Is the Flare Finished?

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain.  I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be.  Well, that changed fast. Pain medication wouldn't even touch it.  My eyes became so dry and painful that I had to be put on steroid eye drops.  I stopped being able to read or use a computer all together and went back into survival mode.

Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself.  I won't contact my rheumatologist, there isn't much anyone can do for me.  But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind.  Well to be honest, my husband had to partially convince me that it was time to seek medical help.

I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues.  But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks.  (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)

Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot.  At this point, I was at least sure I was not the only patient who had this happen.  It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.

I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients.  As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!

The View From My Window

There is nothing like the first snowfall.  Pristine, white, and untouched snow.  I appreciate and marvel in the beauty.

Then the novelty wears off pretty quickly.   Because once I venture outside into the wind and the cold, I am instantly reminded of my painful joints and nerves.  It's hard for me to navigate beyond my neighborhood in this winter weather.

I'm grateful for the scenery and the view from my window.  But it also means more days inside.  It can feel like forced hibernation.  I don't know about you, but I would be satisfied with just one snowfall each year and then a quick progression into Spring. 

A Flare Has Come Around

Well, I've been absent for a bit with good reason.  It's something many of you are familiar with-- A flare.  

As one of my doctors says " for you flares always starts with the eyes".  My eyes become extra extra dry and uncomfortable (As if they weren't dry enough already).  And then the cascade of other symptoms tend to follow.  The neurological are really the most disabling for me because they are just so darn painful.  Once my trigeminal nerve and eyes are activated, (similar to the article discussed in my last post), reading and writing become a real challenge.  I have to limit my time "using my eyes" because it can only exacerbate the neurological pain.  I enter into prevention mode.  I am always calculating what can I do to prevent my symptoms from getting worse and to give myself some relief.  Because once the pain reaches an 8 or even a 10, it's very hard to get it back to being manageable.  

Keeping my eyes extra moist is one of my strategies against neuropathic pain,and I find the dryness at night to be a particular problem.  Local inflammation of the cornea can stimulate the trigeminal nerve so keeping the surface of my eye as comfortable as possible can at least help minimize my pain.  I've discovered a couple new products that have been somewhat helpful.  

The first, is called Niteeye The Dry Eye Comforter.  It's a disposable bubble bandage that I can stick over my eyes for bedtime.  It creates an airtight moisture chamber so that none of the minimal tears that my eyes produce can escape.  When I take them off in the morning, I can actually see a few small drops of my tears on the clear lens.  I still use my regular night time gel and then put the dry eye comforter on.  They are a bit difficult to order and  the least expensive way is to call the manufacturer directly and order a box as explained on the Dry Eye Shop website. The negative, of course, is that they disposable so the cost can add up over time. I do only tend to use them when my symptoms are particularly bad. 

Dry Eye Comforter

I've also tried the Quartz Nighttime Sleep Shield.  These I've had less success with mostly because I tend to rip the goggles off in my sleep.  That means I only have the eye protection they provide for about half the night.  My head is also pretty small so unless I adjust the band to be very tight, they can become loose easily. I was actually able to purchase these at a my physician's dry eye shop for about half the price listed online.  I've heard that many have had good success with Tranquil Eyes Goggles made by the same company.  These provide the benefit of having moisture pads that can be inserted and in the more expensive models silicone beads that can be made hot or cold depending on what works best for your symptoms.  I just haven't tried them yet. 

Quartz Nighttime Sleep Shield

They both make me look an alien when going to sleep at night, but this is the least of my concerns. Less pain and discomfort is my goal right now.  I'm going to try to keep writing when my health allows and they might just have to be shorter posts.  It will be a bit of an experiment, but so is this whole autoimmune journey. 

What are your go to products during flares that provide some comfort and relief?