Living With Fibromyalgia
By Patty Jones
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The Following is an article written by my friend Patty
She lives every day with the pain of Fibromyalgia and Lupus.
Read about her brave struggle.
 
 
    It started as a nuisance really.  I was working as a reservations agent for a major airline when I noticed that I started to have severe wrist pain.  As per the company's regulations, I went out on "OJI" On the Job Injury.  I went to the company clinic and was told I had sever tendonitis and had to stay off the keyboards for a bit and go to Physical Therapy.  I got better!  For awhile....
Shortly after that followed an emergency surgery, and everything changed in the blink of an eye.  A slow blink of an eye!  I went back to work after surgery, and once again had trouble with my wrist...this time both of them.  I was sent back out on OJI, and sent back to Physical Therapy.  This time I didn't get better...I got worse...pain started creeping into my shoulders and neck.  I had headaches that turned into migraines where I never had headaches before.  My legs felt like they had millions of bees in them in bed at night, and they were heavy in the day.  I woke up every morning stiff and sore, like I had run a marathon.  My vision would blur after reading for too long...I started having terrible problems with my digestive system and was diagnosed with Irritable Bowel.  And I was TIRED..so very tired, all the time...I would either wake up alot during the night, have a hard time going to sleep..or wake up feeling like I had not slept a wink.
One day it hit me...like a ton of bricks  "These are not isolated things
happening to me...I am sick, there is something wrong with me".  All of
these things that had been happening to me, I had passed off as,
stress, overworking...computer eye strain..not enough excercise...but
now I knew...there was something wrong.  And at the same time, my
company doctor knew there was something wrong.  He gravely told me that he thought I had Multiple Sclerosis.  I went home shaking, scared and called my husband.  That night He accepted the Lord as His Saviour, knowing that we had something so big to face and he was scared! (side note here I know..but so very important to me).
One week later, we were sitting in a neurologists office and hearing him
say:
WELCOME TO THE WORLD OF FIBROMYALGIA.
Now, me being a doctors daughter (heeheheh I know enough to scare myself and be a nuisance to every doctor out there)....had never heard of this, and I said "what"?  And he said Fibromyalgia.   HE knew enough to diagnose it, but not enough to really treat it. And he sent me to a Rheumatologist for referral.  At that point, I went on a crusade to become informed.  And that I did.  I was blessed to be referred to a wonderful Rheumatologist who was very personally interested in Fibromyalgia and helping her patients with it.

Fibromyalgia is a "syndrome" although I personally call it a disease,
that is basically like having Arthritis of the soft connective tissue of
your muscles and ligaments.  It was officially given a name in the mid
1980's but has been around for awhile now.  It is officially being
linked with Chronic Fatigue Syndrome, and there is a lot of research
going on everyday to find the causes, treatment and cure.
It's symptoms range from moderate to severe, and vary with each
individual.  But the main common factor in each person is muscle pain
and fatigue and a set of "Tender Points" that are throughout the body,
that when touched or pushed, are tender or sore or even painful to the
touch.  It is a very difficult syndrome to diagnose..and many doctors
don't know how to treat it or don't know enough about it to treat it..or some plain just don't believe in it.  Well trust me, it exists and it is getting more and more recognized by the day, as more and more people are getting diagnosed with it.  I am now a volunteer phone and computer support person to answer questions about Fibromyalgia and also Lupus with which I was also diagnosed a year later.  Here is a list of
symptoms, and some great links to help you with..and I pray that any of you who read this realize that you are not alone..there are now millions with this syndrome, and you can feel better!  There is a lot of help out there and alot of answers for this "invisible sickness" and I hope to help!  God Bless each and everyone of you, and hang in there.  There are
answers!
Love, In Christ,
         Patty
 
Symptoms of Fibromyalgia
Fatigue-can be mild, moderate or downright couch slouchin, stay in bed
fatigue. It varies from person to person and day to day.
Muscle Pain- Can be Localized or Widespread..often Moves around, can be
described as aching, burning (my personal favorite), or stabbing.
Headaches-from moderate to Migraine in intensity (If I had headaches
once a year before this, that was a big thing..I never got them before).
Irritable Bowel-problems with constipation or spastic colon and diarrhea
or both. Especially when you get nervous or tense.  (I met a movie/tv
star last week and thought I was gonna turn green trying to hang on till
i hit the bathroom!) Irritable Bladder-frequency of Urination..most usually
at night but canhappen anytime.  Also bothered me when I met the
tv stars last week! :o)Vision Problems-Sometimes Blurred Vision..especially
when very tired or eyes have been overly strained.
(Like now at my computer...my eyes are saying "stop already"! )
Numbness, Tingling or Buzzing-in legs, arms, fingers or any combination
of. (Check for bees in the area, and if none found...you have official
tingling or buzzing) Sense of Heaviness or fatigue in muscles-sometimes
you just swear there is a pound of concrete in each muscle!
I wont have you check for concrete in your muscles..that would
be too silly after checking for bees.
BRAIN FOG AND FORGETFULLNESS-This is a biggie folks...alot of us have
what we lovingly call brain fog, fibro fog, or fibro moments.  It's
official term is short term cognitive dysfunction...but it is
frustrating, annoying, embarrassing and just plain irritating.  And the
madder you get about it in a situation..the worse it is!  It can be mild
to moderate as well.  From something like forgetting what you were
getting up to do..to missing your doctors appointment to help treat your
fibro because you forgot!  Sometimes you feel like you are walking
through water all day, or your brain is just mush.  Hang in there
folks..it isn't that way every day! Brain Fog or forgetfullness...wait,
now did i already mention that?  :o)
Difficulty in performing repetitive or heavy tasks-Well this one covers
a broad area...it affects some people differently than others, so I wont
go into alot of specifics.  For instance, I cannot lift my arms over my
head to do my hair or hang a shirt without pain..but I can walk for
awhile before my hip starts hurting.  My best friend who has this cant
walk to far  (but is fast i might say) but she can blow her hair dry
every day.  Whew!   I will leave this one at this point because it is
very broad and general..but I think you get my drift!
Tender Points-Lots of people don't realize they have these till the
doctor checks for them, but there are 18 of these tender points on our
                           bodies that when pressed or touched will be tender, sore or very
                              painful.  In a very general way I will tell you the areas of these
points... Base of skull either side of spine
Top of shoulder where it meets the arm
Near the elbow region-usually just above the joint on
inside and outside of arm. Hips
Lower Back area - either side of spine towards the hip area
Knees - usually on the outside near the at the mid point of the joint.
Ankles - actually towards the back near the tendon area.
The above points are a very general description of these specific places
on your body and only your doctor can tell for sure (just like your hair
dresser knows your hair color).  So please don't take the above as full
"fibro truth" from me.
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"He reached down from on high and took hold of me;
he drew me out of deep waters. He resued me
from my powerful enemy, from my foes, who were
too strong for me. They confronted me in the
day of my disaster, but the Lord was my support.
He brought me out into a spacious place;
he rescued me because He delighted in me."
~Psalms 18:16-19~

Phone Numbers
Fibromyalgia Association~ 1-800-853-2929
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"To Your Health"
1-800-801-1406
Click the button to
Go to their website and read
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"About Fibromyalgia"
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"Davids Story"
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"Letter from the President"
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They tell the Fibro. story better than I can.

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Copyright, Patty Jones 1998