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Fatigue Fighters in Sjögren’s

 
Fatigue

Fatigue is one of the most prevalent and disabling symptoms of Sjögren’s. Here are the Sjögren's Syndrome Foundation's top 5 tips that can help you cope:

  1. Know your limits and pace yourself. Plan to do no more than one activity on your bad days. Try to do more on your good days, but don’t overdo it!
     
  2. Turn your friends and family into a support system by educating them about what you are going through and how Sjögren’s fatigue can come and go. Then, ask them to be prepared to do one or two chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
     
  3. Get your body moving every day! This may help not only your fatigue but also your chronic pain, poor sleep and depression. Start with five minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional two-to-three minutes each month up to a maximum of 25 minutes daily. If you have a heart or lung condition, consult your doctor first.
     
  4. Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day.
     
  5. Work with your doctor to find a treatment for your fatigue by identifiying a specific cause that may be adding to your symptoms. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, hypothyroidism, muscle inflammation or side-effects of medications.

Share with us below what you’ve found the most helpful when managing your Sjögren’s fatigue.

Learn Sjogren\u0026#39\u003Bs Coping Tips From a PatientDownload the SSF Self\u002DHelp Booklet  

Comments

I started drinking alkaline water and it helps the fatigue tremendously! I have lots of energy that I haven't felt in years. I'm hoping it will help my dry eyes eventually.
Posted @ Thursday, January 16, 2014 2:13 PM by Heather V
Not allowing myself to get hungry helps, so I eat throughout the day. I've also found that eating lots of protein helps, so I start everyday with a big serving of meat (turkey, ham, bacon, and/or eggs), ad make sure to have mostly protein at every meal and as part of snacks throughout the day. This includes plant-based protein, as well as animal-based.
Posted @ Thursday, January 16, 2014 2:16 PM by Elise
It is extremely important for people with Sjogren's Syndrome to understand that inflammatory damage can cause dysautonomia or POTs. This condition can be extremely debilitating and disabling. It took 4 years for me to get the diagnoses of dysautonomia as my health continued to spiral downward. 25 to 35% of Sjogren's patients will suffer with dysautonomia. There are no cures but there are treatments, including IVIG, steroids, Florinef etc. Check out dysautonomiainternational if you suspect this condition. 
Posted @ Thursday, January 16, 2014 2:21 PM by Lynne Cherkaoui
Heather, where do you buy the alkaline water? I haven't heard of that before, but anxious to give it a try. Thanks! 
Posted @ Thursday, January 16, 2014 2:22 PM by Betty M
I, too, am interested in where one finds alkaline water. Can we treat water with something to make it alkaline? Inflammation is one of my primary symptons.
Posted @ Thursday, January 16, 2014 2:41 PM by Maj R
I need a support group! None to to found in my area.What can you do when family and friends basically abandon you! They think you're faking it!??
Posted @ Thursday, January 16, 2014 2:52 PM by rose bonaventura
Rose- I too need a support group and the only one in my area is 40+ miles away. Maybe we can be email supporters of each other. I understand what you mean by feeling abandoned. My husband of 31 years has basically just given up on me. Feel free to email me directly anytime and hang in there! 
Posted @ Thursday, January 16, 2014 3:31 PM by Kathy D
I think power naps help me the most....especially if I plan to do something in the evening. Plan my day very carefully. Prioritize tasks.
Posted @ Thursday, January 16, 2014 3:34 PM by Emily Adney
I've had Sjogren's many years and have been gluten free year and half. Helps tremendously. 
Supplements to correct deficiencies have also helped.
Posted @ Thursday, January 16, 2014 3:51 PM by Corine P
If you life in/near Lake Mary, Fl. 
I have a support group there. 
I too am interested in Alkaline water and where you buy it.
Posted @ Thursday, January 16, 2014 4:00 PM by Virginia
Thanks for this service. Would like to subscribe to blog. Thanks
Posted @ Thursday, January 16, 2014 4:22 PM by Corine P
I am new to all this and overwhelmed. Any advice would be welcome.
Posted @ Thursday, January 16, 2014 4:52 PM by Mary
I too have sjogrens it comes and goes.I have a lot of pain dry eyes and mouth. People don"t seem to understand so I keep it to myself. I live in Fl. Port St. Lucie and I am looking for a support group. Thanks for any help. God bless Diane
Posted @ Thursday, January 16, 2014 5:04 PM by Diane
http://www.aqualiv.com/ 
 
Link for alkaline water.
Posted @ Thursday, January 16, 2014 5:17 PM by Steve
I have a combination of sjogrens ,lupus fibromyalgia .i feel like I'm by myself and basically am .in need of a support group
Posted @ Thursday, January 16, 2014 5:48 PM by Denise
Hi I'm Yolanda and I was diagnosed with Sjogren's 2 years ago. Chronic severe fatigue is my worst symptom. It indeed has been a journey. I have to say that for me Plaquenil and Cellcept have helped to improve my fatigue symptoms. However, I suffer everyday from chronic fatigue and malaise. Pacing is a must for fatigue sufferers and not overdoing things. I can no longer do the hard chores so I have to get help. I've managed to budget Merry Maids housecleaning service for the more difficult chores that I can no longer do. That has been a blessing. I do my best rest when I need to and do light chores on my good days. And I journal everyday which helps me emotionally. I do light Yoga which helps with the Fibro symptoms. I found the book Tales from the Dry Side, authored by Christine Molloy (who also has Sjogren's) inspiring and informative. The stories tell and show that we are not alone in our journey. It's a great book available on Amazon.com. Yolanda Martinez
Posted @ Thursday, January 16, 2014 6:43 PM by Yolanda Martinez
I would imagine that apple cider vinegar serves a similar purpose as the alkaline water, it makes your body more alkaline. It really helps me when I am fatigued. Make sure to get the kind with the mother in it. Also, going to bed and waking up at the same time everyday helps tremendously!
Posted @ Thursday, January 16, 2014 7:13 PM by Jessica
Alkaline water is great for hydration plus preventing cancer, you can find it in any supermarket. I have Sjögren's syndrome, I'm 28 and very active. The best decision I could make is being vegan. It's incredible how my new diet helps me getting my energy levels high, my antibodies low, cholesterol and sugar levels optimum and having a plant based diet also helps to be hydrated which helps me with the dry eyes and dry mouth. Kale, spinach, mushrooms, macadamia nuts and Caju nuts are a great source of protein
Posted @ Thursday, January 16, 2014 7:21 PM by María Arteaga
I always squeeze lemon juice into my water. Does that count as alkalizing it?
Posted @ Thursday, January 16, 2014 8:38 PM by Nata
I have had sjogrens for about 8years now I also have celic so this makes it twice as bad. My worst systom is dry eyes and mouth. I do stay on a gluten free diet because of the celic I don't know if this helps. I do get fetigue but I think the dry eyes and mouth are the worst.
Posted @ Thursday, January 16, 2014 8:44 PM by Lillian Layton
I'm 62 and know I have had Sjogren's Syndrome since I was 11 years old, possibly even younger. I had a husband, three children, and a full time job with the Federal Government. When I turned 40, I was SOOO tired, I crawled into bed when I got home from work. It caused tremendous marital problems. My husband said I was the laziest person he had ever known. I went to 20 different "ists" trying to find out what was wrong. Finally, the last one suggested a psychiatrist. I went to see one and she told me there was nothing mentally wrong with me and she was sure I had an undiagnosed medical condition. Not long after, I saw an article in the paper about a little local boy who had been to NIH and they could not find out what was wrong. In desperation, his mother took him to a Family Medicine Physician in the area. She was able to figure out what was wrong with the boy. So, I made an appointment with the doctor that was mentioned. She asked the same questions as the other doctors with one exception, "Is there anything everybody else you know can do but you?" I said, "Yes, I can't blow up a balloon, and I can't swallow anything without water." She said, "I know what you have and there are blood test for it." Fortunately, I had a positive ANA, positive SS-A, and positive SS-B. I might have been diagnosed sooner but if you have had dry eyes and a dry mouth most of your life, you don't know they are dry since it's normal for you. After diagnosis, I went to a Sjogren's Syndrome support group. I'd like to be able to say they helped but all they wanted to do was help me complete disability forms. I wanted help in figuring out how to keep working so I never went back. Fortunately, I found one of the best rheumatologists in the country plus the Federal Government provides wonderful health insurance. My husband thought SS was a "made-up" disease so I wound up getting divorced. There was no question that I had to keep working if I wanted to keep custody of my children. We shared the children; each had 50% custody. When I was 49, I petitioned the government for classification as an employee with a disability. They wound up sending my records to the Pentagon. Surprisingly, they approved my disability status. So, for the last 10 years of a 40 year career, I had reasonable accommodations at work. As afar as medications, I was originally on Plaquenil, however, after 15 years, test showed my retinas were affected and I had to stop taking it. I also take OTC Mucinex, Allegra, and vitamin D. I take prescription folic acid, Zantac, Klonopin, Xanax, Sporonax, Celebrex, Evoxac, Restasis eye drops, and Adderall. From time to time, my physician has prescribed other medications but I had to quit them or didn't like the side effects. I had beautiful teeth and now I have 28 beautiful crowns. This year, I stopped eating sugar. The doctor said NO ASPARTAME so the only soda I can drink is Diet Rite Zero. I quickly dropped 25 lbs. I walk about 30 minutes a day, get lots of sleep, and have little stress. Since people with SS have 44 times the normal chance of getting non-Hodgkin's Lymphoma, I make a daily self-assessment to make sure nothing feels different. I am retired now and am glad I had a doctor who helped me be able to work so I don't have to worry about money in my retirement. I take care of my grandbaby one day a week and life is pretty good for me now.
Posted @ Thursday, January 16, 2014 8:50 PM by Karen
Can anyone tell me where I can get Biotene spray? My DDS had throat cancer so he knew what it means to have no saliva to swallow & he recommended it as much mor helpful than anything else. It has recently been recalled, so it's not on Amazon or any online store nor in Walgreens, Walmart, etc. Just an empty space where Biotene Spray should be & my mouth & tongue are so painful/dry. Cannot even sleep at night due to the dryness. Need some relief! Help!
Posted @ Thursday, January 16, 2014 9:15 PM by CT
Oh yes, forgot to add; Salagen doesn't work really well for me. Sometimes it does nothing, sometimes it actually makes my mouth dryer (if that's possible!) & sometimes it makes me sweat & once in awhile I get a little saliva out of the deal. Overall not too effective. Evoxac isn't covered by my insurance & would cost almost $400 a month. (it didn't work too well, either). This is miserable.
Posted @ Thursday, January 16, 2014 9:22 PM by C T
Karen -- your comments really hit home with me! I'm never without a water bottle and when I go to a restaurant, the waiter usually gets exasperated and ends up bringing a pitcher of water to the table after refilling my glass several times. And I've been to the ER for corneal abrasions. I've had salivary gland infections -- and when my eyes really hurt during pregnancy, it was diagnosed as pregnancy-related iritis. Looking back, I see all sorts of symptoms of Sjogrens for years, but never thought they might be connected. I'm kind of angry at the ophthalmologists who treated my corneal abrasions and installed punctual plugs repeatedly (pre-sjogren's diagnosis) never suggested that I might have an underlying condition to deal with!! Thanks to a great internist who wanted to probe a little deeper when my bloodwork came back a little off. I was positive for SSA and SSB (or whatever the two tests are) so the diagnosis was a no-brainer!  
Posted @ Thursday, January 16, 2014 9:41 PM by Carol
I'm a middle age male with Sjogren's. I have all the symptoms. The eye's, mouth, and throat are really annoying, but the fatigue is the worst.  
I also run fever daily. I had sought doctors help for years before diagnosis in 08. 
I appreciate the post by Lynn on Dysautonomia, as I've experienced symptoms described, and I'll research that some more. 
And I too, feel very detached from family and friends. I simply try to remember that it could be worse! 
Oh, and I recently changed my diet, eliminating as much sugar as possible, along with yeast, due to chronic infections. It's worked! And I lost weight!  
I added a B vitamin, some garlic, and a probiotic, and believe it's helped tremendously.  
But alas, I still need more help. I will continue to search, and believe I'll find more answers.
Posted @ Thursday, January 16, 2014 10:20 PM by Rick
Carol, I've had similar problems. When I was 11, I was at a Girl Scout Camp in Utopia, Texas and they thought I had mumps. They sent me to a country doctor and he recognized that I had stones in my salivary glands. They never told my mother and I didn't think it was a big deal so I never told her, either. I too have had salivary gland infections and corneal abrasions. They told me to stop using my fireplace! One of the "ists" decided I was depressed so they tried numerous anti-depressants on me. Every one of them had awful side effects that really did make me depressed. So, I quit going to him. I ALWAYS request a copy of my lab tests. I know that when I was in my 30's, I did not have a positive ANA; so, I know the blood work can change. I never realized I drank water when I ate. My husband's great aunt told him to tell me it was rude to "wash food down." I tried as hard as I could but I just couldn't eat without drinking something and still can't. 
 
C.T.- I tried Salagen, too. About 30 minutes after I took it, I felt like there was a squirt in my mouth but that was it. Evoxac has a longer lasting "all-over" effect and helps me get fewer vaginal yeast infections. I have been frantic because everybody (CVS, Walgreens, COSTCO, Giant) has been out of Biotene Oral Balance Dry Mouth Moisturizing Gel since Thanksgiving. I even took a bottle of corn oil to bed and swished that in my mouth. Finally, I found a Safeway that sold Oral Balance Gel (for $5.69 a tube). I bought all they had. The Safeway also had Biotene Oral Balance Dry Mouth Moisturizing Liquid, which I had never seen before. It doesn't taste bad and it works pretty good.
Posted @ Thursday, January 16, 2014 10:48 PM by Karen
I have not left my house, unless its the doctor or dentist. No one understands. I feel like I am alone, and I've done this to myself. I just don't want to live like this. It's not living. I've downloaded the booklet and I'm going to try the tips. I pray this helps. I wish I had a support group. There are none in Michigan. My heart goes out to you all.
Posted @ Thursday, January 16, 2014 10:57 PM by June
The more I find about Sjogrens the more I realize I have had this for along time before being diagnosed. Now I want to understand it and get the support of others with this. I do not know of any support groups in my area and not sure how to find one; also looking for all ideas on the fatigue and what to do about it...I do not feel like the same person I used to be.
Posted @ Thursday, January 16, 2014 11:01 PM by Joan Kincade
For the dry mouth, I found the Biotene helped a little.  
I use Arbonne Pure Mint tooth paste and it helps the dry mouth SO much.  
I didn't realize how much until I ran out and went back to the other stuff for a week. I thought I was in bad flare, because I was so dry, could barely talk without taking sip of water. Got the Arbonne again and it dawned on me, that's it!  
Gluten free, dairy free is also big help.
Posted @ Thursday, January 16, 2014 11:27 PM by Heather Vandemark
thank you, Karen. I will try to find the gel since no one has the spray. I too go nowhere without my water bottle. Forgot it once & panicked a little. June, the good news is, not all days are quite as bad as your really crappy ones...you get a tiny reprieve now & then. The bad news is, the good days aren't like they used to be and they don't last. But it makes you grateful for the tiniest relief. I too use restasis & retain & have had punctal plugs over the years to no avail. I just take this all one day at a time. sometimes the fatigue hits so suddenly I think I hit a wall. Until this diagnosis I just thought it was due to aging (I'm 60-something & never was this old before...at least not that I remember) I have one piece of advice for us all: laugh every day. Make sure you do.;)
Posted @ Thursday, January 16, 2014 11:43 PM by ct
I developed Sjogren's Syndrome during my pregnancy in 2010 , the whole of year 2011 I struggled to find out what it was that was wrong with me because I did not feel well , the doctors I visited did not take me seriously at all and just wrote out antidepressant medicine to me , but I never took them because I knew i was not depressed. Doc No. 14 that I visited was the first to really fault search me . He took an ANA test on me that turned out to be positive with positive SS- A and SS -B. In early 2012, I received my diagnosis, primary Sjögren's syndrome. What I suffer from most are dry eyes and severe fatigue that totally paralyzes me . I also have symptoms from my head, I sometimes feel dizzy, irritated and heavy in the head. as if my head not really want to go with the rest of the body. This is very hard for me , and has made ​​me into a person I do not recognize ! Has anyone else these problems with head? Do you have any tips on how you are doing to feel better in head and better with the serve fatigue ? I would be so grateful for the tip! <3...Anna/Sweden
Posted @ Friday, January 17, 2014 2:17 AM by Anna Jansson
Rick, I am glad that this information might help you. My original symptoms were unexplained fever, debilitating fatigue, joint and muscle pain, dry eyes and colitis. Lymphocytes imbedded in my colon causing lymphocytic colitis with infection and chronic diarrhea. I started having problems standing, driving and sensation that I was going to faint. My feet were turning purple due to blood pooling which is common with Dysautonomia. I also had a racing heart and fainted at a restaurant. For years I told my Rheumatologist about these symptoms. I began developing rashes and severe headaches. A skin biopsy revealed MCTD. My family doctor reffered me to the Cleveland Clinic because I was declining rapidly. I had once been a combat Army Medic and a Pharmaceutical Sales Rep in excellent health. Dr. Yao at the Cleveland Clinic diagnosed me with Dysautonomia or POTs. I am not much better, but at least the rapid decline has been contained. I felt like I was an unhealthy 99 yr old. I had slurred speech in the evenings and cognitive impairments. I believe the Florinef has helped with blood flow to the brain. I can relate and empathize with all of you. I also have positive ANA, SSA, SSB, Anticentromere and ds DNA autoantibodies. It is not in your head. I am fully disabled at age 50 and I would give anything to have my pre-disease health back. If I can help any of you get a quicker diagnoses to prevent further damage than my suffering has served to help others. God Bless all of you who are fighting this hard battle everyday. Find support and be gentle with yourself. Lynne 
Posted @ Friday, January 17, 2014 7:05 AM by Lynne C.
Anna, your dizziness and heavy feeling in the head are common with Dysautonomia. I felt like I was on an amusement park ride for the last 6 years. Sjogren's causes small nerve damage that regulates blood flow and the bodies autonomic nervous system. You can find information at DysautonomiaInternational or POTs online. They are a great support network and have up to date treatment info. A healthy, young attorney started the site after she became mysteriously ill and bedridden. It took two years, and a positive lip biopsy that confirmed that Sjogren's Syndrome was the reason for her Dysautonomia. Few doctors recognize the signs to link the two diseases together. Hope to help others out there who are suffering with no answers and little support. Take Care. Lynne
Posted @ Friday, January 17, 2014 7:18 AM by Lynne C.
Lynne- I also have nerve twitching coming o go anywhere on the body, I developed Sjogren during my pregnancy, At the end of the pregnancy, I also started experiencing irregular heartbeat. My dizziness, heavy head, nerve twitching and irregular heart beat, I have asked the doctors if they are associated with Sjogren's but they say no. Is such symptoms also linked to Dysautonomia? I've never heard of Dysautonomia before. I tried googling on it to bring up the Swedish word for it but I found no translation. What does Dysautonomia Mean? Best Regards/ Anna
Posted @ Friday, January 17, 2014 8:39 AM by Anna Jansson
Anna Dysautonomia means dysfunction of the autonomic nervous system. That system regulates blood pressure, temperature, sweating digestion, vascular constriction and so much more. The inflammation of Sjogren's Syndrome can cause systemic damage to small nerves that regulate the autonomic nervous system. Up to 35% of Sjogren's patient have dysautonomia. Look upwww.Dysautonomiainternational.com for more information. There are online support groups for Sjogren's patients with Dysautonomia. A Qsart small fiber nerve biopsy can be a diagnostic tool. Go to the site and look up all the information. Let me know if I can be of further assistance. Sjogren's is a very systemic disease in some patients and they need medical intervention to prevent further damage to the body. Take Care. Lynne.
Posted @ Friday, January 17, 2014 8:56 AM by Lynne C.
I run an International support group on Facebook called Sjogrens Support GB
Posted @ Friday, January 17, 2014 9:01 AM by Magpie
For those looking for a support group, there is one on facebook that has helped me a lot. It is Sjogren's for your eyes only. It is a closed group and you have to request membership. Only can get in with the disease. It has been very helpful for me.
Posted @ Friday, January 17, 2014 11:30 AM by Donna Manuel
Thank you all for sharing, I am getting educated by your posts.
Posted @ Friday, January 17, 2014 11:47 AM by Linda
Daiichi Company's product, Evoxac, was subject to a period of patent protection. As noted in the agency's publication titled "Approved Drug Products with Therapeutic Equivalence Evaluations", U.S. Patent No. 5,340,821, expired on July 7, 2013. The generic for Evoxac is called Cevimeline Hydrochloride 30 mg Capsules. Now that Evoxac comes in a generic form, maybe more people will be able to afford it. 
Posted @ Friday, January 17, 2014 3:15 PM by Karen
Thanks for the info, Karen. Costco Pharmacy told me last November it was not in a generic. With this info, I will return to them & see what they can do. You have been most helpful.
Posted @ Friday, January 17, 2014 5:11 PM by CT
Lots of great information. just when I thought I was learning to manage my lie with SS-B, my health tanked again. I ended up being diagnosed with Lupus last week. I just can not keep up with life!! Hearing I am not alone really helps.
Posted @ Sunday, January 19, 2014 3:06 PM by dawn
So much great information! Have never heard of Dysautonomia, but it would explain so many of my symptoms; The dizziness that gets a different label with each doctor. 
I. too, have just had Lupus show up as a rash on my arms and legs. 
A couple of suggestions I haven't seen mentioned; sunblock clothing and Xylimelts. They are time released discs that adhere to the inner cheek and stimulate saliva. One disc lasts(for me)up to 2 hours. 
I use one at night and, literally, can't talk without their help.  
Thank you all for sharing, I'll be back. 
Erma
Posted @ Sunday, January 19, 2014 9:42 PM by Erma Lawton
So happy to hear that many of you received information on Dysautonomia and can now share that info with your doctors. Patients with Sjogren's should automatically be tested for dysautonomia and patients with Dysautonomia should be tested for Sjogrens. It is important for Sjogrens patients to educate themselves about the systemic manifestations that can affect and damage any organ or system of the body. I am on Florenif which is a type of steroid that increases fluid retention and blood volume. This helps with the constant vertigo, racing heart and inability to stand. There are times when I need a walker or must lay with my feet elevated, but at least I'm not bed bound like some who acquire dysautonomia. MS, Parkinson's Disease, Lupus, Lyme Disease are a few of the root causes for Dysautonomia. Stay connected and get to doctors that understand and will treat you. I wasted away for six years when something could have been done to reduce the damage and help me function. Take Care all my fellow Sjogren Soldiers!!! Lynne 
Posted @ Monday, January 20, 2014 10:06 AM by Lynne Cherkaoui
June... I live in Michigan and have had SS for 2 years. Please feel free to contact me. I would love to talk!
Posted @ Monday, January 20, 2014 12:07 PM by Kelli
I have had an increase in symptoms. Recently diagnosed with lupus as well , now. My main concern is the shortness of breath, heart pounding hard with little to no activity. Some days are much worse then other days...anyone deal with this? What could it. Dr says he does not know...I am feeling very frustrated
Posted @ Monday, January 20, 2014 12:47 PM by dawn
Dawn, Please read my post about Dysautonomia. I, too, had unexplained SOB where I couldn't even take a phone call or go outside in the heat. Just standing with no exertion made me SOB. Dizziness, fainting or feeling like you might faint are signs of Dysautonomia. Go towww.DysautonomiaInternational.com. You will have an Ahah moment. Suddenly all your symptoms will make sense. 35% of Sjogren's Patients also present with Dysautonomia. It is believed that the inflammation from autoimmune attacks small nerves that regulate the bodies autonomic nervous system. The arteries don't get the message to constrict and the blood pools in the body. The heart begins to beat harder and faster to compensate and keep blood going to the brain, but it still leaves a person dizzy. Hope this helps. I really want to help Sjogren's patients get the best care and educate the medical community about this connection. There are hundreds of clinical studies that link these two conditions. Best Wishes. Lynne. 
Posted @ Monday, January 20, 2014 1:00 PM by Lynne Cherkaoui
I think the most important part is informing friends and family. It's so hard when they don't understand, and most of them don't.
Posted @ Tuesday, January 21, 2014 9:34 PM by Michelle
I have sjogrens for 15years. for all the dry mouth water with a slice of lemon is great, drink water all the time really helps me/just be positive and put yourself with people who love you make life simple it will help as will wine...karen
Posted @ Wednesday, January 22, 2014 12:33 PM by karen
Kelli, 
I got your email, but not sure how to contact you. I live in Michigan and I can't find a rheumatologist that has any sjogrens knowledge. Do you have a good doctor?
Posted @ Wednesday, January 22, 2014 1:10 PM by June
Does anyone know a good Rheumatologist that has knowledge of sjogrens and fibro treatments and meds besides Neurontin and plaquenal which are ineffective for me? I would appreciate any help. Live in Maricopa, AZ, close to Phoenix, Chandler, Casa Grande, Mesa, Tempe.
Posted @ Friday, January 24, 2014 1:35 PM by Linda Butts
I am so thankful that I found this website. I just found out I had sjogrens and I really feel like death would only be a favor to me at this time. Like my life can in no way improve and I am at the tip of the edge using all the energy I have to hold on leaving me unable to do anything else which makes the struggle pointless. I totally get that it isn't a death sentence, but I am so tired I pray for death to come in my dreams. I go in soon for treatment options, so I will hold on longer, but boy is it the test of a lifetime.
Posted @ Sunday, January 26, 2014 12:19 PM by Faith Young
@Faith Young 
Hang in there! I too have felt the same way! Depression is a big part of the battle for a lot of. The overwhelming burden of hopelessness can seem all consuming. YOU are not alone!! The best thing I did was ask a few people to really research Sjorgren and I go to a counselor 
You can do this!
Posted @ Sunday, January 26, 2014 12:48 PM by dawn
Faith Young,I felt similar hopelessness as well as denial when I first got a "diagnosis"...felt like I was in a nightmare and surely I'd wake up tomorrow & it would be gone. This is "not me". But it becomes the new reality. However, all days are NOT as bad as your bad days, and you CAN resolve not to let this nasty condition define you. I was afraid it would always be as bad as the really bad days, but in reality, you will get some breaks in the symptoms at times, although I'm sad to say it doesn't last. But you appreciate the better days (or moments--at times it's just a good moment or two), and you DO learn to work w/ what you've got, girl. Rest when you can, and see if you can change your diet. Some things make it worse, like sugar, caffeine, and alcohol. See where you can start to cut back on those, & always have a bottle of water to sip, even on the nightstand at night. There are some meds that might help, too. You are stronger than you thought you were.
Posted @ Sunday, January 26, 2014 2:41 PM by CT
@dawn and CT 
I thank you both so much for the words of encouragement and advice. It means so much more coming from people who are in my shoes. I hear a lot about how the initial diagnoses sucks. It's like your body can stop going in overdrive and rest when you finally know. Like help is on the way and it knows.  
It's not the end of the world and I'm slowly (really slowly) grasping that concept. I am just different and have to alter my life to those differences. In a few months, I will be back with advice for others on what works for me.  
Posted @ Monday, January 27, 2014 6:00 AM by Faith
it will get better and having a positive attitude does help. you will learn things that work for you and a lot of things over the counter at drug stores. some days are worse than others but you will be okay karen
Posted @ Tuesday, January 28, 2014 9:22 PM by karen
So yes i am Always a bounder searcher, but now I can't anymore I have got low oxygen and I have been in the hospital for around 1 week and now I need permanent oxygen. I have more problems i September 2011 I have 2 suregoen for coloncancer and a lot of chemo, but in September 2012 there was found a spot on my lung and a petct scan let seen there wehere more there are metaste from the coloncancer. I had evned a lot of chemo's, but there was no reaction what cure the tumors. And than I had al for years sjs, osteoporose and asthma. But I hope the oxygen helps me to get a little bit more energy.
Posted @ Thursday, January 30, 2014 3:32 PM by Richard Troost
sending you all the hugs and love in my heart. will keep you in my prayers . remember hope is a good thing sometimes its the best of things karen
Posted @ Thursday, January 30, 2014 4:40 PM by karen
Dr. Oz recommended Emu cream for pain. When my mom told me,I thought she must have been mistaken. Wallmart had 1 jar left, also comes in a spray. I will never use anything besides Emu cream for joint pain. It works, please try it!!!!
Posted @ Thursday, February 13, 2014 2:51 AM by Susan
Excelente toda la informacion. Me diagnosticaron SS HACE 1 AÑO. Hasta ahora no tengo tantos síntomas,solo cansancio y sequedad aunque a veces urticaria. Ruego para que todos tengamos alivio.
Posted @ Thursday, February 13, 2014 7:45 AM by ADRIANA SANCHEZ
I am so happy to share my finding for relief from chronic pain, stiffness, joint pain, and muscle aches and pain from lifting up my arms while sleeping or trying to sleep. Anyway I decided to try the Glucosamine from Amway and after taking a few days, I am now pretty much free from most pain, stiffness and all the other problems I mentioned above. I cannot believe it but it is true! I am not miserable like I was or drained of energy from pain! Amway is the only one that works for me as I have tried other brands and they did not work! Not trying to sell you Amway products just letting you know what I found and works for me! I hope you try and if so then I hope it works for you! God Bless!
Posted @ Tuesday, February 18, 2014 12:17 AM by Alice Hudman
I was diagnosed a month ago. Anyone live in Illinois. The south suburbs near Matteson.
Posted @ Thursday, February 20, 2014 10:54 PM by Sharon
Hi my name is Nicole and I am from Chicago. I have been going trying to find a good Rheumatologist in the Chicagoland area? Thank you in advance
Posted @ Monday, March 10, 2014 7:31 PM by Nicole Flores
I thank God for the good days. Fatigue and pain are 
almost constant. I go to the YMCA three days a week per my family telling me it was the cure.  
I have found that it has helped me mentally and I sleep better. I take power naps every day and feel better while lying down.
Posted @ Tuesday, March 11, 2014 2:53 PM by Gail Brown
I feel so dizzy while up. I have very dry eyes. I use Restasis twice a day and eye drops through out the day. My Dr gives me Vicodin but I have been taking it for so long it doesn't help much. I'm going to a specialist soon. I have peeling hands. Palms only. I don't know if it is from Sjorgrens. They start out as round little dry blisters. I saw on the SS site about  
Hyaluonic Acid Bearty Cream and I love it. It is the only thing that helps. Two 4 oz jars for 20.00. Free shipping and handling.It is so soothing for my face and hands. I have help come in every two weeks to clean. It is well worth it. Hang in there fellow SS. Gail
Posted @ Tuesday, March 11, 2014 3:02 PM by Gail Brown
Hello there,my heart goes out to all of you. I am in the same boat as you, but I am a male. 
 
I am the only male featured in Christine Molloy's Tales of The Dry Side book. My main issues are joint pain, nerve pain, and fatigue. I now have Fibromyalgia on top of the Sjogren's. I had to stop working because of the pain and confusion from all the meds. I now am collecting disability from the state and from my employer. A major blow to my ego. I have not worked in two years. 
 
My Rheumuy and neuro are switching from Gabapentin to Lyrica. I am also on Plaquenil. In addition I have sleep apnea and taking a new drug to help me sleep at night. I am so dang tired. I have been dozing off trying to type this.  
 
What I really am lacking is affection. My wife is not very affectionate and really does not understand what this disease is doing to me. I am so depressed at times. What I really want is someone to give me hugs and tell me that everything will be okay. I live in the Seattle area. If any of you live near me I would love to meet you. There are days where I just want to cry and give up. I so wish I had my life back. I would love to talk to any one of you. Joe :)
Posted @ Friday, March 28, 2014 12:52 PM by Joe Bush
Joe - I tried replying to this on email but not sure it went through. I really know how you feel needing a hug and to be told its going to be ok. My husband doesn't understand (or believe) how hard this disease is on those of us who have it. He even filed for divorce on the basis that I just don't have anything left for him. He has since rescinded, but is still very distant and unwilling to give affection. I live in Colorado mountains and so am not close enough to meet, but would be happy to talk via email if you'd like, or on facebook I am Katherine Rose Donald. Hang in there and know that you have the support of others who are in the same boat as you!
Posted @ Sunday, March 30, 2014 12:21 AM by Kathy Donald
I must say I look forward to the messages and comments you all post here. It is hard to read but I am happy to know that I am not alone. I began treatment for Sjogren's only to find that my body did not tolerate it (plaquenil). I had every side effect imaginable even though rare ones and had to immediately stop which caused more distress to my body. My adrenals are now failing me and I have to get treatment for that as well, this is all happened so fast and I am only in my 20's. When I feel my worrse I come to this site and read the comments to know it is not just me going to things like this. Even though I have an amazing husband who has been with me since day one he still doesn't understand the pain I go through on a daily basis, I thank you all for sharing your stories no matter how bad. It inspires me to keep going. I hope Mr.Joe gets his affection and Mrs. Kathy's husband shows compassion because that us often the reason I am able to wake up in the morning.
Posted @ Sunday, March 30, 2014 6:38 AM by Faith Young
@Faith Young, your name says it all. "Faith" no matter what your beliefs have Faith that there is a purpose for you and survivors like us!! 
You are so very young still, it took me a long time to understand the new ways of my body. Pace yourself and fill your life with positive affirmations, loving friends and family and above all continue to love yourself! 
Your post is very sweet....good luck to you!
Posted @ Monday, March 31, 2014 10:32 AM by dawn
I have SS and am 44 yrs. old and am not lazy.... I am wanting to know so much about this...
Posted @ Tuesday, April 01, 2014 8:48 AM by april filips
Hello everyone, 
I was just recently dx with Sojgrens a month ago and sometimes what a lonely place it could be. I have not worked in six years thinking that my back was my main issue. My pain management Dr encouraged me to get tested for lupus. But it actually was Sojgrens, looking for any ideas that would help with dry mouth. But most of the time the only thing that you can do is deal with it. I am blessed to have a great family who has always been extremely supportive.
Posted @ Monday, April 07, 2014 4:33 PM by Antoine Byers
I have both R.A. and Sjogren's and would enjoy getting emails from friends with this disease. I live in the Atlanta area. I would like to find a Doctor who understands this disease better and also a Dermatologist for my dry skin. It has also affected my lungs and I am now on asthma meds. Pretty scary. I do feel that diet helps. I eat very healthy and stay away from sugar as much as possible. I am not a vegan but eat mostly chicken and fish, fresh organic vegetables and try to keep my weight down. I also go to a gym and work out on the elliptical machine. I really have to push myself but I really think it helps. For me B12 has given me a boost also. I work only 2 days a week and have a job where I am on my feet. When I get home I have to go to bed right after dinner. I am so exhausted. My husbands says quit but I like my job and it keeps me going. I too am on Plaquenil and usually 2 to 3 times a year I have to get a steroid injection. I have found this web site helpful with all of you contributing. Thanks for sharing. Chris
Posted @ Sunday, April 13, 2014 7:03 PM by Chris Reynolds
I also have been encouraged by these comments more than anything else I have read. I haven't been formally diagnosed. My rhumatologist said she was thinking Sjogrens syndrome and started me on Plaquenil. I go for more blood work in May. I hit a wall on Saturday, feeling completely exhausted after doing laundry. I decided if these treatments don't give me some relief, I see no point in continuing living. I rarely am able to work a 5 day week and am running low on sick days. I don't have a support system. My only family here is my mother and she is 70, and I hate to ask her to do anything for me. I have been incredibly hurt by friends who told me I could count on them, but when I asked for help around the house, I was ignored. I do feel extremely grateful for the PCP and rhumatologist I have. They are wonderful women who I really feel have listened. I developed Raynaud's and a nurse told me to go to the ER (it was a Sunday) to make sure I didn't have a blood clot in my arm. No blood clot, of course, but a positive ANA test told them to keep looking, but after she decided I didn't have lupus, she sent me to a rhumatologist. I felt extremely heard there too. I really feel women dr.s are more attentive and less likely to shrug off concerns. Since I live in Johnson City, TN, NOT a metropolis, I do feel really fortunate to find such great care, but I really felt that if I won't feel any better, and have so little help, there is no point in trying to continue to struggle. I really admire those of you who have dealt with this for years, especially not knowing what you had. Looking back I can see certain symptoms for years, but the overboard fatigue had really made me feel like a pathetic loser. Yes, I do have a shrink. I had thyroid cancer a decade ago, and have seen a counselor off and on for depression and I take medication for depression. If I'm going to survive, I need help making a plan other than killing myself in July if this all doesn't work out. Will I have to quit my job? I am a high school teacher. I already quit a part time weekend job I had because I was so tired. I also have 40+ chickens, ducks and geese, and, although most days it's not too much to keep up with, do I need to give that up as well? I am tired and in pain daily, which sounds pretty typical. The rhumatologist said I do have the swelling in the joints that points to arthritis. I am single, which I thought was a hindrance because I didn't have anyone living with me that could help, but it seems that maybe being single is a blessing since several of you mentioned them kicking you when you were down. Deplorable. No one has mentioned constipation. I assumed that was one by-product of being drier, but maybe that's just me. Anyway, if someone could give me a hint as to what I need to be thinking as far as a vocation, I would appreciate it. I have looked for other "less tiring" jobs, but here in Appalachia, most work is blue collar labor. I can't believe I am 43, with a master's degree and unemployable, but that's where I am. Faith, I admire you so much for sticking it out. Tell your hubby he's great too. He seems to be a rarity. Thanks much! I look forward to hearing from all y'all.
Posted @ Monday, April 21, 2014 5:13 AM by Deb Eb
Hi Deb, I am sorry that you are going through all of this. Having an autoimmune disease can be very debilitating. There are support groups that you can go to. Look at the Sjogren's Web site for a support group in your area. I have been on disability as not able to work due to my Sjogren's. I have not worked in almost two years. Could you find a part-time job working at a fabric store, book store, library, or something that is not too labor intensive? Please do not take your life as there are people who can help you. I too am depressed and see a therapist. It is such a difficult disease and it sucks the life out of you, but hang in there as people do love you.
Posted @ Monday, April 21, 2014 11:51 AM by Joe
@Deb, I totally understand how you feel. I keep to myself about the disease because people look at me as young and skinny and not to long ago I was running marathons and very active. I now would not be able to run out of the house if it were on fire. One thing you have that not many people don't are good doctors. That is a great start and a great support system to have versus a professional that you go to for help telling you that you are crazy and need to seek mental attention. I am also in the same boat you are with jobs, I am working on a Master's not sure if I will ever be able to use it. I had to leave my place of employment because I missed so many days I fell behind and it was too stressful coming in on the weekends trying to do schoolwork, house work and work! It was hard to do, but I had to give it up to rest and keep my marriage from falling apart because my husband took over every chore so that I could work, go to school and sleep for 12 hours per day. Thank you for reminding me how amazing my husband is, I get into a funk and forget I have a great support system in him. You have managed to inspire me with your story because even though you feel lost and confused, you as well are still going and you have overcome many things in life!!!! you are very strong! It is always hard to witness your own strength when you are forced to use it. Keep going!!! when you get tired, come here to vent and keep going. it looks like so far you have conquered every challenge that life has given you because you are still here. Keep going and be inspiration to younger people like me who can look to you all for strength when it gets too tough. It was hard for me to respond to this because I was having a really rough day today and felt similar to how you did.... but I find strength in knowing I am not alone and can always come here for support and love. Also try Alkaline!!!!! it is amazing to say the least! It helps so much with energy! Also vit D since ours tend to always be low. I also use vit C and much water for inner moisture. I have changed my diet (it helps but the alkaline is the best) I am not feeling well because I had to stop for some test since I didn't want to taint the results. You can as well feel free to email me or even Skype or call. Please let me know if you would like to do that. Best wishes and KEEP GOING!!!!!!!!
Posted @ Monday, April 21, 2014 1:57 PM by Faith
Thanks Joe and Faith. Had a good talk with my counselor about it too. We discussed ways I can still contribute. I have taken Vitamin D daily for years since my levels are low. I'm sure eating better will help. I just can't imagine giving up potato chips and alcohol forever. I will look for the Alkaline water. I usually drink water with lime and a bit of honey in in. The closest support group to me is in Nashville, 5 hours away, but I have connected with someone who has Sjogrens in my area-a friend of a friend. So, today is a better day.
Posted @ Tuesday, April 22, 2014 10:01 AM by Deb Eb
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