Patient Comments: Sjögren's Syndrome - Symptoms and Signs


What symptoms and signs did you experience with Sjögren's syndrome? Submit Your Comment

Comment from: Mom 5150, 45-54 Female (Patient) Published: November 14

I am 47 years old. I was diagnosed with rheumatism at age 15. I've had widespread pain ever since. I was diagnosed with fibromyalgia approximately 17 years ago. I think Sjogren’s syndrome has been my issue all along. Diagnosed with Sjogren’s approximately 10 years ago. Now I'm having huge issues, like my hearing is blocked, I can’t taste anything, severe tachycardia episodes with 220 plus BPM, blood in urine, severe memory issues, fatigue, pain, etc. No doctor to understand. I'm in trouble.

Comment from: Chris, 55-64 Female (Patient) Published: November 01

My symptoms of Sjogren’s syndrome started with my parotid swelling, then dry mouth, no saliva on one side of my mouth, and dry eyes.

Comment from: Kch1991, 45-54 Female (Patient) Published: October 23

I am a 52 year old female. I was diagnosed with Sjogren’s syndrome 4 months ago. My symptoms are dry eyes but not bad, have lots of saliva but my lips hurt and seem dry. I also have had mouth sores but they have gone away. Slight burning tongue. The biggest complaint has been gritty feeling on teeth and sensitive teeth and gums. I also have dry skin and after sitting a while ache when I get up but generally there is no pain. I wonder if there’s anyone else with gritty teeth.

Comment from: KHJohnson, 35-44 Female (Patient) Published: September 20

I was diagnosed with Sjogren’s syndrome in 2015. My worst symptom is debilitating fatigue. No one understands what it is like to sleep 8 hours but still feel extremely exhausted. It's like I have to plan ahead to get anything done and I can't do too much in a day without feeling the aftermath of joint aches all over. I am able to exercise, and, believe it or not, that is what gives me the most energy but I only jog about four times a week because that is all my body will allow.

Comment from: PainInMichigan, 55-64 Female (Patient) Published: September 05

I have visual disturbances from severe dry eye caused by my Sjogren’s syndrome, I am unable to keep my eyes hydrated. I have severe parotid swelling, mumps, severe nerve pain in face, neck, ears and eyes, acid reflux, lichen sclerosus, nasal sores, mouth sores, muscle and joint pain, spastic bowel, severe allergen reactions, airborne allergen reactions, urinary frequency, fatigue, exhaustion, sleep disruption, spinal problems, pain, and skin infections from bug bites or scratches.

Comment from: Bitten , 45-54 Female (Patient) Published: May 08

I have had dry eyes from Sjogren’s syndrome so badly I cannot open my eyes without artificial tears in the morning and throughout the day I am always thirsty to the point I cannot speak clearly. I also have immune thrombocytopenic purpura (ITP), and with the medication for that my muscles and joints hurt so badly. I have to take pain medications at night. At times I’m in such pain I wake up to take a pill. If I keep active I’m okay, but I hit a brick wall due to fatigue and have to sit. After being still it makes the pain worse. It is a no win. I am a single mom with an only child, my mom and dad have both passed. The stress of that alone is enough to go off the edge. It has affected my teeth. My oral surgeon says teeth with root canals need to come out and replaced with implants. The expense is in real; even with dental and health insurance. It is doctor visits weekly. I now have a tooth that has a root canal and a crown that is abscessed, I cannot have it extracted until the 15th so I am hoping I make it till then with no major anything. People don’t understand how frustrating this autoimmune stuff is. I feel sad, and people think I am just making excuses. It is real, painful, and debilitating. With no family, divorced, and a 13 year old boy to raise, I feel alone!

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. 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: Pat, 65-74 Female (Patient) Published: April 01

I don’t know what to do to stop mouth problems from Sjogren's syndrome. My lips inside mouth will swell up, and at the same time my tongue will swell. My gums swell up. I can't chew. I can only swallow pudding, yogurt and water. I don't know what triggers this. I am going to the doctor tomorrow. This has happened a couple times in the past two years.

Comment from: Lizzieabe3, 45-54 Female (Patient) Published: January 05

I have rheumatoid arthritis (RA) and was misdiagnosed for years. The pain is getting worse each year and I feel I have had to diagnose myself. I have had Sjogren’s for 2 years now and my mouth gets inflamed after any kind if illness. My gums are blood red, teeth hurt and when I floss everything bleeds. I have canker sores, dry eyes, swollen tongue, it is scary! My RA doctor put me on methotrexate. Everything seems worse in the mornings. If I sit too long then everything hurts, and it's hard to get up. I am thinking of going on the Paleo diet.


What Is Rheumatoid Arthritis (RA)? Symptoms, Treatment, Diagnosis See Slideshow
Comment from: Les G, 65-74 Female (Caregiver) Published: October 30

My wife was diagnosed with Sjogren's syndrome stage II about 8 years ago. As her condition progressed she became a real night owl; cannot sleep at night and sleeps all day. It's like her diurnal clock has been shifted 12 hours. She awakes 4 to 6 pm, in the beginning of her Sjogren’s pains, and takes her first daily set of prescription pain medicines. She has no appetite and will just snack through the night. Her pains increase as the night passes and she takes her second round of her prescription pain medicines, and then go to bed around dawn.

Comment from: Marta, 55-64 Female (Patient) Published: October 23

I was diagnosed with Sjogren's syndrome over three years ago. For a year prior to diagnosis I saw 7 eye doctors because no one could figure out what was wrong with my eyes. They were very red, sore and it was hard to see. I take 2 tablespoons of cod liver oil a day and use Restasis eye drops twice a day, artificial tears throughout the day and I take pilocarpine 3 times a day. I chew a lot of sugarless gum. My mouth dryness has gotten a lot better. When I was first diagnosed my mouth was so dry I could hardly talk. I do have a lot of skin issues and use cream (not lotion as it has alcohol in it) several times a day. I have a good rheumatologist, dermatologist and primary care.

Comment from: Justin, 55-64 Female (Patient) Published: October 15

I think there is a big misunderstanding to treating sprained ankles (stretched or torn ligaments). This is just an injury and your body’s natural remedy swelling. Your body increases blood flow to the injury site to repair the damaged tissue (adding heat will also draw blood to the area). Why doctors promote practices to reduce swelling is beyond me. I'm treating my sprained ankle (right now, as I type this) by sitting here with my foot below me; moving it from time to time. I'm eating a high protein/vitamin C diet and that's it. When I walk, I try not to reinjure myself.

Comment from: Anxious, 45-54 Female (Patient) Published: October 13

I was diagnosed with Sjogren's syndrome about a month ago, but have been experiencing symptoms for about 2 years. I was relieved to at least have a diagnosis; everything makes sense now. I have been unable to work for the last 8 months with uncontrollable asthma, and sinus issues. My parotid glands are giving me a hard time. I have been swollen and in pain for about two weeks now. I also feel very fatigued and achy. My initial appointment with the rheumatologist is in February 2016, so I feel anxious. I also feel like many other glands are tender; it's just weird. I try not to worry too much, but it's almost inevitable.

Comment from: Bubbles, 45-54 Female (Patient) Published: March 10

I was diagnosed with Sjogren’s syndrome when I was 41, and I lost all feeling in my face. I had suffered from many eye infections and have done so over 20 years (cold sore attacking the Iris). I found all of my joints very stiff swollen and very painful. I see a specialist every 3 months. I am on Plaquenil 400 mg daily. Some days I just can’t get out of bed. I am sorry to say but I took up smoking pot to relieve the pain. I have just recently lost my Left knee so I have had total knee replacement (TKR) with the next one due in 3 months’ time. My doctor injects my joint on a regular basis. I am unable to work due to many reasons including long standing, long sitting and stairs. I am now walking with a walking frame. I really hope someone can find a cure for this dreadful condition. People don’t understand or don't wish to understand the issues behind this disease.

Comment from: Katdog, 55-64 Female (Patient) Published: March 03

I have burning lips, sore tongue and hot gums because of Sjogren’s syndrome. My eyes are constantly blurred. I have tear duct plugs and use Restasis 3 plus times a day. It never goes away and I never have a day without it. Body aches do respond to daily SSRI (selective serotonin re-uptake inhibitors) and Celebrex along with many supplements. Hope this helps someone.

Comment from: Gina, 35-44 Female (Patient) Published: February 23

I have had dry eyes for decades. So much so I was unable to wear contacts. I remember reading a list of symptoms for Sjogren's syndrome back when I was in nursing school and said to myself, 'I bet I have that.' I have dry eyes, fatigue, dry skin and nails, and hair loss at times. Those are the main symptoms. Somewhat dry mouth, but not terrible. I just need to sip fluid but I still have good saliva production as per doctors.

Comment from: goiter girl, 35-44 Female (Patient) Published: August 15

I have Graves’ disease and Sjogren’s syndrome. It took me 6 years to get a diagnosis. I have joint pain, ear pain, dry mouth, increased cavities, dry eyes, extreme fatigue, dry skin, hair loss, and depression. A friend of mine suggest trying the autoimmune protocol/Paleo diet. It is quite restrictive. I followed it for 3 weeks without fail and felt great and even woke up in a puddle of drool, sounds gross I know. It is not a cure but it did lessen my symptoms. Many books out there I like practical Paleo and the autoimmune cookbook. It takes an effort which is hard with our fatigue, but it is worth it.


Hyperthyroidism: Symptoms, Treatment, Medication See Slideshow
Comment from: QuickDigits, 65-74 Female (Patient) Published: March 11

I am a 65-year old female. I was diagnosed about a month ago with SLE (systemic lupus erythematosus), mixed connective tissue disease and Raynaud"s syndrome. My rheumatologist diagnosed me. The blood test was 8 pages long. My ANA was through the roof! I am grateful to finally know and understand why I"ve been feeling this way for the last 35 years. I also tested positive (with 2 tests) for Sjogren"s disease. I don"t have the typical aches and pains and joint problems, but my mouth is always dry and I must have juice or water all the time next to me. I take 5mg prednisone daily, Plaquenil 200mg twice a day and 5mg Norvasc daily. I am very new to this disease, since I have only known I have it since one month ago. I get tired very easily and don"t have much energy. I have really good medical insurance for which I am grateful to have at this time.

Comment from: Heidi, 35-44 Female (Patient) Published: March 06

I was diagnosed at 37 with Sjogren’s, I am sure I had it for many years before. I now have rheumatoid arthritis and fibromyalgia. It has been getting worse and worse. I was on all kinds of medications however nothing is working. Dry eyes, dry nose, dry mouth, sensitive mouth and teeth, headaches, joint and muscle pain; face gland hurts like I have been punched, every day. Fatigue is almost always high. I nap 2 to 3 hours a day then all night or I cannot sleep at all. Brain keeps going and body says no. I hope for something to help in the future. This is not a way to live.

Comment from: Denise, 55-64 Female (Patient) Published: February 07

I think I have had Sjogren’s for a long time. I have always had dry mouth and eyes, my skin is fair so it is dry also. I was diagnosed with lupus back in 1993, Sjogren’s around 2001. It was very bad for around 5 years, then I found MSM (methylsulfonylmethane). It has helped me feel much better. I now have found tulsi tea, I no longer have reflux and am off my medications. I still have my cough, and problem swallowing, but I’m not hurting that much. I'm easily fatigued, don't sleep well and all my teeth have been replaced with dentures. Life is better now the Sjogren’s is not active.

Comment from: Mocha, 55-64 Female (Patient) Published: January 03

With Sjogren’s syndrome my eyes have terrible problems. My corneas are trying to detach, which has left me with permanent vision loss. The pain and irritation is awful. My teeth are a mess. I've had so many root canals and crowns I've lost count, and now I'm going to lose one of my teeth. I suffer from fibromyalgia and osteoarthritis. My skin is extremely sensitive and prone to terrible bouts of itching. I live with irritable bowel syndrome and esophageal spasming. I'm frequently tired.

Comment from: blu, 55-64 Female (Patient) Published: December 09

I was diagnosed with it over 15 year ago. I get all the aches and pains associated with it. The left side of my body is more painful than my right side. I have to take a hot shower each morning just to be able to move. Recently, I started getting pain on my left shoulder. I take public transportation to work. at the end of a work day I would literally stop from walking home just to rest my body, my muscles would feel really heavy and feels like pulling me down. I also get the dryness in my throat and eyes. My ophthalmologist prescribed Restasis eye drops to help the redness and dryness. I would also experience bad taste and smell in my mouth, and people just walk away when I'm around. I have been trying many things just to have cleaning smelling breath as my job is interviewing people. I am also taking pilocarpine for dry mouth. I am desperate.

Comment from: Mick, 45-54 Female (Patient) Published: November 20

I have been suffering with total body ache, migraines, dry mouth, dry eyes, and sinus problems for over two years. This past summer was real bad when my acid reflux and fatigue hit me. They tested me for RA (rheumatoid arthritis) and it came back clear but Sjogren’s showed up. I just started treatment so I am still not feeling good. I am happy to have an answer and that I am not crazy. My family and coworkers just don't get how I have all these symptoms going on. I hope they never have to deal with something like this.

Comment from: kaycee, 45-54 Female (Patient) Published: October 15

I have been diagnosed with Sjogren’s syndrome about 5 years back, after spending my every off day at the dentist. I went back to the dentist after 6 months for check up and I had 18 cavities! I mostly suffer with extreme dry mouth, I drink so much water that I have to run to the bathroom 2 to 3 times a night. I also have joint pain and it is being controlled by meloxicam 15 mg daily. I had to have my teeth extracted, I try to get them filled but as fast as they are filled the decay has been returning so fast.

Comment from: Huraud, 75 or over Female (Patient) Published: April 10

I have been diagnosed with Sjogren's syndrome and I had a mastoiditis operation as a child. I am now having hearing problems and finding since wearing hearing aid I have started getting slight ear ache. I have heard that there could be a genetic link to Sjogren's and possibly also to mastoiditis. I have many symptoms from the Sjogren's.

Comment from: STEVIET, 55-64 Male (Patient) Published: May 11

I am a 58 years old male. I have been sick for 7 months with a weight loss of 65 lb. The taste of food sickens me so I do not have the desire to eat, but I do not vomit. I am fatigued and sleep all the time. I have abdominal pain, irritable bowel syndrome, and diarrhea. I have thrush, and diagnosed with dry eyes and mouth. I have pain throughout my body. I am so depressed, I don’t want to live like this and no one can seem to find what is wrong. I have had a million dollar work up including a PET scan. I felt sure I had Sjogren’s syndrome, until my ANA blood work RA (rheumatoid arthritis) tests, all negative, homogeneous 1:40, negative. I don’t know what to do. I do not want to live like this. It is tearing me apart and my wife, and killing our marriage.

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

I have Sjogren"s syndrome. I have dry lips and I need something that helps my lips stay moist. I get sores like fever blisters but they go away if I can keep my lips from cracking. I try to keep lipstick on or Vaseline lip therapy. I can"t open my mouth very far without feeling like the corners are going to split wide open.

Comment from: Linda D, 65-74 Female (Patient) Published: March 14

I have Sjogren’s syndrome. I have also had non-Hodgkin’s lymphoma (8 years clean). The dry mouth has been helped by drinking water with electrolytes. I drink about 6 liters a day, it also helps vertigo. I am on 4 eye drops due to myasthenia gravis. I feel fortunate because I could have more severe problems.

Comment from: Worried in Florida, 45-54 Female (Patient) Published: February 18

I am 46 and I just been diagnosed with Sjogren’s last week. I am scared and worried not because of me, but for my family, and my 7 year old daughter. I have been reading everybody’s post and I hope that everyone will soon feel better. I have the dry mouse, fast heart beat sometimes, very dry skin, blue finger nails, I sleep 4 hours a night, I’m always stressed, and I am having a hard time exercising. The rest of my results will be read to me next week.

Comment from: sore m, 55-64 Female (Patient) Published: October 08

I have dry scalp, dry eyes, dry mouth, dry ears, everything is dry. I was diagnosed about a year ago with rheumatoid arthritis, and secondary Sjogren's. I take Arava and Humira for the rheumatoid arthritis. I use eye drops, Biotene mouthwash (which really helps with dry mouth), moisturizing shampoo and Eucerin for dry skin. I have learned to control the symptoms and that there is no cure.

Comment from: grimli76, 35-44 Female (Patient) Published: April 15

I was diagnosed about four years ago with a false positive for Lyme disease and a high sedimentation rate (sed) – higher than that of an 80 year old. I often get to feeling rundown and dried out or dehydrated and have to go to the clinic for an IV therapy session, where I get fluids pumped into my veins – then start to feel a little better. I have a severely dry mouth and eyes, my eyes get infected a lot these days and get pus in them and crusty and red. My tongue gets dry like beef jerky and now I’ve had dry throat, where I lose my voice and sound really raspy. My skin is dry and rough – lotions don't seem to help much. My lips are usually cracked and sometimes split from being so dry. I have been experiencing increased pain in my knees due to the joints being dry and the rubbing of bone on bone. I have a deep pain in my neck, shoulders, and both arms. My hands feel weak and inflamed. I had a nerve test done and found out I have neuropathy in both my arms and legs due to Sjogren's. I don't even like to go anywhere or leave my home. I haven't left all winter except to see doctors, because the cold is so crippling on my body. There are times during flare-ups that the pain is so intense I can’t sleep and pain medications do not help at all. Sometimes the only way I can get any relief or rest is to continuously use my heating pad. I am way too young to feel this old. There is so much I would still like to do in my life but fear that I may never get the chance to do it. I fear one day getting news of cancer because of this disease. My lymph nodes are always sore and it really has me wondering. I can so relate to everyone who shares their stories. Sjogren's is the gateway to diseases that are much worse. I wish more people understood what we go through as Sjogren's sufferers. Maybe then there would be more help out there for us.

Comment from: lexigirl, 55-64 Female (Patient) Published: May 26

I was experiencing a lot of joint pain. My blood work came back showing I had Lupus but I was advised by my gp that this could be a false reading. I went to a Rheumatologist and after undergoing several tests, it was determined that I have Sjogren's Syndrome. In addition to dry eyes and mouth and joint pain I am now seeing a Pulmonologist because I am having trouble breathing whenever I am the least bit active. I have had anxiety attacks because I felt like I couldn't breathe. CT of my lungs shows calcified and uncalcified nodules in the tissue of my lungs. Also, I can't take the medicine prescribed (azathroprine)for Sjogrens. It makes me vomit, even when I take with food.

Comment from: Carolyn, 65-74 Female (Patient) Published: May 24

I am 72 and suffered with fibromyalgia for 20 years. Now I have Sjogren’s syndrome. I experience fatigue, depression, and I need to take Ambien to sleep. Also, I have aches and pain. I have a pain under my right breast, so I quit wearing underwire bras, but that didn't help. My mouth feels as if it is on fire. It burns! My eyes are fine, so far. I have lost 20 pounds, which is a good thing. I am lightheaded though, and I get dizzy. I also get night sweats. I went through the night sweats years ago as well. I golf and try to keep busy.

Comment from: cc, 35-44 Female (Patient) Published: May 20

I was diagnosed with Sjogren’s syndrome about 10 years ago, but I was having the symptoms longer than that. The fatigue is the worst for me and then the joint pain. I find that if I overdo it with activity is when I experience the most joint pain. I was in remission for about five years until I recently changed jobs and have to work about 14 hours a day. These hours have been extremely difficult, and the fatigue is overwhelming. I am going to have to balance my life and the stress level a lot better if I want the symptoms to decrease.

Comment from: SSMomOfTwo, 25-34 Female (Patient) Published: February 17

I have just turned 30 and have been finally diagnosed with Sjogren's syndrome. I had been thought to have MS, HIV, and a slew of other diseases. My ENT doctor diagnosed me correctly after seven years of testing. It’s been a struggle. My symptoms initially were severe joint and muscle pain and tremors after very little physical activity. I have progressively deteriorated, losing 35 pounds in only four months last year. All of my teeth are fake, or close to being pulled. I lost 10 teeth in three months. The fatigue is currently horrific! One of my relatives thought I was a drug addict. That made me cry, and I no longer speak with him. As if living with chronic disease isn't bad enough. Young females with children need a good support system around them, as well as men who have to support a family. This disease takes its toll, but it is manageable with a loving family around to lend a very much needed hand.

Comment from: Dave Doches, 55-64 Male (Patient) Published: January 05

I am 55 year old woman. I have had terrible coughing problems and extreme tired symptoms for the last 3 years. I thought they were sinus problems. Had sinus surgery, did cultures. It was better for a short while, but coughing always came back. I had debilitating coughing, but no irregular breath sounds chest and x-ray clear. Not much sputum produced. ENT finally suspected Sjogrens and had a lung doctor look down my lung with a camera; I was oozing blood all along my airways. Started taking prednasone and Plaquenil and resting. Did I mention extreme tiredness. Finally I thought maybe I am not crazy after all. I was good for about 3 years for the most part with only a few flare ups. This past summer my director position of respiratory care in a major hospital got done away with. Naturally I had a flare up that has lasted until December. I am finally getting better for now. It’s going down on prednasone. I have found if you have a coughing problem like mine use albuterol and racemic epinefren. They are both old drugs. The racemic reduces the membrane swelling and I can finally breathe better and reduce my cough. Also if you get some urine dip sticks and can cough up something it usually will show blood on the dip stick from your sputum. I have this disease. It hurts, makes you tired makes you swell makes you cough like crazy and everybody looking at you thinking you are just goldbricking. Oh well all I can do is try to live with it. Thank God for my wife she has been my rock, good luck to you all.

Comment from: bing research, 65-74 Female (Patient) Published: January 04

I was diagnosed over 1 year ago with Sjogrens. I am very frustrated. My eyes are dry, itchy and they burn. I use systane eye drops as needed. My lips are so dry and cracked. I've tried all balms available with short term relief. My mouth is very dry and I need water to sip on with each bite of food I eat. Chocolate and nuts really tear up my mouth. It is so inflamed when I try to eat these foods. I've lost 30 pounds (the hard way). My mood is nasty. My husband says I am not the person he married. Yes I get bitchy! My body aches as I have this degenerative arthritis also. Fatigue is depressing. I was on the move much more before all of these syndromes started. Just live with it and keep busy as possible. Lots of luck.

Comment from: Sandra, 75 or over Female (Patient) Published: August 12

I was diagnosed with Sjogren's by my eye doctor over 30 years ago but have been exceedingly lucky with a mild case mainly with dry eyes & mouth. Only now, retired to southern Mexico, is it getting worse. I use a tens machine on my feet when they get to burning (neuropathy) and have noticed that I seem more emotional. Have taken antidepressants off and on most of my adult life. The last few days I have developed a really bad, deep, ache across my back at my waistline. I wish all my fellow sufferers wellness!

Comment from: p k jena, 25-34 Male (Patient) Published: July 02

I am sjogrens syndrome patient. i have recurrent paratitis and redness of eye in past 1-2 years. i have also feel pain on my joints like ankle, knee, neck, back pain, heep and wrist also in past 2 years.

Comment from: tanner2604, 55-64 Female (Patient) Published: June 03

I was diagnosed with Sjogren’s syndrome about six years ago. It’s been a pretty rough ride. I’m in my early 60s and have been denied disability. I own a small business and work part-time in retail just so I can pay for my meds. I now am going through a new phase with lumps forming in my joints.

Comment from: sunshinelady, 45-54 Female (Patient) Published: April 19

I have had Sjogren’s for 27 years. It started out with dry eyes and mouth. My tear ducts have been cauterized. I have a mouth full of fillings. 5 years ago I had Non-Hodgkin’s Lymphoma in my left breast found as calcifications on mammogram. I was treated with radiation. I’m clean now 5 years later. During testing for the lymphoma the doctor found I have inflammation in my lungs also. I have been dealing with cough for a while. I’m now on Prednisone. I get lots of sinus infections too. I am tired most of the time but I just keep going and am still working full time.

Comment from: Mary, 65-74 Female (Patient) Published: April 04

I have had Sjogren’s for about 17 years, but now it is affecting more things. My rheumatologist told me that the COPD that I was just diagnosed with, was probably caused by the Sjogren’s and now I am having so much difficulty with my esophagus and with swallowing I think it may be related to the Sjogren’s. I am constantly drinking water.

Comment from: Molly, 75 or over Female (Patient) Published: April 04

I experience extreme fatigue. My mouth is so dry especially at night and my mouth burns. My eyes aren't too bad but the fatigue I find very debilitating and would like to know what I could take to give me energy.

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

When my Sjogren’s syndrome was discovered, I started hurting in my hands and feet in my early 30's. Now, in my 60's, my entire joint system hurts every day. Nights are the worst, trying to rest while my joints hurt. My eyes are very dry, but my mouth isn't. My skin and hair is dry. I take prednisone daily, with extra dosage when the pain gets really extreme. I feel bad every day. And sometimes I feel like I cannot walk from one room to the other. I wonder how I will be next year, or the next.

Comment from: momto3, 35-44 Female (Patient) Published: February 09

I have had Sjogren’s for several years and have found that mineral oil is a huge relief for the dry skin issues. I use it on every area that bothers me, and it makes a tremendous difference. You can find it at any local drugstore. It is relatively inexpensive, especially after trying almost every product I could get my hands on. Take it day by day, and try to stay positive!

Comment from: tturn31, 45-54 Female (Patient) Published: January 31

I found out that I had Sjogren’s syndrone about eight years ago. The doctor that I was seeing didn’t act like it was anything to worry about. In the last year or so, my health has taken a turn for the worse. I always have dry eyes. I’m 48, and I feel like 88. I’m in pain all the time, and about six years ago, I had times when my right side up under my ribs hurts really badly for a few days at a time. It seems to be getting worst lately. But doctors can’t find out why.

Comment from: [email protected], 45-54 Female (Patient) Published: January 11

I have had Sjogren's for the past six years. I'm 51 years old. It was confirmed after having a lip biopsy ordered by my treating Rheumatologist. For the past several years I seem to being worse and worse. My tear ducts are sealed in both my eyes but continue to having redness and gritty feeling, my mouth is so dry my pills no longer help. I sip water day and night. I can't swallow food without washing it down with water. Yes, I also feeling like I'm choking. Bumps and lines are appearing on my inside bottom lip due to blocked glands. The blood vessels in my legs are leaking blood, which is happening weekly now. My rheumatologist referred me to a Hematologist for more work up. I'm also losing weight rapidly which scares me. During all of this testing my beloved rheumatologist passed away. It will be tough filling his shoes. I'm in limbo!

Comment from: csi_babs, 25-34 Female (Patient) Published: January 10

I first started with some joint pain, I also had really bad menstrual cycles. I then was diagnosed with fibromyalgia then my allergies went haywire. My Neurologist sent me to a Rheumatologist she did testing on me and found out that I had Sjogren's. All the while the fatigue was horrible. I was having a hard time staying awake during the day and I was in a lot of pain and joint inflammation was unbearable. I have dry mouth all my life so it wasn't an issue until I couldn't swallow my food properly. Here in the last few months my dry eye, mouth, and nasal passages got worse, but I have days where the disease really takes its toll and then I have great days too. I try to stay positive and healthy but it so hard being the mother of 3 boys but I try for them and my husband.

Comment from: sassymiley, 65-74 Female (Patient) Published: June 21

I been running to doctors for years only for one to say it was all in my head. Even my family believed that. Dr put me on anti depression meds and now I can't get off them. I feel tired all the time and ache all over too. Now my ankles are swollen and hurt when I walk. My eyes are the worst .Burn or itch all the time and no drops have seemed to work. I am now having trouble breathing and have developed a cough. Finally a DR took some cells from my mouth and diagnosed me with sjogrens. My teeth seem ok. No one else in my family has this.

Comment from: sandraruby, 65-74 Female (Patient) Published: June 15

Extreme tiredness, problems with my pancreas, dry eyes, dry mouth sore glands, slow thyroid and general feeling of lethargy. Vaginal dryness resulting in frequent bouts of thrush and water infections.

Comment from: houston,texas, 35-44 Male (Patient) Published: June 03

I've have just been diagnosed with sjogren's syndrome. I have very dry skin, my mouth is constantly dry. My saliva glands under my ears swell up mostly every other day.

Comment from: Gstmal509, 13-18 Male (Patient) Published: May 23

Hi I am a 15 year old Boy and I was diagnosed with sjogrens syndrome about two years ago. But apart for the Itchy, dry eyes and the glands behind my jaw swelling up every day. I feel ok.

Comment from: Annabelle13, 13-18 Female (Patient) Published: May 20

I've been diagnosed with Sjogrens 5 years ago and I am currently 18. Along with Sjogrens I have very bad acid reflux. On top of that I also have Rheumatoid Arthritis, and Crohn's Disease. Now I understand everyone's pain is different, but I live in immense pain everyday and I still keep a smile on my face. Even if you have Sjogren's or other problems don't think about your life stinks, just think about being lucky to live. I look at my diseases as a gift; yes I cry a lot due to the pain and everything else. But these are what makes me; me. I'm to the point where I can't let this run my life. Ladies and Gentlemen I'm sorry but if I can pull of being a young teenager and have this so can you. Never give up with this because yes there are bad days, but it shows how strong of a person you are.

Comment from: Lou, 65-74 Female (Patient) Published: May 12

My symptoms with Sjogren's syndrome are joint pain, throat tightness almost like choking,and reflux occassionally.

Comment from: mhazel, 35-44 Female (Patient) Published: May 03

I am in the process of a diagnosis. I should say, the beginning stages of the process. My symptoms are dry eyes and dry, flaky, cracking eye lids. I also have severe dry mouth, sinusitis, sores in my nose, a lump on the inside part of my lower jaw under my front teeth. I have severe dry skin and lips. My hair is breaking. Sometimes the goopy tears are so thick that I have a hard time seeing. I have vaginal dryness. And the fatigue is almost too much to handle. Hopefully, the doctors are going to say that we're in the beginning stages, but I have a feeling she's not.

Comment from: 45-54 Female Published: April 20

I have Sjogren's and I have spells of pain from head to toe. My whole body feels like one big cramp, with pain. My skin itches all over. I feel like I haven't slept for days when I have an attack.

Comment from: AnnieD, 55-64 Female (Patient) Published: April 14

I was diagnosed with Sjogren's in my early 30's. It started with extreme pain in my knees and progressed to the point where I could hardly move. Over the years I've had a few flare-ups and depression but kept working just so I'd get out of bed in the morning. I'm now in my 60's and lead an almost normal life. I get very tired but the pain is pretty well under control. After reading some of stories here I feel very fortunate. It's a tough road but there's always hope for remission. Good luck to all.

Comment from: 55-64 Female (Patient) Published: April 12

I was diagnosed with Sjogren's about ten years ago. I am getting ready to turn 63 and the worst part of it for me is the extreme fatigue. There are most days that it just consumes me. I have dry eyes and dry mouth also. I have to use eye drops and drink a lot of water. There are days that I can hardly hold my head up. I have to rest a lot. I am getting ready to see a new doctor, I hope he can offer some treatment for this.

Comment from: justjill, 45-54 Female (Patient) Published: March 29

I have had Sjogren's since 1991 and recently had a flare up and the doctor put me on prednisone. I had been on prednisone before for a short amount of time to calm inflammation down, but this time my blood sugar sky rocketed and now I am diabetic.

Comment from: kay, 25-34 Female (Patient) Published: March 25

I am 33 and I have been going through hell since I turned 30, it started with kidney stones and I have had 8 surgeries and one loss of my husband due to the pain with being touched. He wasn’t strong enough to see me go through it. I was in the hospital and seeing doctors that didn’t care about me and never took the time to do the right test so then family started to say it was in my head and then at last I found the doctor I have now and he did all the right tests and is now helping me deal with everything. He sent me to a rheumatologist and he made me feel like a guinea pig so I spoke with my pc doctor and he could see my frustration and new that it’s time for someone who could explain to me what I am going trough. Then I got hit with more bad news not only do I have this but Lyme disease too. Wow I am in for it, but hopefully this will help the next that no matter what you go through you got to keep going, fight, fight, fight.

Comment from: wendy t, 55-64 Female (Patient) Published: March 11

My eyes are very dry and it often seems to drive me to distraction. I'm worried that they are going to keep on getting worse and so I won't be able to see to do many of the things which I enjoy.

Comment from: violets, 45-54 Female (Patient) Published: March 11

My symptoms began when I was 44 years old. I was 48 when diagnosed with Sjogren's by my rheumatologist. I am dealing with the dryness, but recently specific joints feel as if they are on fire (extremely painful). I try to exercise minimum of 4 per week, but the quality of my exercising has decreased dramatically. I can barely move. I have weird rashes, patchy areas of skin that itch tremendously and fall asleep at work. I am on synthroid, plaquenal, nuvigil, ibuprophen, evoxac and tons of antacids, for my newest symptom of nausea.

Comment from: helen, 45-54 Female (Patient) Published: February 14

The past year I have suffered with dry eyes so bad that they have put permanent plugs in my upper and lower tear ducts sadly I have only had 2 months relief, but it’s the joint pain that I find hard to cope with and the tingling and weakness in my arms.

Comment from: Debbie, 45-54 Female (Patient) Published: January 28

I was diagnosed 4 years ago after 10 years of suffering, family doctor sent me to a rheumatologist. Have Sjogrens, Fibro, Osteo and cardiac issues. Plaquinel did not work for me. After 1 year liver enzymes sky rocketed. The sinus migraines and jaw pain is unbearable. The exhaustion and glandular pain is horrible. I am finding new strength that I never thought I was capable of. With cardiac issues I cannot take a lot of medicines to ease pain. Throwing up is an accepted behavior I never thought I could live with, but it happens weekly. I belong to Sjogren’s Foundation and they have given me priceless info, my first seminar I did a lot of crying among others, so many people suffered like myself and worse. I never smoked, no rec drugs and born a vegetarian :) I am very active. So I pray daily for my Sjogren’s patients. God Bless you all.

Comment from: marie, 75 or over Female (Patient) Published: January 27

I was 76 when I was first told I had Sjogren's syndrome; my mouth burns all the time and I am very dry. Drinking plenty of water and chewing gum helps my condition a lot.

Comment from: Mal, 55-64 Male (Patient) Published: January 25

I am male in my early 60’s diagnosed about 12 months ago. I use to tell my doctor and friends I was getting hot flushes, "you’re mad" general consensus, men don't get hot flushes. I also had swollen and painful glands in my jaw. Ultrasound found nothing. I was told by one doctor just part of ageing, move on. Went to another and had blood tests, behold sent to specialist and told yes you have Sjogren’s. A lot of things now make sense, persistent cough, GERD, joint pains, fatigue and mental issues (an incredible fear of heights). Those of you with SS know the symptoms. The good thing for me was now I know I'm not "mad" and all my medical issues now make sense.

Comment from: butterfly, 75 or over Female (Patient) Published: January 25

About 2 years ago my eyes were so dry I had to open them manually every morning and the eye doctor diagnosed me as having Sjogren's. I use restasis at night one drop in each eye and it has helped a lot - started with 1 drop 2 times a day. My mouth and throat are always dry and I either drink water or spray my mouth with water as a temporary relief. Now I am having strange intermittent pains in my knee joints, fingers, back, hip joints. I just went to the rheumatologist and started physical therapy - hope it helps.

Comment from: Kaamara, 45-54 Female (Patient) Published: January 25

I'm not diagnosed but my acupuncturist mentioned Sjogren's syndrome when I last saw him. According to Chinese medicine it's just a bunch of symptoms and not a diagnosis. Anyway I found it interesting, I have practically all the symptoms connected to SS and a few more. I'm also very sensitive to stress, have concentration difficulties, and I'm prone to worry. I'm slow to adjust when travelling for example and need lots of time to reflect on things or I get really confused.

Comment from: 55-64 Female (Patient) Published: January 25

I am 63 years old. Looking back now, I have probably had symptoms for years. I have dry, gritty feeling in my eyes. I have a dry mouth, gums, tongue. I have had sores in my mouth and my tongue is a disaster. I have had something else that I did not know could be related. I have vaginal dryness that I thought was due to my age and lack of sex. When I get my pap smear, it hurts terribly. The last one, I actually bled a little. I have asthma and chronic bronchitis. Now they think I have COPD. I use oxygen at night, and I take breathing treatments twice a day. Also, I have had GERD for years.

Comment from: Alysa, 45-54 Female (Patient) Published: January 10

I haven't been diagnosed (yet) but have suffered dry eyes since teenage years. I now suffer joint pain (since early 30's) and dry mouth and nose lining, get mouth ulcers frequently. My diagnosis so far has been osteoarthritis, arcoxia prescribed). I'm female, 52, and for the last three years have been "menopausal", with hot flashes and suffering from a dry irritating scaly skin rash, often linear, that no one has pinned down. All this together makes me think it could be Sjogren's.

Comment from: cactus3, 55-64 Female (Patient) Published: January 06

My first signs of sjogren’s were extreme tiredness, body aches and pains of which I repeatedly went to my local doctor for answers. He eventually sent me to a rheumatologist after my blood work came back abnormal. I was diagnosed with fibromyalgia, osteoarthritis and Sjogren's syndrome. My eyes feel gritty and I often wake up in the morning with no fluid around my eyeballs my mouth gets so dry it is agony if I cannot get to water quickly and I think I am going die. I find the plaquenil has really helped me and I take Chinese herbs, which I think help as well. Keep active and eat a healthy diet .My mother and aunty both had Sjogren's and I believe that my daughter's may have it too.

Comment from: 45-54 Female (Patient) Published: January 05

I was recently diagnosed with Sjogren's. The joint pain and fatigue is overwhelming. With no cure, and no treatment that seems to be helping, I don't know what to do. I can't imagine that I have to live with this pain for the remainder of my life. I am only 45 years old.

Comment from: Marieshell, 25-34 Female (Patient) Published: January 03

I am 33 and about two years ago I was diagnosed with Sjogren's disease. I have suffered from many symptoms, even before finding out about it. I have constant dry eyes, dry mouth, my skin is always dry. I stay really sick at my stomach a lot and I am extremely tired. I seem to keep infections and headaches can be really bad. I was a smoker, but knew it was time to quit due to the illness, amongst other things.

Comment from: Female (Patient) Published: January 03

I cannot eat the foods I like because my tongue won't push the food down my throat. I have to eat things like pudding, gravy and soup. This is very frustrating when I am trying to eat my lunch at work and people are watching me, I am afraid I am choking. I'm not choking, I just can't swallow.