Living With Fibromyalgia And Chronic Fatigue Syndrome

My husband and I will celebrate our 8th wedding anniversary this April. When we married, he was a very active […]

My husband and I will celebrate our 8th wedding anniversary this April. When we married, he was a very active and athletic man. He played basketball with men half his age and played volleyball twice a week (which was his love). He coached his sons’ teams and took them fishing in the summer and ice fishing in the winter. We spent summers fishing on our boat and in the fall he would hunt. Ron had a wonderful job as a financial manager which he started shortly after we were married. He was a top performer with great reviews from his supervisor and the director. We attended church together and both shared a great faith in God. Life seemed good.

My husband started having health problems during our second year of marriage, beginning with the stomach virus H-pylori. It took him months to recover. He then tore his bicep muscle playing volleyball and underwent two surgeries to repair the damage to his shoulder and muscle. He recovered, but was not the same man and our life together began to change. Ron had flu-like symptoms: aches, pain and fatigue. He started missing work and was always too tired to do much of anything. Ron’s doctor thought he had sleep .pngea. Tests were done and Ron was put on a sleep machine at night, which he wore faithfully.

But Ron still had widespread pain. Just wearing his watch caused him pain; his shoes caused pain in his feet. Even the pressure of clothing touching his body caused discomfort. He tried wearing larger shoes and baggier clothing, and he went without a watch. Our doctor referred Ron to a neurologist who, after many tests diagnosed him with Fibromyalgia. After learning the diagnosis, we did research and discovered that Ron had all the symptoms. We also learned there was no cure. We had hoped for something that was fixable, something people could understand.

Our search for help brought us to the Mayo Clinic for more tests. The diagnosis was an electrical imbalance in Ron’s brain that was sending pain messages to all parts of his body, which sometimes happens after a major surgery or injury. They thought it might correct itself in five years, but there were no guarantees. We returned to our primary care doctor with a list of medications that Mayo suggested. We then had more tests and another sleep study. With frustration, our doctor referred us to an infectious disease doctor who diagnosed Ron with Fibromyalgia and Chronic Fatigue Syndrome (CFS). After all the tests and specialists, we were forced to accept this diagnosis.

Ron visited a clinic for Fibromyalgia – they did everything from biofeedback, pool therapy, and dietary changes to occupational therapy. Ron received Botox shots for the pain. They helped, but we knew he had a long road ahead. Ron tried acupuncture, strange vitamins, Noni Juice and any alternative idea people would throw at us. But there is no cure. There has been some relief from Fibromyalgia, but with the Chronic Fatigue Syndrome on top of it, Ron has very little strength.

He tried to work in spite of his health issues, but his employer was not accommodating. His supervisor didn’t believe Ron was really ill. She was all business with no compassion or cooperation. Ron gradually got sicker. He took a medical leave of absence in January of 2003, and shortly after that, permanent disability. Memory loss, pain and fatigue prevented him from doing his job or any other. He could barely function even at home.

My once active, athletic husband is now housebound most of the time. People ask him what he does all day. This would be like asking someone home ill with the flu what they did all day. Most people can’t understand that it takes all Ron’s energy to just to get up in the morning. A shower wears him out. If he has a good day, he can watch his son play ball, which he loves to do – but it takes him days to recover from that effort. He uses a wheelchair whenever we have to go any distance so we have made a few outings. He hasn’t made it to a family Christmas, Thanksgiving or other gathering for quite some time. He used to read a lot, but short-term memory loss, referred to as “Fibro-fog ,” prevents him from enjoying that simple pleasure.

What complicates this even more is that Ron looks healthy. You would never know how ill he is. He’s still as cute as ever. Even some of his own family members do not understand. People see him and say, “You look great.” Such comments are upsetting for him because he fears they are thinking “Are you really sick?”

Our boat has been in storage for over two years and our dancing shoes will probably never see the light of day again. But through it all, we still have each other. We do make it to an occasional movie or out to eat and most of the time we make it to church. At times it’s necessary for church to come to him. We have six wonderful boys between us, a beautiful granddaughter and a lovely daughter-in-law who keep us going. We have our faith and our church. Life is still good, just different.

We attend a support group for Fibromyalgia at Courage Center when Ron is well enough to go. The Courage Center support group for Fibromyalgia meets the second Saturday of the month at Courage Center in Golden Valley. They also have aquatic exercise classes for people who suffer from Fibromyalgia, called Fibro-cize. For more information you may also call Wendy Lonn at 763-520-0327 or by visiting the Courage Center website at www.courage.org.

I also participate in a Well-Spouse support group which has been extremely helpful. Information on the national group can be found at: www.wellspouse.org. The Minnesota Well Spouse group has been meeting for 12 years and Gail Mooers is the leader and she can be contacted through her e-mail at mooinc4@msn.com.

March is Fibromyalgia and Chronic Fatigue awareness month. If you know someone with the illness, give them a call, send a card, visit them, remember them in your prayers and try to be a little more understanding and compassionate. This is a real illness which affects a lot of people and there are many others who suffer from it without even knowing why they are so sick.

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