Lynne's Story

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       Hi, I am a 53 year old female, married with two sons.  After the birth of my second son I started having problems with my health.  It took me eight long years of seeing doctor after doctor to finally get a diagnoses of CREST Scleroderma but that is a whole other story.  It was approximately one year after I discovered I had CREST that I started with the symptoms of Sjogren's Syndrome.

       I woke up one morning with a toothache.  Later in the day it was still bothering me so I called my dentist who had me go in to see him the next morning.  He took an x-ray and said that the roots were all inflamed.  He recommended I have the tooth removed.  He gave me novocain and then proceeded to extract my tooth.  I went home thinking now everything would be fine.  I was getting ready to leave on vacation so I was happy to have gotten the problem taken care of.

       The next morning I woke up and the side of my face where the tooth was extracted was extremely swollen.  I called the dentist to see what he thought and he told me to come in later in the day to be checked.  My face was quite painful and I had an awful headache.  When I got to the dentist and he saw my face, he was shocked.  He examined me and said he had never seen anything like it and that maybe it was a bad reaction to the novocain.  I had novocain before and never had any problems, so I was skeptical about that being the reason.  He sent me immediately to an oral surgeon who examined me and also didn't have a clue why I was so swollen and in pain.  He recommended I see an ear, nose, and throat doctor.  By this time, it was four o'clock on a Friday afternoon.  We were leaving on vacation the next morning.  Well, I didn't manage to find an ear, nose, and throat doctor who would see me at such short notice so I took a pain reliever and finished packing for our trip.

       We left the next morning and I was still no better.  My family suggested we delay or cancel our trip but I didn't want everyone disappointed because of me.  By this time I could barely open my mouth because the pain was so bad.  The only thing I was able to eat was soup and I had to drink using a straw.  Just opening my mouth to take Tylenol was torture.  We were gone a week and when we got home I was still suffering.

       I immediately made an appointment with the ear, nose, and throat doctor but had to wait a few weeks to get in.  When I got to the doctors, I was finally seeing some improvement.  The swelling had gone down but I still had a lump behind my ear.  The doctor checked it and recommended I have an MRI to rule out a tumor.  The MRI was scheduled for two weeks later.  By the time I had the MRI the lump was just about all gone.  The results showed nothing of which I was very thankful.

       The doctor said it could have been a blocked salivary gland but couldn't be sure unless it happened again and he could see me right when it happened instead of weeks later.  Well, it did happen again and it was diagnosed as a blocked salivary gland.  This was my first experience with Sjogren's.  At this time though I wasn't diagnosed with Sjogren's and had never even heard of it.   I went for a while without any problems but eventually it started acting up again.  I also started having problems with my eyes.  They were always irritated and hurt. When I started with a glaze over my eyes along with the pain and irritation, I made an appointment with an ophthalmologist.  While I was waiting for this appointment, I was reading some information about Scleroderma and saw an article about Sjogren's.  When I read it, I was convinced that this was my problem.  I saw the ophthalmologist who said I had very dry scaly patches on my eyes.  I mentioned the problems with my glands and he said he agreed that I had Sjogren's disease.

       In the years since that first episode, I have had problems with blocked salivary glands on both sides of my face, sometimes requiring antibiotics to clear it up.  The blocked glands cause my face to swell, my teeth to hurt and it even causes me to have an earache on the side that is affected.  My eyes are always irritated.  Heat, air conditioning, wind, and dust all contribute to making my irritated eyes at times quite painful.  I also get a lot of joint pain but some of that could be from the Scleroderma.  

       I have always had trouble with my teeth even as a child.  Everytime I went to the dentist I would have more cavities.  Several years ago I really started having problems.  My gums had receded and I had periodontal disease.  The dentist couldn't understand why the periodontal disease was affecting only some areas of my mouth and not others.  He found that to be quite unusual.  After being treated for years with deep cleanings etc..I decided to have my upper teeth removed.  I could no longer stand the pain.  It hurt to brush them, it hurt to drink hot or cold beverages and it even hurt to breathe through my mouth.  I was to the point where I couldn't even go for a cleaning without novocain.  

       I went to an oral surgeon to have them removed.  I was to get an injection to put me to sleep and when I woke up it would be over and done.  However, things didn't turn out quite so easy.  Before putting me to sleep, I had to be hooked up to a heart monitor. Every time they clipped the monitor to my finger the alarms would go off.  That was due to the fact that I also have Raynaud's in my hands and feet.  When the monitor was clipped to my finger the blood would stop flowing to the area and lights would flash and the alarm would sound.  They managed to get it working by clipping it to my ear.  Now came the tricky part... finding a vein for the injection.  I have terrible problems with my veins.  No one can ever find them and I usually go through many stabs before the needle hits a vein.  This time was no different.  The surgeon tried many many times but couldn't find an appropriate vein.  I was told that in order to have my teeth out and be put to sleep, I would have to go to the hospital or he could numb my mouth and extract the teeth while I was awake.  My insurance wouldn't cover a hospital extraction so I had plenty of novocain and had the procedure done.

       For many years I was told by dentists that I should take better care of my teeth.  I could never understand why I always had so much trouble with them.  I actually took care of my teeth better than anyone else in my house yet I always had problems and they had none.  I found it very embarrassing to be told by a dentist to take better care of my teeth.  I didn't know what more I could do.  Now I know that the Sjogren's had a lot to do with all the problems with my teeth.  I've since learned to use Biotene toothpaste which is made especially for dry mouth and I use Gel Kam flouride twice a day on my lower teeth.  Since starting this new routine, I've been cavity free and the sensitivity in my teeth has improved greatly.

       Sjogren's has affected my life in many ways.  There are certain foods I can no longer eat.  If a food is too dry, I have trouble swallowing it.  If a food is too spicy or acidy, it hurts my tongue.  So, I have learned to avoid those foods.  Too hot or too cold also bothers my remaining teeth.

       I try to avoid driving after dark since my vision has been affected by the Sjogren's.  I see halo's around the lights.  Some days are worse than others.  On the bad days, I cannot do some of  the things I enjoy such as reading or crocheting.  The burning and pain are only relieved by using artificial tears and keeping my eyes closed. Luckily, the very bad days don't happen too often.

       The joint pain is difficult to deal with at times.  I have trouble tolerating medications so finding a pain reliever to help with the constant pain is proving difficult.  I also have Fibromyalgia so that contributes to my pain.  I try to keep as active as possible though.  Excercising is important for keeping the joints flexible so I do an In-Home Walking routine and I do feel better when I stick to it.  Some days are hard because the last thing you want to do when you are in pain is excercise.  It is important to pace yourself and rest when your body tells you to.  It is better to do a little housework each day instead of all at once.  Doing too much can cause Sjogren's to "flare" up.  

       The fatigue is one of the biggest problems.  It was to the point where I needed daily naps.  I would wake up in the morning and feel just as tired as when I went to bed.  Sometimes just holding a conversation with my family seemed like exhausting work to me.  It is much better now, however, the fatigue disrupted my life to the point where I didn't want to do anything because I was always so tired.  My family also suffered from this as I didn't have the patience to deal with day to day problems.  If you have terrible fatigue, talk to your doctor.

       The Raynaud's limits my exposure to cold temperatures so I no longer can go outside for any length of  time in the winter.  My husband now does the food shopping because the market is always cool and touching the cold foods to put them in the shopping cart starts my Raynaud's acting up.  I always keep gloves nearby in case I need to get something out of the freezer.  The bad part of Raynaud's is that I am always cold and the rest of my family is warm, so it is a battle in the car and house as I turn up the heat and they reply that they are dying and turn it back down.  It is hard for them to understand this as I am always dressed very warmly in the cool weather.

       The other problem I have is always needing to have a bathroom nearby.  Since I have so much trouble with my saliva glands, I am always sipping on a beverage.  What goes in must come out which brings us back to the need of a bathroom.  No matter where we go, I have to seek out a bathroom.  I think I have personally seen every bathroom here in the state of RI.

       Even with all these disruptions in my life, I can honestly say that I consider myself a very lucky person.  I have a great family, a nice home and everything I need to keep me happy.  Things could be a lot worse.  I will continue to deal with what these auto-immune diseases deal me on a day by day basis but my attitude about it all is good and I believe that is half the battle.

       One of the hardest things to deal with is when you look well but feel terrible.  People do not always understand if you are not able to do things because to them you look fine.  Sometimes even your best friends are not as understanding as you would wish them to be which makes you think that they feel your lying or faking it.

        Perhaps by my sharing all this it will help some of those people to better understand the nature of auto-immune disease.  We have our good and bad days but hopefully the good will always outnumber the bad!

The author of this page does not promote, support, or recommend any particular treatment or medication for any medical condition. The opinions expressed in stories or links are the responsibility of their authors. No treatment should be undertaken without the supervision of a physician.

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