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Flare Ups

Posted , 6 users are following.

AndreaB1967
AndreaB1967

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 sad

1 like, 23 replies

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  • Kablois
    Kablois AndreaB1967

    Posted

    I totally hear you Andrea. This is my most pressing query since my symptoms worsened around 5 months ago. I am totally new to SS and would dearly like to understand whether the notion of flare-ups really exists in SS (as in many AI illnesses). Are there real periods of respite / improvement for many sufferers or does it tend to be degenerative and get worse over time? I guess the hard thing is that on a patient forum one tends to hear from those that are not doing so well. The ones that are in remission or doing well tend to wean themselves off the patient support forums. Sending you warm thoughts and courage.
    • AndreaB1967
      AndreaB1967 Kablois

      Posted

      Well I have never been diagnosed with SS   my blood tests were negative.  But I have the extreme dry eyes and neuropathy.  I have read where things do tend to get better  then worse  then better.  Apparently AI disorders work like that.  I just wish  there was something I could do to improve my eyes.  I am on Restasis, all 4 tear ducts plugged and I use steriod drops  with minimal improvement.  So what are your symptoms and how were you diagnosed.
    • daniw83
      daniw83 AndreaB1967

      Posted

      Hello andrea. I have SS i dont have the dryness. But i have aches & pain & neuropathy in the arm

      How do you cope with this? Does yours come & go

      X

    • AndreaB1967
      AndreaB1967 daniw83

      Posted

      Hello Daniw   well my neorpathy is not bad yet  thank goodness.  I get the pins and needles feeling in my feet mostly at night and it only last for a few seconds each time.  It is really more of an annoyance.  And sometimes for no reason  my foot gets numb, that is so weird  but aagin never lasts long. I have started to get aches in my muscles  but again not too bad and I take aleve if it gets too bad.  I have read that the can prescribe seizure type meds for the neorpathy (I think it does something to the brain wave patterns) to help with the pain  but that is all I know about what helps.  maybe you Dr can shed some light on some treatments. And yes  mine comes and goes.  I never have anything constant
    • Kablois
      Kablois AndreaB1967

      Posted

      Hello Andrea,

      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
      daniw83 AndreaB1967

      Posted

      Thank you

      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
    lily65668 AndreaB1967

    Posted

    Hi Andrea and kablois,

    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
      AndreaB1967 lily65668

      Posted

      Lily  you are always so informative and positive  thank you for your responses.  And congrats on haveing the champagne.  If my eyes ever do get better.  I will celebrate.  Too scared to drink any alchol right now smile
    • lily65668
      lily65668 AndreaB1967

      Posted

      Hi Andrea,

      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
      AndreaB1967 lily65668

      Posted

      Oh  yes  I have a very good DR.  He has given me a TBUT test and a schmimers test.  He is the one that suggested I get tested for Sjogrens because of the dryness.  i wear sclera lenses for dryness and irregular cornea from lasik years ago.  Oh  I do not drink alchol  because it dehydrates me  that is the only reason.  I do have the occasional drink though.  Yes  I have all ny tear ducts plugged, take restasis and steriod drops 2 times a wekk.  I also get checked for cataacts and pressures  every 3 months.
    • lily65668
      lily65668 AndreaB1967

      Posted

      Glad to hear you're getting the help you need, Andrea. And sorry I didn't read your earlier post thoroughly - the one in which you said you already had the ducts plugged. I'm no expert, but it does sound as if your eye condition might be due to something else, maybe in addition to SS. Some people get doubly unlucky. I hope your peripheral neuropathy clears up at least. Apart from the blip with the pinched nerve last year, it's been 10 years since I had a problem with it.
  • jennifer09136
    jennifer09136 AndreaB1967

    Posted

    I think this discussion highlights that SS is totally individual and we all need to be a little careful re worrying about how we are or are not affected. I have had SS now for 32 years and this is the 1st time i have heard about "flare-ups" and symptoms totally disappearing. i have dry eyes and mouth and no neuropathy or joint involvement. Never have. I describe my eyes and mouth as good hours/days/weeks and bad hours/days/weeks. If indeed there are "flare-ups" then my cycles are very short. Neither ever leaves me, but some days are better/worse than others. After 32 years my best advice is to manage as best you can and assimilate your symptoms into your daily life eg I never leave home without eye drops or sugar-free mints, and i choose from a menu not what i love or feel like eating, but what i can manage depending on the company. If a big group i can eat choclate cake. If just 2 of us I won't as the chocloate lingers along my teeth and gums and is embarassing if i am responsible for 50% of the conversation in close quaters. Others may not have this issue at all so develop your own strategies from experience.
    • Kablois
      Kablois jennifer09136

      Posted

      Interesting... and exactly what I didn't want to hear I suppose - the fact that there may well never be a day when I feel like I used to... From what I gather Lily's experience is not the norm and most people never go into remission / dormancy. Are you on Pilocarpine or any other meds for the dryness?
    • Kablois
      Kablois

      Posted

      Also, do you not have mouth sores / pain / irritation etc. ?

       

    • jennifer09136
      jennifer09136 Kablois

      Posted

      I did a 6 month trial of Pilocarpinelast year but did not find it made any difference. Others have found it very useful so thats another individual thing. Its worth trying. I dont get mouth sores but i cannot eat any spice at all as it irritates all the surfaces of my mouth, gums, tongue, throat etc. Its irritation to the point of pain which takes up to 20 minutes to subside. So i never eat anythng with any spice at all - limiting and boring!! But abstincence is better than pain. Dont think too far ahead is my best advice. When i am asked now if my mouth or eyes are bad or worse i cant answer. My mouth is my mouth and I dont know any different so its OK. Hang in there and dont overthink it.
    • lily65668
      lily65668 jennifer09136

      Posted

      Very good advice Jennifer.

      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.

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