HLA-B27 DISEASES

Wrinkled Sheets

I quickly wake up.

The room is dark.

The atmosphere is silent.

It’s happening again, getting breath becomes a convulsive effort at best.

Wrinkled Sheets…

I lie there in bed, suddenly realizing that I’m gasping for a decent amount of air to fill my lungs, but it won’t come.

Morning confusion and pain, the more I struggle, the harder it is to get a good breath.

The more awake I become, the more I struggle, but there is only so much I can do to expand a ribcage that does not want to expand.

The short night’s sleep was enough to undo the progress I made the day before to loosen up the bones that make up my chest.  All it takes is a few hours of stillness, if I can call tossing and turning most of the night, stillness.  A few hours of sleep is enough for my ribs to tighten up again.

The pressure of the early morning air seems to crush in on me, and I fight for a breath.  Muscle spasms quickly hit me and that adds to the confused and unnatural efforts it takes to capture unsteady, small amounts of air.

Even the unevenness of the wrinkled sheets pressing against my ribs cause excruciating pain for which I can find no relief.  I toss and turn slowly from side to side finding that the wrinkled sheets have created little…how to describe…like little speed bumps all over the bed, and those push up into my body triggering more muscle spasms and crushing my chest.

Just a breath, just want no pain.  “I just want to wake up and feel good in the morning,” my brain screams!

If lying down is horrible, then sitting up must be better,” I say to myself.

I begin the sitting up process:  I push myself into a sitting position, and then I swing my legs off the bed and I sit there in pain.  I feel the spasms hit me in regular fits as I attempt to breath normally again.

It feels like the ‘Devil Hand Grip’ squeezing my chest.  Perhaps, this is the ultimate wrestling hold of all time, I don’t know.  What I do know is that this crushing hold happens with all too often a frequency.

After several minutes of sitting at the edge of the bed, there is no relief, it is the same…standing must be better.  It is too bad that I can’t sleep while moving around, while walking.

Standing is better.

The ribs are still clamped down on my lungs, but they are easing slightly and loosening up the more I move, the more I breath.

The spasms subside as the minutes tick away:  An hour goes by and breathing is considerably easier.

Breathing.  A full and refreshing breath.  Something so natural, so necessary, so unnoticed most of the time.  However, when episodes like this happen, the lack of good breathing becomes very noticeable to the “Spondy” (a term for a person with Ankylosing Spondylitis), especially in the early hours of the morning.

What sets it off?  I don’t know:  It’s just the disease.  That’s what happens.  I should be used to it by now, after 26 years of mornings similar to this one today.  But why should anyone ever get used to pain?  I don’t have the answer to that one either, but I know that as a Spondy, it will come and that is all there is to it.  I’m not bitching about it:  I’m just sharing a few thoughts about what it is like for me with Ankylosing Spondylitis.  Maybe there are others with AS who can identify with these types of mornings.  If you can, then you are not alone.  I only wish I had some answers for you to help make the “experience” easier.

One thing I can tell you is that there are, what I call, trigger foods:  Trigger Foods are those that seem to cause inflammation in the body.  At least, the list of foods that follow are some of the ones that make me feel very horrible the next morning, because they seem to consistently cause more stiffness and pain for me:

  • cauliflower
  • eggplant
  • potatoes
  • yellow dhal (lentils)
  • cabbage
  • tomatoes, tomato paste, and tomato sauce (ketchup is OK, however – not sure why, but happy about this!).
  • …and there are more, but these are my worst.

The problem is:  I love eating all of these things!  Damn the Arthritis!  Anyway, these foods, or any type of food that has a lot of these products in them (i.e., pizza, and many of the South Indian foods that I like to eat), seem to cause me extra pain.  All I can say is:  “Eat at your own risk!”

I’ve had my share of good, bad and ugly mornings.  This one was particularly UGLY!  Maybe that is why this blog entry is finally surfacing.

Maybe it’s just the wrinkled sheets.

Iritis Attacks, Some Thoughts 16 Dec 09

Today, I just want to share a few more thoughts about Iritis. 

Why do I get Iritis?

That is one of the search phrases I see often from people who find my blog entries about Iritis.

With that said, and from my own experiences with Iritis, I propose that there is one main reason you may be predisposed to Iritis; that there is at least one main psychological cause that contributes to Iritis; and, one modern day activity that contributes to Iritis “Attacks”.  I say, “attack” because it feels like an attack on your eyeball.  If you have had Iritis, you will know what I mean.

So let’s begin…

  • There is one main reason that you may be predisposed to Iritis:  It is a secondary condition of another disease.  In my case, I have an Autoimmune disease called Ankylosing Spondylitis (A.S.)…a type of arthritis.  I am also positive for the genetic marker, HLA-B27.

According to an article in the 2004 edition of the “Journal of the Royal Society of Medicine”:

“84% of HLA-B27 positive patients with AAU [acute anterior uveitis] have other B27-associated diseases—specifically Reiter’s syndrome, ankylosing spondylitis or psoriatic arthritis.” 

Source:  The ramifications of HLA-B27 , by Nicholas J Sheehan MD FRCP

  • Main Psychological Cause:  DISTRESS

Yes, that is correct, I said “Distress.” 

Life is Stressful:  Stress is normal.  Some stress is even good for us – it keeps us on our toes, motivated and creates excitement.  HOWEVER, many people are better at coping with life’s psychological and physical stressors than others. 

Constant and overwhelming (continuous stress) causes DISTRESS – feelings of extreme worry, sadness or pain.    

Therefore, I propose that if you have a medical condition that causes pain a lot of the time, or, if you are feeling ‘extreme’ pressure from stress or sadness, THEN it may be possible that this distress assists in the outbreaks of Iritis. 

B27 Diseases + HLA-B27 POSITIVE + DISTRESS = VERY PROBABLY Iritis.
  • Main Modern Day Activity that could contribute to Iritis:  Continuous, Long-Periods of Focusing your Eyes at the Normal Computer Screen Reading Distance.

There is one thing that my Ophthalmologist tells me each time I pay him a visit with a new outbreak of Iritis: 

“You MUST NOT use the computer for the next couple of weeks, because you are focusing your eyesight too long ON THE COMPUTER SCREEN…at that fixed distance!”  [from eyeballs to computer screen – basically arm’s length distance

I’m not sure how scientific that statement is, but it seems to fit my situation quite perfectly because I notice that before I get Iritis, I’ve usually been spending extra ordinary time working at the computer, and usually feeling stressed about a project or…whatever.

In today’s world of computer-everything, we seem addicted to being on the computer, using the Internet, and staring at that computer screen for hours upon hours.  I propose that there could be a link between Iritis attacks and over-working your eyes while focusing on an object (i.e., the computer screen) at a rough distance of arm’s length.

My doctor’s advice for dealing with this is: 

“OK, if you have to work on the computer, at least get up and walk around regularly and relax your eyes from time-to-time, see things at other distances – don’t just continuously stare at the computer screen.”

I’m not a doctor.  I do not claim that any of my observations or advice are medically worth a hill of beans.  In other words, you don’t need to take my word for it. 

However, in my experience with Iritis, I know that being predisposed to Iritis via another B27 disease, having my share of distress, and long-term computer usage, I’m pretty sure it all adds up to my risk of getting new Iritis attacks.  What about you?  Does any of this sound familiar with your dealings with Iritis?

With this knowledge, I attempt to at least reduce my distress and reduce my computer usage – there’s nothing I can really do about the A.S., but I can do things to reduce the persistent long-term pain.

If you too suffer from Iritis, I wish you all the best.  Maybe you can keep a journal of the events you experienced and the activities you did before the onset of an Iritis attack.  This may help you determine which activities you can control, and possibly reduce the frequency of Iritis.  It’s just a thought.