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Adrienne Dellwo

Sjogren's Syndrome in Fibromyalgia & Chronic Fatigue Syndrome

By September 10, 2011

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Tennis star Venus Williams recently went public about an illness that has given her trouble for years -- Sjogren's syndrome. Pronounced SHOW-grins, this disease is common in those of us with fibromyalgia and chronic fatigue syndrome.

By itself, Sjogren's is enough to derail even an otherwise-healthy competitive athlete. Williams had to withdraw from a recent tournament because she was too fatigued to lift her arm. She told the New York Times, "The fatigue is hard to explain unless you have it . . . . And the more I tried to push through it, the tougher it got." That's something I know most of us can relate to.

What is Sjogren's Syndrome?

Sjogren's, also called sicca, is an autoimmune disease, which means your immune system is attacking your own tissues -- in this case, those tissues are moisture-producing glands. The primary symptoms are dry eyes and mouth.

However, it also comes with chronic fatigue (the symptom, not the syndrome), and possibly painful inflammation of joints, muscles, nerves, organs or other parts of the body. In addition, other areas, such as the vagina and the skin, can be abnormally dry.

This dryness isn't just uncomfortable, it can be a real health hazard. A chronically dry mouth can lead to oral infections, tooth decay, mouth pain and difficulty swallowing. Chronically dry eyes can develop ulcers.

When Sjogren's overlaps with fibromyalgia or chronic fatigue syndrome, it can be hard to spot. The key is to pay attention to dryness and ask your doctor about a it. Sjogren's is hard to diagnose, so expect an array of diagnostic efforts including an examination of your mouth and eyes, blood tests and possibly a biopsy of your salivary gland.

Sjogren's is treated differently depending on what symptoms you have. Here's more on that from About.com's Arthritis Guide Carol Eustice: Treating Sjogren's Syndrome.

The thing to remember is that Sjogren's must be treated differently than fibromyalgia and chronic fatigue syndrome, and if it's left untreated, it'll make your other illness(es) worse.

Have you been diagnosed with Sjogren's? How is treatment going? Is it hard to manage? Do you think you might have Sjogren's? Leave your comments below!

Learn more or join the conversation!

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Comments
September 10, 2011 at 9:09 pm
(1) Abot Bensussen says:

I’ve had Sjogren’s for many years now. I use Restasis for my dry eyes and it does help. I also chew Biotene gum all day long, to keep my mouth wet. My lips are peeling so I put cream on them when I’m at home. (It’s tempting to pull off the skin, don’t do it! it hurts!)

I also use the Biotene mouth spray, mostly at night when I wake up with dry mouth. I also use KY jelly in my nostrils at night, before putting on my Cpap mask. All in all I am able to handle it well.

I do forget that it causes some of my pain and fatigue, blaming fibromyalgia for most of my discomfort. Recently I took a long trip, three planes in one day, and my discs began bothering me. Now that’s a terrible pain. Just grateful for good Drs. and good medicine. Wish Lyrica didn’t make me gain weight, it should do the reverse and I’d be a happy camper.

September 16, 2011 at 6:40 pm
(2) Ewa M. Seiler says:

FMS, CFS, MPS and Sjogren.

One complements the other.
Add to this Reynauds… and IBS. So why on Earth many are still Syndromes? It is an illness.

Restasis has been with me for the past 10 years. When last winter my body was attacked and my teeth could not tolerate cold, hot, warm, and dryness was unbearable, I used what dentist prescribe: chewing gum. But this gum had TONS OF SUGAR! What happened? I got worse. My body just gave in.

So I went off sugar, wheat, lactose.
However, I will very strongly argue that is NOT A SYNDROME, but an illness that is not clearly understood by medical profession, so it is just a SYNDROME.

And Fibromyalgia is NOT NERVES OR NERVE ENDINGS WHICH PERCEIVE PAIN.

Someday we will know what it is.

September 16, 2011 at 11:00 pm
(3) misslanny says:

Not to get off the track but I had to respond to the Lyrica weight gain part. I gained 35 pounds in 5 months–7 lbs a month! And I was only on Lyrica for 3 of those months. I kept on gaining for the two months AFTER I quit. Insane. I have always been thin, 124 lbs and 5’8″, so it was a huge shock to my body. It took me 2 years to lose it. Never again.

September 14, 2011 at 2:44 am
(4) Christine says:

I believe that sicca syndrome is not synonymous with Sjogrens, but a set of symptoms related to inhibited secretion functions (eyes, nose, mouth/throat–all fluids. Whereas Sjogrens can go far beyond those symptoms with internal organ involvement, increased risk of lymphoma, cellulitis, neuritis and more–on top of flu-like symptoms and chronic pain.

I understand it is often secondary to other chronic conditions such as fibromyalgia (in my case.)

Check me on this but I think to suggest that it is merely dry skin, eyes, mouth, etc. is to belittle the plight of sufferers like myself.

Thanks

September 16, 2011 at 4:00 pm
(5) Gwyneth says:

I agree wholeheartedly with you, Christine. It is well beyond just the dry eyes, skin and mouth. I’ve had this illness for going on five years and in combination with rheumatoid arthritis and fibromyalgia, I can say that it’s not a very happy existence. There is a lot of pain and I’m not one to grab a Tylenol at the first sign of it.

The potential for organ damage is very real. The illness progresses (or stays relatively the same) differently in each person. I’m at a point where it has affected the liver as well as simple things that people don’t even think about, like swallowing.

September 16, 2011 at 6:07 pm
(6) weeroo says:

I did not read any belittling, I read into that, wow, that sounds just as awful as fibro. I know where you are coming from though, it is awful to be aflicted with a life damaging disease that no one has heard of and be told, well, I have dry eyes too! HA! Sometimes education of the public around us is a losing battle. Keep the faith, and watch the toxins, none of this stuff was as prevalent a few decades ago as it is now, ever wonder why? Look at the changes in what we clean ourselves and our houses with, and how our food is grown! Okay, stop me now……

September 17, 2011 at 4:53 pm
(7) Col says:

I’m wondering how the internal organs would be affected and if this would not only involve functioning but issues such a cysts, etc.

September 16, 2011 at 8:24 pm
(8) Colleen says:

Wow, this subject has my attention. I’ve suffered from these symptoms for a while but didn’t know it had connection with Chronic Fatigue Syndrome. There is still so much I’m learning about these illnesses. I have swollen glands, hoarseness, my eyes dry. In fact if I use contacts I constantly need rewettening drops and I can’t even use some types of contacts because they constantly fall out of my eyes they get so dry. Thanks for the info. and bringing this up for discussion.

September 16, 2011 at 8:43 pm
(9) JACKIE says:

i have had sjorgrens for many yrs, a lot of what is happening to me is now fitting in, i have arthritus, fybromyalgia,chronic bowel probs, loss of sleep, a hacking cough, to list a few. i am on meds for the arthritus ect, but not for fybromyalgia, they say they cant give me anything else, back to the sjorgrens, i use liquid tears in the gel form, and do get eye ulcers, also use glandosane for my mouth, alas i have had 3 teeth taken out in 18 months, thats without the rest b4 hand, its very hard, and very painfull day to day, but i will not give in, when i have major bad days, then i do nothing but rest, but the next day i will struggle to get out, im lucky to have a wonderful partner, daughter, grandaughter, without these, my days would b numbered, i think u know what i would mean by that. but as i say, im VERY VERY LUCKY,

September 18, 2011 at 12:56 am
(10) Deigh says:

The timing of this article is very opportune for me as I had recently seen a documentary about it and was amazed at the similarities between it and the Fibromyalgia/Chronic Fatigue that I was diagnosed with about 3 years ago. I had done a little more research and was about to see my GP to discuss with her. Now however, after reading all the comments I can see how it all ties in and I realise that it wasn’t my imagination working over-time !! ADRIENNE, articles & comments like these are great for us all as we realise that we are not alone and that some of the (seemingly) strange symptons we get are in fact a part of our ‘condition’. Thank you for your hard work & research ………

September 20, 2011 at 10:22 am
(11) Sarah says:

This article really couldn’t have come at a better time for me, too! I should be receiving my test results this week for Sjogren’s Disease/”Syndrome.”

I have been dealing with a more dry mouth than usual, severe flakiness/dryness and cracking (not chapped) of my lips and SIDES of my MOUTH (ANYONE get that? I put Aquaphor, but it’s very visible!). My eyes have been worsening for nearly 12 months now. My eyesight is the same even though it feels worse. There’s burning, reddening, dryness (not too bad…yet), etc. I can’t even read subtitles on the tv.

Oh, I’ve had FM/MPS complex, CFIDS/ME and everything that comes with it since I was 25. I’m now nearly 37. Seems we all tend to keep adding to our already long laundry list of ailments! ;-)

Hopefully, Venus Williams will become a great advocate for Sjogren’s which will ultimately help bring awareness to FM and ME/CFIDS…

Sarah

p.s.
To use the term “Chronic ‘FATIGUE’ Syndrome” is very misleading, INACCURATE and insulting. Think about it. We DON’T call Parkinson’s “Chronic ‘SHAKINESS’ Syndrome” or Alzheimer’s “Chronic ‘FORGETFULNESS’ Syndrome” as that would be COMPLETELY misleading, inaccurate and insulting…Besides, WE don’t feel “fagiue.” There’s a difference in the definition of fatigue/tiredness and WEAKNESS like we’re gradually being poisoned. We feel a “sickly weakness” along with pain, etc. If WE stop using the name CFS, maybe we’ll gain some more credibility. :) Oh, and the term “Chronic Fatigue” is even worse. Chronic is an adjective while “fatigue” is a noun…which is a SYMPTOM of pretty much every chronic condition out there. :)

September 20, 2011 at 8:39 pm
(12) Kimberly says:

Wow. Who knew? I have not been diagnosedwith Sjogrins, but have some of these symptoms. Today was exhausting and I hurt so much. Yuck!!!

I enjoy reading your posts and feel so relieved when I read them. Thankfully, we have this forum to read about what others of us go through. Thank you all and thank you Adrienne!!
I have to go to bed, but if any of you are in the Austin, TX area, and would like to talk, or any of the rest of you… My email is redhead_dsp_1@yahoo.com. Just put fibro in the subj line so I won’t think it’s spam.
Good night all!

December 12, 2011 at 7:59 pm
(13) Nora says:

I wanted to respond to Ewa. The question of ‘Syndrome’ vs ‘Disease’ was one that bothered me for a long time too. The rote definition:
Syndrome: any combination of signs and symptoms that are indicative of a particular disease or disorder.
A symptom, characteristic, or set of symptoms or characteristics indicating the existence of a condition, problem, etc.
The distinction is really small. Basically, the difference is in how well Medicine understands the illness and what is causing it.
If we know exactly what causes an illness it can, in most (not all) cases, be cured. This is a Disease.
If we don’t know what causes it, we diagnose it through the imperfect means of measuring a set of known symptoms that appear most of the time in most patients with the illness. This is a Syndrome.
There is also a distinction in how the illness is treated.
A Disease is cured, unless it has progressed too far to be cured with our medicine.
A Syndrome has no cure because the cause is not understood so cannot be stopped. So, they treat the symptoms over long term in the hope of improving quality of life and in many cases also delaying, if not halting, damage.
This means many Cancers are still Syndromes. Rheumaological Illnesses. Allergies, most Neurological Illnesses & all Mental Disorders are Syndromes.
Medically, it’s not really a bad thing to be labeled a Syndrome, it’s how society as a whole sees the general term. We need to own the term and educate others – especially doctors that refuse to stay up with the most recent research – specifically where FMS, CFS and ME are concerned. They are recognized, disabling illnesses with definitions in the ARC, and more and more research filling in our understanding every year. If a doctor doesn’t want to stay current, he/she should lose their license to practice.

December 12, 2011 at 8:12 pm
(14) Nora says:

I should probably add, I also have RA, FMS and am currently being tested for Sjogren’s.

December 23, 2011 at 1:41 pm
(15) Connie says:

I have been diagnosed with FMS and Sjogrens also have IBS. I need to know how do you deal with these things and work. I have no one to depend on but myself. Is there any kind of meds or anything that helps with the pain or fatigue. Guess that I am looking for a MIRACLE.

Am really feeling alone amd discouraged!

September 13, 2012 at 8:13 pm
(16) Theresa says:

I sympathize with all of you. I have IBS, been told I may have szogren’s and fibromyalgia. To make a long story short things that helped me without side effects to regain some of my strength back was some changes and adding some good health products. Good vitamins on the general level, lots of pro biotics, d ribose, which gives energy at the cellular level, rhodiolia which gave me energy to get through the day, boswellia for inflammation and myrhh for infections, mastic gum for h-pylori, which is gerd and mastic gum has completely eliminated h pylori rather than the 3 antibiotics they perscribe, which also causes c-difficule! Yes I have tested negative on return for GERD! . Honey and garlic everyday almost. These are just a few little things. But no more processed foods either which is good start and a lot of healthy changes has allowed me to regain a lot of my life back! Okey you can call me a health nut now but it is better than suffering all the suffering that goes with the syndromes. Even the IBS is better with all the probiotics. Oh, I still get sore shoulder, excruciating dryness but I can get through the day and move and keep moving and have a life back. Good luck to you too.

March 14, 2013 at 9:01 am
(17) NL says:

You aren’t alone, it took them years to diagnose my wife with an unusual (but severe) form of Sjogren’s. Meantime the docs told her she was crazy and/or accused her of being after drugs. They stuck her on a bunch of heavy-duty psych meds that changed her personality and damn near destroyed our marriage. They finally figured it out last year when our doc tested for Sjogren’s and found her blood markers were ten times what is normally indicated for the disease.

Having something that few people have heard of and even fewer people understand is hell.

March 18, 2013 at 11:36 pm
(18) wanda says:

I have had Sjogren’s for several years. Now I have FM. I have a great husband that does most housework, clothes washing and any thing I need. I take several meds, but I could not make it through a day without one, Evoxac, It puts enough fulid in my mouth and eyes, it is awesome. If you haven’t tried it, talk to your doctor about it. It does nothing for the fatigue or pain, but I can chew, swallow, and my teeth and gums are holding up well. I still can’t cry tears, but I don’t have to put drops in my eyes all day.

May 14, 2013 at 8:42 am
(19) sue bradley says:

I have sjogrens and fibro just want to comment on the internal organ bit was told i have ibs for 10 years two years ago i had life saving surgery for fulminant ulcerative colitis they did sub total colonectomy this year i had to have a total proctectomy sjogrens has taken my bowel and now i have a perminant ileostomy this condition goes well beyond dry eyes and mouth xx love and light to all xx

July 13, 2013 at 1:28 pm
(20) Precious says:

I just been diagnosed with sjogrens about 3 weeks ago and the extreme fatigue is unbearable for me. It took a year for me to find out what was wrong with me. I recently lost my job and health insurance due this illness. My family and Doctors really thought I was crazy, suffered through alot when people don’t believe that you are sick. But thank for sharing your comments about the medicines you all are taking, it gives me some ideas to what I can take to make my life a little better.

July 16, 2013 at 5:33 pm
(21) Tom says:

I am actually thankful to the holder of this site who has shared this
wonderful paragraph at at this time.

July 21, 2013 at 6:05 pm
(22) Caroline says:

Have experienced overwhelming fatigue (and vague symptoms) for >20 yrs – initially drove myself & my family crazy trying to get diagnosed … . Developed ulcerative colitis and accepted my fatigue and managed my household, parenting and part time work for 15 yrs. When attempting to return to full time work the fatigue and dryness really took hold. Barely could make it through the work week – collapsed, and if could cry, would by Friday evenings. Began getting brain fog, tongue tied (due to the mouth dryness) and hoarse constantly, and eyes burned from constant computer usage and aches/pains were exhasperated (and eating a crappy diet – too tired to eat healthfully – didn’t help!). Finally quit and felt completely inadequate. Upon strong urging of a friend of mine she suggested that I get to a rheumatologist ASAP when she heard I had an elevated ANA that a general practioner ran on a fluke when I went to see him for recurring back pain. While a diagnosis is far from desirable it makes me feel vidicated that I’m not crazy nor inadequate even though MOST doctors make you feel this way. With increased instances of autoimmune disorders doctors need more awareness of SS, especially when attempting to diagnose women! It has affected every aspect of my life… my health, my marriage, my social life, and my career. Fair weather friends have long gone and fatigue makes socializing a chore with others. What’s even more annoying is the ignorant comments people make when trying to describe the fatigue and other symptoms… they see you and you’re not on death’s door so they make comments like “Oh, work makes me tired too”, “I have dry eyes too”, “What do you do ALL day not working?” I wish these family/friends could experience the level of fatigue for just 6 months and then tell them that this is what I have experienced for 24 years!! It’s all about balance – picking and choosing how much stress to put in your life. SSS!! (Sjogren’s Syndrome Sucks!!)

August 24, 2013 at 6:58 pm
(23) Kathy Davila says:

Hi

It’s terrible to feel like this. Like so many of you, I’ve been going in circle for years trying to diagnose, and cure myself. I to have, Sjogrens, digestive problems, chronic fatigue, etc. I’ve little energy.It becomes discouraging when you’ve no one to turn to, or no one whom understands these conditions. I feel some energy ( which is very little) use it, and down I go again. I’ve 18 year old twin son’s going to college this year. I’m so happy for them. They’ve done so much to prepare themselves for college, with little assistance from me. Maybe this will make them stronger to prepare for their adult years. I sympathize with all of you, hope for a cure soon!#

September 25, 2013 at 12:54 pm
(24) Laura says:

I was just diagnosed with Sjogren’s and now the doctor says I have Fibromyalgia with it. I know alot of the issues I have had over the last few years are all connected. I have had the fatigue for years. A few years back my left eye started swelling. No pain, no redness just huge swelling. I looked like Quasimodo. After the MRI I was told it was a pseudo-tumor of the lacrimal gland. They said it was autoimmune. Since then I have had increasing pain in my joints, worsening fatigue and a general depression. I just cant get excited about doing anything. As I sit here typing this my right knee is swollen and shooting pain up and down my leg. I had it shot up with steroids two weeks ago and it only helped for a week. Now that they know I have Sjogrens the ortho doc says I need to see the Rheumatoligist. Problem is they can’t get me in until January. I have had my knees give out causing me to fall 3 times. Had to have shoulder surgery to repair the damage from the last fall. I kept telling the doctor I thought all this was related. Now I have a diagnosis. Not sure what is in store now. I guess I have to wait an see what this guy wants to do to me. Frustrating.

November 14, 2013 at 2:21 pm
(25) Tina says:

I have been diagnosed with severe raynaulds, fibromyalgia, chronic asthma, stage 3 breast cancer and just told I have cross over pre-cancer of the colon. My brother and two sisters were all diagnosed with cancer theses last two years and no one else in our family has cancer. I have had my thyroid, removed, ovaries removed gallbladder removed and hiatal hernia repaired. I have lymphademia in my right arm from having 21 lymph nodes removed Recently, I had an EMG test done because my arrems started going numb and tingling every day, but I bleed all through the test because the neurologist wasn’t very good at doing the test. I am now having a second opinion with a new neurologist and it has been suggested that I have some form of MS just what the Dr’s are just not sure. Chin up. Everyday is a good Day. I survived cancer and all the other surgeries.

January 16, 2014 at 5:22 pm
(26) bewitched says:

I also am grateful to read this article on Sjogren’s and the debilitating effects it can have on a person.

No one has mentioned Interstitial Cystitis ( IC ).
I am plagued with IC, fibromyalgia, chronic fatigue, osteoporosis, Sjogren’s….and more.
Besides the osteoporosis, I think every single disease/syndrome/condition mentioned here is viewed by others as something we’ve made up. God help them when they’re plagued with something that their family or “friends” think is all in their mind. (They’re going to need it!)

If you can find something to help give you more strength (I’ve resorted to raw goat’s milk) and try to remember that tomorrow (maybe I’ll have a GOOD day) it helps with coping on the bad days, and it helps remind you when you’re depressed that you can still have better days sometimes.

If you think you’re not going to be able to work soon….
use the time when you’re not smothered in “fibro-fog” to put your medical papers in order so that they’re ready to file for disability.

March 19, 2014 at 10:14 pm
(27) natalie says:

The vaginal cramping is the worst. When you are crying out in pain that can only be described as that of natural childbirth, you know it hurts.
Dry eyes, but the dry mouth and nose are worse.
Feeling like you took an ass whoopin just from going to get groceries is unexplainable to anyone who loves you.
Wanting to hold the grand babies but not having the strength to or the patience because you are in so much pain most of the time makes it so hard to even like yourself any longer.
Not feeling like you are any kind of a wife when the husband has to do most of the housework.
Then the Fibromyalgia and Neuropothy on top of that. Let alone the osteo arthritis .
And to tell anyone all this is going on all at the same time. Who would believe a person.

March 25, 2014 at 9:42 pm
(28) Melba says:

Ok all…For my RA (20 years), Sjogren’s ( 10+ years but just diagnosed 8 months ago), bipolar depression, ADHD, restless leg (all three for many years), diabetes II (5 + years), thrush (recent), and fibro (20 years). I take an Enbrel injection weekly ( will soon begin Actemera injections instead – hope they address my immune probs better than Enbrel), Methotrxate inj weekly, 7 mgs of prednisone and hydrocodone or oxy prn. 120 mgs of Cymbalta, 200 mgs Plaquinil, 300 mgs trileptal, nystatin, Acarbos, 7.5 prn pilocarpine.and simvitatin for cholesterol, pnv prenatal plus vitamins for Gastric Bypass -( I gained 100 lbs due to Effexor and prednisone), ropinirole for restless leg, tonic water with quinine helps too.
Ive had over 25 joint surgeries, several organ surgeries. Mastectomy. Gastric Bypass and many hospitalizations.
I am 72 y.o.
Like the song says and I’m Still Here. Not that I don’t think about what a relief it would be to not be here…I think in the overall what saves me is that I have spent lots of time since my early 20′s studying all philosophies, praying to God, practicing yoga and Buddhist meditation in earnest, seen many many physicians ( some bad and many life savers), hanging out with many different community groups, writing a lot of poetry and memoirs…doing whatever it takes to deal with these terrible diseases and syndromes. I have experienced more pain than I thought a human could survive – that IS WHAT WE DO. I have as much compassion and humility as I can when I say I understand what WE are going through ONE DAY/ONE MINUTE at a time. I wish us Godspeed.

I eat mainly cottage cheese, yogurt and vegetables and a few other healthy fresh foods which are too expensive. I do not eat sugar, gluten and most other usual suspects. I keep very regular hours and routine when possible. Mostly only go out to DR appointments and sometimes groceries but usually I need my daughter or neighbors or metro ride service to help.

March 27, 2014 at 12:00 pm
(29) Precious says:

I understand all of your discomforts…I was diagnose about 3yrs. It has really been a roller coaster ride because one day you feel pretty good and in the next second you are feeling crappy, it is very hard to explain how you feel…what your outer appearance looks like can not compare with what’s going on inside… very difficult on a daily basis…but I thank God for his strength that he gives me to push forward. I appreciate reading all the comments. I pray peace for all!!

April 17, 2014 at 2:30 am
(30) Michele says:

I have had Sjögren’s since I was in my late 30s. I’ll soon turn 58. I have joint pain, terrible fatigue. I’ve had bouts of ulcerative colities over the years. Swollen salivary glands, fevers, hot flashes, jaw and teeth pain, headaches,dry eyes and throat. The fatigue has been worse lately. I can do lots one day and then I’m in bed the next. This is a very frustrating disease.

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