MY BATTLE WITH   FIBROMYALGIA

WHY ME  ???

WHAT'S HAPPENING TO ME  ???

PAIN, MEMORY FOG, DEPRESSION !!!!

IT'S REAL !!!!!!!!

.

AND IT HURTS !!!!!

Last updated on  February 9, 2005

THE BEGINNING OF LIVING IN A NIGHTMARE I have always worked in the secretarial field.  While employed at a local bank, I started experiencing carpal tunnel symptoms.  I went to a hand specialist and after an EMG, nerve conduction study, I was diagnosed with bi-lateral carpal tunnel.  The first surgery was in July of 1991 on my right hand.  In September of 1991 carpal tunnel release was done on my left hand.  I returned to work in November of 1991 and continued doing the same job. I was a loan secretary and this involved either using the computer, typerwriter, or writing all day.  Approximately 3 months after I had returned to work, I started experiencing the same symptoms again.  The pain had also moved into the forearm area of my right arm.  Another EMG study was done and it showed that I had pronator syndrome and also cubital tunnel syndrome.  In March of 1992 surgery was done to correct these problems.  I returned to work , of course in the same position .  My condition had improved but the symptoms had never entirely disapeared.  At this time I started having problems with extreme fatigue and all over body pain.  At first, I thought I was coming down with the flu, but the  flu enventually goes away and this DIDN'T.  I started having problems getting to sleep and when I was able to go to sleep, I would awake feeling as tired as before I had gone to bed.   The problems with my hands  and arms continued and the fatigue and pain and lack of sleep increased.  I became very depressed.  I've lost count of the number of doctors that I saw trying to find out why I felt so ill.  Two of the many included doctors at the Scott White Clinic in Temple, Texas and doctors at the Loma Linda University in Loma Linda, California.   It was at the McBride Bone & Joint clinic that I was finally diagnosed with Fibromyalgia which they thought to be a result of the injuries to my hands and arms.   I was so relieved that someone was finally able to give me a definite diagnosis and validate what I was feeling.  It was a relief to know that it wasn't all in my head yet very disapointing to find out there was no cure for this condition and I would have to endure it for the rest of my life.   But finally, my pain had a name.  This condition is so misunderstood and few people, including doctors recognize Fibromyalgia as a real disaease.  Just because we look healthy, people tend to dismiss us.  It would almost  have been better to be diagnosed with cancer or some other disease that is recognized and can be treated.  When you have that type of diagnosis, people at least have an understanding about what you go through and have some sympathy for you and believe you when you say that you are ill.  The depression that goes along with FMS (fibromyalgia syndrome) is  as debilitating as the pain.  There are many times when I have been unable to even get out of bed.    Knowing that I will have to endure what I am going through for the rest of my life and having freinds, and family not believe what I am going through makes me want to give up.    It is now a new year (2002) and I have been living with these problems since 1991.  I was forced to quit working in September of 1997 and am pretty much confined to my home.  I've lost relationships, and friends because people just get tired of hearing "I don't feel well" or "I don't feel like doing anything".  My home is my whole world now.  Just going to the drug store, doctor, or grocery store is such an effort and causes so much fatigue and pain afterwards.  I have had a total of 11 surgical procedures on my hands and arms and they are so scarred up that I am ashamed to wear anything but long sleeves.  I did find a site on the internet called FIBROHUGS that gives me alot of support, just knowing that I am not living the alone.  There are thousands of people who are suffering the same as myself and some are alot worse off than myself.  I have been lucky because I finally won my Worker's Compensation Case after over 10 years of battling and am receiving lifetime benefits.  I applied for Social Security Disability and did it without the aide of an attorney and have gone through the hearing and was turned down.  The Judge  that I had basically said in his decision  that he didn't believe that my symptoms were as bad as I stated and also called one of my doctors unbelieveable.  He stated because I could drive, feed myself, and was able to drive myself to the hearing that he didn't feel I was disabled.  I am of course appealing his decision.  This is all happening in the state of Oklahoma and now the apeal will go to a council in the state of Virigina.  It amazes me how there are many people who are alcoholics and drug addicts and are receiving Social Security Disability for those reasons, and people like myself who have tried to work hard all my life, be honest, and not get up on the stand in court and lie, are unable to get help.  I paid  Social Security through all my years of hard work  and only want back what is mine to begin with.  Since I have been unable to work for now over 4 years I only have until December of  2002 in order to get anything done.  After that date, and because I haven't been paying any social security in for the past 4 years I will have no recourse and not be able to qualify for Disablity.  I am thankful that I was able to win the Worker's Compensation and at least have a small income.  I'd much rather be working and making twice the amount of what I am receiving if I were only able to.  I finally won my battle with Social Security Disability and am now receiving benefits.  It was a long hard battle and I thank God every day that this has finally happened for me.

Feb. 9, 2005   I haven't journaled in over a  year.  For  that time I actually had an almost normal year, but have "Flared with a vengance".  The depression has  lifted but the pain is severe again.  I've chosen not to take pain medication at this time.  The doctor that worker's comp Forces me to see is so far away that the drive is too much for me, so I only go when I absolutely have to.  Even though I'm getting SSD benefits, they always seem to find a way to continue  to decide my treatment, rather than letting the doctors and me decide.  I either go along with them or get no  treatment at all.  What a wonderful Social Security system we have!!