FIRBOMYALGIA
(FMS)-Fibromyalgia
produces widespread pain, disturbed sleep, and exhaustion from head to toe. FMS
means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of
the body. Although the muscles hurt everywhere, they are not the only cause of
the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by
malfunctions in the way the nervous system processes pain. Fibromyalgia is frequently associated with stress-related
disorders such as posttraumatic stress.
The
symptoms of fibromyalgia are unpredictable and most patients are frustrated by
their physical limitations and inability to make plans. You may feel as though
you have to "push yourself" to get things done.
Fibromyalgia is described as a "central
sensitization syndrome" caused by biological abnormalities in the nervous
system that acts to produce pain and cognitive impairments as well as
psychological problems. The term "fibromyalgia" derives from new
Latin, fibro-, meaning "fibrous tissues", Greek myo-,
"muscle", and Greek algos, "pain"; thus the term
literally means “muscle and connective pain".
Fibromyalgia is classed as a disorder of pain
processing due to abnormalities in how pain signals are processed in the
central nervous system. Exercise improves fitness and sleep; and may reduce
pain and fatigue in some people with FMS. In
particular, there is strong evidence that cardiovascular exercise is effective
for some people
Pain - Fibromyalgia pain has no boundaries. People
describe the pain as deep muscular aching, throbbing, shooting, stabbing, or
intense burning. Quite often, the pain and stiffness are worse in the morning,
the severity of regional pains (particularly those in the head, neck, shoulders
and lower back) are a strong predictor of a person's overall pain rating. The
muscles in these painful areas can feel tight, knotted and rope-like.
Fatigue - This symptom can be one of the most incapacitating
for people with fibromyalgia. Patients may feel as though concrete blocks
weight down their arms and legs and their bodies may be so drained of energy
that every task is an effort.
Memory and
Concentration - Difficulty
concentrating and retaining new information may seriously interfere with
everyday mental tasks. This symptom is referred to as "fibro fog" and
may hinder job opportunities.
Sleep
Disorders - Patients report trouble
falling asleep and more importantly staying asleep, but the un-refreshing
quality is what makes the disorder much worse than insomnia. Repeat arousals
prevent patients from reaching deep, restorative sleep. As a result, the night
is spent in "quasi-sleep" and patients wake up feeling as though they
have been run over by a Mack truck. Overnight sleep studies will likely show
repeat arousals with bursts of awake-like brain activity occurring throughout
the night, but a specific sleep disorder may not be identified.
Why in the world would I spend so
much time telling you about fibromyalgia when this is a blog about grieving
mothers? Because I have recently been diagnosed with this chronic illness. I
began by listing some of the symptoms of this syndrome but there are so many
more than the small list I began here. The other idea that scientists are
working on is a genetic link that this is passed from generation to generation.
I have a birth mother that has chronic insomnia and a birth father with Parkinson’s
and severe restless leg syndrome; both of these are neurotransmitter disorders.
Actually 90% of people who have severe restless leg syndrome are diagnosed with
FMS.
I have had severe insomnia for
going on 13 years. It just seemed to hit out of the blue when suddenly I could
not sleep. I was tired and sleepy but full restful sleep didn’t come. I went
nearly 10 days with no meaningful sleep when I was finally placed on Ambein. That
was a life-saver and it worked very well for me, till almost 3 years ago. I
began waking up and being restless at 3AM or 4AM every night. I was not able to
see my primary doctor in a timely fashion so I decided to see the assistant.
(Which I have recently learned is only a nurse practitioner.) She tried to
place me on antidepressants when she heard Heather died. After weeks of trying
and three rounds of different types of anti depressants that also work for
sleep, I demanded Lunesta. Lunesta has never worked right for me and I called
and had her add Ativin with it. She wanted me to do Xanax first, so I tried it
and after a few months took myself off that slowly and demanded Ativin.
After I did not continue working
at the Disney store, I went to work as an assistant manager at Harkins
Theatres. I kicked it right off working over 42 hours a week. After three weeks
I was not functioning and changed my hours to just over 32 hours a week. This
also seemed to be too much for me as I just could not sleep and rest and I felt
extreme fatigue, so I went down to about 15 hours a week. This seemed to be an
okay schedule but I was having issues with “brain fog” and doing inventory.
This was very hard for me as I have always been good with inventory and could
not understand why I was struggling so much with this task at work.
Then came Disney weekend and the
Tinkerbell 10K…and I fell like I have never recovered from that event. I was
beyond exhausted and hurt all over. It seemed every muscle in my body hurt all
the time. I had blood work done and it came back all messed up; so it was
recommended that I take some time to focus on my health. It has taken till now
to get a doctor to listen to me and then get the right blood work done to accurately
diagnosis me.
I have had doctors’ misdiagnosis
me because I am a grieving mother. They automatically assume that I am
depressed because my daughter died and I need medical help with that. I have
news for doctors, not all grieving mothers need drug intervention with
grieving, and sometimes we have actual real health issues that need attention.
I am very in tune with my body and what is going on so when doctor’s won’t
listen I did my homework and looked things up. I knew what blood work to order
and I went in strong and demanded they listen to me. Did I ask for this? NO!
Can I just keep going the way I am going? NO! Will I let this define me? NO
WAY!
I know that I was already
predisposed to possibly have this with the insomnia and restless legs. I also
have the extreme sensitivity to hot and cold. If anyone has been near me they
know right after I eat I freeze even in the heat of summer. I have been known
to wear a jacket while being 110 outside. Hot water can actually hurt when it
hits my skin and not because I am cold, it just sends pain shooting when it
hits my skin. It is also proven that a traumatic event, illness or accident can
cause Fibromyalgia to begin with no warning. Do I believe that Heather’s death
did this? YES, I DO!
I am working with my doctor and a
pain management doctor to try to come up with a drug combo and dosage that
works to control the pain, allow sleep but then also allow me to function
during the day without dizziness or sleepiness. This has been quite the
process. I also have been told by both doctors that my workout is the best
thing I can do. The cardio and the weight strengthening I am doing are really
good and I can continue to workout since I have been doing the workout for more
than 3 years. Of course if I have a day that I just can’t do the workout I will
go lighter or go home. I have learned the hard way that I have very different
limits now and I need to listen to those limits.
Bill and I have laughed that 20
years ago we were sure that fibromyalgia was “all in the head” of pastor’s
wives. This was their excuse to get out of doing things. While I still believe
that some women take this too far and become debilitated of their own choice,
this is a very real condition. Of course we joke that now Bill needs to become
a pastor so I can have this condition. Yes, I am joking, kind of. I have limits
now, but I will not allow this to define who I am. I will not be known as the
lady with the chronic disease. I am hoping that after vacation I will be able
to return to a limited work schedule. I miss the theatre and all the people
there.