Twiddler's Syndrome

Have you ever had a pacer or other surgery.  No matter what you do you can't keep from touching it.  I know that this is something that has happened ever since my Enterra device was inserted n February.  It seems to hurt all the time.  At the site of the pacer.

So I have a tendency to rub or pat it.  Then I found out that there is this crazy thing called twiddler's syndrome.  Amazingly this is when someone has a surgery or pacer and they twiddle with it.  Let's just say I have become a twiddler.  I have no control over it.  It is like my side draws me to it and it has to be rubbed.

The problem is that the twiddling or fidgeting of the pacer can lead to serious complications.  People have actually had pacers moved because they mess with the pacer.  In fact, it is one of the warnings in the manual.

So for right now I haven't figured out how to stop twiddling with the pacer.   I have a feeling that knowing about the condition has helped a little.  But it is hard to break a habit that you have started.  It is like a bad habit you just can't stop.

So if you discover that you have started this.  Then consider trying to break your habit. If you can stop it before you start the better off you are.  So here is my first suggestion whenever you go to touch it think f I do this I might have to undergo surgery again.  Because you can dislocate the pacer to the leads.  

Secondly, always remember that the more you touch it the more you will continue to do it.  Encourage your supporters to point it out to you if you are twiddling.  The more people to help you stop the better.

So my update I am consciously not doing now since I know about it.  Every time my hand goes to the side I take a deep breath and remember to stop.  Then lastly, my friends and supporters see me and they say hey you is twiddling.  I feel so guilty that I stop and then do not go back to it again.  

Well,  there you have it something you probably never heard about.  But, if you are like me you been doing it for awhile without even realizing it.  So enlist friends do the research and see if you can stop it before you unintentionally dislodge your pacer.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.