Welcome to My Life with Fibromyalgia Pain

This blog is going to serve as my pain diary.  Pain diary you ask?  Yes, Pain diary.  I am in the process of applying for Social Security Disability.  I’ve already been denied twice and now I’m waiting for a hearing before an Administrative Law Judge.  Part of the evidence that my attorney and I will submit is my pain diary. I began keeping a pain diary when I first got too sick to work.  It was hand written and in a big official looking black bound journal.  The problem is, my hands hurt so badly at times that I can’t hold the pen to write.  If I keep trying, I may be able to write a little but even I can’t read it.  For some reason typing isn’t as difficult.  I thought of just having a typed journal kept safe on my hard drive to print off and take to the hearing.  Then I decided that if I was able to help just one person by sharing how I became ill and my trials with life that it was worth putting it out for all to see.

What's Wrong With Me

I suffer from Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Short Term Memory Loss, Peripheral Neuropathy and Peripheral Edema. My Internist interprets my SED rate as positive for Rheumatoid Arthritis but my Rheumatologist says it’s not quiet high enough. Most of these are Autoimmune Disorders. All of these conditions add up to one thing – I am in pain 24 hours a day, 7 days a week.  Even with prescription pain medication, I live with pain that is around a 5 or 6 on that scale they show you at the doctor’s office.  On a bad day, 10, the highest number on their scale, in no way describes the pain that I feel.

I am not alone.  Fibromyalgia alone affects over three million people in the United States alone.  You can develop fibromyalgia syndrome (FMS) at any age, though, typically, a diagnosis will be made between the ages of twenty and sixty.  Fibromyalgia tends to hit people during their middle adult years and those who are diagnosed with fibromyalgia feel the burden of FMS at points in their lives when they are at their busiest. That was true with me when my fibro got so severe I couldn't work.  I had finally gotten a college degree at 52 and begun a career as a paralegal.  When people ask me why I don't work, I tend to want to slap them.  Instead of that, I tell them about how I worked 40 - 45 hours a week, carried an 18 hour class load and maintained a 4.0 average in college.  I tell them about how I started being unable to remember how to do tasks in my new job.  I would be taught a new tasks and two days later, not only did I not remember how to do it, I didn't even remember being taught how.  I tell them about the days of dragging myself out of bed to go to work and standing over the sink in the so much pain that I was throwing up.  I tell them about pain literally so bad that I had to crawl from the bed to the bathroom because I couldn't stand up. I finish my story with a recap of the day that my supervisor and I sat down and talked and I realized that I could never learn a new tasks and was losing my ability to remember what I did know.  It was at that point that I knew I had to let my pain win and give up.  I fought a good fight against Fibromyalgia but in the end, it beat me to the curb.

How Did I Get Here?

I first begin to experience fibro symptoms after a case of Guillain Barre Syndrome (GBS), an autoimmune disorder, when I was 14 years old.   GBS is a rare disease that can be life threatening. It occurs after a viral or bacterial infection.  GBS initially affects the peripheral nervous system. I believe that I  had Miller Fisher Syndrome, (MFS) a common clinical variant of GBS, it’s identified in approximately in 5% of all Guillain Barre Syndrome cases. It is a syndrome of acute external ophthalmoplegia, ataxia and areflexia without significant motor or sensory deficit in the limbs.  MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward. The difference between MFS and GBS is that different nerve groups are affected such that paralysis in GBS tends to start in the legs and move up, where in MFS it starts in the head, affecting eye muscles, balance and slowly descends to the neck, arms, etc. MFS does not generally have the life threatening aspects of GBS but can be very difficult to live through with double vision, nausea, weakness, difficulty. There is a close connection between antiganglioside antibodies which cause Peripheral Neuropathy and the Miller Fisher Syndrome.  When I had MFS, I could walk ok.  The problem came in with navigating something as simple as stepping up onto or down from a sidewalk and I couldn't climb steps

I still suffer from areflexia, the absence of neurologic reflexes such as the knee jerk reaction and Ataxia – wobbliness, incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb. I believe that I have remnants of Ophthalmoplegia, a paralysis or weakness of one or more of the muscles that control eye movement. The condition can be caused by any of several neurologic disorders. It may be myopathic, meaning that the muscles controlling eye movements are directly involved, or neurogenic, meaning that the nerve pathways controlling eye muscles are affected.

Tomorrow we’ll talk about how my Fibromyalgia has progressed over the last 40 years.

My Pain for Today

September 2, 2010: My pain today has gone up and down from the usual 5 to a 9.  I’ve had a headache and hurt so bad that I slept about 18 hours of the last 24. I managed to get up for a couple of hours to drag myself to the bank with Bill to sign some paperwork. As soon as I got home I went back to bed and slept from 9:45 a.m. to 3:30 p.m. Got up, took some more medicine and was back asleep till 6:15 p.m. I had no energy to do anything but sleep.