Living with Sjogren’s Syndrome.

What if I told you that Venus Williams, Olympic medal winner and former world number 1, had a debilitating auto-immune disease? She may have won seven grand slams but Venus has experienced times in her life when she couldn’t lift a tennis racquet up. What is this devastating illness? It’s called Sjogren’s Syndrome (pronounced “show-grins”).

I, too, have recently been diagnosed as suffering from Sjogren’s but, up until December 2012, I had never heard of it. You probably haven’t either.

Sjogren’s is not as rare as you might expect, approximately 3-4% of adults in the UK have it but it is one of the most under diagnosed conditions despite being the second most common. The reason for this is Sjogren’s symptoms are so similar to many of the other, more well-known, auto-immune diseases like Rheumatoid Arthritis and Lupus. Like with other auto-immune conditions, Sjogren’s patients’ immune systems react abnormally, attacking healthy tissue and cells instead of viruses and bacteria that enter the body.

Symptoms can range from joint pain to dry eyes. Possibly the worst symptom, though, is the extreme fatigue. This fatigue is not something that can be cured with a long lie-in or a few naps; it is the kind of exhaustion that made me want to cry every time I woke up, no matter how long I had been asleep for. Like many other conditions, there are few outward signs and therefore people presume you’re healthy.

You could go for years, decades even, without a “flare” where the disease rears its head and makes you feel like you’re dying. I went ten years between flares but, as I have gotten older, the time between the flares has reduced and the time it takes to recover has increased. Sjogren’s can appear to go into remission but, unfortunately, it will always be lurking in the background. The problem with that is, sufferers can get into a vicious circle of worrying about the illness reappearing but stress increases the likelihood of a flare. When you’re living through a flare, it’s easy to become depressed and feel like it will never end.

Some sufferers will be “lucky” enough to only have dry eyes and/or a dry mouth to contend with but even these symptoms make everyday life difficult. It may mean that you encounter tooth decay because you are not creating enough saliva. You may also find you can’t wear contact lenses because there is simply not enough moisture in your eyes to rehydrate the lenses when you blink.

However, some other patients can see major organ involvement. Because Sjogren’s attacks the soft tissue in the body, your brain, kidneys and lungs can all be at risk. There is no cure for Sjogren’s but it can be managed with topical treatments, anti-malarial drugs and, in severe cases, immunosuppressants. There are also other services available to help you come to terms with the diagnosis and possible implications. For example, you may be sent to a Health Psychologist to discuss your feelings about the diagnosis. Perhaps you’ll see a Physiotherapist to help with mobility issues.

Venus confessed in an interview that she had been to see doctors several years before she was diagnosed and was told that they were baffled as to what could be causing her joint pain and fatigue. I was told for twenty years – since the age of nine – that I had either Chronic Fatigue or ME. I was turned away by GPs and other specialists, and some even suggested I was a hypochondriac. I was officially diagnosed in May, 2013. Since diagnosis, I have researched the condition and I am now able to connect the dots and identify that all of the previously unexplained health-related “episodes” can be attributed to Sjogren’s.

The thing with Sjogren’s is it’s so under-recognised that you have to be lucky enough to deal with someone who recognises the signs. The blood tests run by GPs won’t show anything up as the tests GPs run are very general. If you get as far as a Rheumatologist or Immunologist, you may still get turned away. You must stand your ground. My specialist told me that the only definite way to be diagnosed is to have a lip biopsy – which has to be ordered by a doctor. Having said that, I’ve spoken to lots of people who have been diagnosed without having to have the invasive surgery.

Sjogren’s common symptoms.

  • Dryness of eyes, mouth, etc.
  • Tooth decay.
  • Dry cough.
  • Difficulty, swallowing, chewing, etc.
  • Hoarse voice.
  • Difficulty speaking.
  • Sensitivity to light.
  • Exhaustion.
  • Itchy / burning / stinging eyes.
  • Mucus in eyes.
  • Dry skin.
  • Exhaustion / fatigue.
  • Joint / muscle pain.
  • Vasculitis.
  • Brain fog.
  • Depression.
  • IBS.

Sounds fun, no? But, don’t worry, I will be writing more articles on this topic, and suggesting other blogs and books that may be helpful. If anyone would like more information or would like to run a feature on this subject, please email me at

Victoria x

27 responses to “Living with Sjogren’s Syndrome.

  1. Thank you for this, Victoria. I’ve sent it around via Twitter, Facebook, Digg, Google+ and StumbleUpon

  2. Great job writing this and putting it into words. When people ask me, “What is Sjogren’s?” I find it extremely hard to describe.

  3. Thank you for writing and sharing this. I will be posting and sharing with family and friends to help them better understand (my immediate family and close friends have educated themselves already which has been a blessing). Many people think Sjogrens is “just” dry eyes and/or dry mouth.

  4. I am a doctor and i can only commend you for writing an excellent informative article. Medical education of the public is the way to go – many people suffer today from conditions that doctors call “idiopathic” – in other words, “Cause Unknown”. It’s there but you don’t know it or what causes it and thus, it receives less-than-satisfactory attention. Lupus, that you mentioned, is another under-diagnosed condition.
    I wish you well and may you receive God’s miraculous touch.

  5. Only someone who has Sjogrens can relate to the fatigue. I have learned to live with the majority of the pain but the fatigue is most debilitating. I have been diagnosed for eight years but have had to carry a bottle of water for twenty. It was a brilliant PA at a pain clinic who recognised my symptoms. For the most part, I have been educating medical people ever since.

  6. Really Informative and also saddened to hear you are going through this awful pain. I’m sure other sufferers will be grateful for your voice explaining what they might not be able to. Great blog xx

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  9. Pingback: Venus Williams Brings Attention To Sjogren’s Syndrome | Lisanne's Fibro Blog

  10. I am sure I have it. I have been told by eye docs (not that I needed to be told) that I have “dry eye”….my mouth is always so dry that I can’t even carry on a conversation for 5 minutes without being unable to continue without a sip of water or a mint….I’ve also had Graves hyperthyroidism, endometriosis, and fibromyalgia (all considered auto-immune issues) and now this. I have an appt. scheduled with a rheumy in a few weeks, thank you for writing about this, i am putting it near the top of my list….I also have extremely high inflammation and have for over 30 years, but not enough for a lupus or RA diagnosis. So they just sent me home and have not treated me. I have very volatile high blood pressure, I am on 4 BP meds and it still spikes whenever I take NSAIDs or prednisone. So I am just a basket full of fun! I am in a flare up right now, my feet are inflamed and my toe joints are on fire. I don’t know if that could be part of Sjorgrens but I am going to just walk in to that appointment and try to tell him everything in a nutshell and pray they can help me. I have been suffering for over 30 years and the past month has been the worst ever. Thanks again, and will be following your blog!!! xoxo

  11. Thank you to everyone who has commented on this blog post, I hope to write more articles on Sjogren’s. I really hope this post has been helpful and I wish you all very well in your journeys.

  12. Great to see another blogger writing about their diagnosis. I was diagnosed in February this year. Thats after more than 10 years if symptoms. And I have been told I was just anxious. 😦

  13. I’ve been dealing with SS for at least 5 years since diagnosis and probably in phases for a lot longer than that. I was the only one of four siblings that had to endure filling after filling when I was young. My eyes were dry when I woke up in the morning for a long time, but helped by drops immediately upon getting up. I always felt like “I had been falling apart since I was 18” with various joint aches and pains, back pain when I was younger, and other things. The first official sign, even though it wasn’t until 7 years later that I would get the diagnosis, was a painful problem with my left big toe that the podiatrist couldn’t figure out. Then by 2003 my feet were burning and hurting and my hands ached from repetitive movement in my job. Once I stopped the job however, the hand issues disappeared but the feet continued to hurt horribly. I got a diagnosis of bilateral tarsal tunnel syndrome and even had release surgery, similar to what they do for carpal tunnel, but it did not relieve the pain and now the left foot was getting more numb and the right foot was following suit. I knew there was also something going on with my hands but “they just don’t feel right” doesn’t cut it with doctors. Just before my diagnosis in 2008, my eyes were getting so gritty dry by the end of my work shift all I wanted to do was get home and close them because sleeping helped moisturize them again. Restasis has done wonders for my eyes, but SS has proven extraglandular with me, attacking my joints with inflammatory arthritis to the point where I now need a second knee replacement (had the right one done last Christmas time, the left this Christmas). The peripheral neuropathy is small fiber neuropathy, finally diagnosed this year, and it is increasing a little every day. But like everyone else, the fatigue is the hardest to deal with. It makes working hard, it makes doing anything fun hard because I never feel completely rested. I hate it.

    • I know exactly how you feel. As I said in my article, I was dismissed as having “chronic fatigue syndrome” or “post viral fatigue” but, as anyone with SS knows, no matter how much sleep/rest you get, you still feel exhausted.
      To be honest, some doctors have treated me as though I am a nuisance. I am so lucky that I had my family, particularly my mum, there to support me throughout – if it wasn’t for her saying “enough is enough” to a registrar who tried to discharged me 2.5 years ago, I would be no closer to a diagnosis.
      I now have a wonderful consultant who is the top SS research guy in the UK and he is so understanding and really knows his stuff. I really appreciate the medical team I have in place now.
      I know what you mean about the eyes and mouth: my contacts, despite being fortnightly, last about 5 days and I had my first filling last year despite my dentist being perplexed as my oral hygiene is so good (diagnosis obviously answered that mystery, too).
      You have my love and sympathy, keep fighting xx

  14. I feel like I just read my own story !! I had my first symptoms about 26 years ago. But was only diagnosed last December myself. I have Lung involvement also .Making the public more aware is all we can do. Thank you for sharing 🙂

  15. Reblogged this on and commented:
    Well said!

  16. Shae, I’m so sorry you are dealing with this, but you are doing a GREAT job of spreading the word, and keeping a “good as possible” attitude! “Show-grins”. We love you! 😉

  17. Well said!! You hit most of my symptoms severe dry eyes and mouth. The fatigue is like being hit by a mat truck and unable to get up.
    Then there’s the brain fog :((
    Can’t remember like I used too. And sure all this adds to depression. A life you had is being robbed away by a illness no one can understand. Leaves you frustrated and angry. But I remain hopeful and exercise to keep my mind and body healthy. And pray for a cure!!

  18. I would like to say for the past 3yrs I had the DX of RA, took many different drugs and even did infusions only to fail them all. I finally changed Rheumys and after reviewing all my labs, guess what??? I don’t have RA but Sjogren’s A, yep from the get go…. All my labs indicate Lupus also. Im so happy I found a new doctor and now can move on. It’s amazing how close they run together and the pain can make one lose their mind, hair, strength, you get the idea. My favorite saying is ~NEXT~ and we forge ahead…. Thank you for sharing…. ❤

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  20. I have exactly those same symptoms. Since childhood I have I bloody and purulent eyes, sensitivity to cigarette smoke and artificial lighting. In 1982 he started to hurt trigeminal nerve. About 10 years ago I had the flu. After the flu, I did eyelid eczema. And I also have endless dry mouth and dry lips. 5 years ago I underwent surgery of the thyroid and subsequent radioiodine therapy. The last three months I have a bump on the cheek and my saliva is full of pus. Looking for alternative treatment. I found that people perform well with paleo diet.

  21. Excellent piece Vic! You’re a star to be living with this debilitating and worrying condition, being so creative, and helping other people to be creative … Power to your elbow, lady!

  22. Pingback: Sjogren’s Syndrome: a misunderstood condition. | elementaryvwatson

  23. How have I never come across this before?! I have Sjogren’s too which took decades to diagnose. My website is all about Sjogren’s and lifestyle improvements that can help ease symptoms. I’d love to talk!

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