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Old 11-25-2008, 11:56 PM   #1
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sjogrens syndrome

Hi..do you know anything of sjogrens sydrome and how it will affect me

I have been diagnosed wth it...it is for real

Last edited by cricket123; 11-26-2008 at 12:00 AM. Reason: New Topic

 
Old 11-26-2008, 11:10 AM   #2
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Lindaru HB User
Re: sjogrens syndrome

Welcome to the boards, Cricket . . . while I do not know anyone personally that has this, I do have access to home medical encyclopedias and will share with you what it says about it.

90% of sufferers are women, most often middle aged or post-menopausal. There is no known specific cause but the symptoms are experienced because of the immune system attacking the glands that produce secretions.

Symptoms are itching and burning of the eyes which is caused by dryness. Dryness can also be felt in the mouth and vagina.

The only treatments shown in the text for it relate to keeping the areas affected moisturized such as eye drops for the eyes.

Hopefully this helps.

Lindaru

 
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Old 12-15-2008, 06:47 PM   #3
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Re: sjogrens syndrome

Hi Cricket, sjogrens is a real disease, I've had it for several years plus other immune diseases, ra, lupus, raynauds, oa. I take evoxac, restasis for my dry eyes, I have very dry skin but I use Aveno bath wash and moituring lotion which has helped me a lot, try to stay away from lotions that have perfumes in them it only makes dry skin worse, sometimes when my skin gets really bad especially in the winter I soak in a tub of oatmeal and that really helps.
Drinking lots of water helps with the dry mouth, keeping up with your dental visits is a very good idea. Sjogrens for some of us can remain mild through life but it is a very annoying disorder. I am constantly drinking because I'm always so dry in my mouth and when I eat dry foods I have to drink something to get it down. Now for me I've lost my sense of smell and taste and this is a very rare happening for sjogrens patients it doesn't happen often.
Go to your local bookstore there are alot of books on the market to read about Sjogrens and are very helpful.
Karenica

 
Old 10-07-2011, 01:56 PM   #4
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Re: sjogrens syndrome

Hi Cricket, I have become very familiar with Sjogren's Syndrome and all the different ways it can manifest itself. If you have a weird symptom and you wonder if it is related to Sjogren's it probably is. Most people think of Sjogrens as dry eyes and dry mouth and that's it. How little these people know about Sjogren's. Sjogren's can present in many ways. You may have mouth dryness, sores, increased cavities, a neuralgia represented by pain or numbness on one side of your mouth, throat, ear, jaw. You may have dry eyes or not maybe you just notice increased blinking. You may have arthritis that isn't like RA, or OA but is an inflamatory arthritis that is real and painful that may come and go. You may have muscle pain all over your body for no good reason. You may feel extreme fatigue like you have never felt before and can't begin to explain to anyone else because how could anyone imagine feeling this bad. There are many other insidious ways that Sjogren's may present itself to you. The best thing is that there is some treatment and there are some days that good. I do well with Plaquenil and Keppra for the glossopharyngeal neuralgia that I have. On good days I rejoice and make the best of things and on other days I do what I feel like doing and make the best of it. This disease hasn't gotten the best of me. Don't let it get the best of you. Rejoice and be grateful for each day.

 
Old 12-18-2011, 01:31 AM   #5
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Re: sjogrens syndrome

Quote:
Originally Posted by kujosmom View Post
Hi Cricket, I have become very familiar with Sjogren's Syndrome and all the different ways it can manifest itself. If you have a weird symptom and you wonder if it is related to Sjogren's it probably is. Most people think of Sjogrens as dry eyes and dry mouth and that's it. How little these people know about Sjogren's. Sjogren's can present in many ways. You may have mouth dryness, sores, increased cavities, a neuralgia represented by pain or numbness on one side of your mouth, throat, ear, jaw. You may have dry eyes or not maybe you just notice increased blinking. You may have arthritis that isn't like RA, or OA but is an inflamatory arthritis that is real and painful that may come and go. You may have muscle pain all over your body for no good reason. You may feel extreme fatigue like you have never felt before and can't begin to explain to anyone else because how could anyone imagine feeling this bad. There are many other insidious ways that Sjogren's may present itself to you. The best thing is that there is some treatment and there are some days that good. I do well with Plaquenil and Keppra for the glossopharyngeal neuralgia that I have. On good days I rejoice and make the best of things and on other days I do what I feel like doing and make the best of it. This disease hasn't gotten the best of me. Don't let it get the best of you. Rejoice and be grateful for each day.
You have a spectacular attitude. My fatigue is like I have been over by a monster truck or I am dead and they just refuse to bury me. I have fought like heck to ignore, find a diagnosis and now my spine is deteriorating. I just got the diagnosis after years of weird symptoms, oh heck it is such a long story and I am just sick of it. My life is ruined. Lost a fabulous career and yeah, I am feeling pretty sorry for myself and my daughter. I do not feel as though this is the only thing going on. I am scared for my 15 year old future. I had her later in life, and I am single. At 38 I thought the issue that started at 30 just disappeared because my philosophy is if they don't say I have it I don't have it. Live and learn. Very few doctors care, or they are just not well educated. Sad. How can you be a doctor and not be well educated! How? Just tell me how to keep that wonderful attitude I used to possess. I was the ray of sunshine selling machine tools on the road to industry. Living my life and loving everything about it. I was LUCKY I HAD IT ALL. Now, I have sleep, pain and I just barely exist. Help me muster up something good about this. Because I just don't see it. I suffer everyday. I am tired plaquenil is like taking candy. The steroids help the best but I am high fracture risk now. I am allergic to MTX. Methotrexate. So, now I will just go be happy when I fall all of the time can barely walk and perform my motherly duties of which I live for as there is no greater joy in life than being a mother. At least there is one thing utterly amazing in my life and that is my daughter. But, I have short changed her. She has everything she wants but me. Life is great. I can act the BS out for a short while until I need to lie down again. Sorry I can't be more positive but this affects everyone differently. We are all not carbon copies or life would really be horrific.

 
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Old 12-18-2011, 01:48 AM   #6
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giamarie12 HB User
Re: sjogrens syndrome

Quote:
Originally Posted by cricket123 View Post
Hi..do you know anything of sjogrens sydrome and how it will affect me

I have been diagnosed wth it...it is for real
While everyone is different and understand this is not just an annoying dry eye, dry mouth thing. Hopefully, this will be this way for you and I hope and pray. I was recently diagnosed but I feel mine is secondary to another autoimmune disease. This also affects internal organs as well and can cause horrible fatigue. The disease is insidious and sometimes you do not realize anything is wrong until all the symptoms come at once. But remember we are all different in how a disease manifests itself. Your symptoms could be mild all your life and just a nuisance and then again, things could potentially change when you become older and good old menopause hits. Be vigilant about your body and firm with your physicians. They are famous for there is nothing wrong with you when they are too ignorant or just do not care to come up with a complex health issue other than the common cold which we all know they can do nothing about. In the words of my Rheumatologist when I told him I don't like doctors his reply was a serious "Neither do I." Best darn Rheumatologist in Philadelphia. Smart, caring, and a sense of humor that does not quit and it does not hurt that he is good looking. What more can you ask for in a physician. Wow, an intelligent doctor...go figure. Good luck, take care, I wish you a mild course of this lovely disease.

 
Old 12-18-2011, 02:52 PM   #7
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Re: sjogrens syndrome

Life is sometimes so ironic. I once felt as you do now and I'm sure I said all the same words that you have here. That was depression talking not me. Make sure if you are clinically depressed that you get treated for that too. Now for the irony--I was an active practicing emergency room physician until I finally collapsed in the middle of a shift. That was the last day I ever practiced medicine. It was 1992. The doctors were all confused and could not make a diagnosis definitively until 2010. They told me I had lupus or AIDS or some other virus that was lingering in my system and I just wasn't strong enough to get over it. I spent years with the disabling condition with no name. It just seems easier to fight it now that I know what the fight is all about. I am looking to get back to work in a healthcare related field but I won't practice medicine again. Don't give up the fight. My children supported me and I supported them through all the trials and I'm sure your daughter wants to be there for you. Let her in. Let her strength strengthen you. Care about yourself and set a goal to get better. I hope you can see that there can be hope for us all.

 
Old 12-20-2011, 02:19 AM   #8
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Re: sjogrens syndrome

Dear Cujosmom:
Love the name. Stephen King fan I suppose. Great writer. Wow, I thought I went through h--- and back! Yours takes the cake. I have gotten a couple responses that were quite inspirational and finally gave me some hope that I had not had in a long time. This disease is a tough one. I was lucky to have one doctor believe in me and that was all it took. Even after years of people looking at me as though I was crazy. I think this journey almost lead me there. I am lucky to have a strong constitution but it has taken a toll on my life, self esteem, and having that strong belief in myself. A road too long for many of us. Especially when we know that something is wrong. I ended up isolating myself and becoming angry with those around me that just rolled their eyes at me. I need to forgive now for they did not know. Your words have given me hope that maybe someday I will have my strong constitution back to carry on. But for now, I just feel beat up and defeated with 2 spinal operations and years of searching for an answer for my daughter. Well, I believe I at least have a good portion of the answer and now I can fight that unknown demon. How can you fight when you have no idea what you are fighting? I just wish this darn run over like a truck fatigue and pain would just lift. My nose runs again. Thought that it was strange that I could not blow my nose but who would of thought to tell a Dr. that. The symptoms were so bizarre it was almost as though I could not see a dr. and tell them these goofy, weird things were happening on top of major problems I had. Those other issues seemed so trivial. Guess they were quite important. I was lucky to have the best Rheumatologist around. He never lost faith in me when he could have. He actually brought me comic relief. He has this captivating laughter and he would always say, "It feels good to laugh." Now, that I moved he is about 150 miles one way for me to drive and it is time to let someone in my new neck of the woods deal with this. I can no longer do the drive but I could just not let him go as he saved me from living my life in a wheel chair and this was not his expertise it was a neurological issue with my spine. I wish everyone could have a doctor like this. He is the great teacher. I will forever be in his debt. You have a boat load of courage. I admire you for keeping up the fight. I wish for your courage, I feel defeated by this nightmare. Maybe one day I will write to you and let you know that I have my courage to fight back again. This was one long strange journey. Thank you for your support you are very admirable. Warm wishes for good health and happiness.
Sincerely,
Dolores (Gia's Mom)

 
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