My
Wife's Experience With Fibromyalgia
For
my wife and me, experience with an understanding of the nature of
fibromyalgia and the many facets that surround it began with an
accident my wife sustained in 1994 at the apartment house where we
lived. Just dealing with the issues that attend finding healing from
fibromyalgia or a way to handle it subjects an individual to a
minefield of misrepresentation, misinformation, abuse and betrayal
from many sources. When you add the involvement of legal
proceedings, you find yourself beset with hordes of enemies. A
nutshell version of my wife's experiences would be bigger than an
orchard.
The
accident involved my wife slipping on some dry snow, during a winter
day at least 5 degrees below zero, trying to make her way down a
stairway that hadn't been swept clean by maintenance for a day. We
lived on the third floor of an apartment building which had an
exposed series of wood terraces in the back, connected by a wood
stairway. The rear of the building is where the cars were parked.
There was "dry snow" on every step of the staircase; the
steps themselves were pressure treated wood, so they had little
traction; and there was no handrail, just a foot wide plank of wood
there more for decoration and convincing any untrained "inspector"
they sent by to examine the place. My wife slid down a twenty step
flight, landing at the bottom and falling forward, landing on her
hand and hitting her chin. After a full series of x-rays at the
local hospital, it was announced that she had, officially, sustained
a “comminuted fracture of the left distal radius”, in other
words, the forearm bone, of her left arm. Nothing else was
acknowledged.
The
immediate concern at the hospital was the fracture. No other
conditions were described.
It
was at that moment, in that situation, that we learned one of the
rules of insurance they don't acknowledge widely. That medical
insurance will not pay unless “the most conservative” method of
treatment is tried first. “The most conservative” method
involved setting my wife's arm bones and placing them in a cast like
“splint”.
She
remained in the splint for a month. Then the day came to remove it.
She went to the orthopedist who applied it, he cut the splint, and
the bone immediately refractured.
The
pain and shock was so bad, she got nauseous and passed out.
With
the “most conservative” methodology having failed, she was rushed
to the hospital for more aggressive treatment, application of an
external fixator.
The
fixator took a couple of months to do its work. Obviously, there was
discomfort still for my wife. In fact, she began to experience
aches and pains in many parts of her body. There particularly were
severe pains in her legs, knees and low back. She consulted her
doctor, what general opinion led her to believe was the only one she
needed for a doctor, the orthopedist who prescribed her the splint
that allowed her arm to refracture.
The
orthopedist never said anything different, the pains will “clear up
eventually”. My wife was prescribed Relafen.
The
fixator was finally removed, but the pains continued. And the
orthopedist continued to say that they would “clear up eventually”.
My wife tried to address the excruciating pains in her legs and
the orthopedist showed her some x-rays of perfectly normal knees and
said nothing was wrong. The orthopedist prescribed treatment for my
wife which consisted of ultrasonic waves applied to her arm through a
water bath.
Meanwhile,
we tried to look into filing suit for the injury.
Our
first attorney almost let the statute of limitations lapse on the
suit without doing a single thing. There were only a couple of days
left to the statute when we checked in and found that precisely
nothing had been done.
Our
second attorney deposed only the wife of one of the lesser owners of
the apartment building. She didn't know anything because she never
had any involvement with the building. He didn't depose the
maintenance man who was charged with cleaning off the stairs to find
out why they hadn't been cleaned.
No
sooner was one of the lesser owners of the building deposed than the
major owner sold the building. The new owners sent us a letter
announcing the change in the rent three days before the change was
scheduled to take effect. We didn't even know there was a change
until we received the letter. As a result, we didn't pay the new
rent when it was due. They ordered us evicted.
We
moved to another county.
We
dismissed our second attorney and tried a third.
The
third attorney introduced us to the term “fibromyalgia” to
describe my wife's discomfort. He described fibvromyalgia as being
associated with accidents, that many people suffer from it, but that
no cause was known. He recommended that my wife get a
rheumatologist. The rheumatologist confirmed the diagnosis of
fibromyalgia and he prescribed elavil and Daypro, the elavil to go to
sleep at night and the Daypro to get up in the morning. There were a
number of painkillers and muscle relaxers prescribed, as well,
including Flexoril and Percocet, on an “as needed” basis.
The
excruciating leg pains continued, though. It was at the deposition
the third attorney conducted, with pictures of the stairway, that she
remembered how she had gone down the steps, essentially skipping
steps, remaining upright, but landing foot first on each step, until,
finally, she crashed at the bottom.
At
that point, my wife went back to the orthopedist and asked to have
her ankles x-rayed. The orthopedist set up an appointment, but, the
night before the x-ray, he called up, recommending that my wife not
come to his office the next day, saying that the x-rays would not
help, literally begging her not to go through with getting an x-ray
of her ankles and practically crying as he said it. As a result, my
wife decided not to have the x-ray. As a “substitute” for the
x-ray, the orthopedist sent my wife for an EMG. We were told it
indicated a “lumbar radiculopathy”, but no one explained to us
even what that meant, how if was associated with the pains my wife
was feeling or how to handle them.
We
went to a different doctor, this time, a different orthopedist, for
x-rays and MRI's. He said they couldn't find anything wrong with my
wife's legs. On the day of a scheduled appointment, it should be
mentioned, the doctor's office doors were locked. There was no
answer when we knocked, but there were voices and shadows moving
hurriedly back and forth that could be seen through the door jamb.
All
this time, my wife could barely walk or stand for more than a minute
or two.
My
wife went to another doctor, at least for pain management of the
legs, since no one else was doing anything about it. This doctor was
an acupuncturist. He administered acupuncture treatments and
prescribed pain killers, physical therapy and a TENS unit. They
helped slightly, but only modestly.
When,
finally, it came time to settle the case, we decided to simply let it
be dismissed. No one had answered or even addressed the issue of the
leg pains, not even our attorney, and my wife did not want to settle
for an amount that would be too small for whatever problem she had
with her legs.
Since
there
was nobody who would directly address the pains in my wife's legs, we
decided to try to handle it ourselves. I would manually rotate her
ankles every night, trying to deal with the strong urge my wife felt
to have her ankles twisted.
Then,
about a year-and-a-half after we had the case dismissed, my wife
tripped over my boots in the living room and said she heard a loud
crack. We were afraid that something even worse had happened, but,
when she tried to stand up, she found that the excruciating right leg
pain had disappeared. She still had severe pain in the left leg, so
I continued to rotate that ankle each night. Then, about a month
after the first incident, my wife stepped in a pothole and heard a
loud crack in the other ankle. Promptly, her pain in the left leg
was now gone. She still had weakness in the legs and difficulty
walking or standing for short periods, but they felt much better than
they had for a long time.
Her
ankles had been subluxated and the displacement had caused pain
throughout all the rest of the muscles in her legs. But nobody
looked, nobody diagnosed what the situation was , they knew what it
was, but they weren't going to do anything about it.
Problems
like trigger point pain all over her body continued, though, along
with muscle stiffness, muscle aches everywhere, lethargy, trouble
sleeping, some of the effect they often call “fibro fog”, chronic
fatigue, never feeling rested, low back pain, pain in the knees, some
gastrointestinal problems, blood pressure being extremely high,
neuralgia, stiff necks, headaches, and, still, some pains and
weakness in her legs, although they were a lot better after the
ankles were fixed into place.
When
we consulted initially the rheumatologist,
he could only agree that it was fibromyalgia, but not offer any kind
of cure. He described it as “mostly a woman's disease”, saying
“mostly women get it”.
At
about this same time, we found that my wife could have filed for
disability after the accident, but not even our attorneys told us
about it.
My
wife was praying to St. Bernadette for an answer, watching “Song of
Bernadette” every night on the VCR, when, ten years after the
accident, she saw an ad in the newspaper that said “Fibromyalgia?”
and gave an offer for a free consultation. It was a chiropractor.
My wife decided she had nothing to lose so she visited him.
The
thermal scan indicated that the temperature of her muscles about her
neck, in the area of C5-6, was at maximum that the machine could
register. The chiropractor then took an x-ray of her neck and
informed her that she had a cervical disk compression at C5-6.
My
wife began treatment immediately. He cracked her neck and it made a
giant pop that even I could hear from across the room. It was like a
giant explosion of gas buildup. My wife said she immediately felt
80% better, like someone had “let her out of her captivity”.
After that first treatment, my wife could move her head freely,
axially and sagitally, left and right and up and down. My wife also
told him about the back pain and knee pain and he said that would
disappear after several months of traction.
The
chiropractor utilized the neck cracking a few more times in
subsequent treatments, but we soon found that that didn't need
repeating. My wife was helped more by adjustments and decompression
traction in the doctor's office. At this point, my wife had stopped
taking medication. He said it would take a year for the trigger
point pains to go away, but many of the other symptoms of
fibromyalgia were already diminishing.
With
the cause of her symptoms finally revealed, and the potential finally
available to get a valid and workable estimate of the impact on her
system and what it would cost, we tried to get the case reinstated.
We had simply dismissed it because we were not in a position to mount
a sufficient case, but it could be begun again. But, although we
contacted a dozen attorneys with the information about the cause of
my wife's pains, every single last one of them refused to take our
case.
Then
our chiropractor announced he was moving away.
My
wife knew what her problem was and how to help it, but, now, she was
left without someone to treat her.
My
wife went to another chiropractor, but he never took any x-rays, he
only threw her around on the table and asked her, “Who dropped you
on your head?”. Not all chiropractors are good, you do have to be
careful screening them. But she was determined to find a good one.
Finally, my wife decided to screen chiropractors before she went to
them, to find out, for example, if they took x-rays and administered
spinal decompression. After speaking to a few on the phone, she
made an appointment for a consultation with another chiropractor.
This chiropractor provided everything she needed and more. He would
not administer any treatment until he took a full x-ray of the
complete spine. He said, from the x-rays he took, that her disk
was “sitting right on her spinal column” and he frankly didn't
know how she could have walked into his office.
He
x-rayed her entire spine, consulted with her for an hour, showed her
the x-rays, and explained his treatment plan. He performed cranial
adjustment, other adjustments and spinal decompression. Evidently,
your head is supposed to sit on your shoulders in a very precise
manner, and if it's out of position even one centimeter, it can cause
stiff neck and stiff shoulders and limitation in your range of
motion. Also, the back of your neck is supposed to have an “S”
curve. If that curve is missing and your neck is straight, because
of atrophy, it can cause a serious problem, what's called “forward
head position”, which can cause further disk degeneration. He
provided a home traction device, comprised of a roll to put behind
her neck, a chin strap and a three pound weight, to hang over the
side of the bed for eight minutes every night. This kept her disks
decompressed. He explained that, when you have a disk problem, it's
a matter of constant maintenance to keep the symptoms from
progressing and alleviating symptoms.
This
was in 2005, 11 years after the accident, when we finally found out
about the disk problem. Finally, everything made sense, everyone
working to keep the information on my wife's neck from us. They had
the x-rays, they knew, but they wouldn't admit it. They constantly
said it was something else; they refused to look where asked; they
prescribed treatments that had nothing to do with the actual problem,
since a treatment that worked would point out what the real problem
was; and they provided medication to try to mask the symptoms, to
keep my wife from following up and trying to get an answer!
I
should mention that, between about 1999 and 2013, my wife had to go
to the oral surgeon twice to have an abscess on her lower jaw
surgically treated, the spot that she had hit landing at the bottom
of the stairs. She complained early on about her feeling numbness
in her tongue, and each time, the doctor said it was nothing, just
nerves.
People
every day sustain whiplash type injuries, from an auto accident or a
fall down accident, and they have no idea what it means. They don't
understand what's causing their neck pain, shoulder pain, back pain.
If they are told they have a herniated disk, they don't have it
explained to them what it is, how it can affect them, and how it can
be treated.
Fibromyalgia
is not a disease, it's not an illness, it's not a life sentence.
It's a syndrome, a collection of symptoms that come from some cause.
The fibromyalgia that my wife experienced came from her disk problem.
In fact, this seems to be the sole cause of all fibromyalgia. There
are those who try to blame other diseases and even medication. And,
yes, few years ago, despite feeling better from the chiropractic
treatments, my wife decided to take an elavil one night, just for
some deep sleep. When she woke up, she found she had the same
trigger point ailments that had been gone after treating with her new
chiropractor back. It took her a year to get rid of them again! And
some pain medications like Motrin will cause you GI problems and
difficulty sleeping. Don't expect that medications will
necessarily make you feel better at all. And some diseases, like
diabetes, will give you some symptoms of fibrolmyalgia. But
fibrolmyalgia itself is an entire collection of specific symptoms!
If you don't have a majority of them, you don't have fibromyalgia!
And if you have a majority of the symptoms, you have it! In a very
rare number of cases, you might have several independent conditions
simultaneously whose symptoms add up to fibromyalgia, but is it worth
the gamble that you might not get well and might even end up harming
yourself! Remember, many treatments or medications taken for
diseases you don't have have damage you or poison you! And treating
yourself for anything other than fibromyalgia will not cure the
fibromyalgia.
And
especially since dealing with a compressed disk through a
chiropractor is the most modest method of treatment there is,
completely non-invasive, it makes sense to look at this first before
deciding to take powerful poisons, have your blood flushed out or
have spinal fusion surgery which can leave your back with so little
flexibility you can't even clean yourself after going to the bathroom
and someone has to do it for you!
After
three months of treatment with her chiropractor, my wife felt 70%
better than when she arrived. He blood pressure dropped from 180 to
about normal. Depending on how long your symptoms are allowed to
exist, it could take years to get rid of every symptom. It was only
a few years ago, after Hurricane Sandy, that my wife got rid of one
of her worst symptoms, the night leg pains. She had to massage her
legs with a Homedics massager for the last twelve years just to be
able to get to sleep. This is why early treatment is so critical,
so your symptoms do not exacerbate to the point where you're
completely incapacitated. People must understand that a herniated
disk is not a death sentence, but it does take a lifetime of
maintenance to have a good quality of life. My wife has seen this
chiropractor since 2005 and she receives maintenance as needed. She
tries to get maintenance every week, to keep her symptoms at a
minimum. There are some weeks where she doesn't have to go at all,
because she's feeling pretty normal. My wife takes no medication, is
working full time and sleeps well through the night.
The
prevalent symptoms you can experience if you let yourself go, as my
wife did for up to ten years, are
pain
behind the eye;
eye
twitching;
tingling
above the upper lip, the kind that travels very rapidly and lasts for
just a second;
frequent
choking on saliva or food, tightness of the throat;
muscles
spasms and stiffness throughout the body, charley horses in the legs
and feet
when
stretching upon waking;
numbness
in the low back and extremities after sitting a short period;
neuralgia,
shooting pains in head, ears or face;
chronic
migraine headaches;
pins
and needles in extremities;
sensation
of glass or bee stings in your extremities;
sciatica,
pain down the back of the legs;
carpal
tunnel syndrome;
overall
aches and pains throughout the body;
GI
symptoms, irritable bowel, gas, bloating, diarrhea, nausea, severe
stomach cramping,
acid
reflux, severe urgency to get to the bathroom, frequent urination
sensation;
low
back pain, especially while sleeping, turning over in bed, reclining
on your back,
bending;
severe
knee pain, sitting in a chair, bending, climbing stairs or walking up
or down an
incline;
ankle,
knee, joint and leg pain, swelling and tightness, pressure on your
feet, if you have
your
shoes on for long periods;
chronic
fatigue;
leg
weakness, one of the most serious, causing limitation on the amount
of time you can
stand
up or walk around;
severe
leg pains upon retiring in bed at night;
high
blood pressure;
lethargy;
depression;
anxiety,
sleeplessness;
sensitivity
to light, noise, temperature changes and extremes;
very
tight knots in the trapezius muscles, the upper back, shoulder
blades;
pain
causing stiff neck and shoulders;
limitation
of motion in neck and shoulders, inability to look sideways and up
and down;
diminishment
of eyesight, can affect the optic nerve;
hand/eye
coordination diminished, dropping things, balance and coordination
problems,
diminshment
of cognitive abilities, ability to concentrate and focus;
weakness
of the voice after extreme fatigue;
tightness
of scalp, feeling the scalp being stretched over the skull;
leg
shortening.
My
wife believes that Advil, Motrin and Aleve can cause a lot of
indigestion, other GI symptoms and nervousness. It is much better to
try to do without.
When
my wife weaned herself off the anti-depressants, it took about a
year for all the anxiety and jumpiness to finally dissipate.
This
is a nutshell of my wife's experiences with fibromyalgia.
In
the future, we will provide information about how a herniated disk
can cause all the symptoms of fibromyalgia and how to deal with it.