would like to comment on Cathy's post. I also have been told I have tmj, and have the mouth guard. I have lost 75 percent of my hearing, and have two new hearing aides. But my ent told me my ears were dry and they get really itchy. I guess it is part of the SS. I also have a lung doctor because of a dry cough, it is under control but due to the ss, i have a dermatologist for the dry skin, denist, eye doctors. It gets very frustrating, but you just have to keep pushing thru it. They call them flare ups and when you get them, just listen to your body, I have found for me that has been a great help.
Posted @ Sunday, June 10, 2012 3:36 PM by kathy cocain
I had been sick for over three months and was being treated for allergies & sinus.My headaches were unbelievable and was in pain 24/7  
 
My doctor said he wanted me to see a ent as he didn't know what else to do for me. A sinus & Brain scan was done at the time. Those came back normal. 
 
The ent was the one who told me tmj and sent me to a specialist for that. During all of this I also was sent to have allergy test done. was told I had chronic sinus..But reading all of everyone's post I am wondering if all is related to ss.. When you have flare ups. Does the muscle pain and joint pain become worse. and does stress bring on the flare ups.. I ask because my muscle pain has been worse then usual also have been under more stress the last few months due to a loss..
Posted @ Sunday, June 10, 2012 5:36 PM by Cathy
Did anybody also suffer from acid reflux and heartburn besides dry mouth and dry eyes?
Posted @ Tuesday, June 26, 2012 8:49 PM by Avis Stein
This is for Diane who posted on April 9th. I would like to know what kind of chinese supplements you are taking. Is is a some kind of herbs?
Posted @ Tuesday, June 26, 2012 8:51 PM by Avis Stein
@ Avis I too have severe acid reflux and heartburn in addition to dry mouth and dry eyes, and all the other mess that comes with having SS. RX Protonix each morning and zantac 150 otc helps me out.
Posted @ Wednesday, July 18, 2012 4:33 PM by Telisha
@ Telisha I take Nexium and I also have bloating. Do all the medications that you take has any side effects?
Posted @ Wednesday, July 18, 2012 6:48 PM by Avis Stein
SS Patient since 2004. Would like to receive this blog by email. Thank you.
Posted @ Wednesday, July 18, 2012 11:03 PM by Gloria Perez
Hello all, I am really struggling at the moment with painful symptoms and am getting absolutely nowhere with my GP. I suspect Sjogrens. For me, it started three years ago with terribly dry nose - the insides of both nostrils was so dry and sore but I thought it was an allergy to something. Then my eyes - when I open my eyes in the morning the lids are stuck and they rip open. Not too bad during the day. I am managing with Visco tears and oily gels. Then I had a strange 'taste' in my mouth all the time, and tingling/burning inside lips and the skin of my face feels tingly and sore. But the worst is the terrible severe joint pain.  
About a month ago, completely out of the blue I woke up with incredibly painful and stiff joints. The pain just came out of nowhere. I felt like I had been hit by a lorry. I have woken with this pain every day since for a month. It seems to be getting worse, spreading into all the muscles of my upper back, shoulders and arms, but I feel it mostly in my biceps and deltoids. The other day I leaned back from the passenger seat in the car to reach something on the back seat - and the pain was enough to stop my breath for a moment - a terrible pain that shot through my upper shoulder. I am aware of extreme pain with most arm movements such as wrapping a towel round me, putting on and taking off anything with sleeves...driving (turning the wheel) carrying shoppping bags, holding the dog lead at arms length. I just cannot do the simplest things without feeling pain. Some days are more painful than others and although I am not in constant pain, I have found certain movements will cause me to experience sudden pain which is really excruciating. I have never felt pain like it before, it is unlike any strain, or exercise induced pain I have ever felt. 
 
I went to my GP two weeks ago, who told me I am 'anxious', and that aches and pains are probably perimenopausal in origin (I am 50) he really does not seem to understand just how painful this is. I am not one to argue with the doctor (yet!) so I just took his advice about 'massage' and 'relaxation' and left. I just don't feel they are taking me seriously and I don't know what to ask them to do next. I am going to go private and see a rheumatologist.  
 
Thanks for reading.
Posted @ Thursday, July 19, 2012 2:32 PM by Lesley
@ Lesley. Due to my very dry eyes and mouth, I told a nurse practitioner that I might have Sjogrens. Her reply was "What is that?" Guess what! I stopped seeing her. 
 
I went to another doctor and he ordered a series of blood tests.  
 
Well, the results came out positive for RA and Sjogrens. He referred me to a Rheumatologist. I am seeing him next week. 
 
Posted @ Thursday, July 19, 2012 7:27 PM by Avis Stein
I have yet to talk to anyone who has ever heard of Sjogren's. Even docs who supposedly treat it (rheumatologists) know very little. It is a very debilitating illness.
Posted @ Tuesday, August 07, 2012 10:14 AM by Joy Degraffenried
Did anyone have a colonoscopy done without any incident
Posted @ Tuesday, August 07, 2012 1:29 PM by Avis Stein
@Avis-Having alot of your same symptoms. Go to Rheumatologist Thurs. Was wondering how your appt with Rheumatologist went and if you started treatment.
Posted @ Tuesday, August 07, 2012 6:42 PM by Christy
@ Christy -The Rheumatogist said I have primary SS. Although my RA was positive, he said I do not have Rheumatoid A. He did not prescribed any medications saying I'm just fine right now. But he did ordered a series of blood tests to ensure that my other organs are OK. My Rheumatogist said medications have side effects. 
 
See the primary physician for a follow-up. He wanted me to have a colonoscopy because of the acid reflux. 
 
My main problems are dry mouth, dry eyes, acid reflux and sometimes pain at the hip
Posted @ Tuesday, August 07, 2012 7:29 PM by Avis
@Avis- Glad you do not have RA. What blood work did he do? Did you have a CCP done?? My RA was positive and CCP was high but really don't have RA symptoms. Just have the dry, yucky eyes and extreme dry mouth. Just a little joint pain in one foot. Was just wondering about the CCP test?? Thanks>
Posted @ Tuesday, August 07, 2012 7:47 PM by Christy
@Christy- It is a long list of tests. They are: 
 
aldolase 729.1 
 
angiotensin converting enzyme level 
 
anti - CCP antibody 
 
CPK 
 
C-reactuve protein -inflammatory 
 
and many more. 
 
I don't understand some of the tests. I went to this websitewww.labtestsonline.org. They tell you everything about the tests. 
 
The joint at my thumb hurts but he said that is osteoarthritis. You might have that. 
 
Another doc told me that as long as the ESR is normal, you don't have RA. 
 
By the way, I still did not go for the above bloodwork yet. 
 
To tell you the truth, I'm tired of all these tests. 
 
Well, I'm thinking of going next week. Will keep you informed when my results are out. 
 
Did you go to the SS facebook ? 
 
Posted @ Tuesday, August 07, 2012 8:20 PM by Avis
I was diagnosed with primary Sjogrens in Nov. 1996. It took me 8 years to get the correct diagnosis. I went to doctor after doctor and was tested for everything under the sun except Sjogrens. I would go weeks at a time not being able to get out of bed, much less work. Joint pain, extreme fatigue, felt like I had the flu, brain fog, dry mouth and eyes, couldn't sleep, swollen, aching glands, I had trouble swallowing. I finally called a local physicians referral service and talked to the nurse that answered and she suggested seeing a rheumatologist. That was the best thing I ever did. We did a biopsy on my parotid gland that confirmed the Sjogrens. I take Plaquenil and prednisone along with Evoxac (that stimulates the parotid glands). These meds allow me to function. I take other meds for the other problems that accompany Sjogrens. I hurt everyday. I fight dryness everyday. Biotene dry mouth rinse will help some. But at least I can get up out of bed every morning. Some mornings that takes longer than others. I just don't ever give up.
Posted @ Wednesday, August 08, 2012 9:27 PM by Billy
dignoised last year w/SS. I have degenerative joint disease. 10 back surgeries 5 cervical 5 lumbar. Both rotator cufs & in Feb total left shoulder replacement w/rod into arm. Had both knees replaaced at same time. Have osteoarthritis. Now SS. Joint pain at times only allows me minimal movement in the day. Never know when it will hit. Of course causes depression. Eyes not a bother yet. Thought dry mouth was because of dentures. Now have neuropathy (self diagnoised) My HMO Doc, specialised in Rheumatology. That,s why I picked her. Has no medications for me to take other than pain pills. Also have reflux problems. Feel fortunat, no heart, blood pressure or chloesterol problems. Mornings "I hurt like hell" take pain pills, wait 20 min n with gettin on. I am so interested with trying new things to help. I have tried vitamins, exercise, rest, etc. The days with joint pain is the worst. Thought it was only arthritis, guess not. So happy to know I am not "alone" beginning to think I'm just trying to find something wrong. I know it is real. I am learning to go with the flow. Thanks for this sit
Posted @ Thursday, August 09, 2012 7:46 PM by Charlene Krown
I was just diagnosed with Sjogren's a couple weeks ago. I was having all these problems but since i have hypothyroidism and have had half of thyroid removed due to nodule I thought my thyroid levels were off. I have the best doctor because he got me lupus tests which led to the sjogren's. I am learning a lot and really appreciate the information here from everybody.
Posted @ Wednesday, August 22, 2012 11:14 PM by jo allebach
After being diagnosed with rheumatoid for 20 years and being on many medications, my primary has been changed to sjogrens. I had been diagnosed with sjogrens earlier but not as the primary (dry eyes, mouth) 
 
 
 
When breathing problems developed, they did all kinds of tests saying that the conditions were symptomatic for those cause by sjogrens. Now I am on oxygen 24/7. 
 
(Mayo Clinic read the tests.) Today I am going on a high dose of prednosone and a lower dose of sulfur. 
 
 
 
My doctor wants me to see a specialist at Duke and I may get on his list. 
 
 
 
Has anyone else experience the lung/breathing problems? What were you able to do? 
 
 
 
Apologize for the length. Breathing problems are so new to me.  
 
The weight of the oxygen tank is really getting me down. I hope to go to a lighter tank in about two weeks. 
 
 
 
Thanks for any suggestions. 
 
 
 
Kathy Johnson 
 
North Carolina
Posted @ Friday, August 24, 2012 7:07 AM by Kathy Johnson
I was diagnosed with SS last month. I also have fibrmyalgia and heart problems along with many other medical problems. My syptoms or everything everybody has been talking about except lung problems.I can't hardly do anything anymore due to my body just want let me I literally hurt and feel so bad all the time.I can't seem to feel better no matter what I do.It's very hard to get any support like people say they just say well you look fine.So it's very hard to try to explain that I'm not okay at all I do feel like I'm dying.I just want to have energy to spend time with my grandchildren and have a little bit of happiness in my life. But it seems that it's never going to happen.I feel so isolated from the world anymore and feel I have no way out. I'm thinking about trying to get on a tv show like the Doctors or Doctor Oz show just to try to get people to realize the horrible disease that so many people leave with but just have no idea what we go through on a daily basis. I'm so very tired and have so much brain fog I just sit in the bed most days not being able to move. I'm by myself most days it's so very hard to deal with. Having no support system is horrible you feel like you are just wasting away and no one cares. I got on this site to read peoples comments and though I'm glad to know there are so many like me it also saddens me at the same time. I pray that we all can get the help and support we all need to fight such a horrible scary disease. Thanks to all and God Bless. If anyone has any help to give me I sure would appreciate it. I just can't seem to get rid of pain and get my self going I'm at a stand still.
Posted @ Thursday, August 30, 2012 11:56 AM by Debbie
I found a new gum that really helps dry mouth (better than Biotene gum). 
It is called "Quench". The label says "infused with cavity fighting Xylitol". Of course nothing lasts for very long but I am very pleased with this gum.
Posted @ Saturday, September 15, 2012 10:08 AM by cynthia Schwarz
Gil, I also have Sjogrens and it did not show up on a blood test. I had a biopsy of my salivary glands and it was confirmed that it is Sjogrens. Don't give up...have a biopsy done.
Posted @ Saturday, September 15, 2012 10:12 AM by cynthia Schwarz
I was diagnosed with Sicca Syndrome about two years ago. I was diagnosed with Fibromyalgia and a hypermobility/connective tissue disorder too. I have chronic joint pain, chronic bursitis and tendonitis, lax joints that are "double-jointed" (scored a 7 out of 9 on the Beighton Scale), digestive troubles (IBS mostly), an electrical issue in the heart, chronic fatigue, sleep problems, and a slew of other problems.  
 
It used to be that I had occasional dry eyes but now my eyes are perpetually dry. I've tried Restasis but I hate it. In the two years since diagnosis it's gotten a lot worse. Now I'm having episodes where my field of vision is jumpy or bouncy (think of your eyes as being a car without shock absorbers). When I'm driving it's as if I'm watching things from a camera that won't stay still. I believe this is called Oscillopsia, although I haven't seen a doctor yet. My vision gets very blurry now, even with my glasses on, and my eyelids twitch constantly. In June 2011 my Schirmer test was ZERO. No tear production but I do make reactionary tears, however, when I do, I'm sorry I did. Crying makes my vision blurry for a long time afterward. 
 
My mouth is as dry as can be and it feels raw inside now. My lips do too. The roof of my mouth is always sore and my saliva feels thin and scant. My salivary glands swell, but only mildly. They hurt when I push on them. I get recurring open sores along my gums. A lip biopsy was inconclusive--probably done incorrectly because they couldn't find any salivary tissue and I will never repeat it. 
 
My nose. That might be the worst of the dryness. I can't breathe out of my nose well and my sinuses have collapsed. I get infections often. I have had a squamous cell papilloma removed from the cartilage just inside my nostril. I get sores in my nose often. I make very little mucous and if I get a cold, I can plan on a sinus infection. I get those even without a cold. Sometimes, if my nose runs, what comes out smells bad--like infection. 
 
I don't make ear wax either and I have such horrible tinnitus. My ears itch really bad deep inside. I also have balance trouble.  
 
I'm basically dry everywhere. Even my skin and my hair and nails. But because I am seronegative, I'm told it is NOT Sjogren's. Does this sound right? I don't think so. Two rheumatologists told me that I couldn't have Sjogren's because my blood work is negative. They told me I didn't have to go back. Another doctor told me that it's a "mixed connective tissue disorder." Another doctor told me I might have Lupus because a skin biopsy was positive for it, but a subsequent test was negative so I don't have it. Another doctor wanted me on anti-depressants right away because he said it had to be anxiety. I feel like I need help but I don't know who to go to anymore. Isn't there a test that looks at the quality of saliva and tears?  
Posted @ Wednesday, November 14, 2012 10:16 PM by Shawn Marie Hardy
I was diagnosed with SS 6 months ago. Being diagnosed is my reason for the fatigue, brain fog, muscle and joint pain. The dry mouth and eyes and nose at night keep me from a restful sleep. Anybody recommend a cool air humidifier that is quiet, mid price range and doesn't spew out lots of water and white stuff? Please let me know. Thanks
Posted @ Friday, December 07, 2012 2:20 PM by Ginger
Ginger I know how you feel. I have trouble with my eyes and my nose as well as many other problems. I was diagnosed on August of this year and it has really turned my life upside down. I also have fybromyalgia as well as heart problems. So I have a hard time everyday.I have grandchildren that I adore, but it's very hard for me to make it through each day. I'm scared alot because I have lost so much muscle mass and strength along with skin problems as well. I will pray for you and all that deal with such a horrible disease that not to many doctors or anyone that knows much about it. I haven't used a humidifier of any kind so I don't know if it would help. I have heard they are good to use though.I'm like you if anyone has any information on sjogrens doctors that know anything about it in Tennessee or any info period on this disease it would be so appreciated. Good Luck and God Bless to everyone... Hope everyone has a Very Merry Christmas...
Posted @ Tuesday, December 11, 2012 4:50 PM by Debbie
I was researching some last night, didn't read beyond the abstract but the title was something like "Sjogren's: The Orphan Rheumatic Disease" I had to laugh...we're orphans that is for sure! Am so sad, angry, you name it...at doctors. I was sick for 5 years with Chronic Fatigue Syndrome, then told I had RA then NOT, had sinus surgeries, gall bladder, on and on....oh my God. Does anyone in the medical community GET IT? I was elated to get a positive ANA and SS-b blood test. Then the worst of all happens when I get an idiot for a rheumatologist. Yes, I'm really sarcastic today, writing this, but am about to stop working full time because I cannot manage/function anymore. And I live alone, so it will be an adventure into poverty but at this point, it is either my LIFE or the JOB.
Posted @ Tuesday, January 08, 2013 7:13 PM by Mary B
Ginger: I constantly have sores inside my nose and wake up many times at night and can't swallow. I did not want to get a humidified because I have had them in the past and had lots of problems (ruined table tops and lamps, white dust on TV, etc.) Also they require a lot of maintenance. Then I remember that I had what is called an Evaporative humidifier that I have had for at least 25 years sitting in the basement. It just evaporates the water into the air. It does not require a lot of maintenance (just change the filter every few months)and fresh water each night; the filters are cheap ($9)and available through Amazon. It is a Duracraft model. You may find it online. I've only been using it the last week, but I think it is helping.
Posted @ Thursday, January 17, 2013 5:21 PM by Joy
Shawn Marie, 
 
There is a nuclear medicine test for parotids. Checks production and stimulation of saliva produced by the parotid. Also there is a lip biopsy. Don't give up and keep searching for a doctor that knows Sjogren's. Best of a Wet New year.
Posted @ Friday, January 18, 2013 3:15 PM by Ginger
I've been reading all the emails over and over again. I'm at the point now where I just want to give up. I can't seem to find any help from any doctors. I live in Tennessee and I've been wating for over a year now for some kind of help.The only thing I'm on is plaquinil 200mg. a day and that's it. I sure could use any help or information I could get from anyone. I have two wonderful grandchildren and I can't even enjoy them because I'm so miseable everyday.All of my days or spent mostly in the bed because it's gotten to the point where I don't even have the energy and I'm in so much pain I just can't function any longer. I getting more and more symptoms and don't know what to do.I just want to know if this is how it is going to be for the rest of my life. I try so hard to make things better and force myself to get up and going but everything I do just puts me right down agian. Please again if anyone has any information for me I would greatly appreciate it.. God Bless everyone that has to go through these horrible diseases..
Posted @ Saturday, January 19, 2013 4:43 PM by Debbie
Does anyone also have crohns diease aswell as sjogrens 
Posted @ Saturday, February 16, 2013 12:43 PM by susan
I was wondering if anyone sleep cycle is different from most others. 
I feel better when I sleep later and stay up till midnight or 1am. My family keeps on telling me if I continually get up early I'd get used to it; my friend also has SS, and like me she said she'd revert right back to a similar sleep habit that seems more natural for us. When we force ourselves to get up we feel foggy, irritable, and a bunch of other unpleasant symptoms. Please let me know if you've experienced something similar.
Posted @ Sunday, March 17, 2013 1:47 PM by holly
Having dental issues. Are there any dentists in the NJ Phila area who are familiar with Sjogrens ?
Posted @ Saturday, March 23, 2013 9:15 AM by Gloria
My Dry Mouth Disease, has led to "Hairy Black Tongue". 
Upon further investigation, I sought out my Gastrointerologist. 
He did an upper endoscopy, and took biopsy of the Esop. lining and found "BARRETT'S ESOPHAGUS. 
Now I am really taking notice of all the problems associated with Sjogren's and Lupus. 
Barrett';sis very serious and there is no cure for it. 
It is a silent killer. Those Barrett's cells can change shape and become like a scamous cell , moving into the glands, into the blood stream, and metastas every where in the body. 
Everyone with mouth ulcers, or candida on the back of the throat, needs this checked out. 
Don't let this Barrett's get to even stage 1 !! 
Nancy M
Posted @ Wednesday, April 24, 2013 9:39 PM by nancy meehan
@Nancy. Thank you for sharing.
Posted @ Thursday, April 25, 2013 8:26 AM by Avis Stein
Very informative posts.
Posted @ Saturday, May 11, 2013 7:35 PM by Ajaya
About two and a half months ago, I was misdiagnosed with thrush. Of course, it didn't respond, because what I actually had was lichen planus, as later determined by a biopsy, some 5 doctors later. I had been given 10 doses of diflucan. About a month ago, I developed extremely dry eyes and dry mouth and now don't feel as though I'm sweating. i wonder if this is all caused by an autoimmune disease or if it's possible all the diflucan kicked off something terrible. I had blood work whcih showed a positive rheumatoid factor (73) and a borderline ANA. Tuesday, i will see a second Rheumatoid doctor, one who came highly recommended, and I am hopeful he will have answers for me. I have been taking a medication to stimulate saliva production, for a bout a week, and that is making it possible to barely get by. I sleep with a humidifier and chewing gum. I drink so much. I'm also reading a book about healing your immune system by what you eat. I also have an appointment with an integrative doctor wednesday. My hope is that the Rheumatoid doctor can give me a diagnosis and western meds and then the integrative doctor can help me heal my body so that maybe one day I wouldn't need the western meds. Does anyone else with dry mouth/eyes also feel as though they are not sweating properly? Yesterday, i walked down the street for lunch; granted, it was quite a hot day. But I just felt like I couldn't take the heat, and I felt quite sick for several hours after. Although several doctors have suggested Sjogrens, I'm scared it could also be lupus.
Posted @ Saturday, June 22, 2013 9:23 PM by Nicole St.John
to Debbie from Tennessee. 
 
I too found it frustrating trying to get diagnosed. Unfortunately, many local drs. are not that familiar with autoimmune. Ended up researching specialists at Shands Hospital at the University of Fl in Gainesville. Very happy with the level of care from the specialists there. I drive 2 hours to get there but it's worth it. Do you have a teaching hospital connected with a university close to you. It is so worth it to search out specialists in the autoimmune world. I also found that teaching hospitals like Shands, Cleveland clinic, etc., have up to date radiology tests/equipment that for profit centers do not always have.  
 
Hope this has been of some help. 
 
Does anyone know of any help in the Mayo Clinics?
Posted @ Thursday, July 11, 2013 4:09 PM by Reta
Thanks Reta for the information. Yes I do have a teaching hospital in Tennessee. I have an appointment with them this month. Hopefully I will get some better news and some help. Been having it very hard here lately. I just can't seem to get myself together the fatigue and pain is just taking me down. And yes I have already been to the Cleveland clinic in Weston florida in September of last year and they are the ones that diagnosed me with the sjogrens and when I got back they just told me to deal with someone here. Spent all of our savings, it was worth it to found out something but at same time I really could have found out here if I would have had the proper information then. Then on returning kept getting worse and then found out in april of this year that I also had lupus and I have had fibromyalgia for over 12 years and heart condition. So it's a very hard fight everyday. I sure thought this would be the time in my life I should be enjoying. But that's ok all we can do is keep hoping for the best and pray. God can work everything out. God Bless you all and Thanks Again...
Posted @ Saturday, July 13, 2013 2:37 PM by Debbie
How about some good news? I was diagnosed with SS within 1 year of showing symptoms. After I read the average, I feel truly blessed. The chronic fatigue made my first year of teaching a disaster. The job I had dreamed of loving the rest of my life turned out to be a nightmare! 
 
After being treated with hydrochloriquine, my fatigue has mostly depleted. The only time I have chronic fatigue is when the weather gets extremely hot and humid - today 90 degrees, 85% humidity. I have pains in my finger and left knee joints. 
 
Most importantly, teaching is the job I always dreamed it was! I can love it again! It's amazing how fatigued I was and didn't even know it! The symptoms that remain include brain fog, and mostly dry mouth. This can make teaching difficult, but it's best to set up plans and find strategies to help accomplish my daily needs as an educator!  
 
What's New: 
 
I am working towards a healthier way of eating. More foods that are alkaline based instead of acid based. This seems to help with digestion, limit the gurgling in my stomach, and over all makes me feels better. Also, through the grapevine I heard a woman once diagnosed with lupus was undiagnosed 5 years after switching to this healthier life style. (Hmmm.... to not have SS anymore, it's worth a try!)
Posted @ Thursday, July 18, 2013 6:43 PM by Hedy Burke
I have been following the various postings on SS and have gain additional knowledge on it, as I was diagnosed about 4 years ago. I was constantly going to my E N T, because I was loosing my voice on a regular basis, it happened at Choir practice, during performances and when speaking, I would just suddenly loose my voice, on one of these visits to the E N T, after checking, he showed me on the screen that my voice box was normal looking and he will not mess with the chemicals of my body any further, instead he wanted me to do a number of Blood test to find out the cause. When he received the results he called me and asked if I've ever heard about SS commonly called Dry Mouth, I responded in the negative, and he said it a Auto Immune Disorder, and he referred me to a Rheumatologist. A definite diagnose has been made. I get severe pains in my hands and fingers, also other knee and joint pains in addition to the dry mouth, ears and eyes. I also have a rash at the back of my neck that seem not to go away, not matter what cream or ointment is prescribed. Here on the Island where I live they are only about 6 documented case of SS. 
I will appreciate any relevant info 
on SS. Thanks to all of you,
Posted @ Sunday, July 21, 2013 3:05 PM by Eureta Lavine
I was just diagnosed with Sjogren's after trying to get a doctor to believe that I am sick since 2005. I tested positive for both the ANA and anti SSB blood tests. I also had to have a spinal tap to check for MS; which I really do not think I have. I think I may also have Lupus. At any rate....do not think its in your mind!!! I had started to think that!!! Deep down....I knew I had an autoimmune disease. I guess sometimes it really has to progress before it can be diagnosed. I feel constantly like my entire body is under attack. I have dry eyes, mouth, throat, skin. Pain all over my body. Muscle spasms and weakness. Pins and needles in legs, feet, arms and hands. Now started having some congnitive issues with memory and thinking. Very, very tired all of the time. I go to bed at night at 7:00. I know one day I am probably going to be disabled from the disease. I have already lost some sensation in my legs and my balance. I feel horrible most of the time. But....I guess things could also be alot worse!!! Thank god they are not....at least right now they are not.
Posted @ Thursday, August 22, 2013 2:40 PM by Deborah Myers
Hey Rebecca glad you came to this site. It really helps me. Hey Deborah and Debbie. Just wanted to say to Rebecca I do have hair problems which is it's falling out due to the disease and also have skin issues and yes my eyes do hurt and stay dry. And I will have some problems with taking a deep breath and catching a breath sometimes, don't know if it is due to the disease or if it's just my heart I also have coronary artery disease left side of heart is in bad shape. I sure wished you could find a good doctor there are some of us that have trouble with that. It's very hard like you will see to get a doctor to even belief we go through what we all do on a daily basis. Yea Debbie I know your so right I do need to except I'm not like I used to be and probably never will be. I do need to just do a little bit at a time, but yes I'm like you sometimes I over do it and boy do I pay for it. Hey Deborah my SSB and twice my ANA were positive.. So two doctors say I have both and one says I don't have lupus now. It's so frustrating I just don't know what to think. You know they say sometimes your ANA can be positive and you could or could not have lupus I think it's done more by the symptoms. I also I'm so tired I can hardly make it through each day and yes feeling horrible twenty four seven that's me. I'm really not doing very well here lately. If I could only think of a way to make myself feel better in some kind of way. My muscles are totally gone, my skin has no elasticity at all this all happened within eight months. It's so hard to except. My abdomen has really been acting up to here lately. Went to see a gastro. and he said I was a mystery. Well that really helped me out so much. What is wrong with these doctors. So I haven't been back. I just wake up each morning hoping this day will be better. And pray every night that God will heal and help us all that go through these horrible diseases. I truly thank you all for your support and talking with me and everyone of us who go through these things that we're not sure why or what is going on with our bodies. I wish you well Rebecca hang in there and keep in touch with us all, so we will know how your doing. Talk to you Deborah and Debbie again. We all need to take one day at a time and keep praying.. God Bless You All...
Posted @ Thursday, August 29, 2013 7:52 PM by Debbie
My SS bloodwork for antibodies came back as 3/100 and 5/100. My doc said I don't have SS. BUT doesn't it seem that I have the start of it? I had to call and ASK what my numbers were to find out this info. I have dry eyes, mouth, and of course, being a female of 62, the vagina. But that could just be my age. I've had trouble swallowing lately, and just this week have a rash along my spine. I'm fairly neurotic concerning my health, as is most people in my blood family! ha 
Just checking in...more later. I'm seeing a GP for the rash and to get another bottle of Xanax for a long plane trip soon. 
Posted @ Saturday, September 07, 2013 2:30 PM by Connie
I think that I am at the begginging of Sjogrens, just in the last weeks I have a very dry mouth especially night time ,just a little of nose drip, and stangely enough one day my knoee gave out on me as I was walking. Does anyone know if alcohol as anything to do with this
Posted @ Friday, November 01, 2013 9:35 AM by Philomena
I am so depressed and discouraged tonight. I have specialist at Tufts University Dental clinic who did initial assessment for sjorgems,salva flow,lip biopsy...all indicating sjorgrems. Finaly some help I thought. Then the eye staining came out as suggestive of it as well. Blood tests negative,however and all the drs...mpstly p.a's in a small country town just mock Boston drs diagnosis and refuse to even send me to a rheumy. The reumy they talked to said it isnt sjorgrens...that it wouldbe unlikely because I had a negative blood test despite the other tests by specialist saying I probably did. I can't keep traveling so far away to Boston and with no health insurance and a large family it is hard to do anyway. My first time seeing a new health clinic in maine after ditching the last for mocking me and this one practioner a p.a snapped at me and said OH,let me just get this straight,are you here for disability or to get relief of symptoms? I was so shocked and hurt.I can't finish college because of the eye symptoms etc. She did not have time to discuss neurophty atg 4.45 in the afternoon she also snapped. Then she callsme at 8.10 late in the evening to mock more and says that a rheumatologist wont see me because negative blood tests means the spe cialist in Boston are wrong period..I pointed out the rheumy who my last p.a referred me to was only sent the negative blood test and they witheld the specialist lipbiopsy as well as eye test.It doesn'tmatter this new girl said and said she refuses to do more. Pretty self esteem ruining stuff and I still have to find specialist for all the other symtoms. I am on salagen which helps tremendously given tome by Tufts in Boston but they are not specialist for all the other symptoms. Any advise?
Posted @ Wednesday, November 06, 2013 8:39 PM by Morgen Silver
Morgan: I am so sorry you have had such a negative experience with the medical staff you have seen. I, unfortunately, have had similar experiences. It is a disgrace that the medical community is so lacking in education about this extremely disabling illness that causes so much suffering. It is inexcusable; we are not talking about a recently discovered illness! The behavior of the various medical staff you describe is equally inexcusable. I wish I had an answer for you. Perhaps looking on the internet for autoimmune doctors in your general area? Or a support group who might have members that can help? Good luck and don't give up!!
Posted @ Thursday, November 07, 2013 3:49 PM by Joy
I was diagnosed with Sjogren's as an incidental finding from blood work in 2010. When mu doctor told me i tested positive for the antibodies for Sjogren's, i had no idea what that was. she had to write the name on a piece of paper. Three years later and I have to write the name on a piece of paper for friends, colleagues, family members, and many in the medical community.  
 
I am a 49 year old female who was diagnosed with Sjogren's in 2010. I believe my symptoms started in 2009 when I first noticed that my lips were unusually dry. I then started getting tingly sensations and feeling of numbness on the right side of my face, which I learned are called paresthesias. I was diagnosed with trigeminal neuropathy which is presenting as sensory instead of motor involvement.  
 
I saw a Neurologist who ran a batch of neurological tests and MRA, MRIs of the brain. All the tests were ok. I have been seen and treated by two neurologists , three rheumatologists, an Integrative Medicine doctor, and a pain management doctor. Alhough I do not have trigeminal neuralgia, the nerves on the right side, and now the left, are constantly burning and tingling. I have the feeling of loss of sensation around my mouth, lips and tongue. I have been on numerous medication including Neurontin, Tegetrol, Lyrica, Cymbalta, Nortriptyline to control the symptoms, but nothing works. I have taken Plaquenil, Low Dose Naltrexone, Pea Pure, Chinese Herbs, but nothing works.  
 
I have an appointment at the Sjogren's Center at John Hopkins in a few months. In the meantime, I struggle with this invisible condition and often wonder if it is in my mind. I know it's not when I read theses blogs. I would love to hear from anyone struggling with his illness, especially someone with trigeminal nerve involvement as a result of Sjogren's. Keep moving forward and never give up.
Posted @ Friday, November 08, 2013 6:32 AM by Lee
Hi all, I haven't posted for over a year. I didn't know that sleep problems were related ... I haven't slept well since I was a baby! I have all the drynesses, muscle atrophy, dry skin, hairloss - I had all my remaining teeth pulled over a year ago, my dentures don't fit/work. I had a total thyroidectomy 6 days after the dental surgery so I don't know what symptoms go along with which diagnosis anymore. @Debbie, I also have GI problems, I've been suffering since July. Possible bad gall bladder, bile reflux, horrible burning stomach, epigastric burning and pain. And the ER doctors accuse me of drug seeking when I have pancreatitis attacks. I also have a bad sleep schedule that I don't like but can't control. If I hadn't pushed the issue I would not have a SS diagnosis, the dr tried to blame meds but I knew differently. The lip biopsy was positive but anti-body negative still, after all these years. Life could be worse but it sure could be better!
Posted @ Saturday, November 09, 2013 6:00 PM by mary b
I have SS and for the first time it is attacking my digestion foremost. I have constipation and the worst acid reflux and bloating you can imagine, Pretty much I can only eat one meal a day, I am having an dndoscopy this week because I have lost 12lbs since June, anybody else have these issues. I take linzess and gaviscon but it still isn't right.
Posted @ Monday, November 11, 2013 5:52 PM by janice
@janice - I have GI problems, bile reflux. Carafate is the only treatment for alkaline stomach but it made me feel worse. I have constipation, bloating, weight loss and only eat one meal/day.
Posted @ Monday, November 11, 2013 7:41 PM by mary b
For constipation I take fiber (psyllium husk powder) every evening. That seems to solve the problem. My worst enemy is acid reflux. I can't drink coffee and take anything that has caffeine. Last year I had endoscopy and colonoscopy. The GI said I had some inflammation on the esophagus. I take OTC Prilosec every day. It doesn't really helps so I bought Green Magma. I drink it 2 to 3 times a day to reduce the acidity of my stomach. It has been a week since I tried Green Magma. It does really help since Green Magma (barley grass) is very alkaline
Posted @ Monday, November 11, 2013 8:04 PM by Avis
Thanks Mary b and Avis, I will look for the green magma and try it, although nexium hasn't helped and Mary b how much more weight can you stand to lose only eating one meal a day. I forced myself to eat lunch and dinner today and it was really hard to eat dinner, it felt like there just wasn't room for it, do you have that feeling too? I am not sure what Carafate is, I will look it up, but what did it do to you?
Posted @ Monday, November 11, 2013 10:53 PM by janice
Janice, you might have to get used to Green Magma. It tastes like raw greens. I tried to eat more alkaline food now. I'm the opposite, I'm always hungry but most of the food I eat tends to be on the acidic 
side.
Posted @ Tuesday, November 12, 2013 8:28 AM by Avis
well, I have an appetite I just can't always eat what or the amount that I want...it is just weird. Thanks
Posted @ Tuesday, November 12, 2013 8:44 AM by janice
Hi, I was diagnosed with sjorgrens syndrome this year but for years I complained that my face would go numb...right side and now my left as well as well as my forehead for some reason. Have not seen a Neurologist, I am in Maine and have no insurance. Doctors here won't even acknowledge it..though I have a written letter from Tufts that explain all the testing...I paid cash for that.Doctors here are often mocking but keep looking for the specialist...Tufts University oral is where I went and they were fantastic. I also had negative blood work but that only moved my doctor forward to do a lip biopsy and a lysamine staining test ordered by an ophthalmologist. So never give up just because of a negative ANA etc. Rgeumatologist snub a person because of this but to be diagnosed officially one needs to meet two out of three criteria and so the ANA is no necessary and does not always show up.By the way I was first sent to an Ear,Nose and Throat doc who said he had no idea what I had and ordered no tests...so I am unsure of their abilities concerning s.s,however he did direct me to Tufts and that resulted in much relief.
Posted @ Thursday, November 14, 2013 10:30 PM by Morgern
@Joy, by the way, I was so depressed that I thought I would not beo.k the day the p.a was so abusive to me,but I had not the Letter that clarified better that I had S.S..I had the results of the tests but she interpreted them completely opposite of what they said!I suspect it is like our symptoms...they are right there in front of the medical field...or most of the medical field, but they refuse to see the truth.Thank God for the research being done and the fine men and woman who stand on the front lines for us when we are to weak and speechless to do so. Thank everyone on this site as well because it is your words that are right here when we need them...without appointments and without mocking...that helps us live another day not all alone. Be well everyone.
Posted @ Thursday, November 14, 2013 10:42 PM by Morgen S
Morgen, just wondered why a lip biopsy, never heard of that. Thanks, janice
Posted @ Friday, November 15, 2013 7:48 AM by janice
@Janice, At Tufts Dental in Boston they do other tests besides just order the bloodwork...which as you remeber I said for me was negative. They do a salaia flow and check you for a long time all the conditions of your mouth and ask a lot of questions which connect all those weird and seemingly non related symptoms.They did the Lip Biopsy to check saliva 
damage etc and that is a major test they can use to support the diagnose of Sjorgrens.
Posted @ Friday, November 15, 2013 9:36 PM by morgen silver
Does anyone have swelling of the Bartholin's gland?
Posted @ Sunday, November 17, 2013 1:49 PM by May
karen4urhealth, I am so glad I found your post here , You have explain so much that I myself is dealing with. I was going to ask if anyone has changes in their female cycle (periods)which they believed to be due to ss. Thank you for sharing your information and symptoms .
Posted @ Sunday, November 17, 2013 4:06 PM by Cathy
to Cathy 
Never gave it much thought until I read your blog about female period, but I went into a rather quick menopause 7 years ago. I was 51 years old. I was diagnosed last year with SSF but I had symptoms for about 5-6 years that I can recall with dry eye, mouth and fatigue, brain fog, muscle aches. I associated the brain fog with menopause forgetfullness. I was glad to get to the truth, to treat the symptoms and I am real!
Posted @ Monday, November 18, 2013 11:49 AM by Ginger
@Ginger All of this started out for me about 3 years ago I had gotten so sick the headaches were unbearable and was having panic attacks. was told I had tmj and then about 2 yrs. ago I was in so much pain (all over) I went to my doctor and ask them to do blood work. Because I needed to know if it was depression or autoimmune .I was never in agreement with the depression. which I was told was the cause. well blood work show the ss, ra, and doctor told me I had fibro as well. dry eyes doctor did stain test No tears at all, dry mouth , can't eat without something to drink and now I believe it is causing changes in my cycles and dryness . I am pre-menopausal but feel it is the ss causing the changes reading Karens post help me allot. Is nice that others share and we can see a connection. My doctor didn't even want to do the test because he kept say depression was the cause for what was going on with me. My RA doctor has been a great help peace of mind knowing it isn't just me :) Thank you for your reply .
Posted @ Monday, November 18, 2013 1:42 PM by cathy
Hey everyone it's my name is Debbie I've been reading all emails and hearing from everybody and it is nice to hear that we are all not crazy. Thanks Cathy, Karen and Ginger for sending more information. I'm just getting over having to have surgery on my vagina due to my disease the surgeon had to take all the bad tissue and cells off which was just about all of my privates. It was very painful. I have had a triple bypass and this was worse than my heart surgery. I kept having problems with dryness and infections and so I went to a gynecologist and she gave me prednisone along with premerin cream and another cream for almost eight weeks nothing worked it just wasn't getting any better. So she said my only choice was to have the surgery. I'm doing better almost totally healed up. The memory problems the tiredness the pain constant. My eyes, my nose. Skin problems. I'm now having throat and chest problems, but I just can't go see another doctor right now I'm so tired. I have within a year and half lost every bit of my muscle mass I've lost a lot of my strength. It's been unbelievable what's happened, but somehow with praying and just trying to make it through each day that's all I can do right now. I'm so sorry to hear about so many that are like me that have to suffer each and everyday that can't find the right doctor. It takes forever to get someone's attention. I hope that Sjogrens, Lupus, fibromyalgia and all of these diseases could get more attention because its so real and very debilitating for us all. It's affected not only my health but my life as a whole. It's affected my family and my relationship with my husband. You would think families would get closer when things like this happens but sometimes it pulls everyone apart. I sure could use the support and understanding so much. But like I said all I can do is pray and hope things change in the medical field and we all can get the help we need so badly.. God Bless You All...
Posted @ Tuesday, November 19, 2013 12:39 PM by
@Debbie. Thank you for sharing. You went through a lot. I have dry mouth, dry eyes, acid reflux and vagina issues. Somehow one of my bartholin's gland was swollen but the gynae said its ok as long as it doesn't get bigger. Sometimes I do get sharp pain in my private area its like being poke with a needle.
Posted @ Tuesday, November 19, 2013 2:50 PM by May
@janice - Sorry just getting to read this. I was always overweight, suspect PCOS, so the weight loss is still OK for me but I am afraid to buy clothes because I keep losing. I have been going to resale shops or swapping with other people until I level off, if ever. ;) The Carafate made my esophagus burn. I am over withdrawing from taking 6K mgs of Tums daily as a calcium supplement, because of post-thyroidectomy low PTH/low calcium/low Vit D3. Tums are highly alkaline so along with the bile reflux I was a mess, then there is a rebound effect. My GI said to try the Carafate again when I feel better, still waiting on that. I get FULL, bloated, like everything just stops, freezes up. I'm thirsty but too full to drink, you can hear my stomach contents slosh around when I walk. When I do get hungry, food gets stuck and drinking doesn't help matters, quite the opposite. I keep full-fat chocolate milk here for when food sticks badly, it either pushes it down or helps bring it back up. So I get to enjoy eating but only half the food/calories stay in me. I started taking 250 mg magnesium 2x/day which helped my constipation, BP, headaches, calcium, dizziness. I will start adding Vit D3 and calcium of another source soon, I read that we need magnesium for the rest to work right. My lip biopsy was very easy. A couple of dis-solvable sutures that came out early but all was fine and painless for me, I was eating soon afterward. I have been getting vag pain for about a year, the dryness started decades ago. It feels like oxalates, sharp crystals, like a kidney stone inside my tissues or like I scratched myself wiping .... has anyone post-menopausal ever had a tiny bit of blood after wiping, but from your external genital area? This has happened twice, I was tender for a few days then it healed. Lately I have trouble taking a deep breath but I'm not congested. Sleep has been absolutely horrible, worse than ever. I hope we all get to feeling better for the holidays!
Posted @ Tuesday, November 19, 2013 10:33 PM by mary b
Thanks so much for sharing MaryB, your stomach issues sound just like mine. I can't take calcium or VD3 as they turn my digestive system to feel like concrete. I take Linzess for the constipation and it helps. Recently I tried magnesium and sometime it will relieve that stuck feeling in my colon and the acid trying to come back up. I have been trying to eat more to maintain my weight for about a week and was doing good til yesterday, acid and esophagus issues and colon issues are back. They stretched my esophagus last week and it seemed to do the trick til yesterday. Honestly I really don't know what to do next, although my GI guy does recognize Shogren's and I go back to him in about 2 weeks. I have never had vaginal issues, but honestly these symtoms got better after I had breast cancer and started taking a hormone blocker..until now that is and that was 4 years ago. I am past menopause but it helped anyway. It is hard to be vigilant of cancer coming back with the weird symptoms that come with this. Thanks again
Posted @ Wednesday, November 20, 2013 9:26 AM by janice
@janice - Wow, I didn't tolerate Rx D3, which was actually D2, and I urinated out most of the Tums/calcium and got kidney stones while taking it. We sound so similar, I have wondered about a metabolism or hormone problem for decades, your post-cancer hormone-blocking med experience is very interesting. I hope your upcoming GI appt is of some help. I have other diagnoses so I know what you mean about not knowing what symptom goes with which diagnosis. Let's keep comparing notes, maybe we can help each other. I am going to a university hospital/clinics in January, that is where my lip biopsy was done and Sjogren's was diagnosed, and where my pancreas doctor is located. Be well! :)
Posted @ Wednesday, November 20, 2013 3:39 PM by mary ballerin
Sounds like a good idea MaryB I will keep you posted and thnks again for sharing with me, it is funny but today so far I feel completely normal and that can change in a "minute" Have a good day
Posted @ Friday, November 22, 2013 8:54 AM by janice
New to this site. Many symptoms for years, but triggered to really bad in the last month sent me to docs for the umpteenth time & confirming bloodwork moved me on to the Rheumatologist for positive confirmation of Sjogren's. I do not want nor choose to let this nasty condition define me. Still, so good to know there are some out there who understand a little. Think I'll take a little nap now,(provided I don't cough too much or hurt too much to fall sleep)
Posted @ Wednesday, November 27, 2013 1:47 PM by C T
Wanted to ask if anyone takes a natural hormone replacement due to menopause and Sjogren's.Thinking the Sjogren's is causing dryness and irregular cycles.
Posted @ Wednesday, November 27, 2013 5:22 PM by Cathy
I did years ago but due to breast cancer which was a hormone receptor tumor I now block my hormones with a drug called aromasin, allot of my symptoms actually improved with this but others didn't
Posted @ Wednesday, November 27, 2013 6:31 PM by janice
I am 60 years old and dealing with degenerative disc c-2 through c-9, digestive disease taking Nexium for over 20 years. Been feeling really exhausted lately and vertigo much of the time. After visiting a Rhuematologist and blood work and x-rays, final diagnosis was Sjogren's disease. No dry eyes yet, but dry mouth and in much pain most of the time. I work out with weights and several P90X and Insanity with Shawn T, but exercise is very tiring. I am told to stay away from dairy and eggs, which will be rough, but even considering a gluten free diet to better this god forsaken inflammation that has gone to my blood stream. The anger is hard to control at times, but life goes on.
Posted @ Thursday, November 28, 2013 9:18 PM by Joyce Harris
Hi everybody. There is a place in Massachusetts called Kushi Institute, as soon as I am done with the child support I will go and intern my self. google it 
 
Richard
Posted @ Tuesday, December 17, 2013 8:13 PM by Richard
There's an other place in Mexico, right across the border line with with Ca. It is a very small city called Algodones Baja California. They are working with the stem cell. Many people from the U.S Mexico and several other places from arround the world had been cure from there illnesses. I live in California for me is not that far. I have not gone there yet, because I have been visiting Drs, to find out what was wrong with me. I have not been diagnose yet but I got mostly all the symptoms you talk about in this forum. If some of us get together and pitch in with gas and flip a coin see who take his vehicle, some of us could go. Richard
Posted @ Tuesday, December 17, 2013 8:40 PM by Richard
So frustrated. Tired all the time. "Sick and tired of being sick & tired." The first blood tests indicated Sjogren's (positive ANA). Further blood tests say otherwise. Yet Rheumatologiist is "treating the symptoms" which puts me on Salegin (sometimes it helps & sometimes it doesn't. Weird.) as well as anti-inflamatory meds & fly-by-the-seat-of-my-pants. Everyday is a new surprise...is it going to be unbearable joint pain and muscle cramps tonight, or will I be so devoid of saliva I cannot swallow all night long, or will I just wake up every hour all night for no known reason other than I am physically uncomfortable in my own skin??? This just goes on & on & has for so many years. (I'm so used to dry eyes I don't worry anymore about the sight blurriness nor the burning unless it really imposes on my ability to function.) Who needs a name for this condition, anyway? Just want it to go away & let me appreciate what little life is left in this old body. Meanwhile, I am trying natural cures, and it seems raw apple cider vinegar (1 TBsp) a day w/ blackstrap molassess in water (choke it down though I must) helps the dry mouth issues even though the Rheumy denies it can change the PH in the body...desperate I am. Even going through my cupboards & tossing anything w/ High Fructose Corn syrup...amazing how many products are made w/ that shit. Rambling on, but glad to know this site exists. May we all soon be better.  
 
Posted @ Tuesday, December 17, 2013 10:20 PM by CT
CT- 
 
I take hydro chloroquine and feel 10 times better though it took 3 months to kick in. I also kicked all food that is high in acid and eat mostly foods high in alkaline. If I splurg and eat acid based foods once I feel like I am where I started when I got sick all over again, but eating healthy and exercising makes me feel like I have the energy of a teenager again! Talk to a dietician about alkaline vs acid -based foods!!!! I hope this helps!
Posted @ Tuesday, December 17, 2013 10:44 PM by Hedy
Thank you, Hedy. Is chloroquine over the counter or do you need a script for it? I will look into it. Yes, trying for low acidic diet. Difficult during the holidays & baking for the grandchildren, etc. I do notice a negative difference if I eat sugar products or even drink any alcohol at all. And then there's the barometer... that one is beyond my control (lol).
Posted @ Tuesday, December 17, 2013 11:13 PM by CT
Hi CT, the hydro chloroquine is prescribed. The holidays are hard, but the holidays are also where we all give a little more, and so maybe we substitute one side dish for one healthy side dish, and make one new side dish that is healthy for everyone. Kids should be taught to eat healthy when they are young! We are their influences! I am convinced my sjogrens exists due to my unhealthy eating habits! And so I can hope that eating healthy may change my status, as I have heard about this happening to a woman who had lupus. (Undiagnosed 5 years after eating all alkaline based foods)! We all can be hopeful! This holiday, my mother and I will be making a veggie chilli (with minimal tomatoes - as these are the highest garden product made of acid bases) and we will be trying to create a number oh quinoa dishes! Christmas and the holidays aren't just about the fudge and cookies anymore! Though these and many others are ever sooooo delicious, it's difficult to continue to eat things that wear me down and immediately (and over a period of time) make me feel awful! I'm from Wisconsin and we love our beer here! My husband and I are condesuers in many ways! I would have not been diagnosed with SS if it wasn't for alcohol. Drinking alcohol puts a load of stress on my body and my legs break out through something called vasculitis. For a woman in her 20s my body often feels like its getting old and worn fast. As for the barometer and let's not forget the temperature, it plays a huge role in whether I can even move some days, and how slowly or quickly I move. It is so difficult to live in a body that simply cannot keep up with my fast paced life style, and active mind. I decided awhile ago that sjogrens will not define me. I work four jobs, one of them being teaching special eduction. I love life on most days, except the days my body can't keep up, but I keep moving....simply due to Newton's first law: an object in motion stays in motion. I'm stubborn, so of course I say, "I will rest when I say I will rest!" Small steps seem to help get to where I want to be quicker. Mt. Dew and it's caffeine that seems to keep me moving sometimes will be the death of me. For the most part I am pretty good about what I eat! Good luck to you, and happy holidays!
Posted @ Wednesday, December 18, 2013 10:20 PM by Hedy
Hey everybody. Richard here again. I just found something very promising, to be honest I think this is the light at the end of the tunnel. this is the hope for everybody in this forum. go to this website and check it out yourselves.www.digestacure.com orwww.digestaqure.com 
 
Happy holidays. 
 
Richard
Posted @ Friday, December 20, 2013 12:06 PM by Richard
Sorry! I made a mistake above on the last website address. I should have writtenwww.digestaqure.com 
 
as I said previously it could be either with the c or with the q
Posted @ Friday, December 20, 2013 12:34 PM by Richard
Getting so sick and tired of being thirsty and tired 24/7.
Posted @ Friday, December 27, 2013 10:14 PM by CT
Hi everybody, me again Richard. I just want to mentioned to all of you, that I started a vegetarian diet. It's been only 4 weeks since I started and many of the symptoms are going away. 
 
Happy new year to all. 
 
Richard
Posted @ Saturday, December 28, 2013 9:35 AM by Richard
I have been diagnosed with SS for a couple years because of dry eyes and mouth as well as other thing. My PCP, who is fabulous, tested me and the SS was there. I have had some problems with the mouth and am constantly drinking and sometimes can't even talk. But the last several days my eyes feel like there are handfuls of sand in them and won't stop watering. Strange? I've been putting drops in alll day and cannot see. My vision is so blurry it is nearly impossible to see my computer screen, It does subside for a short while (half a hour) here or there during the day but this has really getting me worried. I am making an appointment with the eye doctor in the morning. Of course this trouble started on Friday so had to go through the weekend. I had recently started a new med of that had a side effect of possible blurry eyes. I have stopped that 2 days ago but the pain of the scratchy eyes is no better. Is this just a bad flare up of the sjogren's? Is this "normal" for SS. I am very scared as eyes are so critical.
Posted @ Sunday, December 29, 2013 10:48 PM by Jo Allebach
Anybody have their throat feel like it is closing up sometimes?Do you think that is just a feeling that sjorgens give you or is it real and I should be concerned...it feels like it is really happening.
Posted @ Monday, December 30, 2013 3:54 PM by Morgen S
I am seeing every economic availability we once had slipping away. I am almost out ofmy meds and it is a choice between food,wood and meds...so no meds obviously. The disability application process is a nightmare..I am too tired to get all the paperwork they require. Does anyone know how I can get help with this process? It is debilitating tome to get so overwhelmed and I am so worried all the time about food,meds and heat..the expense of seeing doctors haS WIPED US OUT.
Posted @ Monday, December 30, 2013 3:59 PM by Morgen S
Morgan: I don't know where you live but there are attorneys who will file disability application for you and usually charge only when you receive your benefit. It does take at least a year, but in my state you would get paid for the year it took to obtain the disability. Try looking up disability lawyers on the internet or have someone help you. I am so sorry you are struggling! Also in my state there is a law school that will take clients for their senior students who are supervised by their professors. Good luck!
Posted @ Monday, December 30, 2013 4:14 PM by Joy
@joy..thanks so much.i LIVE in maine. I will try to find someone...do you think that primary sjorgrens diagnosis might qualify?
Posted @ Tuesday, December 31, 2013 10:16 PM by morgen s
It all sounds so familiar! After all these years of hurting and tendonitis over and over again...Finally got the diagnosis!i am on Plaquenil and Salagen
Posted @ Wednesday, January 01, 2014 5:34 PM by karen smith
Hi , I am suffering from dry eyes ( won't go away ) and dry nose, Opthalmolosgist says my eyes are mild dry and he prescribes eye drops only.But I feel very discomfort, it is affecting my career and and my confidence. 
suggestion please !!
Posted @ Friday, January 03, 2014 4:44 AM by Rita
Hi , I am suffering from dry eyes ( won't go away ) and dry nose, Opthalmolosgist says my eyes are mild dry and he prescribes eye drops only.But I feel very discomfort, it is affecting my career and and my confidence. 
suggestion please !!
Posted @ Friday, January 03, 2014 4:45 AM by Rita
I am sure your eye Doc told you to try gel tears and the best thing I have found for my nose is to use coconut oil (organic/virgin) along with saline solution in my nose. The coconut oil heals that raw feeling, it has really helped me.
Posted @ Friday, January 03, 2014 7:33 AM by janice
Hi Janice! check out this website 
www.digestaqure.com I am just waiting for my situation to get better, (money wise) to start that program. 
 
regards 
 
Richard
Posted @ Friday, January 03, 2014 8:32 AM by Richard
Morgen: I is my understanding that the Social Security Administration published a Listing of Impairments for Sjogren's in 2009. However, I also understand that you and your attorney must have very thorough medical records and present the many facets of the disease process and its effects on your ability to work. It would probably help if you kept a diary recording the day to day problems you are having because of Sjogren's. You need to locate an attorney who specializes in Social Security Disability because they can guide you through the process.
Posted @ Friday, January 03, 2014 8:48 AM by joy
I was diagnosed by the Mayo Clinic with primary sjogrens in 1999 after six months of suffering debilitating symptoms. I chose more natural treatments over allopathic treatments so experimented with various nutritional and herbal remedies but, purely by accident, have recovered and managed my health simply using progesterone cream on a daily basis. I began using it just to relieve menstrual symptoms but it took only four months for me to return to 80% of my former normal self and, one child and 15 years later I remain on this simple regimen and feel 95% of my former self. The few times I have not had my cream for a few days symptoms slowly creep in from swollen digits to mucosal membrane dryness to swollen parotids. I am, of course now 50 so age probably has more to do with my not being 100% more than my SS. Just wanted to share my story of this simple transdermal natural progesterone supplementation has has been my miracle cure and maybe worth trying for fellow Sjögren's syndrome sufferers. I also have a theory that there is a correlation between the mumps and SS as it appears many other SS sufferers contracted the mumps prior to being diagnosed with SS, myself included.
Posted @ Sunday, January 05, 2014 11:34 AM by Jen
I have red rash around my mouth. It is also itchy and tingling. I look like a clown. Anybody has this kind of problems? 
The spicy food really irritates my mouth. I am going to the dermatogolist on Wednesday.
Posted @ Monday, January 06, 2014 11:59 AM by May
Anyone besides me struggling with long-term chronic cough along with this dry mouth so bad I cannot swallow sometimes and Salagen only works sporadically? Now there are tumors growing on my gums and my tongue hurts more days than not. And now they say my lungs have become scarred. Too little saliva and too many autoimmune cells that don't know who the enemy is anymore. Who says this infernal condition doesn't kill you? It just does it inch by inch with a lot of suffering...don't know where to go from here, really.
Posted @ Tuesday, January 07, 2014 8:32 PM by CT
CT Have you tried using coconut oil for your mouth it seems to help with inflammation and the dryness. sometimes my nose gets really dry as well as my mouth and eyes and you can use alittle coconut oil inside your nose to help with the dryness. I have recently started taking flaxseed and eating greens which seem to be helping. Hope you will feel better soon.
Posted @ Tuesday, January 07, 2014 9:17 PM by Cathy
Cathy: Thank you so much for the suggestions. Yes, funny you should mention it; I do use coconut oil every day...mouth, nose & lots of other uses as well. It's great stuff, but doesn't help much anymore. Sometimes unfiltered apple cider vinegar helps a little(when I can choke it down--blackstrap molasses helps), omega 3's, & every other healthy thing. Very nutrition conscious. Was the proverbial Earth Mamma all my life, was an athlete, a poet, & even my attitude has always been very positive until now. I really don't understand why I just seem to have hit a wall & it just keeps getting worse instead of better. Frightened for what the future holds in this quickly degenerating body. Don't want to die of thirst & gasping for air. Guess we don't get to choose, though. But your response is comforting. Thx.
Posted @ Tuesday, January 07, 2014 10:34 PM by CT
RE "I have red rash around my mouth. It is also itchy and tingling. I look like a clown. Anybody has this kind of problems?  
The spicy food really irritates my mouth. I am going to the dermatogolist on Wednesday. 
Posted @ Monday, January 06, 2014 11:59 AM by May" Check out "chelitis" on Wikipedia
Posted @ Monday, January 13, 2014 7:51 PM by Patti Morris
Hey to everyone and yes CT I have the same problems I've been diagnosed with fibromyalgia,, Sjogrens and two doctors or going back and forth over me also having Lupus and I also have coronary artery disease. I have fought so hard for the last year and half. I have had to have major female surgery due to the inflammation. And I'm having trouble with vocal cord inflammation went to the ENT and he said there is nothing they can do about it that it will never go away. I have stomach issues along with very bad fatigue and insomnia and memory problems. I'm in pain constantly my skin is horrible. I have no energy what so ever. I do good to get up out of the bed everyday and believe me a lot of them I don't because I just can't. These diseases have taken my life away and I have been to so many doctors and even went to Mayo Clinic in Florida to try to get some help. I don't understand why no doctors that know are even care to help. They act as if what you are going through is no big deal. I live in Tennessee so it's cold here now and boy have I gotten so much worse since it got cold. I'm at my wits end. I'm with so many of you that just don't know where to turn or what to do anymore. I just want to have some energy and get some rest and have some kind of quality in life and make a difference I'm fifty and feel like I haven't been able to do so. I truly feel as if I'm dying, that's how bad I feel. My regular doctor took xray and blood test again to check everything and he said the xray showed major inflammation in my gut, so my food is not digesting right. And all my blood work was worse. He said my illness was very serious, but all he could do was try different things. So now he has me taking B12 shots and put me on Vitamin D once a week and I'm also have been on plaquenil since diagnosed it doesn't seem to help at all but maybe it is I don't know. I truly pray and wish that they could come up with a cure for all of these immune diseases. And I really wished that family and people in general understood what we all are going through on a daily basis and could get the support we really need, so we could get through each day better. I feel so alone and scared that I'm not going to see my grandchildren grow up. If anyone has any advice at all for me I sure would appreciate it. I don't know what else to do but just lay here and suffer each day. Thanks to everyone that does post all there thoughts and what they're going through. It lets you know your not alone and there are so many people that are suffering badly with these horrible conditions. God Bless You All..
Posted @ Wednesday, January 22, 2014 1:16 PM by Debbie
Debbie. there is a place in Massachusetts called cushy institute. I don't know if i spelled right but you can google it, and you'll see what is about. I have plans to intern myself in the near future. They even take people and give the tratment for free if you volunteer. It is all natural.
Posted @ Wednesday, January 22, 2014 2:36 PM by Robert
I was diagnosed with CFIDS (Chronic Fatigue Immune Disfunction Syndrome) back in the early 90s. Dealt with joint pain and extreme fatigue. Medication helped some but I live with the symptoms. At first they thought I had Lupus (my father's sister had systemic lupus) but ruled that out. Years later, at age 50 I developed diabetes. Dry mouth was what sent me to be tested. At about the same time I had my first kidney stone. Over the last 12 years I have had over 50 stones and have yet to go even 10 months without having to have a stone procedure. I have suffered from dry eyes for years (can't use Ristasis). My PCP finally mentioned Sjogren's Syndrome when I told her how bad my dry mouth had become. It all seems to make sense now! Has anyone else had kidney stone issues with the Sjogrens? I've been tested by every kidney stone specialist, even at Mass General and the head of the kidney stone foundation to no avail. My mouth is so dry that I cannot swallow. I drink 1/2 to 3/4 of a gallon of water each day - do not use salt or prepared foods. My height is 5' 5" and my weight 148. I was also recently diagnosed with osteo arthritis in my hands. I can't believe that all these symptoms could be related after all! Thanks for all your postings. Great to know I'm not alone in this!@!
Posted @ Thursday, January 30, 2014 9:56 PM by Marcia
Dr. Wolfe dxed my mother 12+ years ago. She went through quite a few different medicnes and all worked for a while. It took 10 years for her to be dxed! Fast forward, she is now in an electric wheelchair and has no feeling head to toe. She also has dry eyes and mouth. She also has eye plugs in and out! Dr. Gil said she is one of the "lucky" ones with both muscle and dryness! Now my father has died and making the 3 hour trip to Dallas is impossible. She is becoming weaker and using her walker to get to the bathroom is almost impossible. She wants to continue physical therapy, but my brother and I think she the SS is taking it's toll and she should not overdue. Any advice?
Posted @ Tuesday, February 18, 2014 9:21 PM by brenda
Thank you Dr. Schafer for the article you wrote for The Rheumatologist publication outlining your experience as a patient with Sjogren's Syndrome and your plea to the medical profession to get educated and a plan for medical management. Although it isn't funny, I had to smile when I read your admonition to the medical profession to "top telling us to be glad that we don't have lupus." Many of us have heard versions of this and it is very disheartening and incredibly insensitive for anyone to say, let alone a physician. I want to send a copy of this to several physicians I have seen, but will resist the urge. I wish the Sjogren's Foundation would distribute this widely to the medical profession - not just rheumatologists. I understand that some HMO's have educational seminars for their physicians and wish this was the case for Sjogren's. At the very least, I hope my rheumatologist receives the publication and has read Dr. Schafer's article
Posted @ Thursday, April 03, 2014 11:26 AM by Joy
Hi Every body. As I said in my previous email, I was going to intern myself in Kushi institute, I did already and I am cured from S'jogrens. There as a DR in filadelfia as well that can help with Sjogrens. you guys can also google healing s'jogrens disease with liver flush. My impression with many people here is that they just complain and complain, but it seems to me like like they're not willing to do much for themselves. I had posted many messages and nobody seems to care. so this is the last time I try to help.  
 
so long every body 
Robert
Posted @ Thursday, April 03, 2014 7:51 PM by Robert
Robert. I apologize I missed your other emails. I live near Phil. What is the name of the doctor.?Would love to check it out.
Posted @ Friday, April 04, 2014 12:36 PM by Ginger
Hey Ginger The name of the dr in Philadelphia is Dr Peter Laibson Ophtamologist. I think the Hospital name is Wills eye Hospital.  
Listen, you can google his name and also name of hospital. You enter Philadelphia Wills eye hospital phone number.  
Good luck Ginger if any questions do not hesitate to email me to pirrurris48@hotmail.com
Posted @ Friday, April 04, 2014 1:49 PM by Robert
First of all I wanted to say to Robert that some of us have been reading his messages and appreciate his efforts ;-)  
Secondly thank you all so much for helping me put the puzzle pieces together. I have been suffering for many years with hair loss, pain, kidney stones, nasal polyps, fatigue,you name it. It really helps to identify your enemy so that you can try to find ways to help yourself. The things I have found most helpful are gluten and dairy free diet, aloe vera diluted with lots and lots of water, slippery elm, vitamin B12 and vitamin D3, chiropractic treatment/lymphatic drainage, hot water bottles (esp for kidney stones/infections), magnesium for constipation. Thank you to the lady that suggested natural progesterone, I had forgotten that I tried that many years ago and found it helpful - I have just ordered some more. Big hugs to all of you. Hope you have a pain free Easter weekend xx
Posted @ Thursday, April 17, 2014 11:35 AM by Sweetheart
P.S. I just looked up the flush that Robert suggested and it makes a lot of sense. Here is an interesting link...  
 
http://www.ener-chi.com/healing-sjogren-disease-with-the-liver-flush/
Posted @ Thursday, April 17, 2014 11:40 AM by Sweetheart
To "Sweetheart", a big think you for a positive blog here. We must all be more proactive in our own treatments. If we see ourselves sickly, we become more sickly. No one said it would be easy, but I am coming to see that "food is our medicine & medicine is our food".
Posted @ Thursday, April 17, 2014 11:47 AM by CynthiaT
My pleasure Cynthia :-) I gave up any hope of doctors sorting me out years ago when I realised that prescription drugs often cause more problems in the long run :-( Nowadays I pay a lot more attention to anecdotal evidence of improvement. One important thing that I forgot to mention is probiotics (esp after taking antibiotics). They really relieve digestive distress and bloating, which in turn makes you feel much more perky :-) I have been taking Higher Nature's Probio Daily because they aren't made with dairy. Hugs xx
Posted @ Thursday, April 17, 2014 1:12 PM by Sweetheart
Sweetheart: I think you would find a lot of support on a FB site,(if you have facebook): it's Sjogren's Syndrome Alternative Therapies Group, a closed group, but accepts all who want natural & healthy ways to be better/heal themselves w/o big pharma & traditional docs who only treat symptoms & not the cause. A great & positive group.
Posted @ Thursday, April 17, 2014 1:27 PM by CynthiaT
Thank you Cynthia, I have asked to join :-) x
Posted @ Thursday, April 17, 2014 2:56 PM by Sweetheart
Hello all, 
I have only been diagnosed with Sjogren's in the last year, but have had symptoms for more than 7 years, mostly extreme fatigue and terrible back and joint pain. I think changes in my diet and taking Vit D and fish oil and eating healthier has helped with my ability to sleep, but the pain seems to continue to get worse. Now, I am dealing with bad pain in my right hip and knee and having trouble walking. I have 5 children, from ages 8 to 21 and they need me, and my husband could use a break. Does anyone have any experience with hip pain and any advice to alleviate that?
Posted @ Wednesday, April 23, 2014 12:40 PM by Michelle Griffith
Michelle Griffith, I found taking turmeric root daily as well as raw ginger (or caps when in a hurry)have actually taken away most of the severe pain I had for years in SI joint & left hip. I do not even need to take advil or alleve anymore, and that's huge! These natural foods are anti-inflammatory & I was amazed they really work. They don't cure everything w/ sjogrens, but they sure do work for that joint pain. 
Posted @ Wednesday, April 23, 2014 5:59 PM by CynthiaT
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