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!
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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.
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.
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.
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
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.
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……
I’m wondering how the internal organs would be affected and if this would not only involve functioning but issues such a cysts, etc.
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.
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,
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 ………
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.
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. 
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.
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!
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.
I should probably add, I also have RA, FMS and am currently being tested for Sjogren’s.
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!