The More I Learn

I finished the first book that I ordered, 100 Questions & Answers About Fibromyalgia.  There is so much information in those 100 questions it was unbelievable.   I learned that I have a muscle and tissue disorder which cause my muscles to ball up or knot and lock in place.  I am also hyper-sensitive, meaning that my nerves (and body) take everything a little too seriously.  For example, if you give me a light hug it feels like you are crushing me or if you give me some NyQuil I am completely out of the game.

I learned that there is no one cause for Fibro but the solution I found while reading that fits my condition is it was most likely caused by my Epstein Barr Syndrome (EBV).  EBV is the virus that causes mono; I caught mono when I was about 7, again when I was about11, then when I was 12, and so on and so on.  Instead of my body building an immunity to the virus it adapted itself to it.  EBV causes many problems for its “victims” but I think this is a big one.

I know that my thought train derails a lot and it never did that when I was younger.  My dad used to ask me what was on TV for the night, and I would rattle off the TV listings to him or my mom would ask me someone’s address and phone number and I would recite it like it was my own.  Now days I can barely remember how to finish a thought.  It is very frustrating and it makes me feel very inadequate; come to find out I am not the only one who suffers from this.  “Fibro Fog” is the most common complaint with Fibro patients.

From reading this one book I do have a few things that I am going to ask Dr. Soloman about.  I am wondering if some of my pains and complaints would be caused by interstitial cystitis (IC) or irritable bowel syndrome (IBS).  I know those are a few things you probably didn’t want to know but I am being honest in these posts.

As I got to the section on the medications and management, I learned that most things related with this section had the side of effect of “may cause weight gain”.  Thanks!  Here I am trying to control my cholesterol and weight and this darn syndrome is doing everything in its power to stop me.  Can’t a girl get a break.  I did also learn that as for the meds I am on, they are the latest and greatest.  That is a good thing.

The writer’s of the book suggested that along with the medications that patients try other therapies.  This includes water aerobics (uh…no), message therapist (people touching me, I think not!), and a psychologist.  The psychologist is for teaching you how to deal with life and teach you pain techniques.  The book did suggest using a tennis ball for about 20 to 60 minutes as a way to massage a muscle that has a flare up, I think I can handle it.

They also state that stress is a big factor in causing flare ups.  The book suggests that you find some soothing and calm activities to do daily.  Scrap-booking is one of my major stress relievers, and I am hoping to find a way to be able to do it again.  The book also suggest that you start journaling how your days are going, what was your pain like and if you had any stress.  So, along with what I am learning in my book I will be occasionally posting what my days are like.

Today:

I started off with about a medium day of pain, but like yesterday my lower back and legs have began to hurt.  I have also had a low roaring headache today.  Rachel helped with distracting me by taking me to see All About Steve.


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