Do you remember the old camp song, “How dry I am, how dry I am, nobody knows, how dry I am”? I know it sounds pretty goofy but we were kids. I also remember seeing it in old TV shows and very old Western movies as some poor old, down on his luck drunk is sitting behind bars singing his woes.
I was inspired for this blog today because I have secretly been singing that song to myself because I have been very dry lately. Sjogren’s is just one of the four diseases that seem to enjoy living, uninvited in my poor old body. This particular horror is called Sjogren’s Syndrome. It is my hope that many of you who suffer from SS will find something new in this piece. I have had it on my mind lately because I was put on a new pain medication two months ago and it has dried me out even more than usual. How dry I am.
Sjogren’s Syndrome was re-discovered by a Swedish ophthalmologist in 1933 when he made the connection between dry eyes and dry mouth, both symptoms of SS and connected them to the presence of rheumatoid arthritis. It is not to be confused with Mikulicz syndrome which involves swelling of many of the glands of the face and neck. Dr. Sjogren’s made the distinction between the two. It should also be differentiated from Sicca complex which has the eye and throat dryness but no other symptoms throughout the body and no connection to rheumatoid disease.
Dry eyes are the result of the lacrimal glands which make tears, and dry mouth which results from diseased salivary glands. Called aqueous tear deficiency in the eyes because of the decreased production of tears. It just occurred to me I sound a bit like a commercial for a dry eye condition that is always on TV. Dry mouth which is just as annoying and dangerous is due to a deficiency of production of mucus from the parotid, sublingual and submandibular glands. Sjogren’s syndrome can also cause damage and destruction to any part of the body that secretes moisture, such as the vagina in women, the throat and esophagus. I have also come to wonder about its effect on the digestive system as it is full of mucosa that reacts to dehydration and causes severe constipation. There is still much to be learned about the whole body and Sjogren’s. We also know it can affect the skin directly.
Let me tell you about the two types of Sjogren’s Syndrome and then I promise you this blog will stop being so “dry,” please pardon the pun. In a very generalized way, primary Sjogren’s is a dryness problem basically and most commonly of the eyes, mouth and sometimes the throat and swallowing mechanisms. Secondary Sjogren’s syndrome involves the same symptoms with a few more tacked on like rheumatoid arthritis or another form of rheumatoid disease. For me it is arthritis and a rare form of cartilage disease called relapsing polychondritis. Keep in mind the whole body needs moisture. It is now believed Sjogren’s can affect any organ in the part that has secretions.
I have had Sjogren’s Syndrome for many years and contracted it at the same time I developed other rheumatoid problems. What is it like to live with secondary Sjogren’s? It is constantly knowing your eyes will need drops throughout the day and knowing which drops you like that are available over the counter and the drops ordered for you by your ophthalmologist. More women in middle age are affected by this than men or younger folks, but it can strike at any age; therefore, you find many of us females who have it with drops in our pockets or purses constantly. Most of us with the disease have learned the importance of avoiding ceiling fans when possible, strong winds and direct heat from a small portable heater or fireplace. This means that trip to the Sahara Desert is out.
When one’s eyes are dry and the tears are missing, the eye behaves much like a magnet, attracting lint, eyelashes and any other minute particles floating around out there. Sand, salt air, and extreme temps as on hot days as well as freezing weather have to be considered. Personally, in the course of one day I use drops whenever I remember, ideally every couple of hours. During a flare of redness and burning I will use moisture drops every half hour. These drops are usually over the counter moisture drops. I prefer the ones for allergies to take care of the usual redness and irritation. I also use an allergy drop ordered by the eye doctor. During an extreme flair I have cortisone drops but those have to be used sparingly due to their possible effect on optic pressure. You and I definitely don’t want to go there. However, there are times when a flair can keep me awake with intense pain and the steroid drops are the only way to get relief. I usually have those bad nights after a long trip in the car with the air conditioner or heater blowing cool or hot air around. When extreme, stubbornly painful bouts occur, I have eye masks for nights to keep out everything and some of the good ones also come with a comforting little plastic pouch that fits over both eyes and can be chilled in the refrigerator. Nights are a good time to use the oil based drops which are thicker and stay on the eyes better but do make it difficult to see clearly. I rarely use these because of the mess they leave behind and the sticky residue which attracts more tiny fibers or hairs. I am also awake during the night for various reasons and don’t feel safe if I can’t see clearly. The eye doctor can place tiny silicone plugs into the tear ducts but in my experience this is a temporary fix as the plugs fall out.
Sjogren’s syndrome involving the mouth can lead to swallowing problems, instances of choking and can cause a hoarse voice due to the excessive dryness. Without the correct amount of hydration all day long, a sore throat can develop and it is not uncommon to awaken to a sore throat. Yes, I drink all day and at night whenever I am awake. I constantly keep bottles of seltzer water wherever I am. We buy the non-caloric, unsweetened natural spring brands at Costco box stores. I should drink water but I’ve never been a water drinker, even as a child. I also drink a lot of juice for other problems this causes in the bowel but have to beware of all the natural sugars which can cause cavities. This brings me to one of the biggest problems associated with Sjogren’s and that is oral care.
Regular and vigorous brushing is a must for all Sjogren’s patients and many of us have had some serious dental issues. Dry mouth is dearly loved by bacteria, giving them a friendly environment. Regular dental visits of at least twice a year are encouraged as well as flossing, Waterpiks or automatic brushes. There are also fluoride toothpastes that can be left on all night. There is some controversy about fluoride now so they are in question. You know, it’s interesting how so many things vacillate between good for us and bad depending on the current trends. It is recommended one chew on sugar free gum or suck on sugar free candies to keep the mouth moist. There are a few special brands on the market. I have yet to find a mouthwash or gum I like. There are saliva substitutes but frankly, they are pretty disgusting. There are many fine lip balms on the market and I use one nightly.
Sjogren’s syndrome can also cause immense fatigue for the poor patient who suffers from it as well as joint and muscle pain. Vaginal dryness in women is a common problem as well as skin rashes, dry coughs and numbness and tingling of the arms and legs. This despicable disease can also cause problems in the lungs.
It is a vast subject which is impossible to cover in a short blog. The important thing is to get diagnosed properly if you feel you suffer from it by an internist, ophthalmologist, or rheumatologist. There are tests that can be performed on the eyes or other saliva tests for the mouth. Lab work may reveal it or may not. It, unfortunately, can take many years to diagnose which is a matter of frustration for patients and doctors. The cause is still unknown but it is believed to be caused by the genes or by a viral or bacterial infection one is exposed to.
Those of us who have been diagnosed need to tell any of our other physicians, especially if they are treating any of these symptoms. Any time I have had surgery I have talked to the anesthesiologists about it so they can moisten and tape the eyes as well as be aware of the throat structures for dryness. When in the hospital your doctor can talk to the pharmacist about the kind of moisture that is available for the mouth such as artificial saliva. This is especially important if you cannot drink and hydrate your body while in the hospital. Many medications can cause dryness to be intensified and always need to be considered. Some of these are meds for diarrhea, nausea as well as pain meds. Sometimes we can be warned ahead of time by reading the label, other times we just have to try the med and stop it if the dryness is too severe to handle.
I do hope this brief look at a very complex disease has been helpful to many of you, my readers who suffer from this or other forms of rheumatoid disease. There is a great deal of information available online and new products coming out frequently. Talk to your doctors about these. Hang in there my friends, just take this complex problem one day at a time. I do it and so can you.