Living With Fibromyalgia
And Chronic Fatigue Syndrome
by Jeanne Michaels
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.
