Archive for Medical Issues

What the Heck is Sjogren’s Syndrome?

So, today I got a new title.  Another diagnosis.  And this is one I don’t remember learning about in nursing school.  I’ve honestly never heard of it before – Sjogren’s Syndrome.  I’m not even sure how to pronounce it!

According to the Mayo Clinic,

Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system often defined by its two most common symptoms — dry eyes and a dry mouth.

Sjogren’s syndrome often accompanies other autoimmune disorders, such as rheumatoid arthritis and lupus. In Sjogren’s syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.

Once I started reading about the disorder, I felt almost a sense of relief.  I have been dealing with these symptoms for so long – I just thought it was normal!  I’m so relieved to know that there is help out there!

My Rheumatologist had asked me a few times if I had problems with dry eyes, and I had actually said no.  My eyes water constantly to the point that I have trouble even wearing makeup because it ends up all over my face.  Definitely not dry eyes?  I assumed I had allergies.  Well, she sent me to see an eye doctor anyway.

What a fun appointment that was!  For nearly three hours he poked and prodded on my eyes.  At one point he stuck some kind of litmus paper on my eyeballs and I had to sit there for what seemed like the longest sixty seconds of my life.  Apparently I was supposed to score about a thirty, but I only scored a five.  I guess that wasn’t good.  Then he did a similar test, but with a string instead of paper.  I felt like I had dental floss sticking out of my eyeballs!

Next, he applied green eye drops to my eyes so he could examine the surface to look for abrasions.  Then, because of the Plaquenil that I take, he did a vision field test.  This consisted of me sticking my head into this box and pushing a button every time I saw a little flash of light somewhere in my periphery.  It seemed to take forever, and I think I did bad on the test just because my attention span was shot and I was exhausted.

Well, long story short, apparently I do have dry eyes.  And I have it bad!  The doc explained that my eyes are watering saline because the tear ducts aren’t producing the oilier lubrication that they are supposed to produce.  Its like rebound tearing that is actually making the dry eyes worse.  The same thing is happening in my mouth, I suppose, which is why I keep getting all the sores.

Treatment?  More prescriptions!!  He prescribed me Restasis (with insurance – $60/month!) – an eyedrop that I have to use twice a day.  They burn a bit when I put them in, but over time this is supposed to increase the production of lubrication.  He also gave me some other eyedrops that look kind of like Vaseline, but they feel so good to my burning scratchy eyes!  It’s funny how you don’t realize something is bothering you until it stops.  Then you are like, “Wow!”

If that doesn’t work, I can undergo a “minor procedure” where they stick a little plug in the tear duct to prevent the reabsorption of my tears.  Sounds awful!  I’ll stick to the drops!

I guess I should have seen this problem a long time ago.  Well, I did, really, I just didn’t know there was a name for it – much less a cure (well, not a cure, really).  I have had the sores in my mouth for years!  Certain foods definitely make it worse – acidic food, tomatoes, Red Bull.  The eye thing, I should have known wasn’t normal.  As I said, eye makeup and I don’t get along!  Even eye creams make my eyes cry like a baby.  I can’t stand sitting near a fan or an air conditioner.  And when I wake up in the morning I feel like my eyelids are sandpaper.  I really just ignored all this because it wasn’t really that bothersome.

While I was at the drug store, I also came across some special toothpaste, mouthwash, and gum just for this problem.  I’m really excited to see if things improve.  I feel like I might have actually found a “quick fix” for some of my issues.

Maybe….but there was this little part I read about cancer.  Cancer?

Lymph nodes. A small percentage of people with Sjogren’s syndrome develop cancer of the lymph nodes (lymphoma).

End of paragraph?  Can you elaborate a little?  What’s a small percentage?  Well, I found the most common statistic to be about 5% of people with Sjogren’s eventually develop lymphoma.  That’s something lovely to think about.

Here is a great article I found about Sjogren’s Syndrome:

I also found these recommendations, I’ll let you know if I try them:

  • Tear substitutes are efficient in mild to moderate cases of dry eye.

  • Moisture-chamber eyeglasses will help preserve tear volume by minimizing airflow over the surface of the eye.
  • Avoiding dust, fumes, and excessive makeup, especially around the margin of the eyelid.
  • Brush frequently, both before and after meals, using an electric toothbrush. Floss and irrigate the teeth (using a Waterpik ® or other tool) frequently. Among Sjögren’s patients, oral hygiene is crucial in combating tooth decay. See a dentist regularly to monitor tooth decay and loss of enamel.
  • Use a pH-balanced mouthwash to lower acidity. Try 1/4 teaspoon of baking soda dissolved in 1/4 cup of warm water. Alcohol-free goldenseal (H. canadensis) can be used as an antibacterial mouthwash. Dissolve 30 drops in 2 oz water and swish the solution about in the mouth.
  • Avoid sugary foods. Bacteria produce acid for 20 minutes whenever sugar is ingested. Avoid acidic foods, including citrus fruits.
  • Drink non-acidic bottled water.
  • Use a straw to protect the mouth when drinking soft drinks and other acidic beverages.
  • Avoid abrasive toothpastes that can harm already compromised tooth enamel. Certain toothpastes (e.g., Biotene) have been specially formulated for individuals with dry mouth.
  • Drink plenty of water to replace the lost moisture in the oral cavity. (Remember to avoid acidic beverages like tomato and orange juice.)
  • A sugarless candy or sugar-free chewing gum kept in the mouth can stimulate saliva flow. Xylitol, a sugar substitute used in candy and gum, is thought by some to inhibit dental caries. Never sleep with anything in the mouth. Many health food stores carry rice- or barley-sweetened candies.
  • Avoid caffeine, which is diuretic.
  • Use a humidifier to keep the air moist.
  • Breathe through the nose rather than the mouth
  • A mixture of saline and aloe can relieve dry nasal membranes and nosebleeds and is gentle enough for repeated use.
  • Avoid antibacterial and abrasive soaps; use soaps with added oils or moisturizers and moisturize the skin after bathing.

Supplement recommendations found on the internet (I have not tried these):

  • EPA and DHA: 700 mg EPA and 500 mg DHA twice daily with food.
  • GLA: 285 mg one or two times daily with food.
  • Life Flora: An intestinal bacteria to assist with digestion
  • Thymic Immune Factors. Follow directions on label.
  • L-glutamine: 500 mg daily.
  • DHEA: Blood testing is recommended before DHEA therapy begins to establish a baseline; then a starting dose of 15 mg to 75 mg may be recommended. Retesting is recommended three to six weeks afterward to ensure youthful levels.
  • Goldenseal (H. canadensis): Follow directions on label.

In the Beginning

I was diagnosed with Rheumatoid Arthritis last October.  That day was like a crossroads for me.  It was a new beginning of a life with a chronic illness, but it was also the end of a very long journey.  It wasn’t like I woke up one day in October with an illness, I’ve had symptoms for years.  But finally getting a name for what had “ailed” me gave me a new outlook.

I guess this all started when I was about fifteen.  That would be roughly 23 years ago.  Wow, that’s a long time, now that I think about it.  My battle with connective tissue, autoimmune disorder started with endometriosis.  From the first day that mother nature visited me, my periods were super painful.  I would literally crawl on the floor, howling in pain.  The cramps would come in waves accompanied by vomiting and diarrhea.  I thought surely that each consecutive one would bring my demise.  After I had my first child I realized that I had been experiencing nothing less than labor pains month after month.

Looking back at that little girl laying on the floor crying, I just wish I could go back and hold her and tell her it would be okay.  It’s funny how you can feel maternal toward your own self.  That is an odd emotion.

On more than one occasion I wound up in the ER needing injections of Demerol or Morphine.  It really was that bad.  I had a laporoscopy at sixteen, and the doctor said I had the most extensive case of endometriosis he had ever seen in a girl my age.  I was treated with several cocktails of birth control pills, lupron, and depo provera – I can’t even remember now what all I took.  I never felt comfortable taking any of it – but fear of pain will drive you to try almost anything.

I missed a lot of school as a teenager.  The cramps had me bed bound one or two days a month, and I got sick all the time.  I remember my parents having me tested for mono on several occasions, but I don’t think it ever showed anything.  I was always anemic, had frequent fevers and aches.  I was just never a real healthy kid.  I also suffered from stomach ulcers – probably from the pain meds I took every month.  The mouth sores also started in high school.  All of my life I have suffered from horrid sores in my mouth.  Sometimes it looks like there is a huge hole in the roof on my mouth, other times it looks like the top layer of skin has been burned off of my tongue.

Amazingly, the endometriosis didn’t affect my fertility.  I had all three of my children by the time I was 24, so I didn’t put it off, but thankfully I didn’t have any problems.  I had one “molar” pregnancy, but I don’t think that had anything to do with my other health issues.  However, the pregnancies and years of breastfeeding did nothing to retard the growth of the endo, as some experts suggest.  With all three of my pregnancies, even though I was exclusively breastfeeding, my periods came back with a vengeance less than a month after giving birth.  I remember thinking how unfair that was!

Aside from severe hyperemesis (vomiting), during my pregnancies I experienced the first of my joint pains.  With my first daughter, at age 19, I had a lot of hip and back pain.  My leg would suddenly give out and I would fall down with no warning.  During the second pregnancy, I had quite a bit more pain.  I remember having pains in my elbows and hands.  And, I was plagued with pneumonia for a large percentage of the pregnancy.  With the third pregnancy, it was more of the same – hyperemesis and aches and pains.

I also suffered severly from a disorder called antenatal depression.  It is generally the same as postnatal depression, only it occurs during the pregnancy.  This is really the only time in my life that I have had depression to this degree, so I’m fairly confident that it was chemically, or hormonally induced.   Add raging hormones to the fact that I couldn’t eat or drink without throwing up night and day, and I was a wreck.  I had to be hospitalized a few times and I took Prozac throughout all three pregnancies.  Oddly, as soon as I gave birth, I was fine.  In fact I was happier than ever and came off the meds so I could breastfeed.  It’s a pretty rare disorder, from what I’ve read, and it made for a miserable nine months (times three).

When my son was two, I had finally had enough, and I decided to have a hysterectomy.  I was advised to have everything removed, but I weighed all the facts, and decided to keep my ovaries.  Both my mother and her mother are breast cancer survivors, and because I was so young (26), I didn’t want to have to take hormones.  I figured if I still had problems, I could always go back and have them removed.  So, in 2003, I had my uterus removed.

According to my doc, I had stage 4 endometriosis.  My uterus was fused to my bowel and my bladder (which explained a lot of the symptoms I’d been having).  Literally within a week of the surgery I felt better than I had in years!  There have been times since when I would give anything for another child, but I can still say that having that surgery was the best thing I’ve ever done.

With the endometriosis issues resolved for a while, I started feeling pretty good, and living life to the fullest.  I had divorced and was now dating an amazing man (hubby).  I was happy.  Then, about a year later, the back pain started.  I had had a few other problems scattered about here and there, but nothing I ever connected.  A few cracked ribs, I separated the cartilage from my ribs, “tendonitis” in my shoulder and wrist, an odd ache or pain here and there.  There were days that my legs felt like they weighed 200lbs each and my hips ached enough to make me limp.  I think I even had some odd lab results that were never followed up on – elevated sed rate, severe anemia.  But, otherwise I was pretty healthy and didn’t go to the doctor often enough to throw up any red flags.  Plus, I didn’t have health insurance for a while.

The back pain got bad around 2004 or 2005.  I recall coming home from a night shift at the hospital and being in so much pain that hubby took me back to the hospital to go to the ER as soon as I got home.  The pain would strike right in the middle of my back and it would make it hard to breath.  I would get spasms right under my shoulder blades and it felt like someone was squeezing me right across the lungs.  Eventually I had some x-rays and an MRI and got a diagnosis of Degenerative Disc Disease and Fibromyalgia, and was treated with some muscle relaxants and anti-depressants.

I think the anti-depressant was effexor.  I took it for about two weeks before I threw in the towel.  It gave me the worst diarhea I’ve ever had in my life.  I would literally sit in the bathtub because I couldn’t stop “the flow.”  Sorry to be gross – but it was horrible.  I threw it away, wondering if I really was crazy.  I wondered, does being in pain automatically make you depressed, or does being depressed make you have pain?  Is it possible to have one without the other?

At that point in my life, I was determined to be proactive and try to “fix” myself.  If the doctor couldn’t do it, I would – and I did – at least for a while.  I started eating healthier, I took up yoga, and I even started running.  For about two years I tried diligently to be the picture of health.  And I did feel pretty good.  But, something still wasn’t quite right.

As I said, I had been running pretty diligently for about two years, but I wasn’t improving as I should have been.  There were times when what should have been an easy three mile jog would take me four days to recover from.  My times were getting slower and it hurt more and more to run.  It wasn’t getting easier, it was getting harder.  My back was going out on me a lot, my left foot had started going numb after just a few steps, and eventually I couldn’t even lace my shoe across the top of my foot.  My right ankle and right knee often had sharp pains in them when I tried to run.  I just wasn’t in peak shape, despite trying.

I remember one of the last times I went running.  My husband had decided to take up running with me.  He hadn’t been running but a month or two and we went out for a run together.  He easily ran six miles and I pushed myself so hard to keep up with him that I was in tears when I hit the five mile mark and just collapsed.  I knew something was wrong.  I was in so much pain.  I can take pain, I can push myself.  I had two children through natural childbirth.  I have three tattoos.  I had easily run five miles before and felt great till the last step.  But this pain wasn’t normal – something was wrong.

About this time, I got a new job as an assistant director of nursing at a nursing home.  I got really busy at work and put running on the back burner.  Emotionally, not running took its toll on me – as that was not only physical therapy for me, but psychological therapy, too.  But, I was pouring myself into my new job, and loving it, so I didn’t miss the running too much.  Then, about four months into the job, all hell broke loss with my body.

I don’t know if it was the stress of the job, the consequence of stopping my fitness routine, exposure to illness, or maybe it was just coming anyway – but it hit me.  At first, I noticed some pain in my right pinky finger.  I couldn’t squeeze anything without getting a shock of pain through my hand.  Then it hit my left wrist.  Then my hips, my ankles, my knees – everything was aching.  I was calling in sick at least once a week because I just couldn’t get out of bed.  By August of 2009, I couldn’t hold a mouse with my right hand, I was having trouble typing, holding a toothbrush, and was even in pain just walking down the halls at work.

I first saw a friend of mine who is an orthopedic surgeon.  He took some x-rays and injected both hands with cortisone and suggested maybe it was rheumatoid arthritis.  I knew in my gut he was probably right.  The cortisone helped for exactly one month – then it was back with a vengeance.  I saw my GP, who found a positive ANA, and he set up my first appointment with a rheumatologist.

October 14, 2009 – the day after my 33rd birthday, I saw the rheumatologist and was given the diagnosis – Rheumatoid Arthritis.  That is the day I turned down a new road.