My symptoms of Sjögren's syndrome

The disease can also affect various organs. I seem to have problems with my stomach, which doesn't do well without a steady supply of saliva. SjS can also affect the lungs in various ways. I have had periods of having difficulty breathing. One of the really nasty things about the disease is that it affects so many different parts of the body. I can't really think of any part of me that feels right! However, I have found various ways to ease matters, and I will talk about those later.

Below, I list my symptoms. I do this because it is useful for me to know what is happening. I stress that SjS affects different people in different ways. Many sufferers seem to have a mild form that only affects the mouth and eyes (though that is bad enough). I seem not to be so fortunate. The disease is cyclic, so the normal pattern is periods of relative wellness, interspersed with bad periods (flares) when the disease is particularly active. When the disease flares, I feel as though a juggernaut has driven over me. At first, I could not read the signs that a flare was on the way, so I was always shocked when it happened. Now, I have become better at reading the signs. For instance, when my toes ache, that is a bad sign. And in addition, I seem to get worse at the time of my period, every four weeks, without fail. It used to be, too, that the switch out of a flare to feeling incomparably better was also very sudden, and shocking because it made me realise how bad I had been feeling. But that has got better too. I suppose that I am better at taking care of myself when I am feeling bad, and also better at listening to the signals from my body. Being able to read the signals has made me feel more in control, and so has made me more relaxed. With one or two exceptions, the flares that I have had so far have lasted two or three days, at least in the initial severe phase. It's much like having the flu over and over again. Sometimes, too, I have longer periods of two or three months when I feel pretty bad all the time, without relief. I have no idea why this happens or what to do about it.

Symptoms

• Exhaustion
• Dry eyes
• Dry mouth
• Dry everything else
• Lung problems
• Stomach problems
• Joint and muscle inflammation
• Psychological reaction

  Exhaustion

  By far the most disturbing symptom so far is the unbelievable tiredness that I feel almost all the time. In one of the Swedish web pages about SjS, this is described as "en förödande trötthet" and that is a good description. I am not quite sure how to translate it, a devastating tiredness, perhaps. On another page, it is called "en förlamande trötthet", a paralysing tiredness, and that is a good way of putting it too. I remember very little of my Irish, but strangely enough I remember the perfect phrase: "tuirseach tréachta", with two of those nice "ch" sounds that most English speakers cannot reproduce. It is simply untranslatable, the kind of thing that one should feel after chopping down trees and building a log cabin in 24 hours in the Yukon in a raging blizzard. (If you are Irish, you will remember those awful books that we had to read in Irish class.) But I feel it first thing in the morning, even after sleeping well! Usually, it wears off a bit during the first hour that I am up (that is if I have managed to drag myself out of bed). And then it comes back again some time later in the day. This can be at 11 o'clock in the morning, or at 2 or 3 in the afternoon. On a really good day, it is at 9 or 10 at night. And I am a night person! Now, I thought I knew what tiredness was. The first period after the premature birth of our now severely handicapped son, John Desmond, was terrible and I was shocked and exhausted beyond belief. And there have been other very difficult periods, for instance when John Desmond has barely slept for weeks on end. But this kind of exhaustion is something completely different, orders of magnitude worse, and it is hard to know how to manage it. When it is at its worst, I can barely stand up, and walking up a slight hill or from my office to the common room involves pushing my body in a way that feels frightening.

  It is probably wise to realise that I am tired in several different ways. It is my suspicion that I have had SjS for many years and that, at least for the last few years, I have been pushing myself harder than is reasonable, knowing that I was very tired, but not that I was sick. This has, I think, taken its toll, and contributed to the feeling of being wiped out that I have now. This I call the second kind of tiredness, the first being that associated with the disease itself, and inflammation in the body. I hope that rest will help with this second form! I was living too close to the edge, even before I realised I was sick. Given my family situation, it is hard to rest for any long period of time, and impossible when John is away. I have a feeling, though, that a period of rest and reflection now will pay dividends in the future, and allow me to function much better in the longer term.

  A third kind of tiredness is caused by difficulty sleeping associated with the disease. Because I must drink water all day (see dryness later), I often have to get up in the night to go to the toilet. Or I wake up because the dryness in eyes or mouth or throat has become too extreme. It is also said that SjS patients sometimes wake because of muscle spasms. I have only noticed this a couple of times. In one survey, it was found that SjS patients typically need 2 extra hours in bed per day, compared to their healthy sisters. I fear that I recognise this (but more by the absence of those two hours in bed than by their presence).

  A fourth kind of tiredness is associated with the feelings of sadness and loss that I have because I have lost my good health. These are natural reactions, but I must be careful not to succumb to hopelessness. Taking concrete steps to ease day to day living seems like a good way to go.

  There may be more kinds of tiredness but that will do for now. If you suffer from fatigue, try reading this nice discussion of fatigue related to rheumatic illnesses. I note that in the US and Canada, arthritis is often used as a generic name for the collection of rheumatic illnesses.
  

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  Dry eyes

  When I saw him in early 2002, the eye doctor found that I produce essentially no tears in one eye, and almost none in the other. Also, the tear film that I have breaks up too quickly. So, I easily fulfil the diagnostic criteria for SjS that relate to the tear-glands. The Swedish phrase is "med råge". That is what he wrote to my rheumatologist, and she said that he had never written that before.

  Having dry eyes is pretty unpleasant. They eyes feel irritated and it is as though there is sand in them. Sometimes, they hurt quite a lot, and the pain seems to be getting worse. I notice that I am more sensitive to light, probably because of small scratches on the surface of my eyes. It seems, too, that the immune system also attacks the surface of the eye. So one is doubly damned. My eyes get tired easily, so the days of working all day at the department, and then late into the night to finish a paper, say, are over, it seems. Or at least they should be. But when the deadline rolls in, I revert to my usual behaviour. It is proving surprisingly hard to change my habits, even when not doing so makes me feel ill. Hmm. One can also get an infection in the eyelids called blepharitis. I need to look into this. Eyelid hygiene is apparently very important, and I do nothing special at the moment. The pages about surviving dry eye pain have instructions about how to make warm compresses for the eyes. I will have to try this.

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  Dry mouth

  My saliva glands are also functioning very poorly. In a test at Sahlgrenska, I produced no saliva whatsoever during a 15 minute test while attempting to dribble over a plastic cup in a room which people kept walking in and out of to get things out of cupboards (not a fun way to confirm that something is badly wrong with ones health!).

  Having a dry mouth is unpleasant. For a start, it causes the teeth to rot. It was my dental hygienist who first suggested that I might have SjS. These days, I seem to be using every flouride-containing product known to man, and I am trying to look after my teeth very carefully. Now that I have a statement from the rheumatologist that I have SjS, I will, hopefully, be able to get an increased state subsidy on some kinds of dental work, provided I apply in advance and can argue that the damage being repaired is related to SjS. (Dental care is very expensive in Sweden, and the subsidy is much less than that for medical care.)

  Dryness leaves the mouth open to various infections, and makes it difficult to sleep. Sometimes, there is a terrible burning sensation, other times just a horrible taste and the feeling that whatever the saliva glands are producing, it sure isn't saliva!

  With a dry mouth, it becomes hard to eat. I have to drink LOTS of water to get the food down. Indeed, I have to drink lots of water (or tea) ALL the time. It has become difficult to eat spicy food, though I am loath to give it up altogether. It is one of the pleasures of life! I have given up red wine and spirits, but still drink white wine and beer. Sometimes it is hard to talk. My throat is very dry too. It is quite tough to give a Swedish style lecture (two times 45 mins.) but it can be done if I drink plenty during the lecture. I tend to be dead on my feet at the end, but that is the effect of the exhaustion (see above). Not having saliva also affects the stomach and digestive system (see below). It leaves one open to infections in the throat and upper respiratory tract, because apparently saliva is the first line of defence. Sometimes, I have pain (due to inflammation, presumably) in the tear glands near my ears. This tends to make me feel nauseous and shaky. Repeated inflammation of the saliva glands seems to be a problem for many SjS patients, and I suspect that I have had it pretty easy so far.

  There are also saliva glands in the lips, and my lips are almost always dry and peeling. It seems to me that I can tell quite well what the day will be like by looking at (and feeling) the state of my lips when I wake up.
  

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  Dry everything else

  The body seems to have lots of mucous membranes, and they can all get dry. Examples are the inside of the nose, the throat, and the membranes around the lungs and the heart! My throat is very dry and this can be a problem when I lecture. Sometimes, I get a dry cough as a result, and this is typcial of SjS. It most often starts up when I have had a long tiring day. Some other dry mucous membranes I will leave to the reader's imagination. And the sweat glands are exocrine glands too, so my skin is getting very dry. SjS patients with dry skin are typcially very sensitive to the sun, but I have always been pretty sensitive to the sun being a freckly Celt.
  

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  Lung problems

  In many cases, SjS attacks only the saliva and tear glands. But sometimes it attacks inner organs, most often the lungs. I had a period of having real trouble breathing in the autumn of 2001 and the first rheumatologist ordered a lung X-ray. That showed no abnormalities. Later, she said she would order a test of lung function, but this never happend. Now, in the spring of 2004, I again have periods of having real difficulty breathing. So, I guess I will have to look into this. It may be that I am suffering from chest infections. This can happen more easily when one has SjS because saliva is the first line of defence against infections in the upper airways. In the last few months of 2003, I seemed to have cold after cold, and that does sap my strength, especially when I am trying to cope with low energy levels even at the best of times. I hope to goodness that my breathing difficulties and high blood pressure are not signs of serious problems with my heart and lungs.
  

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  Joint and muscle inflammation

  SjS is often associated with joint problems, particularly in the small joints of the hands, wrists and feet. I have minor problems with both hands and feet, and sometimes even with larger joints like knees and hips. When I am about to have a bad patch, my toes hurt as a kind of warning sign. Stiffness and pain in the neck and nearby muscles is usual too. I notice this mostly first thing in the morning, though some days it just stays and does not ease up. In the morning, it also often feels as though someone has filled my fingers with water so that they fail to bend properly, and I am generally stiff. Generally, though, I seem to have got off lightly. Many Sjögrens patients have continuous debilitating joint pain.

  I seem to be more inclined to have problems with muscles and tendons. My lower arms also feel very strange pretty much all the time, with a burning sensation in the muscles, and sometimes quite severe pain. The general effect is that I often have a strong feeling of not wanting to use my hands or arms! For instance, I tried fishing with a fishing rod recently and had to give up after a few casts because my hands hurt too much. I am not quite sure what to do about this. I don't yet know when I can ignore the signals, and when I should take them seriously. Apparently, SjS can make one susceptible to repetitive strain injury (RSI, called musarm in Swedish). Since I have earlier had some problems with pain in my hands after prolonged computer use, I probably need to be careful.

  I also get small muscle spasms in various parts of the body. They don't hurt, but they are a bit disturbing, like a tiny mouse ticking away somewhere under my skin. And every now and then, say once or twice a day, I get a mind-boggling pain in my lower left leg. It comes on suddenly and always shocks me. The first time it happened, I thought that maybe I had been shot! I don't know what this is or what causes it. I discussed it with the second rheumatologist, and he didn't know either. I am afraid that it might be a sign of vasculitis, inflammation in the blood vessels. It might also be a sign of nerve damage, I suppose. I also had extremely high blood pressure when it was measured in January (2004) so I don't know if that might cause this kind of stunning pain. If it is still happening in April, I will discuss it again with the doctor. I also have periods of numbness in my hands and feet, followed by pins and needles. This is fairly usual with SjS, and is a sign of slight nerve damage, caused by inflammation either of the nerve or of the blood vessel feeding it. It seems not to be dangerous as long as it it stays at this level. I don't like it, though.
  

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  Psychological reaction

  Well, all this is a big shock! I have had almost three years to think about it, but until recently I was still as upset as when I first heard that SjS was a possibility, in May 2001. It is natural to mourne the loss of ones good health. We all long for well-being! It is so long since I felt well that I cannot actually remember what it was like to wake up in the morning full of energy and raring to go. But that doesn't stop me from missing it, and with a vengeance! It is also very disturbing to feel sick and tired almost all the time, and to lose the capacity to do the things that one has always done. It is worrying not to be able to look after ones family and to do a professional job at work. Depression seems fairly common among SjS patients. It is not unusual that the diagnosis provokes a hidden depression, in which the patient stays at home and claims to be taking it easy and having a good time. I must beware of this, and I suppose that the people around me must also keep a careful eye on me, not that I fancy that! This is the conundrum. I was in a sort of zeroed state (nollställd in Swedish) from May 2001 and for well over a year. Finally, I decided that it was time to move on. I have found that reading, thinking and talking to people have all helped me to feel better about being ill, and to be more confident in my ability to cope.

  When I look back at the last three years, I think that I have had a generally high level of anxiety during that time, and I wonder how much of that is the result of purely physical effects of the disease. Anxiety and general malaise are pretty usual among Sjögrens patients. I stopped taking Salagen, the drug to stimulate the exocrine glands, in early February 2004, and I feel that I have been in better form since then, despite the clear worsening of the symptoms associated with poorly functioning glands. So, I wonder if the drug, which is exactly the opposite of an anti-depressive medication, has been dampening my mood, as well as giving me some saliva (and possibly raising my blood pressure).

  I think that my anxiety could have been alleviated if I had been given more information. This is one of the reasons why I am making these pages. I would like to provide others with the information that I have had to work hard to figure out or find.

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  Last revised February 26 2004.

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