After being diagnosed with a chronic illness and going through feeling shock, sadness and anger, I settled in with the belief that since I was dealt this hand in life no other medical condition could come my way.
I felt that there had to be some fairness. After all I had been diagnosed with Ulcerative Colitis at the young age of 23 right after having a baby. That was bad enough. Just a few days after turning 40 I learned that I had a rare neuromuscular disease named Myasthenia Gravis. Surely, that was enough for one person to deal with.
But in the span of about two years I was to learn that I actually had more chronic illnesses, most of them autoimmune or caused by the autoimmune process.
One of my diagnoses was Sjogren’s Syndrome. This was something I had never heard of before. I actually had to learn how to pronounce the name (show-grins). I did know that I had many of the symptoms though. Once diagnosed I could get treatment to relieve them and feel a bit better.
I didn’t think to complain to my Rheumatologist about my dry eyes, dry skin, dry mouth and throat and other symptoms that I associated with Fibromyalgia or Rheumatoid Arthritis like overwhelming fatigue and joint pain.
During a visit with him, he noticed how dry my skin was and began asking me questions about the above symptoms. When I answered yes to all of them, he sent me to an Ophthalmologist. He examined my eyes and found them to be severely dry. At that time the diagnosis was called “sicca” which means dryness of the mouth and eyes. Soon after the Ophthalmologist and Rheumatologist had a phone conference it was decided to diagnose me with Sjogren’s.
I now have a Dermatologist on board to help when the dry skin gets to be too difficult to manage and a Gynecologist to help when vaginal dryness or irritation becomes an issue. I see my Dentist frequently and have three times per year teeth cleanings to prevent dental decay which can be caused by having a lack of saliva. There are other doctors involved in my treatment, but they overlap with my other chronic conditions.
I now have come to accept that I am indeed fortunate. There are many people seeking answers to their medical problems and not getting them. A diagnosis seems out of reach and with a lack of one, treatment is often delayed. Through my blogs I’ve received inquiries from people who believe they have Sjogren’s but because they don’t have the antibodies in their blood, a positive lip biopsy or positive tests from their Ophthalmologist, they live with the diagnosis of sicca or connective tissue disorder, or no diagnosis.
Due to very knowledgeable doctors who took the time to communicate, I received my diagnosis in a few weeks and began treatment immediately afterwards. I still have numerous symptoms but they are well treated.
Following is some information to help you become your own advocate if you have the symptoms of Sjogren’s. You can speak to your doctor, request tests and/or discuss your symptoms in light of your lack of positive test results.
Sjogren’s is often broken up into Primary or Secondary. Primary means that you have Sjogrens without any other connective tissue disorder. Secondary means that there is some other disorder present along with this syndrome. The most common disorders are Rheumatoid Arthritis, Lupus, Scleroderma and Polymysotitis/Dermatomyositis.
It is often more difficult to diagnose someone with Secondary Sjogren’s as they are more likely not to have the antibodies associated with Sjogren’s in their blood. Diagnosis is often a long process. It can take up to six years and is sometimes misdiagnosed as CFS/MES, Multiple Sclerosis, Fibromyalgia, etc. That is because this is a syndrome in which all symptoms are not active at the same time and if the disease has progressed, the symptoms are similar to MS, CFS/MES and even Lupus.
There are many tests that are used in diagnosing Sjogren’s. Often blood work is the first to determine if the antibodies are present. Ophthalmologists and Dentists can assist in testing for dry eyes and mouth but that doesn’t determine the reason. A Lip Biopsy is sometimes done by an ENT but there are many pros and cons about this procedure especially if you already have a pre-existing autoimmune disease.
Treatment for dry eyes can begin with over the counter artificial tears in single use vials, not in a bottle. You don’t want the preservatives from the bottle form which will irritate your eyes. If your eyes are very dry at night there are gels you can use. Avoid drafts of any kind.
For dry mouth, do drink water but not too much, also rinse your mouth (don’t use mouthwash as the alcohol will further dry your mouth), brush your teeth after meals and use sugar free hard candy or gum. Rest your voice if your throat gets dry.
For dry skin, use moisturizers of ointments instead of lotions. Don’t take long baths and lightly towel dry. Dry skin can become cracked and turn into an infection. This may seem like an uncomfortable symptom only, but it is important to prevent infections.
There are prescriptions for dry eyes, mouth and skin. There are also punctal or tear duct plugs that are inserted into by an Ophthalmologist. These are used for severe dry eyes. I have had two in each eye at times and then one. When my symptoms change I may need them to be removed or replaced. It’s a bit frustrating but they do help. I also use Restasis which helps too.
There are many other symptoms of Sjogren’s and they may require other specialists, tests and prescriptions. One important thing I’ve learned is not to self-diagnose yourself. Tell you doctor about any new symptoms you may be experiencing. Also inform your doctors about medications they may want to prescribe to see if the side effects are dry eyes and/or mouth. Ask questions! Be your own advocate. If you are not feeling well then take someone along who can do so.
There are many forms of support for people with Sjogren’s. There are local support groups sponsored by the Sjogren’s Syndrome Foundation, online support groups and chats and other chronic illness support groups in your community. Sandy has written a post about this previously.
The prognosis for people with Sjogren’s is good if your medical team is proactive in preventing, diagnosing and treating symptoms. There is a greater chance of getting Lymphoma than the general population so you should be monitored for that and know the symptoms yourself.
As with any chronic illness I have good days and bad. I try to rest when I feel fatigued and not overdo it when I feel well. There are also days when I feel overwhelmed but I know this will pass. I have family and friends that I can reach out to for a phone call or a laugh. I can write on my blogs and vent. And knowing that I can help someone is one of the best ways to keep my mind off of my pity party.
Sjogren’s Syndrome is getting recognized more frequently. There is research into the causes and new treatments. One day this will be a disease that no longer exists. I work for that but for now I also work for creating a knowledge base and support for people who are seeking answers.
Connie Roberts has multiple chronic illnesses. She is a Disability Advocate who uses her blogs to break stereotypes for people with all types of disabilities and chronic illnesses, especially invisible chronic illnesses. Her blog, Brain Foggles is a personal journal of being a wife, parent, friend, church and community member who has days when all she can do is prop her eyes open and try to put some words together to sound coherent. There’s humor and sadness, and it’s all real life. My Chronic Life strives to educate, inform and offer support on all types of health issues.