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Diseases > Sjögren’s Syndrome (SS) > What is it going to do to me?

What is Sjögren’s syndrome going to do to me?

What are the signs and symptoms of Sjögren’s syndrome?

People with Sjögren’s syndrome often have eyes that feel gritty. This dryness usually gets worse as the day goes on and can require the use of frequent eye drops. Another common symptom of Sjögren’s syndrome is a dry mouth. This can make swallowing difficult and can also cause dental problems like cavities. Fatigue is a very common problem for people with Sjögren’s syndrome because the immune system being turned on all of the time.

The good news is that most cases of Sjögren’s syndrome are mild and symptoms can be limited to dry eyes, dry mouth, achy joints, and fatigue. That being said, there are cases where the condition can be more severe. Other glands can be affected by Sjögren’s syndrome. These can include glands in the skin, the airways, the esophagus (the tube that connects your mouth to your stomach), and the vagina. These tissues can all become dry and uncomfortable.

The glands can also swell up with Sjögren’s syndrome. This is common in glands around the head and neck area.

Some people with Sjögren’s syndrome also have arthritis. This means the joints are attacked by the immune system, causing pain, swelling, and stiffness. Painful symptoms or fibromyalgia can also affect people with Sjögren’s syndrome.

Other less common symptoms that people with Sjögren’s syndrome sometimes have include:

  • Raynaud’s Phenomenon, which causes the ends of the fingers and toes to turn white or blue in the cold
  • Vasculitis, or inflammation of the small blood vessel – this can look like a rash with lots of little red dots on the skin, usually on the lower legs
  • Neuropathy or painful nerves – this happens when blood vessels supplying the nerves are affected. It can cause a tingling or burning feeling in the feet or sometimes the hands
  • Pulmonary fibrosis – a condition affecting the lungs, making it harder to breathe; this is very rare
  • Kidney problems are also very rare
  • Hypothyroidism – low levels of thyroid hormone

Because people with Sjögren’s syndrome produce a lot of lymphocytes, they are at higher risk for a type of cancer called lymphoma. Although this is very rare, you should make sure you are screened and monitored for lymphoma if you have Sjögren’s syndrome.

Work and Sjögren’s syndrome

The fatigue and pain caused by Sjögren’s syndrome can sometimes limit people’s normal activities, including work and family life. But there are things you can do to lessen the impact of Sjögren’s syndrome on your work and daily routine. People with fatigue often have to learn to balance their activities with the need to rest and conserve energy. Try to keep your stress levels and daily activities balanced, and avoid too many “ups and downs.”

If you have a job where you sit and/or use a computer for much of the day, adjusting features of your workplace can help make working with Sjögren’s syndrome easier. For example, a computer screen shield and proper lighting can help reduce the glare that can dry out your eyes. Adjusting the position of chairs and desks for proper posture can help if you have tender joints. You can also make adjustments to the seat of your vehicle to make driving more comfortable and reduce the stress on your spine.

Travel and Sjögren’s syndrome

Traveling is still possible when you have Sjögren’s syndrome. It is best to be organized prior to your trip to ensure a smooth, comfortable, and enjoyable time. Be sure to take an extra supply of medication in case you have a flare while away from home. See our travel check list.

Sex and Sjögren’s syndrome

Although Sjögren’s syndrome does not particularly cause a loss of sex drive, it can cause pain, fatigue and emotional hardships. Women with Sjögren’s syndrome may sometimes have a dry vagina that can make having sex uncomfortable. These hardships can create barriers to sexual needs, ability and satisfaction. Take comfort knowing that sex and intimacy can be maintained in people with Sjögren’s syndrome … it can even draw partners closer together, especially through improved communication between mates.

For more information on intimacy and arthritis, a great book is Rheumatoid Arthritis: Plan to Win by Sheryl Koehn, Taysha Palmer and John Esdaile. Many of the tips can also be applied to people who have Sjögren’s syndrome, whether their joints are involved or not.

Read more – What can I do about it?