Saturday, August 28, 2010

My Fibro Journey

My journey began with a neck/back injury that left me feeling like I had severe whiplash or had been hit by a semi-truck. After several days off work I returned but within 24 hours I realized I had no strength, I was having difficulty lifting even a few pounds at waist level. I also had knotted muscles along my spine from my neck to my tailbone, severe pain, difficulty walking and lifting my arms. My husband and I knew something was wrong but we didn't know what it was. We had no idea this would impact our lives so deeply and permanently. I continued to suffer severe pain episodes, exhaustion, and I had an extremely low tolerance for activities. I was shuffled to a variety of doctors, and none of them seemed to believe or understand my symptoms. I cannot begin to describe how hurtful it is to have people tell you it is all in your head. Finally after a year and a half we got a partial diagnosis of possible fibromyalgia. Even though I had worked as a nurse I didn't really understand fibromyalgia. I still didn't believe I had it till I visited my daughter. I told her about the doctor report, and she looked it up on the internet. "Oh, mom" she said, "you have this." I was still in denial till I returned home and read the most common places of pain were the neck, back, shoulders, hands, and pelvic area. In that moment I knew it was true. The words "No Cure" seemed to leap off the pages! Up to this point I had survived on ibupropen and muscle relaxors, but nothing was really helping. A friend told me that only a Rheumatologist could diagnose Fibromyalgia, so I set to work getting a referral for a really good doctor. After researching I found an excellent doctor located near my daughter's place. He diagnosed me with Fibromyalgia and Myofascial Pain Syndrome. He said that it would take all my strength, and a long time to get better, but that I would probably only return to about 40% of what I was before I got hurt. Not really good news, but it was good to finally have some validation for my pain and limitations. I told him my neck muscles were so bad that I had difficulty lifting under ten pounds above my waist on a regular basis. He told me this was not that unusual and that there is still little that is understood about Fibromyalgia. I was referred to a therapist who specializes in Fibro patients, as well as a sleep doctor. The therapist had to discontinue treatment after a few weeks as I could not tolerate it. He told me that on the Fibro scale I was considered a severe case. As difficult as it was to hear, it was also so freeing to be validated once again. His report stated that the prognosis for me returning to work was poor. The sleep doctor diagnosed me with RLS, and wanted me to take a sleep test to determine possible chronic fatigue, but my insurance would not pay the $3000.00+ for the sleep test. While it was good to finally know what was the matter, I cannot say it was easy. Being the eternal optimist I had kept hoping I would recover (Or God would heal me) and return to my old life. My husband kept complaining that he could not hug me anymore without hurting me, little did we know that was the Fibro, and they even have a word for it-Allodynia, or a painful response to non-painful stimuli.
The good news is that I learned a lot more about Fibromyalgia during my treatments, and most of the helpful information came from the NFA and their magazine "FM Aware". I am truly grateful for their committment to educate others on Fibromyalgia.
I have tried some other medications, some helped, some didn't. While I rely more on natural remedies such as heat, massage, proper nutrition, I also do not hesitate to take medication when I need to. Learning to manage Fibromyalgia is tricky, and while I have not mastered it, I am making progress. I am learning to focus on what I can still do, instead of what I can't. I am grateful to my family for their amazing love and support. Most of all though, I am grateful to my God, for He is made strong in my weakness.
Now, three years later, I have still been unable to return to work, or shall I say monetary employment. I am striving to move forward and do what I can. I know I am blessed because my family loves me, and My God is Awesome. Since my injury my life has been blessed in many ways. My husband has quit smoking and been baptised in the church, and together our faith in Christ has grown. My God has provided for our needs, and some of our wants too, despite the fact that our income has decreased 55%. I would encourage anyone who has Fibromyalgia to concentrate on things you can still do, find a good support group, get educated by FM Aware, be patient, it takes time to adjust, and NEVER GIVE UP!
"Trust in the Lord with all your heart and lean not into thine own understanding, in all they ways acknowledge Him and He shall direct thy paths. " Proverbs 3:5,6 KJV

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