Hi Angie, Interesting to hear about the Lichen Planus. They thought I had it back in 2008 - though not in my mouth
- but discovered on biopsy it was fungal. They eventually cleared the worst of it with a mixture of different creams and pills but it still recurs every few months. Another of the joys of Sjogren's, I imagine!
Sorry to hear you're going through a bad time at the moment. My own bad times are well in the past now (so far, anyway!) but I still remember what it was like. Sometimes I could hardly open my mouth to eat because of the bleeding sores at each corner. Same thing in the corner of one eye, endless attacks of conjunctivitis, waking some mornings with my left hand a painful claw that I couldn't open till midday, etc. etc.
I've been fine for the last five years, apart from a bit of stickiness in one eye, the odd attack of Reynaud's in one hand and the usual aches and pains we can all expect at 70.
I'm interested in what you say about trusting your own instincts. That makes me think you'll go into remission too eventually. I'm a former nurse and started noticing quite early on in my career the connection between body and mind, in most diseases but particularly the auto-immune kind. I couldn't tell you how it works, but I know I can influence my own symptoms. It's nothing as simple as "thinking positively" (though that never hurts) but rather that I try to acknowledge that I'm aware I'm doing this to myself somehow and at some level. That doesn't mean I'm blaming myself of course. And it definitely doesn't mean my symptoms (or anyone else's) are imaginary. You can die of a psychosomatic illness.
I suspect you're the kind of person who may be working with affirmations. I've used this method to help with other things, though it didn't seem to help with Sjogren's.
The turning point for me came about five years ago when something happened that was so extraordinary, there was no longer any escape from realising I was somehow in control. I've posted this in another Sjogren's forum but I'll re-post here at the risk of boring everyone to death.
One of my earlier symptoms, starting a year or so after the dry mouth, was an unpleasant tingling sensation in my right big toe. This got steadily worse over the next few years until the toe was almost completely numb. The numbness was real, not imagined. My GP established this by poking my toe with the sharp and blunt ends of a needle when I couldn't see what she was doing. She wasn't interested - said it was peripheral neuropathy due to old age. (I was in my early 50s.) By this time I had a whole ragbag of apparently unrelated symptoms which no one - GP, dermatologist, dentist, ophthalmologist etc. - had managed to put together. I hadn't spotted it myself either - Sjogren's is one of the less common autoimmune diseases and I had no recollection of ever having heard of it!
Over time, I got used to taking extra care of my numb big toe, just as a diabetic would, but then another problem developed. Every time I touched the area where the nerve runs along the inner side of the instep to the big toe I got a terrible feeling like an electric shock. I had to psych myself up to wash and dry my foot every day. Putting on shoes - and especially boots - was agony too, but I used to find that once the shoe was on, the sustained pressure didn't hurt any more.
I took this on board as well, and assumed it would always be the same. Then one day, the electric shock sensation wasn't there. Just like that! And I had normal sensation in my big toe again. It hadn't been gradually improving - the agony of touching my foot had been very much there just the day before. As a nurse - and one with specialist neuro training as well - I knew proven nerve damage couldn't suddenly heal like that, especially after more than ten years. But it had.
That night I was awoken by a terrible tingling sensation... in my left big toe. It felt exactly the same as when it had started in the other big toe all those years earlier. I sat up, put on the light (the bedside one - the light in my mind had already gone on by this time!) threw off the covers and said out loud to the offending toe: "No, we're not doing this!" Then I went back to sleep. After three or four days the tingling stopped.
Over the next few months, all my other Sjogren's symptoms subsided then virtually disappeared. I realise they might come back one day, of course, but this experience gave a real boost to my confidence in dealing with my own immune system.