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Symptoms of Sjogren's

 

Sjögren's is a systemic disease, and its symptoms are felt throughout the entire body.

Sjogren%27s Body Poster 2014

 

Symptoms vary from person to person but may include:

  • a dry, gritty or burning sensation in the eyes
  • dry mouth
  • difficulty talking, chewing or swallowing
  • a sore or cracked tongue
  • dry or burning throat
  • dry or peeling lips
  • a change in taste or smell
  • increased dental decay
  • joint pain
  • vaginal and skin dryness
  • digestive problems
  • dry nose
  • fatigue
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Comments

It is so important that we are all very clear of the fact that everyone is different and what might be an issue for one person may not be of significance to several others. And yes, bio-individuality is key. Progress in making the initial diagnoses is good news indeed. But, let us not forget that many symptoms come and go and change in intensity from day to day. Thus, the mystery, and frustration, of Sjogren's.
Posted @ Friday, June 08, 2012 2:31 PM by Jana Pendragon Bowdish
Sjogren's is indeed a very confusing condition. I read that changes in taste and smell can occur, but I have not seen any posts concerning sensitivity to fragrances and stong odors. Has anyone else sufffered with this?
Posted @ Sunday, June 10, 2012 8:03 AM by Dale Hollmen
I have been diagnosed for 10 yrs after having discoid Lupus. I also have fibro, scleraderma, and connective tissue disease. I have just had generic synthoid doubled as hair started falling out again along with anxiety, depression. I am so tired of living in a pity party. I can't seem to get involved with happy things and am really tired of fighting depression. I have read the books, walked the walk, and back at bottom again. If I say one more time "this too will pass" I may throw up....suggestions, please
Posted @ Friday, June 22, 2012 11:05 AM by Nancy Kelleher
Nancy, I too am miserable and I don't have any answers for you but I pray daily for relief and I feel God has a purpose for my life. I will also pray for you. Cynthia from Texas
Posted @ Sunday, June 24, 2012 3:58 PM by cynthia Schwarz
I'm ready to lose it, if I have to walk into my Primary Doctors office one more time, and have him treat me like I'm stupid! For two years I complain about the same things, extreme fatigue, extreme weight gain with loss of appretite and taste,joint PAIN, (I also have a lumbar fusion from a broken back-car accident)dry eyes, dry mouth, depression, hair loss, red face, my voice has been hoarse for 2 years, trouble swollowing,intolerance to cold,change in taste and smell, dental decay (11 teeth so far)and I could go on. My Doctor has not educated himself about this disease. I live in Oklahoma City, anyone out there with a doctor who knows about this! NEED NEW DOCTOR!
Posted @ Friday, June 29, 2012 6:36 PM by Terry Russell
Has any Sjogren's sufferers developed skin rashes that last more than 4 weeks? What did you do to stop the itching, burning & spreading? This is the first time I have broken out like this. It started with small amount of sunburn on shoulders & chest and now has spread over back, arms, & hands. 
The doctor prescribed Prednisone (12 tablets to start) and Triamcinolone ointment. Both helped, but now itching & burning have returned. Any suggestions? I have been wearing long sleeves since it started. 
Doctor & specialist have never seen this rash in Sjogren's patients. 
Does anyone at the Foundation have pictures of rashes that I may show the doctors? 
Thank you.
Posted @ Thursday, July 12, 2012 3:25 PM by Marcia
How did they diagnose hair falling out to be Sjogrens, and how did you get your Dr. To double your synthoid? 
I have lupus also and being in the sun will cause that rash that prednisone won't take care of. I had it on both arms and Plaquanil took care of it in about a month. It has been a long hard road as all of you know.I would welcome any info anyone will share. Take care of yourselves. Katherine Godfrey
Posted @ Thursday, July 12, 2012 6:26 PM by Katherine Godfrey
Does anyone have any suggestions for dry mouth. I use all of he biotene products but nothing seems to help for any period of time. I also am having colon problems. The doctor says not enough fluids. I drink plenty but it doesn't seem to help. I seem to be drying up like a prune. Any Suggestions? Also, has anyone heard of a treatment center in Baltimore Maryland. If so, would it be worth trip?
Posted @ Friday, July 13, 2012 5:28 PM by Cynthia Schwarz
I can relate to several comments that was posted. I am tired of going to my Primary doctor as well as my Rheumatologist. I had a rash myself once I went to my primary doctor I was given a steroid, a prescription for methyprednisolone, hydroxzine Hcl 25 mg along with an Triamcinolone ointment that I had to apply on the rash twice a day for 14 days. The rash did clear up. I have been in pain going on four weeks. I contact my rheumatologist last week to discuss the pain, instead of her returning my call she had the manager to contact me about an prescription that was called in. I explain to them that I just got off that medication and will not pick up the prescription. I no that this pain is real and I am in pain day and night. I had a flare up Wednesday where I had to stay in bed mostly all day expect for when I bathed, and other things. I was very weak for two days by Friday I was feeling a little better. The pain returned and I am hurting in my leg. The same leg that always given me trouble. I am currently seeking going on the internet to see where I can receive additional testing for my condition. My primary doctor ask me do I lupus. I stated that the last test I received from my doctor was just blood work.. I am requesting to be tested for lupus.
Posted @ Sunday, July 15, 2012 11:07 AM by Rena
I'm from Belgium. I would like to reply to Dale Hollmen. I have just been diagnosed from being affected by the sjogren syndrome (neurological issues, pain in muscles and articulations in addition to dryness everywhere in the body. However, I'm suffering for 15 years of huge and atypical respiratory reactions to all perfumes and scented products in addition to all type of smokes (barbecue, cigaret, wood...). So perhaps there is a link between these two patologies? Best wishes
Posted @ Wednesday, July 18, 2012 10:36 AM by Lucia Alves
I have had the all the traditional symptoms of Sjogrens, Fibro, and Raynauds...however, I also have pain in my hands and feet that sometimes I cannot do any housework. I wake up with it and go to bed with it...has anybody had anything like this? My Rhuematologist said that this didn't sound like Sjogrens. It is a bone ache/pain in all joints.
Posted @ Wednesday, August 15, 2012 10:15 AM by Becky
I have had this going on 5 years. Most of the things shared on the post, I have or am getting them. Like you all, My Dr. thinks I'm crazy. I can't find a Dr. that knows how to spell it much less treat me. I'm, in pain with knots in my muscles, joints and head. The dryness is very bad. I use the biotene products, but they don't give much releif. I live in MS. I have not heard of the Maryland Clinic. I would like to know if anyone has gone. I would just like to find a Dr. that knows more than me about it. If anyone has a good Dr. please get me his name. I know what you are going through-HE-L. Please email me if you can help. I will do the same. My smell is ok for now but my taste is off. Teeth are getting senitive, rashes and stomach issues. I have had some bad bouts with my stomach and the bathroom. Has anyone had this?
Posted @ Monday, August 27, 2012 4:09 PM by Dianne McGinty
Diagnosed 30 yrs ago with RA. 20 yrs ago diagnosis changed to Lupus, and within 5 years of that added Sjorgrens to the list. Suffer from dry eyes and mouth but count my blessings that I somehow am able to live with the effects. For dental, I found adding a flouride mouthwash like ACT has helped lessen dental issues. 
 
Posted @ Sunday, September 16, 2012 9:30 PM by Peggy Verburgt
I was finally diagnosed with Sjogrens 2 yrs ago. For the last 5 months I've experienced numbness on my right side from face to toes. I've gone to ER, had brain MRI, neck MRI, and spine MRI checking for myelin lesions (MS), nothing shows up, neurologist says its not neurological, my Rheumatologist says its not related to sjogrens, my primary care doctor has put me on an anti inflammatory. I do have two minor bulged discs in neck which doctor says could explain my numbness in my face and arm but not my leg or foot, no one has any idea. My spine MRI revealed a vertebral hemangioma (benign tumor) but doctor says that would not give me any symptoms, although when I look it up online it says these tumors can cause neurological symptoms. I don't know what type of doctor to try next. Maybe a second opinion from another Rheumatologist, I read mixed reviews online if sjogrens can cause neurologic symptoms. Also, it really flares up instantly if I get cold, my leg will literally lock up and I have to drag it. Any one else experience anything similar?
Posted @ Wednesday, September 26, 2012 11:31 PM by Stef
I was diagnosed with Sjogrens in April. I do not have dry mouth but I have aches and pains over my entire body daily and I struggle with fatigued daily. My dry eyes are managable. I have been to the clinic at Johns Hopkins in Maryland and I am currently waiting for my results. Has anyone looked into disability for this disease or has any success with a claim?
Posted @ Thursday, October 04, 2012 12:18 PM by Kennedy Rae
I think most doctors either look for the simplest explanation -- one that will get you out of their office fastest so they don't need to spend too much time with you -- or the most complex explanation -- one that will benefit them financially and keep you coming back, or one for which they need to refer you to more doctors. Male docs are the worst. They think most women are just high-strung and neurotic. Our pain isn't "real." Go see a female doctor, preferably a young one who has gotten a decent education in the newest treatments. That's the only way I found better treatment and relief. For 20 years doctors told me I had sciatica, GERD, and "just stress." My best friend got told the same thing -- and she died from complications of MS at age 50, spending the last 5 years of her life paralyzed from the waist down, and the last 2 years in a nursing home with a feeding tube. She did not questiojn her doctors until it was too late. I demand answers, and if I don't get them, I find another doctor. I'm not stupid, or high-strung, or neurotic, and my pain is real. Thank God my female doctors agree, and have treated me effectively. I am old enough to be their mother, but they listen to me.
Posted @ Friday, October 12, 2012 10:07 PM by Trudy
I have dry eyes, mouth, skin, my smell is very little and bad taste in my mouth. Is there anyone with this let me know if theres anything to help with smell and taste losing weight to fast I cant eat! Want to talk on the phone if possible about this! This is horrible!
Posted @ Saturday, October 20, 2012 12:44 AM by Charlie
to Stef, I have had nerve pain since last year. Went to Cleveland clinic and found out it's Small Fiber neuropathy. They suspected that I have Sjogran's. I tested positive for dry eyes and I have dry mouth. But the lip biopsy came back normal... I have coldand heat sensitivity and venos symptoms...in confusion now, whether I have Sjogran's or not. So, for your question--whether nerves are affected by this condition--yes, very likely! Good luck to you and take care!
Posted @ Thursday, November 01, 2012 10:45 AM by sm
To Terry Russell from Oklahoma City who posted 6/29/12. Yes, this is very late in posting, so I don't know if you will see it or not, but thought I would try. 
 
 
 
I live in a small town, but in the OKC area. ALL of my doctors are in the Edmond, OKC area. And by ALL, I mean that at this point I think I have 16 or so! No, Sjogrens isn't fun. My Sjogrens is complicated by RA, OA, Osteoporosis, Degenerative Disk Disease, and most importantly, Lupus. That's just to hit the major ones.  
 
I am so very fortunate to have what I consider three of the best doctors for my diseases. My Primary stuck with me and never thought it was "in my head" until he found my Lupus and Sjogrens. He referred me to my rheumatologist who is the BEST! He has even been recognized nationally. He is in Edmond, but well worth the drive. 
 
The third primary one is my nephrologist. My kidneys have reduced function all the way down to between 25-30%. But she is watching me very closely. She stated that it would have to get down to 10% before I have to worry about dialysis. 
 
I am not sure how this works, but if you read this and email me, I will be glad to email you their names if you are still looking. 
 
 
 
For the people who are asking about stomach and colon problems, please allow me to tell you a story.  
 
3 years ago I was shopping at Wal-Mart. I was trying on a couple of things and my stomach kinda rolled. I thought uh-oh, I better go to the restroom before I leave. I was in OKC. I had a doctor appt that morning and a hair appointment that afternoon. So, I was going to finish trying on the clothes and head to the restroom. All of a sudden I new I better go NOW. I barely made it to the restroom and thank God the handicap stall was open. Well, (pardon the language if you have a weak stomach) I had a bad case of diahhrea. To make a long story shorter, I kept having the 'squirts'. Everytime I tried to get up, I'd have to sit right back down again. NO KIDDING, this went on for 4 1/2 hours!!! I was so weak. I kept thinking how much poop can a person have in them? I thought if I could just get out to the car, I could recline the seat and rest a little and I'd be ok to drive home (an hour drive). The people at WM were so worried about me. They kept coming in and checking on me, brought me water, etc. One of the times I tried to get out to the car, the greeter offered me fruit out of his lunch! Never made it to the car - had to turn around and go back to the restroom for another round! I finally called my husband and told him he was going to have to come get me, and drive me home. That I was so weak that I could barely stand. Luckily, our son was here visiting with his girlfriend and they brought him to the city. When they got there, WM let him and my son come in and get me and help me out to the car. We started home, and we needed some groceries from Sam's so I insisted that he stop and get them. My son stayed outside with me. I know, stupid. We made it home and they got me into my chair, and I felt it coming on again. I headed for the bathroom. Now I don't know about everybody else, but I am not in the habit of looking at my poop, especially in a public place, especially when there was that much! When I headed to the bathroom, I didn't quite make it. When I pulled down my britches, - My pants were full of blood!!! I hadn't been pooping, I was bleeding internally. Needless to say, they rushed me back to OKC to the ER. (I swear he was driving 90). We had to stop once for me to go to a restroom - I had taken a change of clothes. I had to have about 2' of my colon removed! So, moral of this LONG story is, if your stomach and/or colon is hurting (and I mean BAD for a long period of time), or you have a long bout of 'diahhrea' please call your doctor. You might be able to avoid some of these problems.
Posted @ Thursday, November 08, 2012 4:47 PM by Sandra
Came online searching for some advice. I was recently diagnosed with Sjogren's and symptoms haven't been as intense over the past few months on Plaquenil. Had a bad night's sleep last and woke with intense migrane, blurry left eye, dry eyes, numb & tingly forearms, dizziness, nausea and vomiting. Slept for half the day and now feel about 85% normal besides a dull headache. Has anyone else experienced these symptoms or should I be encouraging my rheumatologist to be be further investigating? I definitely don't think these episodes are cold or flu related. I haven't found much research on Sjorgren's flashes, cascading neuropathy, inability to speak, motor skill problems, and balance problems during these flashes, or if there's flashes in general. I definitely feel my ailments are a neurological-immune related issue. And it comes and goes suddently, depending on if I've had a long day, ate thai food (that apparently uses a lot of fish sauce/MSG, or because of light sensitivity. Does this all fall under brain fog? My rheumatologist doesn't seem to acknowledge my symptoms. Otherwise daily symptoms are fatigue, occasional muscle and joint pain, and dry eyes & mouth.
Posted @ Wednesday, November 14, 2012 9:43 PM by JoyceC
JoyceC: you should join us on Facebook at Sjogren's Warriors. It is mostly women (of course). You have to request to join. I find incredible support and friendship there. Your symptoms are mirror images to mine and I do NOT have a supportive rheumatologist. It leaves me crying a lot but life goes on. There aren't many rheums in my town and I don't have the money or means to travel. If you'd like to share emails, I would love to have more Sjogren's friends....strength in numbers. Blessings!
Posted @ Saturday, December 08, 2012 8:36 PM by Mary Beth Lowery
To Stef who posted 9/26/12 
 
I was just diagnosed with Sjogren's June 2012. Have been dealing with symptoms for over 8-10 years but my primary care doctor did not think to check for Sjogren's. Switched primary care doctors and finally was diagnosed.....and no longer felt crazy!! My SSAs postive and my SED rate was 136! Going down now after starting Plaquenil.  
 
I too am experiencing right side numbness. It is as if someone has drawn a line in the middle of my entire body from head to toe. I thought it was the plaquenil I started in Nov. My Rheum. doc says it is not the med or Sjogren's so referred me to a Neuro who says he thinks it is the Sjogren's. So frustrating. I just had an MRI of the head and neck last night. I will know more next week. 
 
To Mary Beth Lowery: 
 
I hope you don't mind but I'm looking up Sjogren's Warriors on FB. :)
Posted @ Friday, February 15, 2013 6:24 PM by Marta Sanchez
I had posted in the dry eye section several months ago. The past few weeks I've been experiencing some gastro issues and know it's probably due to Sjogren's. It feels like my digestion process is very sluggish and my appetite is very diminished. Have recurrent episodes of nausea, diarrhea and gut not feeling right. I am taking Udo's oil (1-2 Tb daily) along with flax oil caps and eat pretty healthily. Eyes and mouth have been fairly stable with evoxac, restasis, 4000 IU Vitamin D and warm water throughout the day. Also exercise 2-3 x per week and feel fairly good because of it.I'm assuming the winter is a factor; have just gone back to researching for ideas for my internal issues.
Posted @ Friday, February 22, 2013 1:05 PM by Kathleen Dick
Kathleen Dick, 
 
I am now on DEXILANT and MOTILIUM for nausea/slow motility/abdominal pain and aching/constipation and diarrhea. I highly encourage you to ask your doctors about these 2 drugs as without them, I don't know if I could make it. Nausea has plagued me for 7 years. Endoscopes, CT scans, etc etc and finally my long time GI doctor said this is a Sjogren's complication. I was so glad to hear him say it! The GI tract issues were my very first. Fatigue and joint pain followed about a year later. I never had ANY dryness issues in eyes/mouth until 2012 diagnosis! It is such a "wily" and incredibly confusing illness. Please drop me a note if you want to talk more.
Posted @ Friday, February 22, 2013 5:15 PM by Mary Beth
Thanks for the information. I'm scheduled for a physical in a couple months and I'll bring it up to DR. Unless things get worse before then, this has just started happening in the past few weeks. I'm so grateful to have found the Facebook resource along with the comments posted here!
Posted @ Friday, February 22, 2013 6:41 PM by Kathleen Dick
I don't about such affect properly so pleased to learn most about such symptoms. To keep up with such affects I'll definitely follow the ways you mentioned. Thanks very much and keep allocation.
Posted @ Sunday, June 02, 2013 8:46 AM by Martha
I was diagnosed with Sjogrens in April 2012. My biggest complaint is fatigue.It does not matter how much rest or sleep I get, Im always tired. Does anyone else have this problem. Has anyone been prescribed any medicenes that helped.
Posted @ Wednesday, June 05, 2013 1:02 PM by Tonya
I was diagnosed with Sjogrens about 3 years ago. Recently I have been experiencing a weird hungry feeling. Sometimes it feels like heartburn. I have a bloated feeling in my ribs. Any ideas?
Posted @ Wednesday, June 12, 2013 7:14 PM by Ann
I have severe halitosis caused by sjog. syndrome. I stay at home most of the time. who wants to sit beside a person with really stinky breath? know what I mean?!!!
Posted @ Friday, July 12, 2013 2:46 PM by terry r.
Try green tea for dry mouth!!! It worked wonders for me. I drink 2 cups a day and within 2 days of this my saliva came back. True story!! Find one that is organic.
Posted @ Saturday, November 09, 2013 9:22 AM by Tracy
I was diagnosed with lupus at 44 yrs... I'm 55 now. I started getting headaches. Neurologist said you do not have lupus you have Sjogren's syndrome. Does one take over???
Posted @ Thursday, December 12, 2013 12:08 PM by JILL
I just posted earlier...I would accept any Lupus/Sjogren's info. Lack of sleep and stress do not help this... Thanks
Posted @ Thursday, December 12, 2013 4:10 PM by Jill
My partner was just diagnosed with Sjogren's Syndrome Primarye through OMRF. We have gone to one rheumatologist that SUCKED. He told us basically that until an organ was affected there was nothing he could do and totally ignored her when she told him about the severe nerve pain she has been having in her feet. Could someone please recommend a good rheumatologist that is knowledgeable about all the aspect of sjogren's?
Posted @ Friday, January 17, 2014 11:10 AM by Marcia Davis
I just returned from primary care Doc. I also have a rheumatologist. Sjogrens is the worst. I have lost 40 lbs. Dry mouth, eyes, skin cracks n bleeds. Mouth hurts so bad with all the sores and ulcers. My hair is thinning, rashes on my face, stomach and intestinal problem, chapped, cracked lips, throat has sores. Water tastes like salt and everything tastes strange. I dont understand why there is not enough research for this condition.
Posted @ Wednesday, March 26, 2014 5:35 PM by Laura
I was diagnosed in Dec. 2013 with Primary lupus and inflammatory arthritis with secondary Sjogrens Syndrome. I have found that Plaquenil and Solumedrol worked for 3 months. Then had to add Methotrexate which takes several months to be effective. I appreciate those who are sharing their symptoms because it helps me to realize that some of my symptoms are related to Sjogrens. I am grateful to still be able to work as a nurse and a clinical instructor too. The 12 hour shifts are difficult at the 8 hour mark but able to push through to the end. I would not be able to do so if it wasn't for the medications. I used to be a runner and was teaching indoor cycle up until Jan. 2013. Never thought I would not be able to exercise. I am 44 years old and hate the limits physically placed on my body by these illnesses but I am grateful for each day I can get out of bed and find a purpose for my life. Blessings to each of you suffering with these chronic illnesses. I have a wonderful Rheumatologist and then my eye doctor has Sjogrens (so she gets it!).
Posted @ Tuesday, April 01, 2014 7:10 PM by Missy H
I was just recently diagnosed with RA and secondary sjogrens. I was diagnosed with RA in 1983, but since the doctors have said I did not have it. Now I have many problems including Lymphoma. I started having back pain 14 years ago and was told lots of differant dignoses, but a pain doctor did a discogram recently and said I have dried discs that leaked have torn. Has anyone else had this problem with their discs
Posted @ Wednesday, April 02, 2014 1:53 PM by Kate
The doctor thinks I have sjogerns, I have dry eyes and mouth. This came on three months ago and has gotten bad quickly. Every week that goes by mouth gets even dryer. If I take antibiotics my saliva comes back for a short time ,wonder if that goes with sjogerns? I have had a blood test for sjogerns but was neg. .
Posted @ Thursday, April 03, 2014 2:42 PM by john
Blood tests fail. Mine was neg. as well! You need a salivary gland Biopsy. They take a small gland from inside your lip. It is painless. That is the only true way to tell if you do indeed have Sjogrens
Posted @ Saturday, April 05, 2014 12:03 PM by Kate
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Anyone know of a good dr who is knowledgeable about sjogrens in the eastern central area of Florida ( Orlando/daytona/st augustine)? I need help badly and can't seem to find knowledgeable care. In bed now- too weak to elaborate. Thank you so much, 
Sincerely, 
Janel janelathotmaildotcom
Posted @ Saturday, May 24, 2014 9:26 PM by Janel
Hi, I was diagnosed with sjogrens & my nervous system is affected. My hands, feet, thighs and face felt like needle stabbing and burning. My jaw was in so much pain, finally after probably 6 doctors and my husbands demands on the doctors to figure this out. I had the biopsy and came out positive for sjogrens I went to UCSF and had a cat scan which showed I have RA in my jaw. I'm on plaquenil and nortriptyline for the nervous system involvement. I am also blessed I have a job which if I am in a flare it's no problem to work from home. The unknown was very hard and I am in pain everyday. However, the nortriptyline helps. I have a wonderful rheumatologist who does listen to me. But it took being my own advocate for my health. I have a new symptom is a wired rash on my eyelids, underneath my ears on my neck, one arm & one leg. Go figure.lol I'm seeing my doctor in a couple of weeks. I was diagnosed in 2009 and have had days I'm in tears, but my wonderful husband swoops me up and it's all good.
Posted @ Friday, June 20, 2014 9:31 PM by Stephanie
I was diagnosed with RA and secondary Sjogrens last fall. It has taken 6 months for me to get an appointment with a Rheu. She said a third Auto immune shows up in my blood test but can't pinpoint what it is. My most disturbing systom is difficulty swallowing and bad balance. I also have dry eyes periodical rashes fatigue muscle and joint pain. I started taking plaqlanil two weeks ago. Haven't seen any change yet.
Posted @ Sunday, June 22, 2014 12:39 AM by Paula
I have sjs and need disc fusion at l4 l5 and l5 s1. What complications are going to come from the sjs and fusion surgery?
Posted @ Thursday, June 26, 2014 3:26 PM by don
I have been diagnosed with primary Sjögren's and fibromyalgia. They are kicking my butt! Idk what symptoms r from which. I'm a mess! These are my symptoms: horrible dry pastey mouth, dry cracked, fingers hurt when I bend them, nausea almost every day, my whole body hurts and aches, I forget EVERYTHING. I spend like 75 percent of the time trying to think of something or a word and can't even remember why I walked into a room. I'm constantly tired whether I sleep or not and sleep is hard to come by cuz I'm so uncomfortable. I lose my balance all the time and it is hard to get up from sitting down. I feel like I'm 90! (I'm 41) I'm sure I'm missing other symptoms but guess what? I can't remember them lol no matter what I still think it's oin my head because there's not really a reliable concrete test to diagnose Sjögren's or fibromyalgia. All I do is take pills to get thru the day. I'm constantly complaining about how awful I feel. I would think 
My family would be sick of hearing me. I'm a walking disaster. HELP!!! Thanks in advance... 
Posted @ Wednesday, July 16, 2014 2:04 PM by Jody Moxley
I can sympathise with your symptoms and cognitive issues, its really frustrating to forget your words and take forever to process the simplest of tasks. Good Times has to come sometime.
Posted @ Thursday, July 17, 2014 9:58 AM by Yvonne Dunn
I was diagnosed with sjogren's 2 yrs ago. I'm still trying ing to understand my symptoms. The drs. answers are different from what I read on line. Before diagnosed, I complained of multiply symptoms: brain fog, GERD, IBS, joint and muscle pain, sensitivity to sun, sharp eye pains, including the dryness of eyes, mouth and skin, ect ect ect. The dr. only associate the dryness to sjogren's, but some of the people with the disease seems to have experienced the same symptoms I have described. For 31 yrs I was a blood donor, but was recently told I can't give blood any more because the detected that I may have hepatitis, but my dr wasn't able to confirm...my blood test were negative for it when he tested me. I am really greatful to have found this forum. Pls., someone help me to understand what is going on. I recently began taking 2 TBL spoons of blackstrap molasses in 8 oz of water (sometimes I add 2 TBS of raw applecider vinegar). Since taking this the GERD and the IBS has improved; and my skin's moisture (including mvaginal dryness) has improved and my hair is not as brittle. I believe it is a result of taking the molasses, but can't prove it.
Posted @ Saturday, July 19, 2014 4:06 AM by Avis
Diagnosed with SJS several months ago. I' m shocked by the lack of comprehensive good information. Also have experienced the frustration of trying to get information from my rheumatologist who has to complete the visit and move on to the next quickly, dismisses my symptom descriptions as uninteresting now that she has a diagnostic label for me, and prescribes plaquenil and gabapentin and says I'll see you in 3 months for blood work. The reality is that I must educate myself, track my own symptoms, and find my own way back to health. I have lots of neurological pain and tingling in arms, legs, face. 2-3 rounds of diarrhea after meals. Sudden extreme fatigue or narcolepsy. Heat flashes followed by cold fingers/feet Raynaud's phenomenon. Dry mouth, eyes. Itchy skin. Skin slow to heal. Periods of mental confusion / exhaustion which do resolve after 1-3 hours with rest. Here's what is working so far. I am on extreme anti inflammatory diet. (Not all anti inflammatory diets are the same!). I eat raw or cooked vegetables, fruits, white meat chicken, fish, unsalted dry roasted almonds, walnuts, chicken broth. No eggs, cottage cheese, dairy except small amounts of plain chobani Greek yogurt which has live and ACTIVE cultures. No alcohol. No sugar at all, no soda, no diet sweeteners. No grains for now except presoaked rice in very small amounts. No soy products (tofu, soy milk). No legumes (beans, peanuts) - I miss them but they were causing a reaction (probably lectins). No "nightshade" vegetables: tomato, red / green peppers. Yes purple potatoes and sweet potatoes in moderation, no white potatoes. 1 pat of butter a day maximum - I extend it with flax seed oil. The only cooking oils I use are virgin coconut oil and olive oil, no safflower or corn oils. Yes flax seed oil but not for cooking. This is hard but doable because I am frightened by the disease and motivated by the fact that this way of eating is slowly calming the inflammation in my body! I am slowly healing - the heat flashes are calming down and brain fog episodes easing. Only been on this eating plan for over a month so far. The amazing thing is that i can try a food and see how it makes me feel. A few experiments with hard boiled egg, beans, cottage cheese made it clear I cannot eat these, at least right now. I miss orange juice. I hope to add in small amounts of hard cheeses at some point.
Posted @ Sunday, July 27, 2014 10:45 AM by Annie M
issues with nausea. Constipation always,just plain tired.
Posted @ Wednesday, August 13, 2014 9:36 PM by bev
Yes I have sensitivity to odors as well.
Posted @ Thursday, August 14, 2014 9:40 AM by Kathy Engel
I have rashes that are on my shoulders my wrists .. The area where my elbows are... They are small bumps that itch like the dickens... Which is no fun in the Houston Heat
Posted @ Friday, August 22, 2014 12:16 AM by TJ
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