Just one example of daily impact of invisible chronic disease

My husband and I were on the way home from a parent meeting for parents of kids going into middle school next year (first, let’s stop and acknowledge that I’m so not ok with my boy growing up!).

I don’t even remember how it came up but I described to him just one example of how my day is impacted in a concrete example (rather than just saying “fatigue” or “pain” which can be a little abstract and hard to really understand what it’s like every single day).  He was pretty shocked by what I described so I thought it might be a good thing to share with others (I’m always looking for ways to encourage others to understand what it’s like to live like this).

Sjogren’s causes dry eyes.  Not slightly uncomfortable dry eyes, but the kind that you feel when you have your car heater on full blast aimed right at your face and your eyes are held open as long as possible.  (In fact, I try to use the heat in my car as very little as possible because I already feel like that and the heat just makes it even worse, but I did have it on last night as it was dang chilly!)

So imagine the most dry your eyes have ever been – think about holding them open with the heater blowing on them.  The outer corners of your eyelids are so dry and painful that they feel like chapped skin – every time you blink it hurts the skin.  But you blink a lot because you feel like you’re sitting in front of a full-blast heater.

Now imagine this is how you feel in normal situation and you go to work and you’re in an office with 16% humidity.  OSHA recommends relative humidity of 30-60% in commercial and institutional buildings.  So I have extremely dry eyes and I’m sitting in an environment that is HALF of the LOWEST recommended level of humidity.

And the low-humidity office is also lit by florescent lights. They contribute to dry eyes.

And the job mainly consists of working on a computer for the vast majority of the day.  That also contributes to dry eyes.

Eye drops they say…

Well I tried many, many brands and types of eye drops in the last few years and I get, generally, about 1-3 minutes worth of relief after each time I put them in.  There was one kind that my last optometrist recommended that gave me slightly better relief (about 5-8 minutes) but also blurred my vision for the first couple of minutes (they’re thicker drops).

When I was in Philly with the Sjogren’s specialist in December he recommended a specific type of drop (Refresh Celluvisc).  When he asked me about my use of eye drops I gave him my description – they either don’t work at all (which is what I consider 1 minute relief) or they blur my eyes when I put them in.  He said that with the kind of drops I needed for relief that they were going to blur my eyes at first but then will clear and that was just something I’d have to work with in order to use drops that provide relief.

So I started using them…but I must admit that I hardly ever use them because…

They do offer about relief for about 30 minutes, which is far better than anything else I’ve tried.  However, for the first 11-13 minutes after I put them in my eyes are so blurry I can’t work.  Can’t see my computer screen clearly enough – can’t do my job basically.  So I can have 30 min of relief from the worst dry eyes I can imagine – affecting not only my eyes but the skin around my eyes – but it comes with almost half that time with blurred vision.

So my choice is either constant pain in my eyes that basically makes it so that I can’t function very well at my job because all I can think about it how painful they are and how badly I just want to close them.

Or I can put drops in (that are expensive by the way) every 30 minutes but have approximately half of that time as “lost time” due to blurry vision.  It wouldn’t be so bad to put them in every 30 minutes.  I could deal with that – but to lose half of my time after I put them in every 30 minutes just isn’t all that practical!

That’s a fantastic choice I have to work with!  Constant pain or relief with 50% time loss.

And it’s every day, all day.

Updated 2/25/14 to add additional information:  I always think I’ve added all the relevant info to a post and then I get comments and questions and suggestions and realize that I left out some important stuff!  From the comments/suggestions from this post and a related question I posted in sjogrensworld.org, I’d like to add the other things I’ve tried related to this issue:

  • A large variety of brands and types of eye drops (less viscous give no relief, more viscous give relief but blurring issue)
  • Restasis for a year – no benefit
  • Temporary punctal plugs in 2013 – hated them – caused pressure and made me miserable
  • Temporary punctal plugs in 2014 – gave them another shot after Restasis gave me no benefit.  This time I loved them – best my eyes have felt in a very long time (not completely fixed, but a definite improvement!)
  • Permanent punctal plugs – after the temporary ones dissolved he placed the permanent ones.  The rubbed my eyeball – my puncta are inverted in towards my eye slightly rather than straight up and down like most people and that meant that the head of the plug rubbed on my eyeball.  Gave it an 8 day try and then had them removed as I never “got used to” it.
  • Internal punctal plugs – when he removed the ones listed above he inserted the gel-expanding-type of internal plugs.  Within an hour they came out.
  • Different permanent punctal plugs – He had a different brand that had a different shaped head and thought those might not bother me as much as the first kind I tried.  They didn’t both me as bad, but they also didn’t help much.  Once came out after a month and the other one came out a few weeks after that.
  • I’ve been on Plaquenil for years (and get the recommended follow-ups for the side-effects) and have had no benefit on any of my symptoms, including the dry eyes.

I’m currently doing:

  • Viscous drops during the day
  • Gel at night
  • Plaquenil
  • Imuran
  • Evoxac

9 thoughts on “Just one example of daily impact of invisible chronic disease

  1. I’m new to your blog as of this week. I followed a link from Julia at Reasonably Well and then signed up for your feed to come to me as email, In case you’re curious about these things.

    I am a sjoggie diagnosed 6 years ago. Dry eyes are among the worst symptoms I deal with as well. I wanted to let you know about the treatment I use. It is the best thing I have to treat any of the many symptoms. It is called Lacrisert. My ophthalmologist prescribed them for me, and I use them every day. They are little pellets that you put behind your lower lid near the outside corner of your eye. Since you wore contacts, you will probably have no problems tolerating them. They soften up after they are in for a while and become a little gel lump that continually moistens your eyes. Awesome!! I wear them for up to eight hours and then remove them. If they stay too long, they get really mushy and it’s really uncomfortable and hard to get out. Try them…I so highly recommend them!

  2. Make your optometrist your best friend. He/she has time to listen to your problem and waaaay more experience dealing with dry eyes from every cause. You’ll also get info on taking care of those meibomian glands. If you’re on Plaquenil, you should be seeing him/her on a regular basis, anyways.

    My optometrist explains Sjogren’s effects on eyes to me every time I see him; he wants to make sure I’m taking proper care of my eyes.

    1. I see an ophthalmologist regularly (multiple times a year) – he is very in tune to my sjogren’s issues, thankfully! We’ve tried Restasis and 4 different types of punctual plugs…none have been successful 🙁

  3. LIke you I had tried everything as I have severe dry eyes from Sjogrens. You should consider serum eye drops made from the blood you give. They help quite a bit

  4. I second the autologous serum eye drops. Yes, there is the *gik* factor, they are made with your blood mixed with saline. I use the 50% blood variety four times a day and it helps to heal the eye. Last time I spoke with my opthalmologist he said more and more scientific publications are showing good results and I should continue. I tried lacrisert and didn’t have enough tears in my eye to get them rehydrated (even when I “pre-hydrated” them). My next step is punctal cautery for the upper ducts…I’ve been putting it off!

  5. You described my eyes from Sjogren’s, too. I tried Restasis for two years and all kinds of plugs, upper and lower, with no improvement. Lacriserts don’t dissolve consistently for me, even with constant use of eye drops. Early in the disease process, when my eyes still could produce enough tears to dissolve them, they made my eyes feel great. But now my eyes don’t produce much at all and burn constantly. The 1-3 minutes of relief from eye drops is all I get, too. And I’ve had the same experiences with the more viscous drops. They feel good for a little while longer but cause blurry vision, and by the time I can start to see again, the benefits are already gone, and my eyes are burning again. Plus they tend to cause crusting on my eyelids, which is embarrassing. I haven’t tried autologous serum drops or scleral lenses yet (only because there isn’t an eye doctor nearby offers either of these options). I’ve seen three different opthalmologists at three different clinics, and none of them have been able to help me.

  6. Have you tried humidifiers? I have a cheap eco one which looks like a fake plant on my work desk and my bedside table. Ceramic ones hang on the radiator. I also leave bowls and mugs of water everywhere!! SS is frustrating. Good luck.

    1. Thanks! I have tried a humidifier at work – sitting on my desk – about 6 inches from my body with the hygrometer (measures humidity) between my chest and the keyboard as I worked – so the humidifier, the hygrometer and I were all within a foot circle of each other and it only raised the humidity by 2 points – to 18%. The office space is so large and the air is circulated so much that it just sucks it up and out 🙁

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