Sharon Edwards' Story

What were the steps leading up to your diagnosis?

I am an RN and was working on a medical surgical floor for three, twelve hour shifts per week. For several years, I had been having increasing pain that I saw my chiropractor for. He was the first to suggest that I had Fibro, several years before the doctor. I dismissed his suggestion because I was too busy working two jobs. When I ended up in the hospital with pancreatitis and liver failure, my doctor mentioned that she wondered if I had Fibro. But at the time, that was not top of the agenda for me; getting better was. The next two years brought about a cystoscopy for kidney stones, exploratory laparotomy for regrown ovaries and adhesions, and a bout of vaginal cancer that required a chemical burn of 5-FU. I was working in surgery then and on call all hours of the day and night before transferring to the M/S floor.

Finally, the pain and fatigue became almost unbearable. Once, I was walking with weights on my ankles around a trail and my legs wore out to the point I almost did not make it home. The fibro fog was becoming so bad that I had to make notes not to forget. When I finally hit the wall, it was in the middle of a life threatening emergency during my shift. I was to hang a Heparin drip. Not only could I not remember how to do it, I could not read the protocol that I had in my hand to follow. I also could not remember how to use the IV pump. I had been a nurse for 25 years at that time. I left work, went straight to the doctor and never returned. I was unable to read for three years. If given long enough, I could put the words together. I had intake and output aphasia. I would start a conversation and forget what I was talking about and was forever losing my words. As I looked back over the years of the symptoms I had, I figured out I had had Fibro since age five.

What lifestyle changes have you needed to make?

The first thing I did was change my diet and got more rest. I tried every natural herb and supplement recommended for Fibro. I went to the pain clinic. At first, exercise was not doable; I could barely make it to the bathroom. If I went downstairs to do laundry, it would be two to three hours before I could make it back up the steps.

I started getting regular massages and chiropractic treatment. I experimented with meditation, Integrative Medical Therapy, Healing Touch, and other energy work. I had to change my thought processes and release a lot of negative energy by journaling. I had to learn to practice unconditional love and forgiveness. I had to learn to love me. Then I started to get better.

Who has been there for you? How?

My husband and my Mom were my biggest support. My Mom would drive me to Asheville, NC for IMT treatment that would last for two to four hours and help assist. She drove me to Atlanta for treatment. My husband took care of me the days I couldn't make it up. He cooked and cleaned. They were both there for me emotionally. My massage and reiki therapist, my healing energy therapist and classes, my counselor and most of all my doctor who has allowed me to try whatever works.

My Mom and husband both transitioned in 2009. My Mom in January 2009 in her sleep at age 82 and my husband in September 2009 after a 5 year battle with Alzheimer's and Parkinson's and a 17 year battle with prostate cancer. My children were there for me but Moms aren't supposed to be sick so it was hard for them to understand the symptoms when I didn't look any different.

What accomplishment are you proud of?

I took care of my husband for five years and kept him at home until he transitioned with the aid of Hospice and the VA Home Based Program. It was a 24/7/365 job for the last 2 years even with help coming in. At best I had maybe between two to four hours of sleep. After he transitioned, I got my RN license out of retirement and went back to work part time auditing charts and then full time at a clinic for the homeless. The pace eventually took its toll and when I quit and went back on disability, they replaced me with two nurses.

I did go back part time three hours a day but they started cutting my hours. I found a great job as a Geriatric Care Manager making a great salary and stopped my disability. After eight months, I got Whooping Cough and eventually had to quit due to the pain and fatigue. It was supposed to be the 100 day cough. It lasted longer with me and I still have not recovered my energy back. The bouts of pain are more intense and it takes more meditation and medication to be pain free. The steroids caused me to gain back the weight I had lost. I am now back on disability. I have a lot of tools in my bag to help control the pain and knowledge to let time heal until I can regain my strength so I can exercise and lose weight again.

I have met a great man who loves me, supports me and takes care of me. I have my first grandson that I babysit now two days a week. I have written an ebook called Returning to Love about my husband and my journey with his Alzheimer's, my Fibro and being his caregiver. It is being published by Balboa Press.

What's your advice to someone else living with Fibromyalgia?

There is no one magic pill for Fibro. It is an individual path of the soul. Each of us have to find our own path and right combination of medication, supplement cocktail and alternative therapy. It has been said that the path to appeasement and enlightenment begins with pain. It is not an easy path but one can find light at the end of the tunnel. The most important lesson is to enjoy the moment. The past is over and the future can only be positively intentioned. All we have is this one moment in time. There is always some joy to be found.

Is there anything else we should know?

Learn to BE.