Flare Ups
Posted , 6 users are following.
So how long do flare ups usually lasts ? My eyes have gotten so dry over the last few months that I no longer produce even emotional tears out of my right one (I mean I do a little but nut much and a lot less than the left eye). Do you think this is a flare up and it will improve or is this my new normal
1 like, 23 replies
Kablois AndreaB1967
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AndreaB1967 Kablois
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daniw83 AndreaB1967
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How do you cope with this? Does yours come & go
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AndreaB1967 daniw83
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Kablois AndreaB1967
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I haven't been diagnosed yet - still waiting for an appointment, but my GP is pretty sure I have SS and maybe some other lovelies! To be honest, my eyes have been the least problematic issue and I have only had a ten day period where they were unbearable. during that time I put thick, viscous drops in every half hour, plus other drops. Gently washing my eyes with a hot damp face cloth provided surprisingly good relief, if short-lived. My mouth is my real problem as I am plagued with constant sores and ulcers from the lack of saliva. I also have tendon issues but it's hard to pinpoint. Like Lily I have had months of muscle/tendon pain in my upper arms that was extremely painful and disabling but that has settled down now, although I can feel that I have to be careful all the time. I have very mild Raynaud's without any real pain, I suffer terribly from the cold (hypo-thyroid) and also with stomach cramps.
daniw83 AndreaB1967
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I get pain in my big toe & they said it is neuropathy. Its really annoying! Im on pregabalin. I get pins and needles & when it comes on you think Oh please go away soon lol x
lily65668 AndreaB1967
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Yes, Sjogren's really does go through flare-ups and remissions.
As kablois quite correctly points out, contributors on any forum about a specific condition, like those who join associations for sufferers, tend to be a statistically self-selecting group - i.e. the ones whose sufferings are the worst. This can give newbies the impression that everyone suffers badly.
That really isn't true - only for the unfortunate minority, for whom I have every sympathy. In the 22 years I've had this condition I've had some bad times but I've also had remissions. One lasted five years. My most recent flare-up was in many ways the worst - not because it affected multiple systems like earlier ones, but because it was so painful and disabling. This time round, only the tendons in both upper arms and left wrist, plus my right elbow and left thumb joints were affected. For good measure, I got a pinched nerve in my neck at the height of the flare, and suffered neuralgia and weakness in my left arm as well. This went on for a year - well, longer than that as far as the upper arm tendons were concerned. I live alone, and for six months at the height of the flare, I couldn't use either hand properly. Couldn't do all kinds of household things - peel potatoes, open jars or bottles, wring out cleaning cloths, turn my mattress, make my bed properly, you name it. I had to work out all kinds of alternative ways of doing things, and my neighbours were sympathetic about my occasional appearances on their doorstep, asking for wide-necked jars to be unscrewed. (Bottles could usually be managed with the nutcrackers.)
I confess I started to lose heart after about nine months of this, for the first time ever. I even started to doubt my own message and my personal decision not to take potentially damaging medication. However, about two months ago the pain started to subside. Things moved very quickly and now I'm just about normal. I even opened half a bottle of champagne the other night (to celebrate) with the aid of nothing more than my grippy cloth! Elbow now completely pain-free, slight soreness in upper arms but nothing to write home about, and though my left thumb doesn't have quite the range of movement it used to and the joint looks a bit lumpy, everything is functioning perfectly again. Now I'm having a minor problem with asthma (for the first time in my life) and my doctor is raising vague doubts about early-onset COPD, but I think it's just part of my annual tree pollen allergy. I'll get it investigated, but I don't doubt my body will see off this one too, with the right kind of support.
Another form of "remission" I had in the first 15 years was the symptoms moving around from one system to another, usually at a rhythm of approximately six months per system, though it was variable. So just when I felt I couldn't cope with the dry mouth any longer, it cleared up and suddenly I had dry eyes, though the peripheral neuropathy was a constant throughout this period. Then it moved on to Reynaud's syndrome (my left hand kept going cold and white, which was very painful). Because of this, I never had to cope with too many symptoms at the same time for too long, with the exception of complete numbness in one big toe - but even that cleared up literally overnight after 10 years.
Don't despair. You might just be one of the unlucky ones - three months ago I was starting to believe I'd morphed into one of them! - but statistically you're far more likely to have long remissions, without any overall worsening of your condition during flares. I can honestly say that in general I feel better now, aged 72, than I did when it all started at age 50.
Once again, my sympathies to everyone who hasn't had the same experience as me.
AndreaB1967 lily65668
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lily65668 AndreaB1967
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I can't see any reason for being scared to drink alcohol - unless you're on meds where it's not allowed or you have a drinking problem, of course. Although I try to maintain a healthy lifestyle and diet, I admit to drinking moderate amounts of wine with my evening meal practically the whole time I've had SS. The only exception was when the dry mouth was at its worst, back in 1995. Throughout the summer and autumn of that year I had no urge to drink any kind of alcohol, as it hurt my mouth and tasted awful anyway. I wasn't keen on tea during that period either, preferring tissanes.
I'm not suggesting you drink yourself under the table every night or hit the neat vodka, but a small tipple of whatever you fancy can be quite beneficial. Half the battle with managing SS is maintaining morale.
And your eyes could well eventually improve, at least a bit. Though there's no guarantee your symptoms won't move elsewhere, of course. Mine were pretty bad 20 years ago - I once had four attacks of conjunctivitis in three months and my right eye regularly bled from a crack in the skin at the outer corner. I still get the odd problem now - usually when I stupidly go out without my goggles in dry, windy weather or get careless around aircon or fans.
Are you seeing an ophthalmologist about this? The one I saw was absolutely useless - I hadn't yet been diagnosed with SS at that time and she didn't even test for dryness, just tested my sight and pressure and shrugged her shoulders when I asked about the conjunctivitis. But a lot of people on here seem to have been helped. I know some of them have had plugs inserted in their tear-ducts to retain the small amount of tears they do manage to produce.
Don't give up hope!
AndreaB1967 lily65668
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lily65668 AndreaB1967
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jennifer09136 AndreaB1967
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Kablois jennifer09136
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Kablois
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jennifer09136 Kablois
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AndreaB1967 jennifer09136
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lily65668 jennifer09136
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I'm a firm believer in mind-over-matter, particularly when it comes to auto-immune conditions. I often wonder whether this has contributed to my symptoms remaining relatively mild. Whenever the pain, dryness, tingling - or whatever the current symptom is - starts to become unbearable I always hold onto the idea that it won't always be like this, or at least not as bad as this, that I've come through before and I'll do it again. So far it's worked, though I admit I wobbled a bit in the most recent flare-up (and yes, I will use that word!) of tendinitis etc. And now I'm almost completely pain-free again. Of course, my right eye is starting to play up a bit now but that's how it goes for me.
Kablois jennifer09136
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