Patient Comments: Sjögren's Syndrome - Describe Your Experience

Question:

Please describe your experience with Sjögren's syndrome. Submit Your Comment

Comment from: kevolner, 65-74 Female (Patient) Published: August 09

I am now suffering from Sjogren’s syndrome after suffering from a CSF (cerebrospinal fluid) leak. It was caused by a meningocele in my spine. I also have a mastoid torticollis in my neck. A sac formed in my brain and ruptured due to delays from insurance. The surgery was extensive, and my vidian nerve had to be sacrificed. So now I have no saliva in my mouth, optic nerve damage from the surgical delay, fatigue, and severe nerve damage all over my body, but especially in the mouth and tongue, and my cognitive skills were damaged.

Comment from: Michelle R, 45-54 Female (Patient) Published: July 16

I have experienced frequent headaches, sinus infections, blurred vision, muscle cramps, and frequent colon infections because of Sjogren’s syndrome.

Comment from: Pattycake63, 55-64 Female (Patient) Published: July 12

I have extremely dry lips, mouth, eyes, and skin. I have had Sjogren's Syndrome for years, but as I get older it has gotten much worse! I am 63 years old and all my woman parts are so dry and painful too, that I could cry. I wonder if there is anything I could take, even prescription, that can relieve the overall dryness. I drink water all day, every day, until I run to the bathroom all day long.

Comment from: Lola, 75 or over Female (Patient) Published: May 02

I was diagnosed with Sjogren's syndrome a few months ago. Coping with this ever changing disease is sometimes overwhelming; I have very dry eyes and dry cotton mouth. I use Tic Tac for moisture and it helps a lot. I used Biotene products which didn't work, and am using Eucerin lotion and cream for dry skin. It is now affecting my legs, I have burning on the sides of my legs, burning on the bottom of my feet, and am always so tired!

Comment from: catherine, 65-74 Female (Patient) Published: March 20

Sjogren’s syndrome is turning out to be one of the most difficult autoimmune diseases I have. The cotton mouth comes on unexpectedly, makes it difficult to talk, and the burning eyes wake me up in the middle of the night (despite regular use of eye drops and humidifier). I spend a fortune in high quality skin moisturizers. And I have painful irritation in areas I won't mention, in spite of use of Premarin cream.

Comment from: Mary , 65-74 Female (Patient) Published: November 18

I'm suffering horrific consequences of Sjogren’s syndrome not being treated and classed as neurotic. I had to stop Plaquenil.

Comment from: Jinty , 55-64 Female (Patient) Published: February 26

I have been diagnosed with fibromyalgia and I am waiting for blood results. I have many symptoms of Sjogren’s syndrome, just haven’t had a second appointment with rheumatologist. I have recently been on antibiotics for a cyst in my eye. I was diagnosed with dry eyes a few years ago.

Comment from: Rosalyn , 55-64 Female (Patient) Published: October 25

I have been experiencing many of the symptoms of Sjogren's syndrome. I have had underactive thyroid for more than 20 years, which I diagnosed myself, as I was being treated for depression. I am now at the end of my tether and feel so tired. I have memory loss, joint pain, as well as many other symptoms.

Comment from: Chellbell, 25-34 Female (Patient) Published: October 19

I have had medical issues for years, and have not been sure what I have, and doctors aren’t sure either. I have dry eyes, extremely dry and always have joint pain and the joint pain has increased. My lips are always dry and I drink a lot of liquid. I’m always fatigued. I have seen specialists and doctors, I think it is Sjogren’s syndrome. Even with eye drops and prescribed drops eyes still hurt, and I get constant headaches every day. My memory has not been doing good, and I have had blood tests and x-rays.

Comment from: Ldw1953, 65-74 Female (Patient) Published: June 27

I have the typical dry eyes, mouth and throat indicative of Sjogren’s syndrome. I just came from the rheumatologist who informed me I have the beginning signs of interstitial lung disease. Fun! I may have developed this as a secondary disease to primary biliary cholangitis. Every drug they offer me affects the liver so I’m caught between a rock and a hard place. The doctor just prescribed Plaquenil but I’m terrified to take it. The side effects and precautions are unbelievable. I have to have blood tests in two weeks to see what it does to me, that is, liver enzymes. I’m damned if I do and I’m damned if I don’t. Then there’s the Zetia for high cholesterol, another side effect. This disease can lead to heart disease.

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Comment from: Roxy, 55-64 Female (Patient) Published: May 24

I am 60 years old and have had Sjogren’s syndrome for 10 years. I have dry mouth and Evoxac 3 times a day helps greatly. Now I have a spontaneous tendon break in my pinky finger, where the tip is flexed. Also my ring finger is unable to flex down to my palm. I wonder if this is related to Sjogren’s.

Comment from: josicat, 55-64 Female (Patient) Published: May 09

I take 200 mg of magnesium a day and a B12 vitamin. It has helped with the brain fog and the fatigue that goes with Sjogren’s syndrome. I only have a mild case of it. I was diagnosed in 2016. Probably have had it for 10 plus years.

Comment from: DebThread, 55-64 Female (Patient) Published: April 04

As per my luck, I listed most of the 20 diseases I have, not counting some that are symptoms of brain fog, like major short term memory loss and all the rest. I guess what I put was too long so after 30 minutes of typing it went away. I would like to know if anyone else has problems with aggression. Not hitting, but saying or emailing mean things. I know better but it still happens. I don’t know if this is the diseases or any of the 20 plus pills I take for all my illnesses. I am in my worst Sjogren's flare ever. I was diagnosed 5 years ago, but I think I have had it longer. All the things that go with brain fog are horrible right now. Thanks.

Comment from: Barb, 65-74 Female (Patient) Published: February 13

I have Sjogren's syndrome. I also have subacute cutaneous lupus. My dry eyes cause much distress toward the end of the day. I have had punctal cautery which had no effect. I have been taking Restasis twice daily for over a year. Recently I bought a pair of moisture chamber eyeglasses on line. Mine fit over my prescription lenses and they have really helped a lot. I can even watch about an hour’s worth of TV. I run a cool mist humidifier in the living room and bedroom. My rheumatologist mentioned briefly to find out what I can about patient serum eye drops. Nobody in my area knows how to go about starting this treatment up and running.

Comment from: Unusual, 35-44 Female (Patient) Published: February 03

I'm not your typical Sjogren’s syndrome patient. I was diagnosed a little over a year ago. I do not have dry eyes, joint pain or dry mouth. I suffer from Sjogren’s in the brain. It is extremely rare. Over the last year I've taken lots of steroids and now it has quit spreading in the brain, but I do have scarring. I suffer from severe migraines, cannot handle bright lights, and occasionally my left side does not want to work properly. I have lost some fine motor skills. I am continually getting rare side effects from an autoimmune disorder like pyoderma gangrenosum (skin ulcers) and neuralgia.

Comment from: Mari, 45-54 Female (Patient) Published: January 23

Within the past few years I've been experiencing increased dry eyes, mouth, nose, skin, decaying teeth and approximately two years ago increasing pain in my joints and bones. I was diagnosed with Sjogren's syndrome by my rheumatologist about a year or two ago. The arthritic pain has gotten to the point that it interferes with my daily functioning. As of late, I attribute it mostly to the cold weather. It's unbearable at night. As much as the dry eyes, nose, mouth, etc. affect me, the arthritic pain is the worst. I was prescribed fludrocortisone 0.1 mg but I didn't take it long enough to feel any improvements, only because I'm taking other medications. I was concerned about contraindications. I also opted out of cortisone injections and I'm currently looking for other alternatives, preferably holistic. In the meantime I take ibuprofen, soak in warm Epsom salt baths, massage and rub my joints with Mentholatum and use heating pads. It's after 2 am and the only reason why I'm still awake is because of the pain throughout my entire body. I'm trying to be hopeful, but the chronic pain is taking its toll physically and mentally.

Comment from: Helena, 25-34 Female (Patient) Published: November 21

I am 34 years old, and I was diagnosed with Sjogren’s syndrome 10 months ago. It was very bad with my health, because all the symptoms I have I believe for sure I have it already for 4 years. I have red dry eyes, dry mouth, bone pain, fatigue, and I thought often my joints were out of place. I went often to a massage chiropractor, to eye doctor, and family doctor. Finally 10 months ago one eye doctor told me he thought it was Sjogren’s, so my doctor tested, and yes, it was. I couldn't handle the drugs. I badly needed help, so we went to Mexico; there you get the best cure. I am thankful for that.

Comment from: Murriel, 45-54 Female (Patient) Published: October 10

I was diagnosed with Sjogren’s syndrome more than 10 years ago, sort of by accident. I was seeing a rheumatologist for joint pain and happened to mention that I had my tear ducts plugged due to having huge tear ducts. They ran the Sjogren's tests and I was diagnosed. At first, I had more eye trouble and have used Restasis for years and I find that wearing contacts holds the moisture in. Then I had more mouth trouble and used to have at least 1 abscess a year. But since I stopped traveling for work, I've been stable. I'm allergic to Plaquenil and all NSAIDs and I didn't have luck with Salagen. So I just deal with it.

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Comment from: Kristina, 35-44 Female (Patient) Published: September 07

I started to lose feeling in my toes 3 years ago and it progressed up to my chest within 3 months. At the time they diagnosed me with vitamin B12 deficiency and after treatment and no improvement and hundreds of tests and scans later I still had no diagnosis for the cause of this. I had lost all of my teeth about 2 years before and also was having problems with dry mouth and dry eyes. After being in hospital for 3 months they finally did biopsies and there were no clear results. After another 12 months they did more extensive biopsies and I was found to have Sjogren’s syndrome. I have had a six month course of chemotherapy and no improvement in symptoms and now just have been started on long term treatment with methotrexate to try and help symptoms.

Comment from: maddi6, 75 or over Female (Patient) Published: April 19

I was diagnosed with Sjogren's syndrome in 2004. I had been ill for 2 years prior to this. I was then diagnosed with mixed essential cryoglobulinemia and I had to have 38 apheresis treatments where they remove all of your blood then centrifuge it and replace the plasma with albumin. So far this hasn't returned but I now have very severe pain across my shoulder blades and into my ribs. I also managed to get a herpes infection on my cornea and will be on anti-viral medication for the rest of my life. I just want to feel well again.

Comment from: CURTISES1, 75 or over Male (Patient) Published: December 29

I have had Sjogren’s syndrome for about 13 years, starting with dry eyes and progressing to macular holes in both eyes which have been corrected. My latest problem is skin lesions, like something is depositing out of my feet and legs. It is scaly, and can be removed with a bit of scrubbing but leaves my skin irritated. It is progressing up my body in the form of a severe skin rash. The rheumatologist that I am seeing has prescribed acetonide cream. It works marginally.

Comment from: Karin, 35-44 Female (Patient) Published: September 28

I was just diagnosed with primary Sjogren’s syndrome in April/May after stumbling on an article and realizing I had multiple symptoms that I could definitively trace back at least 3 years. These include dry mouth (with numerous dental issues), dry eyes, GERD, petechia on lower legs, fatigue and muscle/joint pain and periods of neuropathy. However, I have a history of carpal/cubital tunnel syndromes so it's difficult to say if the arm pain and neuropathy are related to Sjogren’s or carpal/cubital issues.

Comment from: Linda, 55-64 Female (Patient) Published: September 21

I have had Sjogren's syndrome since I was a child but did not get diagnosed until I was 30 years old. I had a lip biopsy and other testing done and was diagnosed. I have had to have first all my teeth capped and when they all fell apart I had to turn around and have all implants. The cost was phenomenal. For my dry eyes I take bilberry leaf daily. This has helped immensely. Also I suck on xylitol candies which actually reduce cavities in people with their teeth. This has been a total life saver. I am now able to go into a store without a water bottle by having the xylitol pills handy. National Nutrition sells them by jars of 240 for around USD 11. They are worth it. At present I have had a terrible episode of ultra-severe pain in my hip and thighs. I could not even walk more than a few steps without being in agony. I have had to go on high dose of prednisone and Plaquenil as well as naproxen. Up until now I have been able to manage but it suddenly one day just became debilitating. I do take many supplements such as krill oil and a host of other things that help joint function and so forth. The prednisone is keeping me from sleeping at night but in order to walk I have to take it. It took about 12 days for it to work. Percocet did not help for the pain it was just that bad. Please make sure to take bilberry for the eyes, krill for the joints and magnesium malate as well which is so important. Also I take 4000 IUs of vitamin D and vitamin K2 to help utilize it. I eat a very healthy diet and have very little if any sugar in it. I hope some of these ideas help someone.

Comment from: Cynthia, 55-64 Female (Patient) Published: June 30

I am 62 years old. For years I had bouts with fatigue. My hair began to fall out and I mentioned this to my primary doctor. She requested blood work and Sjogren’s syndrome showed up. A visit to the rheumatologist confirmed Sjogren’s and rheumatoid arthritis. The rheumatologist referred me to an ophthalmologist and plugs were immediately placed in my eyes to help the dryness. I have tingling in my hands and feet. Oh, I have had injections in my head to stimulate hair growth. I have spent over USD 1500 for cavities and am no way finished yet. My lips used to be so dry and crusty; I thought it was stressed related. I still have a nagging cough. I wake up with tingling in my hands and feet but after walking 5 miles it helps. I survived breast cancer, I consider this another journey to go through.

Comment from: wpatticake, 75 or over Female (Patient) Published: April 28

In 1999 after taking care of my husband that had Alzheimer’s for a year I was diagnosed with Sjogren’s. The rheumatologist said I had the highest levels she ever saw. After crying and leaving there I was determined to find a new doctor, which I did. He said I have seen higher levels and proceeded to treat me. Since then my husband passed away and I have remarried. After two years of marriage my present husband has been diagnosed with Alzheimer’s too! Stressful. Myself, I have dry eyes and mouth, skin lack of saliva, tiredness and extra cavities, pain in joints, etc. I also have some depression as I know what I have already been through. I only take Tylenol now and then. I use cream, spray stuff in my mouth that helps with saliva, and keep a glass of water near me when I eat. If I do not I can choke. I also chew well. I am active and keep busy. It is not easy but I just make it work.

Comment from: LISA, 45-54 Female (Patient) Published: March 05

I have been living with Sjogren’s syndrome far longer than when I was medically diagnosed approximately 5 or 6 years ago. My worst symptoms are fatigue, dry mouth and eyes, cold hands and feet, joint pain and swelling in my lower legs. I'm determined not to allow this disease to control my life; I still work 40 hours a week and attend college on a part time basis, pursuing my AS (Associate of Science) degree. Exercising gives me more energy, as weird as that may sound. I find that if I don't exercise, I ache more. Luckily, my job has an employee lounge which allows me to take naps during my breaks. Lately, I started experiencing slight cheek pain, this tells me I need more rest, so I slow my schedule down and try to get as much rest as possible, again, not giving in to this disease. Sleep can sometimes be a problem, if I wake up one night, my body will follow suit the next night, unless I take something to help me sleep throughout the night; ZzzQuil works wonders! I take hydroxychloroquine twice daily; other than that, Alive women's energy multi vitamins, vitamin D3 and fish oil 1200 mg. Stress is definitely a trigger factor for me in addition to too many sweets, white breads, white rice and fried foods. I've learned to drink my coffee mildly hot, drinking it hot severely dries my tongue out for a day or two. Sometimes, mind over matter helps. Hopefully a cure will be found some day.

Comment from: Schavonne, 45-54 Female (Patient) Published: February 25

When I was first diagnosed with Sjogren’s syndrome I was 40 years old but I'm sure that I had it for over 10 years because I was diagnosed as rheumatoid back then. I had terrible joint pain, dry eyes, dental problems, GERD, hair loss and skin and nail problems. I've had the salivary glands swelling and they still feel achy in cold weather. I use saline nasal spray for dry nose. I've taken so much medicine for this and for that, Plaquenil being one. I don't know if they at all helped, I still felt awful. Spiritual help is good for healing, my mind is in a better place. I use eye drops a lot and I use probiotics and a lot of my skin problems cleared up. I changed my diet, I now eat foods that don't hurt my stomach and that helps my joints. I didn't realize what I could be eating could cause joint pain. Sad about my eyes but I'm not giving up. I found that it's important to balance the bacteria in my body, it helps to feel better.

Comment from: Kathy, 45-54 Female (Patient) Published: February 19

I have Sjogren’s syndrome, bipolar disorder, thyroid disorder, IBS (irritable bowel syndrome), hearing impairment, and sciatic problems. I suffer with severe dry eyes, dry nose, dry mouth, headaches, dental problems, continuous mouth infections, bowel problems, fatigue and joint pain. I am still waiting to see a specialist.

Comment from: Berta, Female (Patient) Published: February 17

I was diagnosed with Sjogren’s syndrome 5 years ago. I have dry mouth and dry eye, and use Refresh Plus. I would like to know if anyone has experienced internal numbness, I was sick last year and had numbness for 4 months, like the dentist shot Novocain, through my whole body. And the doctors couldn't/can't figure it out, and I'm experiencing it again right now as I type this, and I just had the flu. Last year I had pneumonia, and after taking the medicines, the numbness set in, and I couldn't eat or drink for 4 months, the numbness came and went. This is scary.

Comment from: JP, 65-74 Female (Patient) Published: February 09

I was diagnosed with Sjogren's syndrome about 2 weeks ago, even though my rheumatologist told me I've had it for 4 years. I don't remember him telling me at all! I've got the dry mouth and eyes but at least no corneal ulcers. What I'm scared of now is the swelling of my legs, ankles and forearms. I read that there is a rare condition related to Sjogren's that can cause cirrhosis of the liver. I am so terrified my heart beats rapidly all the time. I am going through some really stressful things right now. Maybe that had an effect. I hope for all of us to at least be able to lead some kind of life. I know I should stay positive but right now it's very hard to do.

Comment from: Faith, 55-64 Female (Patient) Published: December 26

I was diagnosed with Sjogren's syndrome about 5 years ago. Like many patients I have dry eyes and mouth. I've had terrible back pain in the past. After receiving a steroid shot I seem to have gone in a mini remission. I am thankful for the remission. Generally I try to eat extremely healthy, I have a NutriBullet which makes it easier to eat my fruits and vegetables. I use coconut oil on my skin especially before I shower. This makes my skin less dry and a lot less itchy. Some days are worse than others. I may try a vegetarian diet if I can find enough protein replacements.

Comment from: Tinak, 55-64 Female (Patient) Published: December 05

I've had Sjogren’s since 2002 with severe dry eyes and dry mouth. I also was diagnosed with Hashimoto’s at the same time and was very sick. I've have punctum plugs, and been on Restasis from the onset due to the severity of eye dryness. However, for the past five years, my ophthalmologist sent me to get serum tears. That's where they draw vials of your own blood, spin the serum, and make tears. It has been a boon. I had to wear goggles due to the dryness, and now I don’t. Although I still have to put OTC drops in, as well as night gel and Restasis, the serum tears are wonderful. I go every 3 to 4 months for blood draws. Evoxac has worked for my dry mouth, but lately I've had a serious flare up with increased dryness of the mouth and eyes as well as fatigue, lots of it. I hope that my symptoms will subside without further damage, but I don’t know. I'm also seeing doctors for chronic cough with phlegm, an episode of laryngospasms which was terrifying, and severe silent reflux. Sjogren’s has reared its ugly head, making life miserable. We all must take one day at a time and trust things will get better!

Comment from: Mara, 65-74 Female (Patient) Published: October 07

I am now 75 but in 2008 I had viral pneumonia and was in the hospital for four days. I was active and enjoyed life until then. After returning home I was tired all of the time and had no energy. There were times that I would pass out or get dizzy and light headed when standing for too long. If I tried to do house work or something I would get short of breath and light headed and would have to sit down. My eyes do get dry to where I use Systane in them. My right salivary gland did swell to where I looked like I had the mumps there. My doctor pushed on it to show me that it would secrete, and my left one does not. I do not have dry mouth but am thirsty a lot. I was sent to a rheumatologist because my doctor thought I may have SLE, lupus. The rheumatologist didn't thinks so because I didn't have enough markers. This after all kinds of tests including heart. I have been chronically fatigued since the pneumonia and in April this year (2014) I developed skin lesions on my chest and back that went to my lower back and then my arms and legs, and they all itched. I was then sent to a dermatologist that did a battery of tests and thought I may have had an allergy to one of my newly prescribed medicines so she had me go off that and gave me some ointment to use on my spots and said to use Vaseline all over for my dry skin. After that she had some more blood work done and a biopsy of my skin. She told me after my labs came back that I had Sjogren's syndrome and said that she was going to start me on Plaquenil but to check with my eye doctor first. At least if this is indeed what the problem is I now know why I'm chronically fatigued.

Comment from: Debsmith, 35-44 Female (Patient) Published: September 03

I was diagnosed with Sjogren’s syndrome through blood tests a year ago at age 38. I had slightly irritated dry eyes but my biggest problems were the unfounded fatigue, flu-like feeling and achy joints. I am now on Plaquenil, taking many supplements and following a strict Paleo diet. The diet has made the biggest positive changes for me.

Comment from: Sandie, 45-54 Female (Patient) Published: May 09

I was just diagnosed with Sjogren’s officially today. All this joint pain and chronic fatigue for years, I felt like dying, didn"t care. Rheumatologist dismissed me as fibromyalgia only. Well, maybe if he at least took blood work the first time! I mean I’ve only been in pain for... twenty years! Recently I started getting the dry eyes, dry mouth, depression, passing out from pure exhaustion, but guess what? I now have a name for what I have and I am happy and relieved because I am going to fight for my long, bright future with my wonderful husband! I take Zoloft, Klonopin as needed, and Daypro Alta, no narcotics, no prednisone! I also use some oral and vaginal lubricants.

Comment from: Carmen R, 45-54 Female (Patient) Published: May 07

I was diagnosed with Sjogren’s syndrome in April of 2010 when one morning I woke up with my hands swollen and in a lot of pain. My rheumatologist immediately put me on medications but for some reason I always continually have inflammation and pain in different parts of my joints. I also continue to get many infections that are hard to treat. Four years later I still wake up with inflammation either in my hands or my feet and still constantly suffer from pain all over my joints.

Comment from: Gayle, 55-64 Female (Patient) Published: March 27

I feel so bad for everyone suffering from Sjogren’s as I too have suffered for 11 years. Every day is such a struggle and you can never plan things because you don"t know if you will have a good or bad day. I have the related autoimmune problem that goes with it, of Hashimoto’s thyroid and vasculitis on the legs. Just want to let you know of two things that helped ease a lot of pain. First I had all of my tear ducts cauterized. That keeps the tears you do make stay in your eyes longer. Then about 8 months ago my eye doctor helped my badly scratched eyes that hurt terribly with every blink. I now wear a no prescription contact along with my glasses. It protects my eye like a Band-Aid and doesn"t hurt as badly. I hope this helps someone else too.

Comment from: LynnJ, 65-74 Female (Patient) Published: March 26

In February 2008 I was diagnosed by my first doctor with Lupus/rheumatoid arthritis. After this doctor had me on prednisone for 9 months I changed doctors. He took me off prednisone and took all the necessary blood test and made the diagnosis of a very mild form of lupus. I did not have another flare up until January 2013. I went to another doctor and he diagnosed me with Sjogren"s syndrome and he did not prescribe medication but explained to me how to manage it. I feel better knowing that I can manage this disease without prescription drugs. I am aware that the disease could worsen as I get older but I exercise regularly, eat healthy and get plenty of sleep, I also use Biotene for dry mouth daily. But most importantly I"m not going to the doctor every month.

Comment from: FelicityA, 65-74 Female (Patient) Published: February 04

I've been treated for allergies by many doctors for several years with little or no lasting results. But, it was my frustration and curiosity to get to the root of my problems that led me to literature about Sjogren's syndrome. I've suffered for over 30 years with this disease, which has made my life a living hell. Not only has it disrupted my life socially because of dry ashy skin to my legs and hands, dry mouth has made it impossible to sleep at nights and I have the constant awareness of bad breath. Also, I have intense pain in my lower back and dry gritty eyes that sometimes are red and itchy during allergy season. Even though the disease is not 100% cured, I can better manage my condition with the knowledge I have been give and hope that someday, someone can find a cure for this dreadful disease.

Comment from: Josie, 45-54 Female (Patient) Published: January 27

I just had a blood test taken to detect if I have Sjogren's syndrome. Since last year May I am struggling with my eyesight. The bright-white light disturbs my eyes. I've seen 4 different ophthalmologists, 2 optometrists, without good results. My mouth is very dry, I drink a lot of water/tea. My eyesight is what I am concerned about. I want to explore all the possibilities to have this fixed, somehow. There was no one in my family with this disease.

Comment from: GarMar, 45-54 Female (Patient) Published: January 14

I was diagnosed with Sjogren’s syndrome about 1 month ago. I had a lot of symptoms, but just ignored them because I tried to treat myself. I thought I had diabetes because I was thirsty and my mouth dry all of the time. I used to cycle and gym a lot for exercise, now I am just to tired and get short of breath so quickly. Sometimes I cannot swallow my food down and start gagging as the food gets stuck in my esophagus - it is very painful. My lips are dry and the corner of my mouth cracks and bleeds. I cannot eat certain vinegary or acidic foods, even gum or toothpaste are too strong and burn my tongue. I had bad teeth and my dentist kept on saying I should brush more even though I am very meticulous with my water flosser, normal floss and electric toothbrush - I told him now I was diagnosed (he is still not convinced Sjogren's do have an effect). I teach students and often my throat gets very scratchy and I am so hoarse, the students battle to hear me. I also battle with low grade fever and hot flushes all of the time. I often get sinusitis, and have had tracheitis, sinusitis, bronchitis and conjunctivitis for 11 days now (still on antibiotics). I've been placed on plasmoquine 1 month ago, cannot feel any difference yet. I guess the fatigue is the worst as I used to be so energetic and alive. I wonder what will help with this, if I should just drink lots of multivitamins.

Comment from: Kathy, 55-64 Male (Patient) Published: November 14

I was diagnosed with Sjogren's disease over ten years ago. It started with unbearable pain in the right top muscle in my back. The pain was so bad, I could barely breathe. The pain lasted 2 days. To this day, I feel as though the muscle is going to spasm at any time. I have to be careful not to stay in one position for any length of time, as the muscles in my body will be painful. I can't take pain medications because of other medicines I take. I use Restasis for my eyes, having to use eye drops quite often during the day, and at night I have to use ointment when I go to sleep. (Restasis is wonderful.) I chew gum to keep my mouth from drying out, and I use lip balm for my dry lips. Lately I feel more pain, and I don't know why. I was going to a doctor, but he moved, so now I have to find someone new. I hope that someday soon a cure is found for it.

Comment from: wisegirls3, 55-64 Female (Patient) Published: October 24

I was diagnosed with Sjogren's syndrome when I was 19. I am now 55. I have a great rheumatologist who sees me every eight weeks. I take hydroxychloroquine twice a day, use eye drops a lot, and drink water constantly. I had to have my left parotid gland removed when I was 20. I was diagnosed with a tumor in my sinus cavity in my 42nd year. My doctor had a biopsy done and I was diagnosed with a rare form of cancer called amyloidosis. They took a bone marrow sample and did a total skeletal scan and did not find it anywhere else in my body. The tumor is still there because it envelops the bone beneath my eye. They cleaned out everything in my left sinus cavity to allow for better airflow. Now I am struggling with my legs and feet swelling, keeping my vitamins B12 and D up and my liver counts down. At times I am exhausted but for the most part I live a fairly normal life.

Comment from: Sarah, 65-74 Female (Patient) Published: October 22

I was diagnosed with SLE (systemic lupus erythematosus) about two and a half years ago. Recent lab tests also showed Sjogren's syndrome. I've had eye issues for two years, with the vitreous gel bursting and multiple floaters in both eyes. My vision started to diminish and my left eye vision was blurry. I saw one retina specialist and he told me I may eventually need surgery as a "membrane" was growing over the retina. I went for a second opinion, and this eye doctor prescribed Restasis (they have a generic in Canada), and preservative free OTC eye drops. She said "see you in 4 months. Having many autoimmune diseases is a tough way to live; especially if you're 70 years old. Every day is a struggle!

Comment from: Jen, 65-74 Female (Patient) Published: October 18

I was diagnosed with Sjogren’s syndrome in 2009 after severe dry eyes. I take Restasis 4 times a day as well as many other over-the-counter drops. I have a dry throat and trouble swallowing. I am very constipated and use milk of magnesia daily. I only go to an internist. I refuse to take prednisone. My rheumatoid factor is 192 and climbing yearly. So far I only have trigger finger. I have lost weight since I was diagnosed. I exercise daily. I refuse to give in to this. I worry about my sight since my eyes are inflamed weekly.

Comment from: Casino99, 65-74 Female (Caregiver) Published: April 25

I'm 67, and I got dry mouth 5 years ago, which got worse over 1 and a half year. Since 6 months ago I get fatigue and in bed many times I stay. My joints hurt badly, I can hardly walk. I have a hard time sleeping, so I sleep in the day time. I will go for a diagnosis next month, I have googled this myself and told my doctor that I have Sjogren’s syndrome.

Comment from: Sara, 25-34 Female (Patient) Published: September 25

I have been diagnosed with Sjogren’s syndrome and lupus 7 years ago. I was suffering with chronic joint pain. It was difficult to do the normal daily activities. But now thankfully I got a good natural medicine. By now all my body inflammation had gone. The joint pain had reduced dramatically. That was because of black seed oil. It is helpful. I have been taking it 30 minutes before breakfast with orange juice. It doesn't heal you overnight, it needs at least 4 months.

Comment from: acv, 45-54 Female (Patient) Published: August 23

I was diagnosed with Sjogren’s syndrome after having allergy to sun. I also have nerve problems and wonder if anyone has nerve disorders related to Sjogren’s.

Comment from: Poppy. How, 55-64 Female (Patient) Published: July 17

I have Sjogren’s syndrome. My throat muscles tighten especially at night, and trying to sleep is impossible. I don’t know how I can relieve it. I tried trigger point massage, it works short term.

Comment from: Lindyloo, 55-64 Female (Patient) Published: May 07

The major complication I have with my Sjogren’s syndrome is that the adhesive I try to use to hold my top denture in place dries out and my denture is so loose it falls out all the time.

Comment from: Siselgirl, 45-54 Female (Caregiver) Published: July 05

My husband was diagnosed with primary Sjogren’s syndrome testing positive for the SSB antigen, and negative for rheumatoid arthritis (RA) and lupus. He had extremely dry, red eyes losing his sight at times. He would crawl across the floor to grab the wall stating that it felt like glass was in his joints. I put him on SIsel products (specifically the Triangle of Life); it helps diminish his symptoms greatly. His eyes were being checked every 2 weeks with the threat of losing his eye sight. I put him on the SupraOmega Plus product. Ten days later the eye doctor told us to keep doing whatever we were doing because it was working. My husband reacted very badly to medications from the RA doctor. The doctor said it was the worst reaction he had ever seen. So, good supplements and diet seem to be his only defense against this horrible disease.

Comment from: Cherie, 55-64 Female (Patient) Published: February 15

I had suffered with dry mouth and red eye so very often but, it was nothing to be worried about at the time. I was going through a lot of physical problems. This went on for years! Finally I found a doctor who had it properly diagnosed as Sjogren’s syndrome, an autoimmune disease that affects your eyes, throat and mouth. Then, after a couple of years it progressed. My eyes were stuck together every morning and I had lost three teeth! This happens too often, not to be on a doctor’s radar!

Comment from: xaviersio, 65-74 Male (Patient) Published: May 17

After getting no help for my Sjogren’s syndrome from conventional medicine, I looked into alternatives. I have experienced near miraculous improvement in saliva production by taking a parotid supplement. Both Standard Process Parotid PMG and Biotics Research Cytozyme Parotid-TS have worked equally well for me. Hope this helps.

Comment from: Tamara, 45-54 Female (Patient) Published: May 28

I have been diagnosed with UCTD (undifferentiated connective tissue disease)/lupus/Sjogren’s syndrome. Just recently I was told it is Sjogren’s. I have so many things going on but I will say I use products for dry mouth, spray and Xylitol for nasal, Restasis and other medicines. It is very overwhelming. I hope that we all get more knowledge and relief for what we are going through.

Comment from: breakaleg06, 45-54 Female (Patient) Published: January 26

I was diagnosed with Sjogren's syndrome 2 years ago. I have been suffering from dry mouth horribly since I've gotten a cold a couple of weeks ago. I tried taking Benadryl to help clear up my nasal passage. I couldn't stand the way my mouth was overly dry.

Comment from: MG, 35-44 Female (Patient) Published: October 02

I was just diagnosed with Sjogren's syndrome and lupus. I am concerned because I live overseas and I'm not sure If I am getting enough information or if I am feeling the way I'm supposed to. I feel that I have no one to ask. I feel extremely lethargic most of the time. I started taking cortisone, a small dose, and I feel better. I have a constant swollen sensation in the glands in front of my ears. This is very bothersome.

Comment from: Tybee, 75 or over Female (Patient) Published: July 22

I have not been diagnosed with Sjogren’s syndrome, but I have been through all the blood work for rheumatoid arthritis (RA) and I was told that everything was okay, nothing to be concerned about. But I do know that my RA test was 28 and the high range for that is 14. I've experienced problems with dry mouth and dry eye for years now, along with depression. I drink water and tea all day and take to bedside. My mouth, tongue and throat are so dry that I am awakened at night and my eyes are closed when I wake up in the morning - I open them with my fingers.

Comment from: FlaGurl, 45-54 Female (Patient) Published: June 04

I was recently diagnosed with Sjogren"s syndrome and my feet are very itchy and peeling like crazy. I am also sun sensitive which has only gotten worse since I"m on generic Plaquenil, if I get too much sun I"ll be sick for 2-3 days as if I have a really bad burn although I really am not burnt, just blotchy.

Comment from: susan, 55-64 Female (Patient) Published: May 21

I am 55 years old I had Sjogren’s syndrome for 2 years now. I feel that it is getting worse. I started with the dry mouth and dry eyes but now my elbows, hips, knees, and fingers hurt. My medications do not work all the time. At night I get up several times so I can drink some water because my mouth so dry. I am also getting very depressed.

Comment from: Mspink, 45-54 Female (Patient) Published: April 22

I was diagnosed with Sjogren’s disease and it is secondary to my rheumatoid arthritis. My symptoms are dry eyes, dry mouth, and dry nose. I am on methotrexate, Plaquenil and gabapentin and it seems to be working quite well.

Comment from: smithjoy, 55-64 Female (Patient) Published: March 14

I also have systemic lupus in addition to Sjogren’s syndrome. I wonder if Sjogren’s can cause dry feet as well as constant itching of the bottom of the feet as well as around the toe nails. The top layer of skin on my feet has also peeled.

Comment from: Gaynor, 75 or over Female (Patient) Published: February 26

I have dry eyes and mouth due to Sjogren’s syndrome. I use Systane eye drops at night only and Biotene at night as well. If I am talking a lot on the phone I get a dry throat, but I am ok otherwise.

Comment from: angelaamy, 65-74 Female (Patient) Published: January 03

I had swollen glands and diagnosed as a mild case of mumps as a child, as a teenager and as an adult. I was finally correctly diagnosed with Sjogren’s syndrome, I don't know if I ever had mumps as a kid or was exposed. I also have fibromyalgia, arthritis and low thyroid. Nothing is fatal but if it’s a 'learn to live with it' disease I probably have it (sarcasm, my stress reliever). I use OTC moisturizing eye drops and drink water all the time. I am on pain medications. I just wish could find a way to reduce the 'chipmunk cheeks', hate having fat face!

Comment from: love2sing55, 35-44 Female (Patient) Published: October 18

I just got diagnosed with Sjogren's a couple of weeks ago. I was having extreme fatigue, muscle tightness, spasms and shooting nerve pain. I also have notice eyes and mouth more dry. Also TMJ and arthritis issues. I’m on new medications, gabapentin and hydroxychloroquine (generic for plaquenil). This seems to be helping.

Comment from: sblogg, 45-54 Female (Patient) Published: April 17

I probably had symptoms of Sjogren’s for about seven years, but only realized what I had a year ago when I also started to get rheumatoid arthritis. I went through an emotional whirlwind last year, mostly due to pain and disability with the RA. It has definitely affected my personality. I can get very down and have to fight that all the time. It is important to accept it and to take it easy. My life has been very stressful with a demanding job and living in a developing country. I am learning to make my life less stressful but have a long way to go. The most difficult part of the disease is that it has impacted my relationship. Sex is painful, but my husband has been very supportive. I take 15 mg methotrexate every six days, and it helps, but I can still have bad days. Now, though, most are good. I swim every day, my physiotherapist has fixed my shoulder, and I have a great diet free of sugar and alcohol. I try to stay positive. I am getting on top of it.

Comment from: Marleyteach, 55-64 Female (Patient) Published: March 26

I have had type 1 diabetes for 37 years and was diagnosed with Sjogren's syndrome a year ago. I say diagnosed, because at times, over the last 15 years, I’ve had some of the symptoms. My ophthalmologist ran blood tests after my symptoms weren't getting better and my corneas were flaking. She gave me clear contacts which do help with the pain from eyelid abrasion. I found a great rheumatologist who listens to me, cares about how I am feeling, and discusses the disease with me. It's important to have really great medical help. I am now taking pilocarpine, Plaquenil, Restasis, and methotrexate. These are helping, but not as perfectly as I'd like. I have good days and bad days, and flare-ups and times of remission. Things that help me are proper sleep, good diet, and trying to avoid stress. I have an extremely stressful job, but I try to have a good attitude, slow down, and smile a lot, which controls my stress. Maybe I’ve learned from having diabetes that how I feel physically is controlled by my mental well-being. If I remember this disease is not going to control my life, it won't. It may be a speed bump in the path my life takes, but it’s not going to control the quality of my life as I travel through it. My life is a gift, and what I make of it is a choice

Comment from: Karen, 55-64 Female (Patient) Published: March 22

I was diagnosed with Sjogren's syndrome about 18 months ago. I believe I've had it for many years. Evoxac helps, but I still take a large glass of water to bed each night and use eye drops several times daily. My concern now is severe constipation, which I've been dealing with for a long time. I eat 20-40 grams of fiber and drink eight glasses of water daily, but it doesn't seem to help. Does anyone else have this problem? What do you suggest?

Comment from: Ally, 55-64 Female (Patient) Published: September 02

I was diagnosed with Sjogren's syndrome approximately five years ago, secondary to systemic lupus. After talking to my doctor, I discovered that I probably had it most of my life. I remember when I was about 10 years old, I loved to go ice skating. So many times, I would tell my mother that "my eyes feel cold." My mother just downplayed the problem because it sounded ridiculous. The doctor thinks I had a mild case back then, just waiting for the right trigger. Well, in 1993, I was diagnosed with non-Hodgkin’s lymphoma, stage 4. They did not give me a great chance, but I am here! I asked my doctor if the cancer chemotherapy could have triggered the lupus and its "friends.” He said no, but he thinks the lupus triggered the cancer. My eyes hurt a great deal of the time, my tongue is sore, my body has a feeling of dryness all the time, my lips are very dry, and I have "pins-and-needles" feelings all over my body. I am diligent about my dental care and we (the dentist and I) seem to be keeping on top of it. I use Biotene toothpaste and mouthwash. I do not think it helps all that much, but it is worth a little relief. I never thought at this age I would have problems with cavities on the lower jaws. Luckily, my Sjogren's syndrome comes and goes since it is only one on my list of maladies. I hope I can help other people with the same problem.

Comment from: Delayne, 75 or over Female (Patient) Published: August 21

I have had Sjogren’s syndrome for 21 years and have suffered the minor and major aspects including cancer in my right parotid followed with radiation, but I got cancer again. The left-side parotid was removed in 1981. It is a very difficult disease to handle. I used to belong to a support group in Phoenix that was helpful. However, I’ve moved to North Dakota and haven’t been able to find one I like.

Comment from: 55-64 Female (Patient) Published: August 15

I can't believe I have it. I'm so fatigued I have trouble concentrating. I get very dizzy. I am so over heated at 70F that the sweat runs from me. I never used to sweat. I have trouble sleeping because I ache all over and because I'm so hot. The bed feels like it is on fire where I have been laying. My jaw hurts on the left side. It is hard to bring my back teeth together. One leg aches continually. I ache from head to toe. My mouth isn't really dry and my eyes aren't dry. It seems my throat is however. I get so desperate for a drink of water sometimes, I'm almost frantic. I get a prickly feeling in my chest and have to guzzle water or some juice. Please tell me if the doctor is on the right track.

Published: July 28

I was diagnosed with Sjogren's syndrome about 13 years ago through having an eye test. At that time my main symptoms were dry eyes and mouth which, although causing major discomfort and loss of confidence were 'manageable'. I did not use medication instead I opted for good dental care, chewing gum, plenty of water and a hot flannel held over my eyes to 'ease' the dryness. I find bright sunlight a huge problem. I would just like to alert others to other symptoms which can follow from this diagnosis. 5 years ago I had a 'lump' in the roof of my mouth - it was Non-Hodgkins Lymphoma which was treat (very successfully) with radiotherapy (not comfortable but effective). I have just been diagnosed with Vasculitis which is currently being treated with steroids. Let's hope they do the trick. It is a debilitating disease which is difficult to talk about but tell your friends and family exactly how it makes you feel and they will understand that sometimes you simply can't speak to them and won't want to show them your eyes. Dark glassed are a lifesaver!

Published: July 21

I was diagnosed with Sjogren’s syndrome due to dry mouth. I have some dry eyes, but it was the dry mouth that was the most uncomfortable. I have been taking Pilocarpine, which has made me feel almost normal until a couple of months ago. All of a sudden, my mouth went totally dry, my lips became swollen, cracked and bleeding. This is extremely difficult to deal with. I have seen two doctors and am waiting to see the rheumatologist. My sense of taste is distorted. I cannot tolerate any spice as it causes a strong burning sensation in my mouth. My mouth is very dry and has a burn in it almost all the time. The dryness is affecting my speech and the severely chapped lips are sore and embarrassing when they begin to bleed without any notice.

Published: July 01

I was diagnosed three years ago with Sjogren's syndrome by a rheumatologist. I have never been a person who took medication until now. My doctor put me on Plaquenil to maintain inflammation, Evoxac three times a day for dry mouth, and Restasis eye drops twice a day. The Restasis takes at least 6 weeks until you still start feeling the relief from dry eyes. I also had tear duct plugs put in. I must say, my eyes are no longer red with pain, and my mouth has some relief. For once, I feel like a new person.

Comment from: Joan, 75 or over Female (Patient) Published: March 13

I have a rash from Sjogren’s syndrome, which is extremely itchy.

Comment from: aw042634, 75 or over Female (Patient) Published: April 13

My eye doctor does serum eye drops for me. They are very helpful for the dry eyes from Sjogren’s syndrome.

Comment from: Sobeya F, 55-64 Female (Patient) Published: January 15

I have been diagnosed with Sjogren's syndrome since about 7 months. But, I have had this for some time I know. I get severe itching all over my body especially my arms. This itch is spreading all over my body.

Comment from: af36, 45-54 Female (Patient) Published: October 22

I have been diagnosed with Sjogren’s syndrome and on Plaquenil for about 6 weeks. I have developed anxiety attacks and need to know what is a good medication with mild side effects to treat the anxiety that will not cause worsen my condition (cause dry mouth). I am currently on Xanax and don't want to keep taking it.

Comment from: anu, Female (Caregiver) Published: April 22

Five years ago I found myself facing this Sjogren’s disease. It was very difficult, if I didn"t have the will power to live I could not have been cured so today I’m sensitive to other people with this problem.

Comment from: Lyla, 65-74 Female (Patient) Published: March 26

I wonder if anyone has had problem with their hearing that may be caused by Sjogren’s syndrome. I lost most of my hearing and with no hope for a remedy. It has changed my life to such a degree I hardly have any social life at all and I can"t handle any business I have over the phone.

Comment from: SS Info, 45-54 Female (Patient) Published: February 26

I was originally diagnosed with primary Sjogren"s syndrome by a rheumatologist but went on to get another 2 autoimmune diseases. I presume this means I now have secondary Sjogren"s.

Comment from: Dale, 55-64 Male (Patient) Published: December 09

I have advanced metastasized prostate cancer, which has gone outside the prostate, I also have CIDP (chronic inflammatory demyelinating polyneuropathy) and Sjogren’s, and I am in pain all day and night long, my feet and legs feel like they are on fire, I am wondering if the prostate cancer has spread into the lymph nodes since they are outside the prostate.

Comment from: Charlie, 35-44 Female (Patient) Published: August 20

I was diagnosed with Sjogren's 13 years ago after having strange symptoms. I had swollen eye lids, joint pain in one wrist and a rash on my back. At first just managed dry eyes. a

Comment from: Pinky, 55-64 (Patient) Published: August 08

I too was diagnosed with Sjögren’s after 25 years being told that I had fibromyalgia, which I do not have. So many Doctors so many medical bills and so much pain. I was wondering if anybody has ear tube problems with Sjögren’s. I had my ear drained and now 30 days later the pressure came back I do not have any ear pain cold sinus infection or anything that could cause this problem. I was wondering if Sjögren’s has anything to do with this I do have a dry nose but not bad slightly dry. My Doctor tells me that my Sjögren’s got nothing to do with my ear problem but I read articles that Sjögren’s can affect your ear/ears. The ENT Doctor wants to put a tube in my ear. I need to find an ENT Doctor that is familiar with Sjögren’s.

Comment from: Kaye J Qld Aust, 55-64 Female (Patient) Published: June 13

I asked my Specalist if a good naturopath could help me and his response was yes try it they are usually good with this type of thing. I had to tell him everything the specialist had me on. He then treated me and while I am on his tablets which to my understanding are fine minerals I am pretty much pain free. And listening to my body is the most helpful thing rest when your body tells you too. I have a high stress job which I have noticed most of the people on this site seem to have mentioned too. The naturopath has me on Duo Celloids one is PCIP (Potassium Chloride 65mg,Iron Phosphate 15mg and Sodium Phosphate-dibasic anhydrous 260mg, and Sodium sulfate-anhydrous 195mg) Two different tablets take one of each three times a day with meals . I am also on Phlaquinil twice daily . Took myself off Prednisone before the specialist told me too. Felt it wasn't doing anything anymore besides making me put on weight. Also 1 Krill oil in the morn 1000mg and 2000mg Fish Oil in the afternoon. Was better on 6000mg of fish oil but my stomach couldn't handle it, While I was on 6000mg I had no joint pain. Hope this helps someone else.

Comment from: [email protected], 55-64 Female (Patient) Published: June 07

I have been tested for this. The blood test came back with SSA/RoAb at 2 and SSB/La AB is 3. I am not sure what the numbers should be, I have Epstein-barre, neuropathy, Raynaud's, dry mouth, and eyes.

Comment from: DG, 55-64 Female (Patient) Published: May 13

I had seven knees surgeries, which included bilateral knee replacements. The surgeon couldn't figure out why I had debilitating pain and swelling of tendons, etc. around knees. Finally, I was diagnosed with Sjogren's.

Comment from: perfecta, 55-64 Female (Patient) Published: May 02

I'm wondering if dry hair is caused by Sjogren’s. I have used every possible product to no avail. I went to a dermatologist and had a biopsy of my hair. The doctor said that it was not internal, but environmental. I have changed hair products and stopped highlighting my hair for a year now and there are still no changes. My hair is so dry it breaks off at the ends. The roots are healthy. We keep cutting the ends and they continue to grow brittle and dry.

Comment from: Rae, 45-54 Female (Patient) Published: May 02

It all started about five years ago with fatigue and painful joints. I was diagnosed with RA ANA and was positive for fibromyalgia. I was put on Neurontin, Mobic and prednisone. The prednisone gave me a cataract and I needed surgery for that. They put me on methotrexate and I am now testing negative for RA. I am also on Plaquenil for autoimmune Disease, (Sjogren's syndrome). I battle with thrush and urinary infections (bacterial), and use ciprofloxacin, which is an antibiotic that I find can cause many problems like joint/muscle/tendon pain and fatigue – just what I need. I also battle with depression. Everyone just needs to have a good support system.

Comment from: karen, 45-54 Female (Patient) Published: April 16

I have been healthy and active all my life. At age 40, I started having panic attacks and obsessive thoughts of worry. I always thought it was physical a problem with my brain. After 10 years of doctors and mental health doctors, blood tests came back positive and negative for Sjogren’s. Retesting still showed the same result for. I am 54 years old now and crippled. I’d like to know if anyone else has had problems with whole-body vibration.

Comment from: Debi, 35-44 Female (Patient) Published: April 05

I was diagnosed with Sjogren's syndrome in 2008 and we are still figuring out what triggered it. My mother has non-Hodgkin lymphoma and she is at Stage 4, which is the last stage. The doctors are keeping an eye on me for lymphoma. Some of my days are rough having Sjogren's, but I try to make the best of it.

Comment from: mrshahc, 45-54 Female (Patient) Published: March 26

I was diagnosed with Sjogren’s and hypothyroidism after a hepatitis C treatment in 2004. The past four years, the Sjogren’s has taken over my active life. I was into daily cardio and strength training, along with bicycling and Pilates. Three years ago, my shoulder, elbows, fingers and knees started to hurt, especially when I moved up and down. I feel pain with every movement. It seems like Sjogren’s has taken over my life.

Comment from: TKamp, 55-64 Female (Patient) Published: March 13

I was diagnosed about 5 months ago. I had a lot of symptoms, but just ignored them because they were so strange that I thought my doctor would think I was crazy. I used to walk a lot for exercise and I would be unable to swallow for lack of saliva and it would make me panic. My lips are always chapped and flaky and the corner of my mouth cracks. Also I cannot eat certain vinegary or acidic foods like salsa or salad dressing because they cause my tongue to burn. I am always stiff with joint pain and have severe tingling in my legs with stabbing pains in my feet. I had to have 5 teeth bonded at the gum line because my gums receded. I have been using Biotene mouthwash,toothpaste, mouth spray but they don't really help. My doctor said to suck on sugarless lemon drops,but then I develop a thick brown goo on my tongue and that is not very nice to look at when talking to someone.

Comment from: 45-54 Female (Patient) Published: September 02

I was diagnosed with psoriatic arthritis about six years ago. The itchy, burning eyes and dry, sticky mouth started about 18 months ago and, having been diagnosed with Sjogren’s syndrome, I assumed it was just about the eyes and mouth and was completely unprepared for the burning skin and sweating, the difficulty swallowing and the general feeling of being unwell and tired all the time. I have eye drops six times a day and a mouth spray but, along with the NSAIDS for the arthritis, I now have to have Omeprazole for chronic heartburn and can’t bear any form of spicy food. My sense of smell has all but gone, and I swear my memory has suffered as I sometimes struggle to finish a sentence and find it hard to concentrate for any amount of time. This has got to be the worst thing I've ever had and it's so depressing to know that there's no cure, only palliative care.

Comment from: Tess, 45-54 Female (Patient) Published: August 21

I was diagnosed with Sjogren's about seven years ago. I know that this sounds kind of weird, but after about 30 minutes inside a store, I turn bright red on my face and arms, and I become very hot. Eventually, I have to leave.

Published: July 30

I have had sjogren’s syndrome for the past 20 years and have all the "things" that go along with the disease. My teeth are very bad and this is after 17 root canals and porcelain replacements. Now I am told that I need to have implants at an unbelievable cost or have the teeth pulled. I saw a dentist yesterday who says that all the teeth should be pulled because the amount of metal in my mouth is the cause of some of the problems, such as mercury.

Published: July 22

I'm a few days shy of a year with this diagnosis. It’s hard to believe. I started out with the severe dry eyes. I was seeing an eye doctor for seven to eight months. I finally went to my primary doctor and asked if I was "depressed" because I was so run down all the time. I had a 1-year-old and 4-year-old. Who wouldn't be run down?! It wasn't until I mentioned my ongoing eye problem that my doctor mentioned Sjogren’s syndrome to me and sent me for lab work. It was confirmed the following day. I look back over the past eight or so years and there were things that all come together now. Dry lips to the point that I could no longer wear lipstick, etc. I feel on most days that I am a 33-year-old female trapped inside an elderly body! Less stress works best for me. I gave up a very stressful ICU nurse position for a school nurse job. Plaquenil has been a life saver. I feel 10 times better this July compared to last year.

Published: July 17

My little sister (25) was diagnosed about 3 years ago with some auto immune disease but they can't say it is Sjögren’ s because she doesn't have the positive test for Lupus. I have had dry eyes since 2003 when I had an ocular ulcer, but it didn't get severe till this year. When I went for my annual eye exam I complained about it and he said that my eyes were severely dry and because my sister had it that I should get tested also. I was diagnosed July 11th with Sjögren’s, they had no problem confirming it. I wake up most mornings like I spent the night before screaming or I feel like I have strep. I didn't want to be positive. Reading others comments actually scares me. I have started getting dull headaches in the last week or two and nothing seems to make them better. It worries me that it has gotten worse so quickly. I have also noticed the fatigue, sometimes it just seems like I can't deal with things and I have to rest right away. But at least it might help my sister get her answers. I am only 28 and I don't want to be "elderly" before my 40th birthday. It is funny that something that seems so minor: dry eyes, dry mouth can make the quality of life so difficult.

Published: July 10

I just recently discovered I have Sjogren's syndrome. Three years ago, I lost my smell for no apparent reason. I went to several specialists and could not get an answer. Two years ago, I developed a high fever and was in the hospital for more than 30 days. The doctors did not know why I had this fever. Just as mysteriously as the fever came, it disappeared. I had one doctor who was seeing me because my doctor was not on call and he ran a series of tests and concluded that I had some form of an autoimmune disease. I did not pursue the matter anymore because I had accumulated a number of medical bills. However, in the last three months, I have been extremely tired. I have a new doctor who referred me to a rheumatologist, and he took a series of tests, one of which came back positive for Sjogren’s syndrome.

Published: July 09

I was diagnosed with Sjogren’s syndrome about two, almost three years ago, and I just recently have started having a lot of problems with my symptoms. I am extremely fatigued and weak. My eyes always look like I've been crying because they get so red and dry. I try to exercise and stay active, to help with the arthritis pain, but I am just 36 years old, and it's hard not to get down because I used to be so active and athletic. I have a family history of autoimmune problems working against me too.

Published: July 02

My mom has Sjögren’s Syndrome (I believe it is secondary since she also has RA). She suffers unbelievably from dry eyes, pain, dry eyes, and sensitivity to light. She is 77 years old. Restasis is one medication she recently began taking but it doesn't seem to be helping. Fresno, California