Friday, April 20, 2012

Sjogren's and Ear Pain: I thought it was just me

Photo Source
My ears have not been my friends, especially over the last two years.  I have had ear infections, chondritis, severe and debilitating ear pain and noise sensitivity that made it almost impossible to leave home on many days.  It was just last week that I had a double ear infection and luckily antibiotics did the trick.  As a result of my unhappy ears, I have often looked for a good source of information about Sjogren’s and ear problems and have not found a wealth of information.  However, the recent The Sjogren's Book (which I highly recommend) does have a brief summary by Dr. Soo Kim Abboud of the ear manifestations of Sjogren’s that packs in some important information.  Here are the highlights:

Hearing Loss - Sjogren’s patients are more likely to develop hearing loss both as a result of physical problems with the ear such as the ear canal called conductive hearing loss or problems with the nerves of the ear called sensoneural hearing loss.  Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants.

Ringing in the Ears - Also known as tinnitus is more common in Sjogren’s patients especially those who have had nerve related hearing loss.  The reason for the occurrence of ringing in the ears in Sjogren's patients without hearing loss is unknown.  In these patients, biofeedback therapy or noisemaskers are sometimes used to help.

Ear Pain - This was a shocker for me – “As many as 25% of Sjogren’s patients have ear pain”. As someone who suffers from ear pain, I have seen many doctors and they have seemed surprised at the pain or view the pain as disconnected from my Sjogren’s.  So I found this extremely interesting.  While saying a link between Sjogren’s and the cause of the ear pain has not been formally established, Dr. Abboud does discuss two possible causes.  These include:

1)     Dryness in the upper airway causing dysfunction of the eustachian tube, which is responsible for equalizing pressure in the ear.  Eustachian tube dysfunction can cause a number of symptoms including “ear pain, hearing loss, fluid accumulation, and  even infection”.   According to Dr. Abboud, depending on its severity treatment can range from using a nasal steroid and saline to antibiotics to ear tubes.

2)     Relapsing polychondritis is an autoimmune inflammation of the ear cartilage (it may also affect the cartilage of the head and neck) that can cause ear pain in addition to redness and swelling.  This is usually treated with immunosuppressant medications.

After seeing four Ear, Nose, and Throat (ENT) specialists over the last couple years, I have not been able to find one particularly knowledgeable about autoimmune disease.  Right now, I rely on my rheumatologist, neurologist, and allergist to deal with treating my ear symptoms.   I do hope that there will be more medical research about the connection between Sjogren’s and ear-related symptoms.   Have you experienced ear problems related to autoimmune disease and was it hard for you to find proper treatment?

Tuesday, April 17, 2012

Sjogren's Syndrome Foundation to Participate in Congressional Hearing

I wanted to help spread the word that the Sjogren’s Syndrome Foundation (SSF) is testifying for the US House Ways and Means Oversight Subcommittee in Washington D.C. next week and is asking for our participation.  The purpose of the hearing is about the costs and burden of over the counter treatments (OTC) for Sjoggies with the eventual goal that we will get insurance coverage for them.  We all know how many OTC products we rely on and how expensive they can be.  To help the SSF with their testimony and tell your story, email with the Subject Line: SSF Congressional Hearing.  Keep up the good work SSF!

SSF to Testify at Congressional Hearing- We need your help!

The Sjögren's Syndrome Foundation has been invited to testify before the U.S. House Ways and Means Oversight Subcommittee on Capitol Hill next week about the cost burden of over-the-counter (OTC) drugs and products patients depend on to treat Sjögren's. We need BRIEF stories about:

  1. How aspects of Sjögren's that call for OTC treatments affects your life.
  2. How the cost of OTC items has caused an undue burden on you and your family.

In addition to products for dry eye, dry mouth, dry lips, dry nose and dry vagina, the former can include the need for reflux, mucolytic, and GI motility agents. Other products such as humidifiers, neti pots, sun protection products and clothing and even special socks to help with neuropathies also can be mentioned.

Putting a personal face on this disease and the expense of having to cover so many costs that are not covered by insurance will help congressional members better understand what it is like to live with Sjögren's and the expenses patients face.

This congressional hearing specifically addresses the fact that patients now have to obtain prescriptions for OTC drugs and products to count toward Flexible Spending Accounts and Health Savings Accounts. Achieving the recognition by Congress that Sjögren's patients have medically necessary OTC costs is an important step in helping the SSF fight in the future for federal tax deductions, Medicare and Medicaid coverage, and, finally, insurance coverage of these OTC costs.

Please email your stories to with the Subject Line: SSF Congressional Hearing.

Friday, April 13, 2012

Brain Fogging

When I think about what I have been doing for the last few days – it has definitely been brain fogging.  I have started to use brain fog as a verb because I am certainly not doing anything else that involves using my mind particularly well.  The Sjogren’s Syndrome Foundation describes brain fog as the following:

Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay 
attention, an inability to focus, and difficulty in processing information.

For me, I describe it as feeling like there is cotton in my head that I am trying to push through to no avail.  I knew today would be a challenge when I left my purse that contained my credit cards, money, medicine etc. at the neighborhood coffee shop for over two hours without realizing it was gone.  Luckily, some wonderful person turned it in to the manager and nothing was stolen.  Phew!  So I decided to try and combat the fog by going a on a walk to see if that would get my mind working, but despite my best efforts the fog was still present.

On brain fogging weeks and days, I often find it helpful to keep myself organized by making lists of the priority items that I really need to get done so I don't forget anything important.  Non-essential tasks can wait.  Besides that, I just try to roll with the fogginess, not put too much pressure on myself, and move forward with my day the best that I can and look forward to it LIFTING.  Because I know that it eventually will.

How do you get through those brain fog days?  Do tell!

Wednesday, April 11, 2012

More on Gluten

Photo Source
Last week, I wrote a bit about celiac disease and thought this would be a good opportunity to share my own positive experience after going on a gluten free diet.  I was having lots of stomach problems – ones that were making things very difficult to leave the house, to put it politely.  Taking imodium became an almost daily necessity and I was spending why too much time in the bathroom (I promise no more details).  Around the same time, my joint pain had grown much more severe.  I needed help just crossing the street because my knees were so stiff, painful, and resistant to bending.  I was puzzled because my joint symptoms varied, and not with the time of day, the weather, or other external factors.

Working with my physician, I began to track if my symptoms were correlated to what foods I was eating.  I noticed that stomach symptoms were much worse after I ate pasta, pancakes, or bread.  My doctor ordered the antibody blood tests for celiac disease and the results were negative. While the next step usually would be to have an intestinal biopsy, my autoimmune condition and other health issues made it such that I was not a good candidate for additional invasive testing at that time. Instead my doctor suggested that we try to eliminate gluten for my diet and see if there would be any improvements.

Bingo!  Over the last five months there have been major changes!  While it did not happen literally overnight, within a few weeks my stomach had calmed and I was no longer often moving as fast as I could to the bathroom every time I ate.  My joints are now much more flexible again and I can move and bend without much pain and discomfort. I have even ridden a bicycle for the first time in years--albeit only once and briefly.  It's been a remarkable change for me that has made an enormous difference in my daily life. It has been well worth giving up some of my favorite foods. 

I am fortunate to live in a large city where gluten-free has become common if not quite pervasive.  I have been pleasantly surprised by the number of gluten free products available, though it did take some taste testing to find options I really enjoyed.  While my physician can't be sure whether I have celiac disease or gluten sensitivity, the treatment is the same--elimination of gluten from my diet.

Does anyone else with gluten sensitivity or celiac disease have favorite foods which have been helpful replacements?  I found the gluten free breads and bagels better than I expected.

I have provided a brief description of the types of possible reactions to gluten below. The National Foundation for Celiac Awareness has a very comprehensive website with detailed information about celiac disease and gluten sensitivity.

Possible Reactions to Gluten  

  • Celiac Disease – A digestive disorder where an individual’s immune system responds to gluten (a protein found in rye, barley, and wheat) by damaging and destroying part of the small intestine, called the villi. Diagnosis is often made based upon positive antibody tests or a biopsy of the intestine. Symptoms of celiac disease can be wide ranging and varied from stomach pain, diarrhea, constipation, nausea, anemia, osteoporosis, and neuropathy.
    • Gluten Sensitivity— Although symptoms of gluten sensitivity and celiac disease are often similar, individuals with gluten sensitivity do not produce the antibodies that cause damage and inflammation to the intestine. Specific tests for gluten sensitivity do not currently exist and the determination is often made by using a gluten elimination diet in conjunction with your physician to see if symptoms improve. Recent studies have indicated that gluten sensitivity is caused by activation of an innate immune response.
    • Gluten Allergy – This is what many of us think of when allergies come to mind, a histamine reaction that can cause symptom such as hives, asthma, and anaphylaxis.


    Wednesday, April 4, 2012

    Sjogren's Syndrome and Celiac Disease

    Many people with autoimmune disease have more than one rheumatological condition. Just our luck! Studies have found clear overlap between those with Sjogren’s Syndrome and Celiac Disease and estimate that between 4.5% and 15% of those with Sjogren’s also have Celiac Disease.  The Journal of the American Medical Association's October 12th issue provided an easy to understand patient education sheet with great information and illustrations about Celiac Disease that I wanted to share.