Living With Sjögren’s Syndrome

I was diagnosed with Primary Sjögren’s Syndrome about 30 years ago. With me, it sits alongside Antiphospholipid Syndrome and Fibromyalgia. To celebrate World Sjögren’s Day on July 23rd I have written this blog with the aim of raising awareness of the condition.

What is Sjögren’s Syndrome?

First, let’s tackle how you pronounce  Sjögren’s – ‘show-grins’. Most people I have mentioned it to have never head of the condition. It is an auto-immune disorder that can be Primary (as in my case) or Secondary to other conditions. The most common symptoms are dry eyes and mouth. The condition is much more common in women than men, and over the age of 40. Though in my case I was 30 when I was first diagnosed.

Symptoms of Sjögren’s Syndrome

There are a number of symptoms that are relatively common but the symptoms can be quite wide ranging. Here are the most common symptoms:

• Dry eyes – imagine getting an irritant into your eye, so it burns and itches and feels gritty. That is what it is like to have Sjögren’s. It can cause light sensitivity (one of my main issues) and blurred vision. I can’t stand bright lights (I am sure I should have been a Gremlin!).
• Dry mouth – sometimes it can be difficult to swallow or speak. I get a sore throat quite a lot. I have had a lot of problems with swallowing in the past. Eating soup can be a nightmare after the first few spoons. The dryness can lead to a tendency to develop oral thrush.
• Dry skin and skin rashes, sometimes aggravated by the sun.
• Tiredness
• Vaginal dryness
• Jaw and ear problems (swollen or blocked salivary glands)
• Muscle or joint pain or stiffness
• Lung issues – such as a persistent dry cough.

My Symptoms

I suffer from most of the above symptoms. I am prone to shortness of breath, with a dry cough, as well as an irritable bladder. The bladder issue is like having a urinary track infection (UTI) but without the infection! This is known as painful bladder syndrome, or interstitial cystitis. I also have irritable bowel syndrome but that could be attributed to the Fibromyalgia.  Also, numbness, tingling and burning in my hands and feet (peripheral neuropathy). It is always difficult when you have multiple illnesses as some of the symptoms can overlap. My voice can be a problem and I have had to have speech therapy in the past.

As with other auto-immune conditions, the symptoms can come and go with periods in remission punctuated by flare ups.

Diagnosing Sjögren’s Syndrome

It can take some time to get a diagnosis as it is still not a well known condition. When you find the right specialist to help you, there are several diagnostic tools that are used as follows.

1. There are blood tests to look for antibodies and that is often what doctors start with. But just to complicate things not everyone with Sjögren’s has antibodies. I didn’t when I was first diagnosed and it was only on a recent blood test that they actually showed up.
2. Eye tests – a visit to an ophthalmologist (doctor) where eye drops can be used to look at the surface of the eyes and tear distribution. One uncomfortable test is a Schirmer test. This involves small strips of filter paper being placed in the lower eyelid pouch. The eyes are kept closed. After five minutes the strips are measured to see the amount of tear production.  This was one of the key tests for my original diagnosis.
3. Lip biopsy performed with local anaesthetic. A few salivary glands are removed for investigation for inflammation. I had a lip biopsy a couple of years ago when I actually had antibodies in my blood for the first time but failed a Schirmer test during a treatment review. The lip biopsy was conducted to double check the diagnosis. It confirmed Sjögren’s. Although this is done under local anaesthetic it does leave you with a sore mouth for a few days. I also had numbness in that area for a couple of months.
4. A saliva test – well, a spit test, measuring how much saliva you can spit into a cup over a five minute period. I have no experience of this test.

Treatment for Sjögren’s

Each person will have their own treatment plan. This may include:

• a medicine called pilocarpine – tablets that help the body produce more tears and saliva.
• HRT can help with vaginal dryness.
• Ibuprofen (a non-steroidal anti-inflammatory or NSAID) is an oft recommended painkiller.
• Hydroxychloroquine – note this takes several months to begin to work and is not suitable for everyone.

Of the above I use Ibuprofen as needed and Hydroxychloroquine daily. As there is no cure for Sjögren’s this is long term medication.

Living With Sjögren’s Syndrome

There are lots of things that you can do for yourself to help with the condition.

For Dry Eyes

One of the biggest things for me is to avoid dry atmospheres, winds or smoke. Avoiding spending a lot of time reading, staring at a screen (tv or computer) can help. Certainly, I gave up reading some time ago. I know people who wear wrap around sunglasses to stop the air drying their eyes, not something I have ever needed to use.

I need to clean my eyelids regularly. Regular check-ups with an optician is a must. I find eye drops very helpful at certain times of the year. We have log burning stoves so winter time I sometimes need to use eye drops to freshen my eyes. I also need to humidify the air. The main time for eye drop use for me, however, is during the hay fever season. Having your eyes irritated by pollen is no joke when you have Sjögren’s as you don’t have the tears to wash it out. So I use eye drops several times a day to do the job. Just a note on eye drops, there are some to use and some to avoid and it is best to take advice before trying them.

For Dry Mouth

Good oral hygiene is important and it is recommended that you brush your teeth twice a day with a fluoride toothpaste. I am afraid for me this is not possible as my mouth is so sensitive the teeth brushing makes me vomit. But I do my best! An antibacterial mouthwash is a good idea if you can manage it (I can’t). Regular checks with a dentist are important.

Diet is important. No snacking between meals, avoiding alcohol and sugary drinks. Drink plenty of water. All of that I can manage. Chewing on sugar-free chewing gum is one way of encouraging saliva production, also sucking on ice cubes. Regretfully my sensitive mouth prevents me from doing either so I stick with sipping water frequently.

I haven’t mentioned smoking (as I don’t) but it is recommended that you should stop if you have Sjögren’s.

Although I have never needed to use them, there are saliva substitutes that you can use (spray, lozenges or gel).

For Dry Skin

I am the queen of dry skin and rashes with flare ups of dry, itchy and scaly skin. I have to be careful in the sun because I can develop a rash. Avoiding perfumed soap and other perfumed toiletries has been a great help to me. And remember what one person considers safe can be another person’s allergy. As with all of these things, it is trial and error. I have tried a lot of creams and toiletries to find the ones that suit me. It seems that each person’s journey really is individual with this. I have a lot of allergies and intolerances which makes the search for these items a little bit more complicated. The important thing is that they are non-perfumed and have emollient properties (moisturizing).

For Dry Vagina

Use lubricants!

Jaw and Ear Problems

Problems with swollen or blocked saliva glands can be quite uncomfortable. I have found self massage of the saliva glands can really help. You can read more about how to do that here.

Muscle and Joint Paint or Stiffness

Would it surprise you to know that exercise and weight loss are recommended to alleviate this symptom? Not always so easy when you don’t feel well or when you have other conditions like Fibromyalgia which make any exercise a marathon. For me, keeping my joints warm is a must. I have found the hydroxychloroquine has really helped with my aches and pains.

Complications of Sjögren’s Syndrome

Just to quickly mention these, eye damage is obviously a potential issue and why regular checks with an optician are needed. Any lung problems need monitoring. There can be pregnancy problems. People with Sjögren’s Syndrome have an increased risk of getting a type of cancer called non-Hodgkin lymphoma. The chances of getting this, however, are small and it can be cured if it is caught early.

Support Groups

There are many support groups for those diagnosed with Sjögren’s Syndrome. It is always nice to know you are not alone. Google is your friend here and you should be able to find one in your country. For example The Sjögren’s Foundation in the USA and The British Sjögren’s Syndrome Association.

I hope that by writing this, quite personal, blog about my condition, someone may read it and find it useful. I am not a medical doctor and can only write from my own experience which may be very different from another Sjögren’s sufferer.

Before you go

My name is Dorothy Berry-Lound an artist and writer. You can find out more about my art and writing at https://dorothyberryloundart.com.

You can follow me on Facebook and Mastodon.

Thank you for reading!