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As I write this, The Learning Channel (TLC) is running a series of stories on mystery diagnoses. The story of a woman who suffered with a long list of painful conditions since childhood, until an Opthalmologist took special interest in her dry eye issue, caught my eye (no pun intended).
The results of a biopsy on her lip tissue led the doctor to the diagnosis of Sjogren's Syndrome, an autoimmune disease that attacks the fluid-generating/processing organs of the body.
Have you ever heard of Sjogren's Syndrome? Are you a patient with this disorder and, if so, how are you keeping it under control? Please share your story!
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I was diagnosed with Sjogren's Syndrome in 2008, after a horrendous battle with Endometriosis. My doctor is a top specialist in the field of Endo, and explained to me that people that get Endo to the degree I had it, often have two or three other Auto Immune diseases. I was able to see a rheumatologist, and start Plaquenil. Because the Plaquenil has some effect on the retina, and I was not showing signs of it.. I decided to stop and get back on when I needed it. Big mistake! I have never been able to pass another blood test showing any ANA activity...even though Sjogren's can sometimes go undetected. Now- I have major organ involvement, and I am having to get a malpractice attorney involved to simply get the correct treatment and respect at a world reknowned medical facility. They have me pigeon holed as a Opiate Addict, when I have extremely bad inflammatory arthritis in my feet, knees, back and wrists. It's my belief they don't want to diagnose me as Sjogren's requires many specialists. I took my records to an outside specialist, and she prescribed me the Plaquenil- all be it- a little late. She is also helping me get a lip biopsy as well as an ocular test for validation of the Sjogren's. My advice? Don't ever give up- and don't take disrespect. Be well-
November 29, 2016 - 8:17amThis Comment
I'm a 45 year old guy with Sjogren's and I feel the same way. I am so sick of hearing "it's just dry eye, use some drops and get over it." In my case, it's caused extreme exhaustion, neuropathy pain, cardiac damage, and now potentially lung damage too. I'm at high risk for lymphoma. I finally got some relief with Rituxin infusions. I'm still fighting the good fight, but so few people seem to get it...
October 21, 2015 - 2:40pmThis Comment
thanks so much for the reply. i've gotten her three pain specialists in ny who take her insurance and will push her to work with them. i thought there must be some help out there.
April 9, 2009 - 4:06amThis Comment
I will definitely look for a replay of this show as I would love to see it. "House" actually had a diagnoses on his show but it really saddened me be the producer shoved it off as a nuisance in her life and all she needed to do is take some steriods and life would be cherry! How I wish that was true. I now take over 13 medications and life is not cherry. It is a constant give and take with my body and a full time job of managing my medical care which is exhausting sometimes I might add. There are days I wish I could take a break from Sjogren's and so does my husband. Him and I are a team and without him I would be walking a path alone. I know many women who walk alone and I don't know how they do it. My extended family do not understand and even my adult chidren do not. They expect of mom and that is the end of that. We don't look sick on the outside. As for the recent Learning Channel series, I wish the Sjogren's Association stayed ontop of this and notified their members and I wish there was more of this dreadful disease in the public eye and medical eye! I have suffered with Primary Sjogrens for so long and was officially diagnosed in 1999. I had seen every doctor under the sun. It was actually my Pearle Vision eye doctor who helped me in confirming what I thought it was then helped me to get into a rheumatologist who then helped to finally confirm it through all the proper tests. But prior, even my dentist should have seen something was wrong because of issues I kept having with my teeth. There were so many warning signs that so many of my doctors could have picked up but instead they kept sending me to this specialist and another. That is the problem here. We are sent to so many specialists for each and every issue the entire picture gets totally overlooked! I had been suffering with symptoms at least 10 years prior to my diagnosis day. Sadly, by the time I was finally diagnosed with Primary Sjogren's I had previously been falsely diagnosed with so many other diseases that even my family, with the exception of my wonderful husband, really didn't believe the diagnoses. Especially with the fact that they never heard of it. After a year of my diagnosis they finally began to live with the diagnosis but did not take it seriously. It took several more years before they would even say the name of the disease. All that they could find on it was that it was a disease of nuisances. Not too much has changed other than a small paragraph that it can affect other organs, etc. But a nuisance, it was not that for me. Not that for anyone I knew that was living with it in fact. By the 3rd year of my "confirmed" diagnoses I was already dealing with a systemic form where it had invaded many areas of my body. Today I deal with severe pain due to the periphial motor and sensory neuropathy, myositis, vasculities, reynauld's disease, and multi-organ involvement. So when I read some descriptions of Sjogren's Syndrome sometimes it does get to me because it states you will live a normal life with possibility of some disability. My old doctor stated that meant you won't die of Sjogren's. What my doctors now state is that most people do not die of SJogren's but this is not all cases. He said, "We don't inform patients that you can die from Sjogren's complications because they don't want to put that thought into their patients minds since it is a greater likelihood that they will live to a normal age, although it won't be the quality of life they had hoped for." No they would rather surprise you when the time comes and it takes a nasty turn on us like it did me. Even for me the doctor would never tell me. It took my husband finally backing him in a corner and demanding a straight answer. I lost 1 friend and 2 friends' mothers and their cause of death on their certificate was Sjogren's Syndrome. What can we expect when our own disease's national association can't admit the seriousness to us of this disease. To be honest it isn't the dying that ever scares me, it is the living for another 40 years without a cure that scares the hell out of me; because I wouldn't want this for anyone. But I am willing to fight through it as long as I have to and in the meantime pray that if a cure doesn't come in my lifetime that God does spare me that either my future gets easier or shorter by His choice.
So we have to ask ourselves why dosen't the medical community know more about this disease. There is supposedly 4 million diagnoses according to the Sjogren's Association so the numbers are high and that doesn't include those like me who took 10 years to diagnose. Why is there just a small paragraph in their medical books and in only a select few. Why isn't it being taught more than just a 1 hr session in their 8 years of schooling when it is such a detailed autoimmune disease that covers so many areas and gets so misdiagnosed? MS patients, Lupus patients, and on and on, have been misdiagnosed and really had Primary Sjogren's Syndrome! I met many at some of the Sjogren's events. I wonder how many fibromyalgia patients out there are being misdiagnosed? Because like me that was a diagnoses of elimination, even though I had positive blood tests including an ANA. But if a doctor doesn't know what is wrong then a woman either has CFS (Chronic Fatigue Syndrome) or Fibromyalgia. I too carried both diagnoses but believed it was a cop out for the doctors. It was through my own research that helped me attain my diagnoses by asking my rheumatologist for certain tests to be done including biopsies and blood tests which I was positive for all of them. As for my doctors, I have had to become their teacher. Which shows us that we should not put so much of ourselves into the white coats as they are equal to us. They just went to a different school.
Recently, I suffered a stroke and it took them 3 months to come to the conclusion it was the result of vasculities which was the result of Sjogren's Syndrome. So it was to the neurologists and cardiologists surprise that they were in new territory. My husband already knew the cause of it the day it happened. He informed the ER doctor and she wrote in the ER report Sjogren's Syndrome & vasculities, etc. During this latest episode I have had to make some changes in my care which included firing two of my 8 doctors and interviewing and rehiring. Sometimes managing our own care is more exhausting than the disease itself and it should not have to be this way. I wish it wasn't so but if we didn't manage our care, well I know I wouldn't be doing as well as I am right now. But I wish that I could concentrate more on taking care of me than having to always educate them and my family and friends. Because living with Sjogren's Syndrome is living with constantly having to explain "What is Sjogren's Syndrome?" Sometimes, I just say it is a disease that changed my life forever and just leave it at that. I know it doesn't do our disease much good in getting education out, but sometimes I am just too darn tired to explain to another person what it is or that it affects more than just dry eyes and a dry mouth, aren't you guys?
March 27, 2009 - 8:43amThis Comment
I was just diagnosed with primary SS after more than a decade of suffering and chasing the cause. Your post is like taking words out of my mouth...except I am too dang tired to speak them. What a journey!!!
May 18, 2015 - 9:22amThis Comment
my good friend has had almost exactly your journey and we are trying to help her deal with the pain. what do you use to manage the pain? she says she's been told she can't get pain help because her organs/etc. are fragile. does this seem possible? i can't imagine how she lives through it.
April 8, 2009 - 7:25pmThis Comment
Living with pain is very tough Lesley. As for the reason she can't get pain mgmt help Lesley because of "fragile organs", I've never heard that one yet. It has to be a first. Think of it this way, how many cancer patients and others far worse than us are being treated w/pain meds. That is a crock and sounds like drs. worrying too much about their malpractice ins.&reputation or simply just don't want to fill out Fed.Gov.forms. But seriously Lesley,Your friend has two strikes against her right in the front door with almost any dr..She is a woman and looks okay, and is in need of a time release narcotic. 2 strikes right there. Now here is the kicker Lesley, if she asks for pain meds, shows any emotions of needing it because she can't live like this anymore...well some of these docs signal her as a "drug seeking" patient. Now you might think no way is this happening. It does, & if she was a man the tables would most likely be turned at least 70% in "his" favor of getting help. I hear this story everyday and it happened to me more than once in my life dealing with all of this. One dr.told my husb.Ijust needed a second job instead of laying around home! I was raising 4 kids, homeschooling & working 30hrs outside the house & running a horse farm & he felt I needed a second job to deal with the pain. What I needed was to lighten my load and get some serious new medical care. I found it to be a long journey until I found someone I could have a positive and good working relationship with. Sadly almost 6 years! My best advice to anyone is keep searching until you find an excellent pain specialist. A regular dr.,neurologist or rheumatologist cannot treat this type of pain! If you have neuropathy we see a neurologist, heart issues we go to our cardiologist, and so on. Which is part of Sjogren's patient's problems, too many different doctors. We suffer with chronic and debilitating pain we then see a PainSpecialist this is the way to go & fight to get a team effort in place too w/all her treating docs. They don't communicate like they should & living w/Sjogrens & it's many gifts we have so many specialists. Medical Dr., Rheumatologist, Neurologist, Cardiologist, Dermatologist,Lung Specialist, GI dr, eye, dentist... things go nuts. I made a binder and sections where I keep all med.records w/me for 6mths-1yr @ every dr.appt.Blood tests, Medical tests,surgeries, notes, and journals of my days. Surgeries I never remove nor do I remove important tests or cardiac care or medication list(whch I keep copies for docs instead of having to write them out). It sure helps with our brain fog too. Even my tests I get CD/DVD copies of them all when avail. If you ask at the time of the test stating you need it for your many doctors treating you, they will make you one up right then. The more we have with us @ ea. appt. the better. Plus it helps from repeating tests. I'll go to one dr. who wants a bunch of bloodwork. Another dr. a week later wants to order some & I show him what has been done in the last so many days/wks to avoid repeats. We are allowed one free copy of all our tests, etc. at N/C. I get mine @ ea.visit. In fact even healthy persons should do this. At 1st it took dr.s some getting use to, some hated it & those I fired & replaced with docs who were willing to work with it. Now it is the first thing they ask for and say they absolutely love it. No break down of communications anymore, plus I keep paper in it to jot notes of the appt because I too forget a lto! HOW DOES ALL THIS HELP SOMEONE LIVING W/CHRONIC PAIN? It gives us back some control of our lives. A mind is a powerful thing in not allowing us to handle pain. If we give up control of our lives to others we begin to feel worthless, dependent, and loose our identity only being known as the person w/sjogrens dealing w/pain. It also then allows the pain to also control us. Gaining back that control is such a wonderful sense of freedom I can't express it. It won't ever be perfect, nor pain-free, but it sounds like it can be better. Knowledge is a powerful thing and if she lets the drs. tell her what she can or can't do to treat her disease, she is allowing them to take over her own body and control. That is a powerful thing, I never realized. We can't do it alone though! With a good combination of meds,learning to work w/ourselves, having support,it really does help. Every once in a while I bring supports to drs. I'll bring my husband usually so he is there for questions and trust me when given the chance doctors will talk to them over you. They want to know how you "really" are doing. They can see many of the real pictures through those close to us. They also see we are not coming in there just to come in, they see it is all real, our lives the way they are. So about every 3 mths my husband tags along to dr. day. That is another thing that will drive you nuts too is dr. appts. It took me years to stand up to the bunch of them but when I did, wow, releif. I don't allow appts. to be scattered all over the month anymore, I am sick afterall and running all the time, well it only made the pain more unmanageable. I am very careful on my scheduling & refuse to spend more than 2 days per week for drs unless something is up. Also if she doesn't do this yet, she is going to have to learn to just give it up and give in to her body and lounge all day on those real bad days and sometimes weeks. Sometimes you just have to give in & let your body win so your mind can rest. But please know There are meds out there now that really help w/o a lot of the side effects. For me,I have tried it all, the worst are any mindaltering drugs or antidepresents. They never worked for my pain and made me feel terrible. Many drs. like to throw out elavil, and other antidepressents believing it helps w/pain. But even my pain specialist made a comment to me: "it helps with pain and helps with your depression". I wasn't depressed, maybe I get ticked sometimes dealing with this stuff, but not depressed yet because I have a disease drs.state "women" tend to deal with depression and need treated w/meds. NO! most of us don't. Now some do, but for living w/something like this no. The side effects can be devastating for us. Dry eyes and mouth get so much worse. Some woman mistakenly think the pain meds is what is making them sick and it is the antidepressants. For me I found oxycontinER 20mg three tmes a day seems to do the trick. You can't take it 2xday, it won't work! I was on OpanaER for a year but I just did not get the results I rec.on Oxycontin ER. My activity level dropped 50% on OpanaER. I know others on it and say the same. It takes about a month, but a month well worth the effort. For me, I use 20mg and won't go higher as I am only 48 & don't want to grow tolerance too fast. Started at 10mg worked to 20mg TID before I received some results. I've been active in a pain study for how longterm drugs work & seriously found this one to be best. The short release drugs only touch the tip and cause sooo many more issues than they help, including organ failure issues. Fetenyl(?),hated it! Methadone my pain went out of control and I had heart problems on it. This is a very dangerous Chronic pain med. It accumilates in your body over time. Can be lethal yet some doctors still use the junk. She has to remember that no matter what she takes, how she takes it and how much she takes, It doesn't ever take the pain 100% away, nothing will, but it cuts the edge off it enough so you can at least live again and somewhat concentrate on things & think. If it gets so bad and out of control, you just can't think, your mood is all over, it sucks Lesley. I have found in my experience, no matter what, keep your mind busy to help you through the worst times, even if it is a good lifetime move! lol But remember it takes teamwork, lots of it, and your pharmacist should be as important as the docs. For pain my complete regimen is neurotin TID, oxycontin TID, methotrexate&plaquenil for inflam,etc. For break thru pain that slips through the Oxycontin time I'll use percocet but to be honest, I rarely do because I hate the side effects. The new pain meds out there really manage the pain, lesser side effects, no euphorias or ups and downs with pain like we dealt with in using stuff like darvocets, percocets,etc. You can live a normal,well somewhat normal life. I don't think our lives can ever be normal but then again who's is. The other thing my pain dr. has taught me is to be prepared. Like when I shared about the airport. It takes work to set trips up,but having the right medical documents and stuff really helps things go easier. Not perfect,but much easier.
Also to all who deal with a chronic illness. One valuable piece of advice one of my doctors shared with me I'd love to pass on. "Always remember we are just wearing a white coat and yours is just a different color. We are still the same, I know more about hearts and you I am sure know more about a lot of other things. But mostly, you know about you and what you live with everyday. Don't let anyone intimidate you because they wear this coat. We are no different than our patients. We bath, we sleep, we eat and all go to bed without our shoes. If you are not happy, ask. If you still are not happy, sit me down and confront me. If I still don't answer you or help you, don't put up with it. I would expect the same service as you expect, don't expect any less of me." He then said sometimes doctors need to be reminded that many of us went to school, just studied different things, and they need a reality check. They are not God and sadly can't cure us. Many patients put so much faith in drs. they give up when they get no results. I found over time pain therapy also had to come from within myself. I had to help my mind take some control of my life and body. So I took control. Something many of us loose when we are so sick. Journaling helped me for a long time.
Let me recommend 2 books to you & your friend. It helped me so much. It also helped my husband to understand more. One: Where Is God When It Hurts,By Philip Yancey and second: When we Hurt also by PhilipYancey. Michael W.Smith also has a small book out about living with pain & getting through it with the help of prayer and God. I think it is called Healing Rain. I'd have to double check. Anyways, Yancey's books are excellent. They are not all about God and do this and do that, it is about his experiences dealing with those living with devastating pain & illness and honestly it helped me look at things so differently. It did really help in a diffent way. Yancey's books would be a great gift for her.
My prayers are with you and your friends and know this Lesley, you are being such a good friend being your friends voice. I wished I had someone like you in my life when I couldn't stand alone. Our husbands are too close to the situation and emotions become a hindrance at times.
Lots of blessings.
April 8, 2009 - 11:35pmThis Comment
Thanks for posting the info about the Learning Channel series. I suffered from Sjogren's for years before being diagnosed. It's a common disease but most people have never heard of it. For me, it started with dry eyes that could only be relieved by OTC eye drops several times a day. My tear production got so low, that whenever I cried, people thought I was faking it just because there were no tears rolling down my cheeks. I complained to several different doctors for several years, but none bothered to check it out. They simply told me to continue using OTC eye drops. I was finally diagnosed after I went to my primary doctor complaining that I no longer had enough saliva to chew a cracker. He sent me to a rhemuatologist, who with a simple blood test discovered I had the autoimmune disease Sjogren's. By then, it had not only attacked the tear glands but had now spread to the salivary glands. If you suspect you may have Sjogren's, don't waste your time complaining to the eye doctor or the family physician. Go straight to a rhemuatologist. They see autoimmune diseases every day and are better equiped to recognize the symptoms. There is no cure for Sjogren's but they can provide you with advice and treatment for the painful symptoms.
November 1, 2008 - 7:59amThis Comment
Wow - I had never heard of this. It sounds terribly painful.
I wonder wnhy it targets women between the ages of 40 and 60?
What a shame there is no cure or real treatment for it yet.
I love Mystery Diagnosis! It's a great show!
September 17, 2008 - 2:26pmThis Comment
Alysia, I had heard of this, but didn't fully understand it. After a little research, I discovered the condition can cause dry mouth and fatigue as well. What was really surprising is that nearly 4 million people reportedly have it and that nine out of 10 of them are women. Anyone looking for a support group, may want to visit this link. Excellent info, Alysia.
September 17, 2008 - 8:24amThis Comment