Musings and Snoozes

The same, but different

on November 26, 2013


So, I have a new diagnosis, or at least a secondary one. Not sure how I feel about this…

I decided that I wasn’t going to go to my appointment yesterday and just tell them everything is ok. Because it’s not. The last few months have been pretty hard and I’m rapidly heading towards not being able to get up in the morning. I know the cold, dark starts don’t help, but when you wake up for the hundredth time in a row feeling like you haven’t slept since June, you do start to struggle a bit. So with determination, I headed off to my appointment ready to rant.

As it turned out, I was too tired to rant by the time I’d done half a day’s (pretty stressful) work, driven across to Aylesbury, found a parking space, walked halfway across the hospital to my building, and then sat waiting for half an hour to be seen. So ranting turned into more of a pathetic “I’m fed up” sort of mope, but it must have got the point across because my specialist asked me all sorts of new questions.

Now I’ve had plenty of little niggles over the last few years, but the majority of them I just put down to bad luck and/or something I just have to live with. Turns out I should learn to mention these things every now and again, particularly in this case a) having a dry mouth nearly all the time and b) my bloody awful teeth that seem to constantly need more fillings, no matter how well I care for them. The latter of these had been bemusing my dentist for months, to the point that he even made me keep a food diary to make sure I wasn’t secretly having vodka and jelly babies for breakfast every day. But it seems we might have an answer…….. :

Sjögrens Syndrome An introduction to…..

No, I’d never heard of it either and given that only 3-4% of people suffer it, I’m not surprised (go me being special though!) Essentially it seems to boil down to being very much like fibro with additional dryness issues (eyes, mouth etc), but it’s an autoimmune disease so it’s my body’s immune system attacking all these moisture creating bits of me and therefore causing the problems. But this then in turn comes with extreme fatigue, muscle and joint pain/rheumatoid arthritis, IBS type symptoms (my stomach/intestines get attacked too 😦 ), rubbish circulation, lack of temperature control (blue fingers to excessive sweating in five seconds) and rubbish teeth, due to the lack of saliva producing going on. Essentially all just a bit ugh really.

So the next step is to have a lip biopsy (meep) and then put me on some new medication. Can’t say as I’m thrilled at the thought of a biopsy (I am a wuss at heart), but I’m assured that it’s fairly harmless and heals pretty quickly. The drugs sound promising and much more effective than throwing antidepressants at me, so I’m cautiously optimistic.

So there we are. First ME, then Fibro and now Sjögrens. I must say this one has the best name of the lot, so here’s hoping this one sticks. If I’m going to be ill, it might as well sound good 🙂


One response to “The same, but different

  1. DJStead says:

    Here’s hoping more of a diagnosis leads to more ways of treating stuff 🙂

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