On this web site you will find:Main Menu
Fibromyalgia is a muscular disease of undetermined
origin. The primary symptoms are ongoing pain and fatigue.
The disease is NOT fatal, and is it NOT contagious.
The pain stems from fibrous tissues, muscles, tendons,
ligaments, and other "white" connective tissues. The pain can be
aggravated by strain or overuse. Many other illnesses can occur in
conjunction with fibromyalgia including bladder and colon spasms, migraine
headaches, asthma, and allergies (there are many more).
The level of pain experienced varies from person
to person, and each individual will experience different levels of pain
at different times. The pain may range from a vague achy feeling,
to significant pain localized in particular areas (such as the neck and
shoulders, a common spot for this disease), to an overall feeling of pain
that can be intense. Some people describe fibromyalgia as feeling
as if they have the flu, or as if they have badly strained their muscles.
The fatigue can likewise range from mild to severe.
Sleep disturbances are a primary cause of the fatigue. Those with
fibromyalgia hover at the edge of deep sleep, rarely reaching the fourth
level of sleep where the body rests and produces needed chemicals such
as serotonin. This critical fourth level of sleep cannot be artificially
induced. A person must reach it on his own, yet those with fibromyalgia
cannot do so because of the pain that keeps waking them up.
A vicious cycle is set in motion. Pain causes
lack of proper sleep. Lack of proper sleep produces fatigue and deficiencies
of needed chemicals such as serotonin. This in turn produces more
pain (or vice versa; perhaps the sleep disorder precedes the pain).
The cycle goes on and on. (For information on breaking the cycle,
jump to "A decent night's sleep.")
A person can have more than one disease at a time
-- fibromyalgia and arthritis concurrently, for example. Because
the symptoms overlap, physicians may correctly diagnose one disease (like
arthritis) yet overlook the presence of fibromyalgia.
How do the doctors diagnose fibromyalgia?
As long as the doctor does not overlook it due to another legitimate diagnosis
(like arthritis), diagnosis of fibromyalgia is primarily achieved by a
process of elimination.
First, the doctor looks at the symptoms (pain, fatigue,
etc.) which have been going on for many months or years. Next, he
or she examines the MRIs, CAT scans, blood tests, and neurology reports
that are all negative. The negative test reports help the doctor
decide what ailments you most likely do not have. The doctor
is now left with the following information: 1) you have long-term,
significant pain and fatigue; 2) no testing process presently available
can explain why you have the symptoms. You are now a candidate to
be diagnosed with fibromyalgia.
Because the science of medicine is just that --
a science, doctors want a clear set of guidelines to use when making a
diagnosis. Presently fibromyalgia does not give them clear guidelines
that can be accurately measured with tests (like blood work and X rays).
Some doctors are frustrated by the lack of definitive test measurements
(your blood work and X rays are normal), and these doctors may refuse to
acknowledge a disease that has no clear guidelines and tests. These
doctors may insist you have no disease at all, or maybe they will diagnose
and treat you for a different ailment (an ailment they prefer to deal with
because they understand it better, but it will be an ailment you do not
have), or they may refer you to a specialist to get you off their hands
(not that referral to a specialist is bad; I merely point out that some
physicians will give you a referral to get rid of you).
Thankfully, some doctors are not frustrated by the
lack of definitive test measurements, and they will decide by a process
of elimination that you have fibromyalgia. Your best bet for getting
a correct diagnosis will come from a rheumatologist.
In studying fibromyalgia patients, it has been noticed
there are certain areas on their bodies that are often very, very tender
to the touch. These areas include the base of the neck, the front
of shoulders, the sides of the hips, and the sides of the knees.
Because these tender areas (called "tender points") were common to so many
patients, researchers and doctors declared these "tender points" were a
guideline they could use to properly diagnosis fibromyalgia. Strict
rules were established to state where the "tender points" were located,
and to require a patient to have a minimum number of these "tender points"
to qualify for the fibromyalgia diagnosis.
I feel the strict rules surrounding "tender points"
are excessive. Those with fibromyalgia may well have tender areas
in various places on the body, but that does not mean the patient will
exhibit any certain number of "tender points" at the exact locations stated
in the rules. I believe in the desperate rush to gain definitive
guidelines to diagnosis fibromyalgia, "tender points" have been ceased
upon as a main standard simply because no other better standard is presently
known.
Unfortunately, there are doctors who will use the
"tender points" rules as if they are written in stone. If you, as
a patient, do not conform to the rules, you do not have fibromyalgia, they
may say. In the wrong hands, rules governing "tender points" can
be misapplied to the detriment of the patient.
Many physicians are not trained to recognize the symptoms of fibromyalgia, and some will attempt to treat you using outdated methods. You need to see a rheumatologist if you are to have the best chance of getting a correct diagnosis and effective medications. Note that many rheumatologists are also improperly trained or may not have studied the current research. You may have to try two or more rheumatologists before you find one who is both knowledgeable and supportive. I recommend speaking with other fibromyalgia patients to get their recommendations on rheumatologists in your area.
Ongoing pain and fatigue are the primary symptoms
of the disease.
Most people with fibromyalgia have been seriously
ill for five or more years before they finally get a correct diagnosis
from a doctor. The patient probably had every test under the sun
including MRIs, CAT scans, blood tests, and an exam by a neurologist.
Over and over the patient was told the tests were negative and no medical
problem could be found. At long last, probably in a rheumatologist's
office, the patient was correctly diagnosed with fibromyalgia.
For those with fibromyalgia, muscles feel knotted
and stiff. It can be painful and difficult (if not impossible) to
turn your head to see over your shoulder. Your hips, knees, or ankles
may not allow you to walk nor sit normally. Your ribcage may prevent
bending or lifting. Your shoulders, arms, wrists, and hands may not
allow you to reach, grasp, lift, nor carry. In effect, your mobility
has been limited.
Stress can aggravate your medical condition.
When the mind or emotions are stressed, muscles tense. In fibromyalgia,
the muscles are already tensing inappropriately, and the stress induced
tightening of the muscles causes further pain.
Fibromyalgia tends to have a lot of baggage when
it arrives in your life. You may develop asthma, allergies, a spastic
colon or bladder, migraine headaches, and a host of other ailments.
These are on top of the muscle problems fibromyalgia created. In
fact, fibromyalgia can cause the chest muscles to tighten with a prolonged,
intense pain that may make you feel as if you are having a heart attack.
Mornings are usually the worse time of the day since you
awake to a body that seems to have been cemented in an unnatural, permanently
strained position. Some days it can be a struggle just to get up,
take a shower, and dress. Small tasks can be exhausting on "bad days,"
but on "good days" you may find you can accomplish a great deal.
If you work very hard on a "good day" to hurry and
take care of all the tasks that have been piling up, you will most likely
strain your body and end up having a string of "bad days" as a result.
Knowing your personal limitations and respecting those limits are vital
to your quality of life.
This is not to say that on a daily basis, the reason
you have pain and fatigue is because you did something to bring it on yourself.
The symptoms of the disease are going to intensify for reasons unknown
to you and which are unavoidable. Also, for many people, the weather
is a major factor. Cold and/or damp weather may make you ache as
if you have been beaten with a baseball bat.
A person suffering from fibromyalgia
is most likely frustrated. You want to have a normal, healthy life
like you led at one time, but the disease is preventing you from achieving
it. This situation not only frustrates you, it makes you angry.
It sometimes depresses you as well. The frustration, anger, and depression
over health issues can be compounded by other non-health related problems
in your day-to-day life.
If you suffer from fibromyalgia, you usually do
not have any medical device like a wheelchair, crutches, or cast that would
signal to an outside observer that there is a medical problem. Outside
observers, failing to see signs of illness, assume you are healthy.
They make annoying comments such as, "You have a disease? You don't
look sick to me."
To give
a taste of what it can be like to live with fibromyalgia, I'll create a
brief story using a fictional woman named Patience.
Patience was in pain when she awoke, and she did
not feel as if she'd gotten any rest though she'd been in bed for eight
hours. For fifteen minutes she stared at the ceiling and thought
about getting up. She was using the time to convince her aching muscles
to cooperate and lift her body off the mattress.
Finally she swung her legs out from under the
covers and stumbled over the pile of shoes and dog toys at the bedside.
Navigating the obstacle course, she made it to the bathroom where she flipped
the switch and discovered the light that had been burned out all week was
still not operational. Hadn't she asked her husband to get a step
ladder and fix that again last night?
Staring down into the sink, Patience was greeted
by beard trimmings, smeared tooth paste, and grime. She had scrubbed
the sink the week before, but it was filthy again. Just like the
shower. And the kitchen floor. And the refrigerator shelves.
Disgusted, Patience closed her eyes and wondered
if the day would ever come she would again have the ability to regularly
and thoroughly scour the house. Her wrists just didn't have the strength
to do the work anymore, and it exhausted her to even clean the master bathroom
once a week. Somehow she would have to dig deep to find the physical
strength...somehow....
Let's follow Patience during her grocery shopping trip to see how things can go from bad to worse.
Patience stood in line at the grocery store checkout
counter and winced as she tried to lift the sack of dog food from the cart.
She had managed to get the dog food from the grocery shelf into the basket
in the aisle, but the shopping trip had taxed her strength and energy levels
to the maximum, and she did not think it was wise for her to lift the heavy
sask. Abandoning her effort, she turned to the teenage bag boy at
the end of the counter. "Excuse me. Could you put this on the
scanner for me?"
The teenager continued to load can vegetables
into plastic sacks. "Huh?"
"I asked if you would lift this dog food for
me," she repeated.
"You want me to lift that?"
"Yes, please." The boy did not respond,
so Patience tried again. "I can't pick it up. I need you to
put it on the scanner."
"Yeah, okay." The bag boy gave her a sarcastic
look that she was asking him to do something she could do herself.
Patience strove to keep from reacting to the
insult.
By now the checker had finished scanning the
rest of the groceries and was waiting for the final item, the dog food.
The bag boy was taking his time sacking the other groceries, and he was
not making a move to lift the dog food. Patience waited ten seconds.
Twenty. Thirty. The checker was staring at Patience, and so
were the customers in line behind Patience. Patience felt like she'd
been standing there an hour waiting for help, and she was humiliated that
she was having to beg to get someone to aid her with so simple a task.
Uncomfortably Patience waited another thirty
seconds. Forty. Still the bag boy was occupied with his job
and did not lift the dog food. A coworker was calling for him, and
he sat the last grocery bag in Patience's cart and turned to see what the
coworker wanted. "Huh? Yes, I'll mop that up in a minute.
Can you get Greg to take over for me here? Hey, did you see the schedule
for next week yet? I'm not working Tuesday, am I?"
Patience could stand the strain of waiting no
longer. The customers behind her were shuffling their feet and craning
their necks to see what was taking so long, and the checker was drumming
her fingers on the scanner to express her irritation with the delay.
Patience snatched the dog food sack and shoved it onto the countertop.
Her hands were shaking as she wrote the check
to pay for the groceries. She didn't make eye contact with anyone
for fear she would see their disapproval that she'd "lied" about being
able to lift the dog food. Abruptly she closed her purse, took her
receipt, and hurriedly pushed her cart out into the parking lot.
She was straining to load her purchases into
her van when a friendly voice greeted her.
"Hi, Patience!" It was Sheila, the president
of the parent-teacher organization at her children's elementary school.
"The booster club is going to sponsor a concession stand this basketball
season, and we need volunteers to work the stand every Friday night.
You'll need to call Mary Harrison and let her know when you and your husband
can serve. If each couple takes five turns, the schedule will work
out perfectly."
Exhausted from the everyday tasks of caring for
her home and family, Patience wondered where she would find the energy
to man a concession stand. She supposed she and her husband would
volunteer for one Friday next month and hope no one would criticize her
for not doing more.
"Mary Harrison is also in charge of the Girl
Scouts this year," Sheila continued, "and she's got ten super trips planned
for the girls between now and Christmas. Isn't Mary amazing?
I think she's going to be so much better than the woman who ran the troop
last year. You would be good at it yourself, Patience. Why
don't you serve as an assistant? I know Mary would be glad for the
extra help, and you would get to spend more time with your daughters.
After all, you're not a room mother, are you? I'm surprised you aren't
since you only work part-time now. Whatever do you do with all that
free time?" Without waiting for a reply, Sheila bounced back to the
subject of Mary Harrison. "Mary is a registered nurse, and I personally
feel secure knowing my girls are in the hands of a medical professional
should anything happen on one of the Scout trips. Did you hear how
Mary saved that child from drowning last month at the church picnic?
I get chills every time I think about it."
Patience was thankful Mary's skills had saved
the child's life, but it was a little depressing to hear Sheila prattle
on endlessly about Mary Harrison's achievements. Patience's medical
condition had forced her to cut back from a full-time job to a part-time
one, and she certainly didn't have the energy to devote a lot of time to
the parent-teacher organization, nor the booster club, nor the room mother
duties, nor the Girl Scout troop activities.
"And the principal said Mary should run for the
school board. I'd vote for her, wouldn't you?" Sheila asked rhetorically.
"Speaking of running for office, did you know about the letter writing
campaign we're staging against Congressman Williams? Call me when
you get home, Patience, and I'll give you the address."
If Patience was going to take time to write a
letter, it would be one to the grocery store manager to tell him how rudely
she had been treated by his employees. Right now in her world, her
problems with the heavy sack of dog food were more important than whatever
Congressman Williams had done to irritate the public. Maybe she could
ask Sheila to help her get the sack into her van....
"Well, I've got to run, Patience. I just
got my nails done, and if I don't get my errands finished before five,
I'll be late picking up the boys from ball practice. Bye!"
Patience waved as Sheila walked away, and with
a deep sigh she reached for the sack of dog food. Her back and neck
were aching horribly, and she would have to lie down when she got home.
Just as soon as she finished unpacking the groceries, and cooking supper,
and folding the laundry, and returning the calls on the answering machine....
No, this has not been a good day for Patience.
But it can give you a perspective on how it can feel to have fibromyalgia.
If you would like, you can find an answer to Patient's
housekeeping and shopping woes by skipping to "Take
charge and manage your disease." A resolution to the above story
can be found by jumping to a segment
of "Ideas for how to deal with people."
This is a tough act to balance.
On the one hand, your physical health is your personal business, and you
do not wish to go around making speeches about your disease and the overwhelming
problems it is causing you. On the other hand, how are your friends
and family members supposed to learn that your life has changed and why
it changed if you don't tell them? For that matter, the clerks at
the store may not be trained to deal with people who don't look
handicapped but are. Whether you like it or not, you are going
to have to put together a routine for how to talk to other people about
your disease.
Allow me to offer a few suggestions.
1) To a friend or family member: "As
you probably know, I have been having some tough medical problems for a
long time. I recently got a diagnosis, and it turns out I have a
disease called fibromyalgia. It is a muscular disease, but thankfully
it is not contagious and is not fatal. It is painful, some
days more than others, and it causes fatigue. There is no cure for
the disease, and unfortunately there are few effective medications available.
I am making changes to my lifestyle to better manage the disease, so if
and when you notice I may be doing things differently, or maybe even cutting
back on some activities I used to do, you will understand why. Although
the disease doesn't make me look very different on the outside, on the
inside it is affecting my health and my life in major ways."
2) For coworkers, I suggest modifying the
speech in #1 to fit your particular situation.
2) To a store employee who seems puzzled that
you have asked for special assistance: "I am not able to lift that
(reach that, push that, load that) item. Could you please have someone
assist me?" If you are in a conversational mood and you feel like
teaching someone about the disease, you might start out with something
like: "I have a muscular disease called fibromyalgia, and I am not
able to lift that...."
After delivering your speech, you can go into however
much detail you wish regarding the specifics of the disease and the exact
ways it is impacting your life.
Amazingly, you may have already learned that even
when you attempt to explain the situation to some people, they just don't
seem to understand -- or shall I bluntly say that some people are not interested
in you nor your medical problems. If there is one thing you need
to learn, it is this: YOU ARE NOT RESPONSIBLE for the ignorant way
other people speak and act. If your relative or friend or coworker
is insensitive, rude, or downright cruel, that is their problem,
not yours. Do not allow them to trash your mood.
I will present another story about Patience, a fictitious
woman with fibromyalgia. (To see the first story, jump to a
segment of "How does it feel to have fibromyalgia?".) Patience's
sister Linda knows Patience has a muscular disease called fibromyalgia.
However, Linda continues to act as if Patience is a healthy person, and
she becomes pushy when Patience does not meet her expectations. Let's
watch as Patience is attacked by Linda. Afterwards, I will demonstrate
how Patience could have better handled the situation.
Patience answered the phone and found it was her
sister Linda on the line. "Hello, Linda. How are you?"
"Pretty good. I'm calling to let you know
Richard and I are going to take the kids out water skiing tomorrow, and
Mom and Dad are joining us on their pontoon boat along with Dale and his
crew. We'll throw some burgers on the grill and make a day of it
on the lake. Can you and Kyle meet us at the dock by nine?"
Inwardly Patience winced. Her immediate
family were all going out on the lake, and though it sounded like fun,
Patience knew her physical limitations. Since her fibromyalgia had
worsened this past year, she had found boat rides on choppy lakes to be
extremely painful. It was only when the lake was perfectly calm that
her muscles did not ache from the ride.
The weather forecast for the morrow was sunny
but windy. It would not be a good day for her to be on the lake.
Besides, she and her husband Kyle had already made plans. They were
cleaning the garage in the morning and taking their girls to the park for
a picnic during the afternoon. "Thanks for inviting us, Linda, but
we have plans for tomorrow."
"Oh. What are you doing?"
"We're going to clean the garage and take the
girls on a picnic at that new park that just opened --"
"Clean the garage? We're inviting you to
go boating, and you would rather stay home and clean the garage?
Patience, I don't know what it is with you, but it seems like whenever
the family is getting together, you always have an excuse why you aren't
coming. When I told Dale I was calling you, he said it was a waste
of time because you wouldn't come."
Their brother had made that rude remark about
her? Patience was stung that both her siblings were on the attack.
"Linda, I told you, we already have plans --"
"I suppose it would have made a difference if
I'd called a week ago? I don't think so. You've turned me down
the last three times I've invited you out on the lake. You always
say it's that fibromyalgia thing."
Drawing in a deep breath, Patience tried to explain.
"Listen, Linda, going out on the lake is not easy for me. When the
water is rough --"
"It won't be rough, Patience. For heaven's
sake, do you think I'd take the kids water skiing in a wind storm?"
Patience doubted anything she could say would
make a dent in her sister's thick head. Linda had her own ideas how
things were, and she was not open to other people's point of view.
"I cannot go out unless the water is very calm."
"Okay, then we'll do this. Meet us at the
dock at nine, and if after you've been out for a while you start feeling
bad, we'll bring you back in."
What her sister was suggesting was ridiculous.
Linda wanted Patience to fill the cooler, pack the car, drive for an hour
to get to the dock, risk certain pain by going out on choppy water, and
then after a half hour say, 'Excuse me, family, but I am ill and I need
you to turn this boat around and let me off so I can go home and die on
the sofa.'
No. Patience was not going to be dragged
into this farce just to pacify her sister. "I'm sorry, Linda.
I appreciate the invitation, but I --"
"Okay, fine! The rest of our family is
going out tomorrow, and you can clean your stupid garage or whatever else
you think is more important than being with us!"
At the conclusion of this call, Patience was
an emotional wreck. Her sister had accused her of alienating herself
from the family, and Linda had shown no compassion for Patience's physical
limitations. The whole episode made Patience mentally and physically
ill.
I have a suggestion for Patience. She had
already long since explained the specifics of the disease to her sister.
The simple matter is, Linda does not have the disease and does not care
how it affects Patience's daily life. Not only that, but Linda is
a control freak and is trying to manipulate other people into doing what
she wants them to do. Patience needs to stop making excuses and take
charge of the conversation. Allow me to replay this phone call again
and rewrite a better way for Patience to respond. The changes are
highlighted to accentuate the differences.
Patience answered the phone and found it was her
sister Linda on the line. "Hello, Linda. How are you?"
"Pretty good. I'm calling to let you know
Richard and I are going to take the kids out water skiing tomorrow, and
Mom and Dad are joining us on their pontoon boat along with Dale and his
crew. We'll throw some burgers on the grill and make a day of it
on the lake. Can you and Kyle meet us at the dock by nine?"
Inwardly Patience sighed.
Her immediate family were all going out on the lake, and though it sounded
like fun, Patience knew her physical limitations. Since her fibromyalgia
had worsened this past year, she had found boat rides on choppy lakes to
be extremely painful. It was only when the lake was perfectly calm
that her muscles did not ache from the ride.
The weather forecast for the morrow was sunny
but windy. It would not be a good day for her to be on the lake.
Besides, she and her husband Kyle had already made plans. They were
cleaning the garage in the morning and taking their girls to the park for
a picnic during the afternoon. "Thanks for inviting us, Linda, but
we have plans for tomorrow."
"Oh. What are you doing?"
"We're going to clean the garage and take the
girls on a picnic at that new park that just opened --"
"Clean the garage? We're inviting you to
go boating, and you would rather stay home and clean the garage?
Patience, I don't know what it is with you, but it seems like whenever
the family is getting together, you always have an excuse why you aren't
coming. When I told Dale I was calling you, he said it was a waste
of time because you wouldn't come."
Their brother had made that rude remark about her?
Patience was stung that both her siblings were on the attack. But
it was business as usual, she supposed. Linda and Dale both had a
nasty habit of trying to manipulate others to do what they wanted.
"I do not want to continue this conversation if I'm going to be attacked.
If you want to talk, fine, but I am not going to argue over this."
"I'm not trying to start an argument," Linda
insisted, "I just want to know why you aren't coming with us. You've
turned me down the last three times I've invited you out on the lake.
You always say it's that fibromyalgia thing."
"I told you why I am not
going with you. I have other plans. But you are right, my fibromyalgia
does limit the things I can do on the lake. When the water is rough
--"
"It won't be rough, Patience. For heaven's
sake, do you think I'd take the kids water skiing in a wind storm?"
Patience doubted anything she could say would
make a dent in her sister's thick head. Linda had her own ideas how
things were, and she was not open to other people's point of view. "Do
you understand that I am telling you I have other plans for tomorrow?"
"You can clean the garage anytime, Patience.
Meet us at the dock at nine tomorrow, and if after you've been out for
a while you start feeling bad, we'll bring you back in."
What her sister was suggesting was ridiculous.
Linda wanted Patience to fill the cooler, pack the car, drive for an hour
to get to the dock, risk certain pain by going out on choppy water, and
then after a half hour say, 'Excuse me, family, but I am ill and I need
you to turn this boat around and let me off so I can go home and die on
the sofa.' Not to mention Patience was supposed
to abandon her own plans for the morrow simply to please Linda.
Patience decided she had
wasted enough time on this conversation. Linda's intent was to badger
Patience into conforming to what Linda had planned for the extended family,
and Patience was not going to play that game. "I appreciate the invitation,
and perhaps another time when my schedule and the weather permit, I'll
be able to go with you."
"Okay, fine! The rest of our family is
going out tomorrow, and you can clean your stupid garage or whatever else
you think is more important than being with us!"
As calmly as she could,
Patience bid her sister 'goodbye' and hung up the phone. Linda had
behaved like a manipulative and insensitive shrew. Though it was
upsetting to have had the conversation, it was over now, and Patience would
put it in perspective and get on with her day. After all, Linda
was the one with the attitude problem, not Patience.
No, there is nothing Patience could do to change
Linda. But Patience DID have the ability to change herself.
She handled the conflict with dignity and kept the proper perspective.
What about a conflict with a coworker, you ask?
Let's watch Patience at work and see how she deals with the problem in
a positive manner.
Patience had been in the committee meeting for
two hours. Her back was aching from sitting so long, and though she
had gotten up and stretched, she needed to spend some time walking around
to work some of the stiffness out of her muscles. "Yes," she responded
to the chairperson's request for suggestions, "I have a suggestion.
It isn't about the project, but I think it will make this meeting more
productive. I suggest we break for ten or fifteen minutes and let
everybody get a cup of coffee and stretch their legs."
"If you want a coffee," a coworker replied, "stick
your head out in the hall and tell the secretary to bring you one."
Patience rephrased her suggestion so that she
could be more clearly understood. "We've been in here for two hours,
and I think it's time we took a break."
"We don't have time to break," the coworker said
with a glance at his watch. "We've got too much to do."
"We have a lot on the agenda," Patience agreed,
"and if I personally am going to be able to give 100% to the project, I
have to break for a little while. Marathon sessions are not conducive
to efficient and effective work."
"My department didn't send me down here to drink
coffee and stretch my legs," he said briskly. "I came to work.
Let's get on with it."
Patience ignored the coworker's rude comment
and gave the chairperson a polite smile. "If you don't think the
committee needs to break, then I'll excuse myself for a few moments and
you can go on without me."
"No, no," the chairperson said, "I agree, Patience.
We could all use a break. We'll resume the meeting in ten minutes."
As the meeting participants stood to leave the
room, Patience heard her coworker make a remark to the committee secretary.
"I don't know why her department can't send somebody
down here who is capable of working," he complained. "Patience
is only a part-time employee now, and if you ask me, whatever disease she
has is interfering with her performance."
Halting where she stood, Patience turned to her
coworker and addressed the issue head-on. "Pacing the work makes
good business sense, and although you may prefer marathon sessions, not
everyone else does. My work performance is not an issue here, and
I would appreciate it if you would avoid making personal comments about
me."
Yes, sometimes taking the bull by the horns is the
best way to avoid being gored in the back.
While we're on the topic, let's
return to Patience's grocery shopping expedition (as told in a
segment of "How does it feel to have fibromyalgia?") and allow her
to plan in advance.
The household needed groceries. Patience
normally did not go grocery shopping without her husband. She depended
upon him to push the cart and unload it on the counter, but his schedule
was crammed so full he would not have time to swing by the store until
the following evening.
Having long since learned to manage her life
around the difficulties fibromyalgia produced, Patience already knew what
her options were: 1) wait until her husband was available; 2) ask
a friend or family member to help her shop; 3) narrow the grocery list
to only the items that were absolutely needed for the next 24 hours, then
get them herself.
Patience opted for #3, and she drove to the grocery
store to get milk and dog food. Since she would be going shopping
again soon with her husband, it was not necessary to buy a 20-pound sack
of dog food. She would either buy a 5-pound bag or a few cans of
dog food.
As you can see, Patience did not need to ask the bag boy for help with her dog food since she could easily manage it herself. But wait, you say, this only works if Patience has reliable help with her regular grocery shopping expeditions. You're right. I invite you to jump to "Take charge and manage your disease" for shopping strategies, but before you do, allow me to replay Patience's encounter with the bag boy so that she can take the bull by the horns. The changes are highlighted to accentuate the differences between this story and the original (the original story was told in a segment of "How does it feel to have fibromyalgia?").
Patience stood in line at the grocery store checkout
counter and winced as she tried to lift the sack of dog food from the cart.
She had managed to get the dog food from the grocery shelf into the basket
in the aisle, but the shopping trip had taxed her strength and energy levels
to the maximum and she did not think it was wise for her to lift the heavy
sask. Abandoning her effort, she turned to the teenage bag boy at
the end of the counter. "Excuse me. Could you put this on the
scanner for me?"
The teenager continued to load can vegetables
into plastic sacks. "Huh?"
"I asked if you would lift this dog food for
me," she repeated.
"You want me to lift that?"
"Yes, please." The boy did not respond,
so Patience tried again. "I can't pick it up. I need you to
put it on the scanner."
"Yeah, okay." The bag boy gave her a sarcastic
look that she was asking him to do something she could do herself.
Patience had shopped at
this store for two years, and she intended to shop there in the future.
If she did not take action to deal with the employees' insensitivity now,
she would continue to encounter it each time she came in to shop.
"Thanks, John," she replied without sarcasm after reading his name badge.
"I'm sure you have other customers who need special assistance, and you'll
need to add my name to the list."
By now the checker had finished scanning the
rest of the groceries and was waiting for the final item, the dog food.
The bag boy was taking his time sacking the other groceries, and he was
not making a move to lift the dog food. Patience waited ten seconds.
Twenty. Thirty. The checker was staring at Patience, and so
were the customers behind Patience in line. Patience
felt like she'd been standing there an hour waiting for help, but she knew
better than to foolishly struggle with the bag of dog food herself.
A short wait was preferable to straining her muscles further and causing
hours and days of pain.
Another thirty seconds passed. Forty.
Still the bag boy was occupied with his job and did not lift the dog food.
A coworker was calling for him, and he sat the last grocery bag in Patience's
cart and turned to see what the coworker wanted. "Huh? Yes,
I'll mop that up in a minute. Can you get Greg to take over for me
here? Hey, did you see the schedule for next week yet? I'm
not working Tuesday, am I?"
Patience reminded herself
that she would not be pressured into harming her body simply because other
people were insensitive and unprofessional on the job. The
customers behind her were shuffling their feet and craning their necks
to see what was taking so long, and the checker was drumming her fingers
on the scanner to express her irritation with the delay. Patience
maintained her composure and made direct eye contact with the checker.
"Apparently John forgot I need assistance. Please call for a manager."
The checker was startled
by the request. "Eh, I'll get the dog food," she edged around the
counter to reach the cart.
"Thank you," Patience said
calmly. "I appreciate your help, but I would still like to speak
to a manager. Please call for one."
The checker scanned the
dog food and nervously paged a manager to register #6. Patience paid
her bill and pushed her loaded cart to the side where she would be out
of the way, then planned how she would address the manager when he arrived.
"May I help you, Miss?"
the store manager asked, glancing at the cart to see if he could determine
what might have caused a problem.
"Yes, thank you," Patience
smiled politely. "I'm sure you have a number of customers who require
a little assistance when shopping, and I am one of them. I have a
physical disability that makes it difficult for me to lift large items
such as sacks of dog food, and I need one of your employees to help me
get it in and out of the cart."
"No problem, Miss.
I'll get a bagger to push that out to your car and unload it for you."
"I appreciate it.
I hope you will mention this to your bag boys so they will understand that
when a customer asks for assistance, they need to give it."
The manager ran an assessing
eye over the registers, and he saw that John was looking agitated.
"Miss, did one of my baggers refuse to help you when you asked?"
"Yes, John did not seem
to believe I needed help, and he left me standing at register #6 for quite
a while."
"I'm sorry, Miss."
He fixed his eye on John and motioned for him to go to the office.
"I'll take care of this, and I promise you won't have to ask twice next
time."
If you read about Patience's original grocery shopping expedition, you are no doubt hoping she'll get another chance to encounter Sheila in the parking lot. Allow me to present our confident Patience as she continues with her day. The changes are highlighted to accentuate the differences between this story and the original.
Patience thanked the bag
boy for loading her groceries, and as she closed the van door, a
friendly voice greeted her.
"Hi, Patience!" It was Sheila, the president
of the parent-teacher organization at her children's elementary school.
"The booster club is going to sponsor a concession stand this basketball
season, and we need volunteers to work the stand every Friday night.
You'll need to call Mary Harrison and let her know when you and your husband
can serve. If each couple takes five turns, the schedule will work
out perfectly."
Exhausted from the everyday tasks of caring for
her home and family, Patience knew she did not have the energy to man a
concession stand five nights. Now was not the
time to have this discussion, though. Patience would decline the
request to serve when she called Mary Harrison.
"Mary Harrison is also in charge of the Girl
Scouts this year," Sheila continued, "and she's got ten super trips planned
for the girls between now and Christmas. Isn't Mary amazing?
I think she's going to be so much better than the woman who ran the troop
last year. You would be good at it yourself, Patience. Why
don't you serve as an assistant? I know Mary would be glad for the
extra help, and you would get to spend more time with your daughters.
After all, you're not a 'room mother,' are you? I'm surprised you
aren't since you only work part-time now. Whatever do you do with
all that free time?" Without waiting for a reply, Sheila bounced
back to the subject of Mary Harrison. "Mary is a registered nurse,
and I personally feel secure knowing my girls are in the hands of a medical
professional should anything happen on one of the Scout trips. Did
you hear how Mary saved that child from drowning last month at the church
picnic? I get chills every time I think about it."
Patience was inwardly sighing to hear Sheila
prattle on endlessly about Mary Harrison's achievements. Patience's
medical condition had forced her to cut back from a full-time job to a
part-time one, and she certainly didn't have the energy to devote a lot
of time to the parent-teacher organization, nor the booster club, nor the
room mother duties, nor the Girl Scout troop activities.
But Patience knew that
all people do not have the same physical abilities. She had to budget
her precious energy for important things like hosting a birthday party
for her girls and taking them to the library to research their class assignments.
Certainly there were other worthy causes, the school booster club for example,
but Patience did not have energy left in her budget to spend there.
If Sheila or anybody else had a problem with that, that was their
problem, not hers. "Yes, I heard about the rescue, and I was
so thankful Mary Harrison was there to give CPR. This is changing
the subject a little, but I wanted to answer your question about what I
do with my 'free time.' You must have forgotten why I had to cut
back from full-time to part-time work, Sheila. I have a muscular
disease, and I have to maintain a different schedule now than I used to."
"Oh, that's right.
You told me about that last year. So, how are you doing?"
"Today is a little difficult
since I am shopping, but it makes it easier when the bag boys load my van."
"That's good. Well, I've got to run, Patience.
I just got my nails done, and if I don't get my errands finished before
five, I'll be late picking up the boys from ball practice. Bye!"
Patience did not allow other people's boundless
energy to depress her because she knew better than to compare herself to
Mary Harrison. Patience is NOT Mary, she is Patience. Accordingly,
she lives and acts like Patience, and she does not make excuses for not
being Mary.
Patience graciously listened to the request to serve
the booster club. She will deal with the issue at the appropriate
time and with the appropriate person. She had an opportunity to remind
Sheila that Sheila was inappropriately forming expectations of her based
upon the lifestyle Patience led prior to becoming affected with fibromyalgia.
Patience handled the encounter well, and I'm sure you personally can think
of additional ways Patience could have successfully handled the challenges
she met during her day.
What If Your Disease Is Limiting Your Performance on the Job?
It is not a good idea to try to hold down an 8-hour-a-day job when your mind and body collapse after four hours. If you can no longer fulfill some or all of your work requirements, I suggest trying the following plan.
How
much would I pay:
to have less physical pain today? ________
to have more energy today? ________
to have less frustration today? ________
to be in better spirits today? ________
If you are asking yourself
these questions on a "bad day," you'll no doubt be willing to pay a great
deal. Hundreds, maybe thousands. All right, then apply that
to your budget and see what is eating up those dollars you would have willingly
spent on your health. Are you making $600 car payments when you could
trade down to a more affordable car and have payments of only $350?
Are you making $1,000 house payments when you could scale down to a more
affordable house and have payments of only $600? Do you pay $50 a
month to get the poodle clipped? Another $50 a month on your manicure?
Do you have a boat or other luxury item that is eating up dollars in loan
payments, taxes, insurance, and upkeep? Do you spend enough at restaurants
each week to feed a family of six for a month? Do you max out your
credit card when Christmas comes? Do you have a closet crammed full
of clothes and shoes, yet you are frequently buying something new to wear?
Okay, okay, enough already.
I'll stop with the budget inquisition since you've long since gotten the
point. In closing, I'll leave you with a brilliant definition I once
read:
If you want your health and your quality of life to improve, you've got to live your life differently.
The Social Security Administration, Fibromyalgia, and Disability
I am not an authority on the Social Security Administration
(SSA) and legal matters. I will tell you what I have seen, and you
can take it for what it is worth to you.
Some people with fibromyalgia are affected to the
point they can no longer hold down a job. Your doctor must declare
you are no longer capable of working for you to have a chance of qualifying
as disabled under the SSA. As soon as your doctor determines you
are no longer capable of working, and after you have quit working, contact
the SSA to request the necessary forms to file for disability.
The SSA has rules about the length of your employment
history in addition to rules about your medical history, and you will need
to read their regulations to see if you meet both sets of rules.
You will have to provide extensive medical evidence
that you are indeed disabled. Because fibromyalgia is not heavily
researched and little is known about the disease, you will encounter problems
with the SSA because they cannot easily understand and identify your disease
as being one that causes disability.
You will most likely be turned down flat the first
time through the SSA process. You will need to immediately request
a reconsideration of your case. You may well be turned down flat
the second time too. Again request a reconsideration, which will
get you a hearing before a SSA judge.
I recommend getting a respected, successful, experienced
disability lawyer before entering that third phase. The law determines
what fee the lawyer can charge for handling your disability case, and you
should request a pamphlet from the SSA that explains the lawyer's fee restrictions.
The fee is paid from the back pay you will be owed if your case goes before
the SSA judge and is approved.
It can take many, many months to go through the
SSA process and reach a hearing before a SSA judge. I have heard
of it taking more than a year for some people.
You can expect the SSA to require you to have an
appointment with a psychiatrist (at the SSA's expense). No, I have
no idea why this is a requirement, and if the SSA would like to explain,
I'd be happy to listen.
If and when the SSA approves your case, you will
be probably be owed back pay. There is a six-month waiting period
from the official date your disability began until you are eligible for
benefits, so back pay will only accumulate after the six-month waiting
period. After the back pay issue is settled, you will receive regular
monthly disability checks from the SSA.
You will have to periodically confirm you are still
disabled. The SSA will require additional paperwork and hearings
to prove you are entitled to ongoing disability benefits.
Yes, people with fibromyalgia have successfully
proven before the SSA that they are disabled and are entitled to disability
benefits. It takes a lot of effort and it is frustrating to go through
the process, but it can be done.
To get official details of how the Social Security
Administration handles disability claims, you can call them at 1-800-772-1213
or visit their web site: www.ssa.gov
On the SSA web site, the first page has a link for
disability benefits. You should be able to find just about anything
you want to know there.
I also recommend reading the article "Tectonic Changes
in Disability Law" in the July 1999 issue of the Fibromyalgia
Network newsletter. Here are a few important quotes:
"On the last day of April, 1999, the SSA issued new regulations" dealing
with chronic fatigue (CFS) and fibromyalgia (FMS) which announce that both
are "medically determinable conditions... As a matter of regulation
within the SSA, CFS and FMS exist as a disease process. As such,
these conditions can result in a finding of disability." The article
goes on to stress the importance of your medical records containing detailed
descriptions of your medical condition. "A patient's chart will be
considered incomplete if it merely recites the diagnosis and the medications
prescribed. Not only must the chart demonstrate that the patient
meets the American College of Rheumatology criteria for FMS..., but more
importantly, what are the symptoms and complaints associated with that
diagnosis? The diagnosis by itself is not the equivalent of
disability and will never support a doctor's comment that the individual
is or is not disabled.... Take the steps necessary to ensure that
your and your health care team are complying with the documentation requirements...."
I wish I could fulfill your
hopes and print a list of medications that will greatly relieve your symptoms
or cure you. Unfortunately, such drugs do not presently exist.
There are medications that physicians prescribe to alleviate pain, but
fibromyalgia does not respond well to pain medications. I have personally
taken pain medicines that are useful for people who have had surgery, yet
left me wondering if I'd taken a placebo. I could have swallowed
an M&M candy for all the good the pill did me.
In a fibromyalgia support
group meeting of over 30 people, I got a laugh from the crowd when I asked
if anyone had taken a pain medication that actually worked.
I don't mean to be all doom
and gloom. You may be lucky and find a medication that does more
than take the edge off your pain. You may also benefit from an antidepressant,
many types of which are often prescribed to help combat fibromyalgia.
(No, the doctors aren't prescribing antidepressants because they think
you are mentally ill. Antidepressants truly are to help your body
create needed brain chemicals such as serotonin.) There are also
prescription medications to help you manage your sleep cycle.
For specifics on the types
of medications that may be useful for fibromyalgia, speak to your physician
or consult The Fibromyalgia Network
for publications they offer on current research and medications.
When trying a prescription medication for the first
time, you may not want to purchase the entire bottle of pills. You
may turn out to be allergic to the drug or cannot handle the side effects,
and you would have paid a lot of money for something you cannot use.
Instead, tell the pharmacist you only want a two or three days' supply
initially. Better yet, ask the doctor for a free sample.
Be certain to talk to your
doctor about the possible side effects of anything that is prescribed.
No medication affects all people in the same way, and a medication that
works wonderfully for me may produce terrible side effects in you.
The drug Ambien is an example. I personally had great success taking
Ambien to manage my sleep cycle, but I know of a woman who said she had
frightening nightmares when she took the drug. Her body did not handle
the drug well, and mine did. The only way to know was to try it and
see.
In particular, I would like
to caution you about antidepressants. They can be beneficial to many
patients, but they have the potential to alter the balance of brain
chemicals in detrimental ways and "make you crazy." If you begin
taking an antidepressant and then notice your emotions are in turmoil or
your behavior is unnatural (you are yelling at your family members for
no reason, for example), STOP the medication immediately and consult your
physician.
You will want to read the
section of this web site dealing with scams that promise cures and relief
from symptoms. Click here to go to "Myths."
Myth: Fibromyalgia is not a real
disease. It is all in your head, and you are a hypochondriac.
Truth: Fibromyalgia has a medical basis.
Something in your body, possibly chemically, has gone haywire, and you
are suffering from the symptoms of a disease.
Myth: You did something
to bring this disease upon yourself.
Truth: Fibromyalgia is not a dog bite.
You did not beat a vicious dog in the head with an iron pipe until it bit
your arm off and caused fibromyalgia. You didn't eat anything to
get the disease, didn't drink anything, or mail order anything that arrived
in a package marked "Horrible Disease Enclosed." Medical science
has yet to discover why the body goes haywire and manifests the symptoms
of fibromyalgia, but one thing is certain: YOU DID NOT do anything
to bring it upon yourself.
Myth: The disease does not progress
or worsen.
Truth: Nobody goes to sleep one night
a perfectly healthy person and wakes up the next morning with fibromyalgia.
The disease can begin with small, annoying symptoms and grow in effect
until you are suffering daily with significant pain and fatigue.
The disease is often a roller coaster, being mild for a time, then plunging
down into a bad period before easing up. Some patients are
able to trace the onset of their disease to a traumatic physical event
such as an auto accident. Instead of completely recovering from their
injuries, the accident victims linger in pain that was not experienced
prior to the accident. However, for the majority of patients, fibromyalgia
symptoms are something that grew silently until they became so painful
and debilitating that the patient knew something serious was wrong with
her health.
Myth: Fibromyalgia does not cause disability.
Truth: Some people may never have symptoms
so debilitating as to require a major change in work, hobbies, or other
personal commitments. However, many fibromyalgia patients do eventually
reach that point. If the disease worsens, your body suffers, and
it will be time to slow down and take steps to manage your disease differently.
Some patients are affected to the point they can
no longer hold a job or do many other things they used to (such as play
sports, carry the four-year-old daughter, climb the ladder and clean the
guttering, drive a stick shift, drag the sofa from one side of the living
room to the other, lift the 20-pound turkey from the oven, push the grocery
cart, etc.). The Social Security Administration has approved numerous
disability cases where the patients were suffering from fibromyalgia.
Myth: You can buy a nutritional
supplement that will greatly improve your symptoms or cure fibromyalgia.
Truth: I recommend reading the Consumer
Reports on Health article "Uprooting
Herbal Myths." You will find a wealth of information such as:
"Myth: Herbs are natural, so they must be safe and effective.
Truth: 'Natural' is hardly synonymous with 'safe' -- just think of
hemlock or poisonous mushrooms. ...Probably all herbs have the potential
to cause allergic reactions, and many herbs can produce side effects...
Moreover, certain herbs can harm people with certain diseases, or interact
dangerously with conventional drugs. ...'Natural' is not synonymous
with 'effective' either." The article goes on to state that the herbal
industry is largely unregulated, and that often dangerous claims and beliefs
surround herbal products -- claims and beliefs which glorify herbs, overstate
their benefits, and obscure their possible risks. (Also of interest
is the Consumer Reports magazine article "Herbal Rx, the Promises
and Pitfalls" from the March 1999 issue.)
Moving to another source, I will now quote the fibromyalgia
Report #76 from Nidus Information
Services: "No scientific evidence exists that vitamin and mineral
supplements will relieve fibromyalgia...megadoses of vitamins can be toxic.
It is extremely important for patients to realize that herbal medicine
has as many potential side effects and toxic reactions as standard drug
therapy, and the dangers increase because no standards exist for safe or
effective dosages. [The text goes on to list specific supplements
that caused seizures and deaths.] ...Everyone is strongly advised
to consult a physician before using any untested products. The Food
and Drug Administration now has a program called MEDWATCH for people to
report adverse reactions to nontested substances, such as herbal remedies
and vitamins (call 800-332-1088)."
How do I personally view claims that a nutritional
supplement will greatly improve fibromyalgia symptoms or cure the disease?
Every day brings a new marketing ploy to convince somebody suffering from
some ailment that the cure is only $29.95 away. I have met people
selling many varieties of nutritional supplements, and without exception,
none of the products have proven, medical evidence that they lessen the
symptoms of fibromyalgia. I know, I know, the person selling the
product will claim there is medical evidence given in sworn testimony by
a dozen leading scientists. The salesperson will produce pamphlets
where long-time users swear on their mothers' graves that the product cured
them of their disease, brought about a Middle East peace settlement, and
caused a lunar eclipse all in the same day. You may detect a note
of sarcasm in my tone, and you'd be right. I am disgusted by marketers
preying on patients who are in pain and are desperate for relief.
There is no nutritional product that is proven to lessen the symptoms
of fibromyalgia, period.
To those people who buy such products and are convinced
the products are helping their symptoms, I caution them not to stand
up at their local fibromyalgia support group meeting and give a glowing
testimonial of how the product is God's gift to fibromyalgia patients.
There are people who are desperate enough to fork over the cash for any
glimmer of hope, and I doubt those pushing the products will wish to face
the desperate folks when the expected miraculous healing does not take
place.
Beware of those pushing the products when they attempt
to cover their butts by saying, "This product may not work as good for
you as it did for me, but for only $29.95, isn't it worth trying?
After all, it can't hurt you, and you'd only be out $29.95 if it doesn't
help you." If that logic were true, we could sell people goldfish
food. It won't hurt them, and for only $29.95, isn't it worth trying?
Gosh, I'm probably going out on a limb here, but I'd guess it won't bring
about a cure. Not even if we put it in a pretty package and call
it "Doctor Fish's Gold Science Total Energy Fitness Supplement with Zinc."
Some people are comforted by spending money and
swallowing a pill. It makes them feel as if they have taken an important
step towards feeling better. These are the type of people who will keep
the marketers in business, and I suppose the two will find each other as
long as the former have a dime left to spend and the latter have anything
in a box with a price tag.
And while we are on the subject, magnets, crystals,
and prehistoric swamp water do not cure fibromyalgia. Should you
encounter people selling this nonsense (yes, such marketers are out there),
run the other way.
Knowing your personal limitations and respecting those limits are vital to your quality of life. Don't cling to the good old days of your healthy past when you were "faster than a speeding bullet and could leap tall buildings in a single bound." The past is the past, and you are living in the present. What you can realistically do in the present is what matters, and that is where I encourage you to focus.
A core set of traits you need to cultivate: Some people are better able to deal with the challenges a disease like fibromyalgia brings. Traits that can be beneficial include: 1) the ability to honestly evaluate your present capabilities; 2) the wisdom to make life changes to realign your commitments with your present capabilities; 3) the creativity and determination to seek out new and different ways to solve problems; 4) the resolution to preserve your physical, mental, and emotional health at all costs; 5) the strength to establish new parameters in your relationships so that you are not trodden under the feet of other people's expectations; 6) the courage to believe that life with a disability can be full and exciting though it is different than the life you would have led if you were perfectly healthy.
Budget
your energy and institute personal responsibility in your household:
Imagine your daily available energy level is like gasoline. You
have a limited number of gallons in your tank, and once you've spent it,
it cannot be recovered. This means you have decisions to make.
Is it more important for you to use a gallon to mow the lawn, or should
you budget that gallon to play with your children after school? Or
maybe you need it to cook supper. Or scrub the bathroom. Or
go shopping. But one thing is certain: that one gallon of energy
will not accomplish ALL of the above. You will have to decide where
to spend it.
You may wish to argue the point. "But ALL
those tasks are important," you may say, "and all my adult life I've been
responsible to do each and every one of them. Just because I have
fibromyalgia didn't make the lawn stop growing nor make supper cook itself.
I still have to do the work." Really? Where are you going to
get the energy? Do you think that simply because the lawn needs mowing
that somehow the energy will suddenly appear and fill up your empty tank?
Not so. Regardless if your lawn is the size of Texas and it is ten
feet tall in grass and weeds, if you don't have the energy, you just don't.
One solution is to be creative. Figure out
a way to accomplish tasks with new methods. Maybe you could assign
the lawn mowing to your teenager or husband. Hire the neighbor kid.
Cement the back yard so you don't have grass to mow.
Is your ten-year-old whining that he wants a snack?
Show him how to spread peanut butter and jelly on a piece of bread and
empower him to feed himself. Is your teenager griping that you didn't
wash his favorite shirt? Introduce him to the washing machine.
What about cleaning house, you ask?
Establish rules to promote personal responsibility and have your family
members start cleaning up after themselves. Rule suggestions:
If you open something, shut it. If you use it, put it back.
If it's not yours, don't touch it without permission. Keep your personal
items (shoes, clothes, books, etc.) in your room. Wipe your feet
when you come in the house. Put dirty dishes in the dishwasher and
wipe down the countertops. Wipe the bathroom sink and put your towels
in the hamper. Fold your own clothes when they come out of the dryer.
Put toilet paper on the empty roller.
Use the above list of rules as your starting point
and develop your own Household Commandments that will be obeyed henceforth
forevermore under pain of death. Whose death? Yours (death
by exhaustion), if you don't take a stand to enforce the rules and get
some help with the daily, general upkeep of the house.
Deep cleaning the house: You may need to take a serious look at hiring someone to deep clean your house (for help with daily, general upkeep of the house, read the preceding paragraphs). Where I live, $30-35 a week will pay for someone to vacuum, mop, dust, and clean the kitchen and bathrooms (in a 1,400 square foot house). I had always thought hiring a maid was something that only rich people did. Then fibromyalgia got me down in a headlock, and I realized the only way my house was going to get clean again was if I did the unthinkable -- hire help on a weekly basis. This move saved my sanity. And I can tell you, $30 a week is a cheap way to buy sanity.
Cooking: Figure out a way to
prepare meals without spending excessive energy in the process. Instead
of making spaghetti sauce from scratch, use a jar from the store.
Use frozen cookie dough, box cake mixes, and instant Jell-O. Cook
one-pan meals in the crock pot.
Avoid using heavy pans which are hard to lift.
This goes for heavy dishes too. If your set is stoneware, switch
to Corelle or something lighter. For your own drinking glass, consider
using a plastic one (it is lighter and will save wear and tear on your
wrist).
Wipe up spills quickly so that you won't strain
your wrists later trying to scrub dried egg off the countertop.
Grocery shopping: If you have
reliable help (an older child, a spouse, a friend), the chore of grocery
shopping just got easier. An able-bodied person can help load and
unload the cart, push the cart, and carry the groceries in the house when
you get them home.
When fibromyalgia made a serious dent in my energy
level and physical abilities, I decided I would not injure myself by attempting
to grocery shop alone. For trips that require the purchase of more
than a loaf of bread and pound of mushrooms, I take my husband with me.
He does the heavy work and I make the purchasing decisions ("Honey, please
get that container of juice -- no, the other one with the blue label.
We need two."). When I need to shop and my husband is not around,
I limit my list to the bare necessities that I can personally carry without
injuring myself. However, I usually try to carry more than I ought,
and I end up in pain. So I have found it is far better to wait for
my husband than to shop alone.
If you are a person without reliable help, you need
to get some. No kidding. Find someone. Now. Organize
your grocery shopping trip so that you only go to one store (instead of
running all over town to buy the "advertised specials"). Have your
list made so that you know exactly what you are going after. Buy
enough essentials (bread, toilet paper, etc.) so that you will not run
short before the next scheduled shopping trip. If you run short of
something between scheduled trips, shop for it alone as long as you are
able to carry it by yourself. For example, if you run out of dog
food, don't buy a 20-pound sack. Buy the five-pound sack that will
last until you can shop with your helper.
If you cannot or will not find a helper, you must
organize your shopping list so that you are not overloading your grocery
cart (making it hard to push and giving you too many things to load and
unload). It is better to buy a five-pound sack of dog food twice
a week than to buy a 20-pound sack every other week. You may have
to shop more often, but at least you aren't straining your muscles by carrying
a ton of groceries in one trip.
If your city has several grocery stores to choose
from, pick the one(s) that will cheerfully help you load difficult items
into your cart and which will push your cart to your car and unload the
sacks into the trunk. No matter if you have to pay a little more
to shop there, the service is worth the price.
It has been my experience that the grocery store
chain Food Lion has a unique style of shopping cart. The basket is
high in the air as opposed to low and deep. This enables people who
cannot bend nor lift to more easily get things in and out of the cart.
You should look at the carts in your area stores and see if one style is
better for you than another.
Schedules: Since early mornings
are notoriously bad times for people with fibromyalgia, do not schedule
things that require you to be active then. If you have learned from
experience your body does not loosen up until 10 a.m. (your personal time
may vary), respect your body's schedule and allow it to take the time it
needs to relax the muscles and get moving decently. Go ahead and
take your shower, dress, and eat breakfast, but don't plan any major commitments
prior to 10. The shopping and other appointments can wait till later.
People with fibromyalgia sometimes find they become
forgetful. This is especially true if they are on medication to help
them sleep. Since forgetfulness can be a problem, I suggest you keep
a calendar handy and write down any appointments and other commitments.
Consult your calendar daily and plan ahead for events.
This advice extends to making lists, such as a grocery
list, to help you stay organized. If you are going out to run errands
for the afternoon, make a list of where you are going and why so that you
don't forget to drop into the post office and buy stamps on your way to
get the oil changed in the car.
Lungs and ears: Many people
with fibromyalgia suffer from allergies, asthma, and increased sensitivity
levels which may mean loud noises are painful to the ears. Any time
you are in a crowd (a restaurant, the mall, church, a party), you will
be breathing air that is potentially polluted with perfume, after shave,
hair spray, cigarette smoke, and other powerful scents that come from other
people. These scents can trigger your allergies or cause an asthma
attack. Also, some crowd situations are prone to be loud (the movie
theater and some restaurants, for example, where the music may be cranked
so high it cracks the plaster walls along with your eardrums). By
being aware of these potential crowd problems, you can make decisions ahead
of time to safeguard your health.
You may choose to eat at restaurant "A" over "B"
based on the noise level. You may wish to sit in the uncrowded balcony
at church rather than in the perfumed congregation below. You may
plan to shop at the mall at a time when it isn't crowded.
On a similar note, you need to think about the physical
environment you create at home and the environment in the households of
the people you visit. Do you always come back from Cousin Jean's
house with a headache that has nothing to do with the company you were
in? Could it be that Jean's house was contaminated with aerosol air
freshener, chemicals from the carpet cleaning, or even dog hair?
There may be something in that house that is triggering the headaches.
What about your own home? Your mission is to identify and eliminate
things that are detrimental to your health.
Hands, arms, and shoulders:
Avoid tasks which require you to repeatedly reach up. When your arms
are upraised (such as when putting away the plates in the kitchen cupboard),
your shoulders are strained and must work hard to support your arms.
Tasks that require you to pull or push (mopping, raking, scrubbing) are
equally tough on your muscles. Pay attention to what you do with
your hands during the day, and see what tasks can be delegated, deleted,
or redesigned.
Walking a dog can be a difficult matter because
many dogs enjoy running to the end of their leashes and pulling you the
direction they want to go, or they may dig in their feet and refuse to
go where you are pulling them. This behavior is straining the wrist
and shoulder of the person holding the other end of the leash. I
suggest assigning the walking of the dog to someone else, or training your
dog to "heel" so that it does not pull the leash and jerk your wrist.
Some people with fibromyalgia have episodes when
their wrists and hands do not work properly. Dropping things all
day long is annoying, to say the least. You may benefit from a wrist
brace during those episodes (or whenever you use a keyboard). The
brace I have came from a neurologist's office and wraps around my wrist
and forearm. It is very stiff and attaches with velcro. I value
my brace highly because it gave my aching wrist the support it needed to
lessen the pain. The braces I had previously bought from Kmart were
not designed as well, and I was thankful when I obtained the better one
from the neurologist.
Repetition and sedate: Tasks which require repetitive motion (your body does the same motions over and over, like when you are pushing the vacuum cleaner or painting a wall) are bad for your muscles. Equally bad is when you remain in the same position for an extended period of time (sitting in a chair for two hours, for example). Avoid both extremes. Take breaks often to give your muscles both rest and a change of position. If you have been sitting for an hour, get up for ten minutes. If you have been standing, sit down. If you are painting the wall, take breaks every half hour. Don't try to vacuum the whole house at once. Break repetitive motion chores into smaller pieces so that you do not overtax your muscles.
Purses and backpacks:
The goal is to travel light. Do not carry anything on your back,
and do not sling heavy items over your shoulder. If possible, scale
down to a "fanny pack" style of purse you can wear around your waist.
It is small yet can hold essentials like keys, your driver's license, and
cash.
If you are accustom to carrying
a thirty-pound purse, you will have to make up your mind that you are not
a walking snack machine/medic station/toy store. Keep a bag in the
car with the ten thousand items you feel it is vital to have at hand, and
if you need something out of it while you are away from home, it will be
as close as the parking lot.
Telephones: Buy a phone with a "speaker" feature so that when your wrists ache, you can talk without holding the receiver in your hand.
Shoes: Wear flat heeled shoes that do not have cramped, pointy toes. Keep your feet as comfortable as possible with good arch support. Avoid shoes that are open in the back or have low sides. They do not offer firm support to your feet and ankles.
Clothing: Avoid dresses, shirts,
and vests which tie in the back. The knot will press into your spine
when you sit down, and it can be painful.
The literal weight of your clothing matters.
Shop for a winter coat that is warm but is not bulky and heavy. Consider
the style as well. A coat which comes down to the calves might look
snugly warm, but it can be a hindrance trying to climb in and out of cars.
If your winter coat has a hood, I recommend detaching it and wearing a
hat or scarf instead. The hood, when hanging down your back, can
be heavy and pull at your shoulders.
Lands' End company (1-800-356-4444, USA) has winter
knit pants and tops in their catalog. The tightly woven cotton fabric
is called "winterlochen." It is difficult to find warm, cotton pants
in stores, and the winterlochen pants I purchased from Lands' End are the
main thing that keep me from freezing in winter. I recommend their
silk long johns as well. I have found the silk and cotton long johns
from Kmart, WalMart, Sears, J.C. Penney, Dillard's, and Belk are designed
for people under 5'5", and taller people need look elsewhere for long johns
that fit.
Chairs and sofas: Sit in
chairs and sofas that give firm support. Avoid seats where you sink
when you sit down, and where you are leaning back instead of sitting upright.
Buy a back rest that is designed for lumbar support. Back rests can
be found at many office supply stores like Office Max, and in the automotive
section at Kmart or WalMart. You can find ones that work well and
are priced inexpensively. Buy one for your chair at home where you
take your meals, and keep another in the car so you can use it when you
are at a restaurant or a movie theater. If you work outside the home
in a desk job, have a back rest for there too.
If you spend a lot of time in a chair at work, do
not assume you must use the chair that was provided. If it does not
give you good support, ask for a different style of chair. Go to
your local office supply store and sit in each of the types of chairs on
display. Discover which type enables you to sit comfortably, and
either request that type from your supervisor or buy the chair yourself
and bring it to work. After all, wouldn't you pay $150 for a chair
if you knew it would decrease your pain seven hours a day, five days a
week for the next year?
Beds: Just as with chairs and
sofas, you want a bed that gives firm support. If you sink when you
lie down, your muscles will have to work harder to climb off the cushy,
unstable surface. I recommend that you avoid all types of waterbeds.
The rails you must climb over to get in and out are as detrimental as the
unstable surface. Even "waveless" mattresses are unhealthy.
I know. I had one. Selling that waterbed and buying a firm
mattress was a blessing.
Shop for a pillow that provides good support to
your neck and head. I suggest one that is horseshoe shaped
and filled with something other than styrofoam or air. Ignore marketing
ploys for pillows filled with "special" beans or which claim to be manufactured
according to some "secret" Asian design.
Porch
swings and lawn chairs: Outdoor furniture tends to be designed
with slanted or scooped seats. When you sit, you find yourself slouching
in a hole. Using your back rest for lumbar support can help, but
you may still be uncomfortable or in pain from sitting in these poorly
designed seats. Shop for a lawn chair and porch swing that are upright
and offer good back support.
Stores that may sell better lawn chairs are:
camping supply stores, sports stores, pool and spa stores, and even the
showrooms of dealerships that sell motor homes and travel trailers.
Cars: Adjust your seat so that
you are sitting upright. Use a back rest for lumbar support if your
car seat is inadequate.
I suggest you do not drive with your hands on the
steering wheel at the "ten and two o'clock" positions (at the top).
Instead, try holding the wheel at the "eight and four o'clock" positions
(at the bottom). The reason for this is because when your arms raise,
your shoulder muscles are straining to keep them up. By driving with
your hands in the lower position, your shoulders do not have to work as
hard to accomplish the same task of driving the car.
Because those with fibromyalgia need to change positions
often, do not attempt to ride in a car for more than an hour at a time.
Even if you stop every hour for ten minutes to get out and walk around,
you will probably ache if your trip is more than a few hours long.
Do not lightly consent to a long car ride since it will most likely cause
pain.
Airplanes: Long trips are
best accomplished in the shortest amount of time possible. I recommend
airplanes over cars, but there are drawbacks to air travel as well.
The seats are cramped unless you are sitting in
first class. Since most people don't have the cash to fly first class,
you can expect to be cramped when you take an airplane trip.
Don't sit in the "emergency exit" row. People
with muscular diseases don't belong there.
Limit your carry-on luggage to something light.
Struggling with baggage on and off the plane, not to mention trying to
lift it in the overhead bins or trying to cram it under the seat in front
of you, is a sure way to strain your muscles and cause pain.
Buy luggage with wheels so that you can pull your
luggage instead of carry it. Many luggage sets may look pretty, but
their wheels may be tiny or poorly constructed. Buy luggage based
on solid wheel construction above all else. Secondly, make certain
the handles are long enough you can pull the luggage while standing upright.
Some have short handles that require you to be under five feet tall to
pull them without stooping. You can create a handle extension if
you can't find luggage with long enough handles (I added a wide strap from
a camera to my pilot case, and it works well).
When the luggage carousel is going round and round
at the airport and you are straining to drag a big, heavy bag off the conveyer
before it can get away, you will be sorry. If you must handle your
luggage yourself, use several smaller pieces instead of one big piece.
Smaller cases also prevent you from cramming a ton of stuff in them as
you might be tempted to do with a big case. Travel light.
Don't be shy. Sit in the "handicapped" seats
at the terminal and have the courtesy carts (golf carts driven by airport
attendants) chauffeur you from gate to gate or to the luggage carousels.
If necessary, request a wheelchair.
Restaurants: Booths are
usually bad because they do not allow you to scoot your seat closer to
the table where you need it, and many are angled back so that you must
strain to sit upright. Pick a table and chair over a booth.
Remember to bring your back rest so you will have good lumbar support.
Pick a table away from the path of air conditioning
ducts and ceiling fans. Sitting in a draft can cause your muscles
to tense, leading to pain.
Ask for your beverage to be served in a plastic
glass or a styrofoam "to go" cup instead of the heavy glasses that are
often used in restaurants.
Movie theaters: Movies last about two hours. The theater seats generally don't give good support and are uncomfortable. You will miss some of the movie if you walk around in the lobby to relieve your cramped muscles. Before going to the theater, consider watching a movie at home on the VCR. You can stop the tape when you want to, and you can sit in your favorite chair in the comfort of your own home. The price of popcorn is cheaper at home too.
Dentist offices: Trips to the
dentist office are unique because it is one of the few places you go where
you are required to lie down. The angle of the chair and the lack
of lumbar support can be painful. I suggest taking a couple of bath
towels and experimenting how you can fold one or more to fit them behind
your lower back. Take your bed pillow as well (the horseshoe shaped
one) to support your neck.
Be sure to explain to the dentist that you have
a muscular disease that causes back and neck pain. Do not allow the
technician to seat you in the chair and leave you there to wait your turn.
Stay in the waiting room until it is actually time to work on your teeth.
You should not be left sitting in the dentist chair a moment longer than
is necessary.
Exercise:
If you have read much about fibromyalgia or have talked to a doctor, you
may have heard that you should exercise regularly to keep your muscles
in shape. New research is saying that in people with fibromyalgia,
the muscles have "mini tears" that do not heal well and which are caused
by mild levels of exercise that would not injure a healthy person.
This research goes on to say that exercise will actually worsen the symptoms
of fibromyalgia because the more you exercise, the more "mini tears" appear
in the muscles.
You will have to decide for
yourself how your body reacts to exercise. And you will have to redefine
the word "exercise." To a healthy person, "exercise" means step aerobics,
lifting weights, jogging, and other strenuous activities. To a person
with a muscular disease like fibromyalgia, "exercise" may mean taking a
brisk walk or doing some light stretching.
Some people (I mean healthy
people, not just those with a disease) do exercises in a swimming pool.
This is helpful because the water buoyancy helps hold up the body while
you exercise. But those with fibromyalgia have an aversion to cold
water, and unless the pool was heated to 98 degrees or higher, they probably
will ache if put in a swimming pool. You will have to identify how
your own body reacts to different water temperatures to decide whether
water aerobics are for you.
Hot
tubs, heating pads, and ice packs: Muscle injuries can be soothed
by applying heat, ice, or a cycle of both. You need to experiment
to see which works best for you. Since the neck and shoulders are
a common spot that aches, try resting on a heating pad and see if it brings
relief. Alternately, try resting on an ice pack (flat ones are available
in stores). Some people will prefer heat over cold, or vice versa,
and some people like both.
My physician was adamant that
I needed a hot tub at home so that I could have heat therapy daily.
I resisted his advice for a long time based on the cost, but finally I
gave in and bought one. I am glad I did. When I am aching horribly,
a session in the tub at 99 or 100 degrees feels great.
If you are considering buying
a hot tub, be aware that not all tubs are created equal. The seats
in some are curved so that your backside sits in a hole and you slouch
when you sit, and the "lounge" seats are difficult to climb in and out
of if you have a muscular disease. Also, many tubs are shallow
so that when you are seated, the water only comes to your shoulder blades.
Since my neck is a major sore point, I wanted the water to touch my entire
neck. I shopped all the area stores until I found a hot tub that
would submerse me to my earlobes when I was seated.
Beware of salespeople who
assure you their tub is for physical therapy and that many people with
medical needs have bought it. You be the judge of whether
or not a particular tub has comfortable seats and is deep enough for your
needs. Don't let the salespeople convince you their shallow tub is
perfect because you can lie down on the lounge seat. I caution you
to try the lounge seats for yourself and see if you don't have to twist
and strain to get in and out of them.
Once you have a tub, keep
the jets on low or turn off the one to the seat you will use. Water
pounding on your muscles will most likely cause pain instead of relief.
The heat of the water is what will soothe you, not the jets.
You may wonder why a hot tub
is preferable to a bathtub since the jets are not helpful. A hot
tub is deep, and you can sit upright and have water rise to your earlobes.
In a bathtub, you would have to slouch or lie down to get water to your
ears. Also, a hot tub has heating elements to keep the water at the
temperature you specify. Bathtubs do not hold heat, and the water
will quickly grow cool.
Massage: Massage is beneficial to your muscles and can reduce pain on a temporary basis. Professional massage therapy is expensive, and most of us do not have the funds to purchase the daily massages we would request if they were "free." As often as possible, have a friend or family member massage your neck and shoulders. If you have a willing helper, show him/her a massage video tape from the local library so the helper can learn how to do massage more effectively. Depending how intimate you are with your helper, you may ask for a more complete body massage.
Chiropractors:
Chiropractic care can, in some instances, lessen a fibromyalgia patient's
pain symptoms on a temporary basis. However, I believe the chances
of relieving pain to any great extent are low, the duration of relief is
very limited (from a few hours to a few days), and the cost involved is
prohibitive. Chiropractic care is a literally "hands-on," and this
means each chiropractor has his own way of pushing and pulling the patient's
limbs and back. A patient who finds some temporary relief from pain
at chiropractor "A" may find no relief at all, or may even encounter pain,
at chiropractor "B." I know from experience because I tried several
chiropractors to see if chiropractic care could help reduce fibromyalgia
pain.
Regardless of what they may
claim, chiropractors cannot cure fibromyalgia, asthma, or allergies.
Some chiropractors have specialized "equipment" such as a pulsating water
bed/cushion. You may be asked to try the equipment during your office
visit, and you will probably be charged extra for its use.
This equipment has no medical value, and I suggest you avoid it.
Additionally, the chiropractor's
office may try to sell you special creams to relax muscles and relieve
pain. The active ingredient in most of these creams is menthol.
Menthol creates the sensation of heat on the area you apply it to, and
the sensation of heat serves to interfere with the signals of pain going
to your brain. The ability of menthol to block pain signals is very
limited. You can purchase over-the-counter medications at WalMart
such as Icy Hot which contain menthol and will do the same job as the more
expensive creams at the chiropractors'. In fact, I read the label
of the cream a chiropractor was offering, and the percentage of menthol
was less than I could have gotten from any tube of cream at WalMart --
yet cost twice as much WalMart's medicines.
Physical therapy: Licensed physical therapists are trained to help people modify or regain use of their muscles. For people who are stroke victims or have been in auto accidents, physical therapy can be of great value. In my experience, physical therapy has very limited value to fibromyalgia patients. The only significant thing I gained from my therapy sessions was the use of a device that measured muscle stress on my neck and shoulders. After two sessions of listening to the monitor that screeched whenever my neck muscles were tensed, I learned where to hold my head to keep it well centered on my neck and alleviate unnecessary muscle strain. It's too bad I couldn't have paid for just those two fifteen-minute sessions and avoided the rest of the office visits that drained my pocketbook without providing much of a benefit.
Your general health: Keeping your body as healthy as possible involves little more than common sense. Don't smoke or use illegal drugs. Drink alcohol in moderation. Keep your muscles and cardiovascular system in good condition with whatever forms of exercise you can tolerate. Your muscles and your heart will suffer from excessive body weight, so maintain a reasonable weight for your height, body type, and sex. Use the government's guidelines on eating a balanced, nutritional diet. Take an inexpensive multivitamin if you wish (even Flinstones will work), but avoid the hype surrounding nutritional supplements and herbal remedies. (For more information on the hype surrounding nutritional supplements, jump to "Myths.")
Stay warm: Some
people with fibromyalgia have extreme sensitivity to cold. Regardless
if a healthy person would say the room temperature is comfortable, a person
with fibromyalgia may be aching horribly and need to crank up the heater
or turn down the air conditioner. If you have noticed that you physically
feel better when you are warm, by all means, dress warmly and put the thermostat
on a setting you can live with.
There is a difference between
merely bundling yourself up and in raising the air temperature around you.
Though dressing warmly can help, experiment and see if you don't feel better
yet when your whole environment is warm.
You may find that your body
cannot tolerate forced air, particularly cold air, blowing on you.
Sitting in the path of a fan or air conditioning duct may cause your muscles
to tense, leading to pain. Avoid drafts when possible.
Bathe in warm/hot water, and
avoid swimming pools that are cold (most of them are).
I
can't get out of the house or maybe even the bed: This happens
to many of us on certain "bad" days. If you experience a time when
you hurt so much and are so fatigued that you are unable to get out of
bed or leave the house, do not panic. This is not a permanent condition.
Respect your body's need to rest, and take whatever measures you have at
hand to alleviate your pain (medicine, heating pad, ice pack, hot tub,
etc.).
If you live alone, you will
want to contact someone on days when your health reaches this low point.
A friend or relative needs to check on you a few times a day, by phone
or in person, to make certain you are not in need of assistance.
Concentrate on what you are
able to do instead of what you aren't. I remember a particularly
bad day when I was trapped in bed, staring at the ceiling in considerable
pain, my aching arms propped with pillows, nearly unable to move.
I realized I was going to die of boredom if not fibromyalgia because I
could not even hold a book to read nor a phone to call someone. I
was in despair until I had a conversation with myself. "I may be
trapped in this bed for the day, but that does not mean I am helpless.
I know my body can't move, but that does not mean my mind can't
think. I will lie here and think, make plans, concentrate on anything
of value in my life. I will think of something useful that will benefit
me when my body stops hurting enough I can get out of this bed."
If you don't want to lie there
and think, listen to the stereo. Watch TV. Use the speaker
phone to talk to someone (but don't bore them with endless complaints and
details of how badly you are hurting). Whatever you decide to do,
don't lie there in despair. Though the day is a bad one, this too
shall pass.
Pregnancy and labor:
The few pregnancy cases I'd heard about (in women with fibromyalgia)
indicated that pregnancy does not worsen the symptoms of fibromyalgia,
and in fact can often lessen severe fibromyalgia symptoms during the course
of the pregnancy. My personal experience found this to be true during
the second and third trimesters.
However, pregnancy poses some of the same symptoms
we have with fibromyalgia -- aching, fatigue, colon and bladder problems,
etc. You can expect to experience normal pregnancy symptoms while
you are pregnant.
I was personally concerned that the hard work of
labor and delivery would trigger a bad episode of fibromyalgia. Amazingly,
labor and delivery did not impact my health in that regard. I sought
and achieved a labor and delivery without medications, and I recommend
this approach to others. I believe it was in my best interests as
well as in the best interests of my baby.
The hormonal/chemical changes following the pregnancy
returned my body to its pre-pregant state regarding fibromyalgia symptoms.
Lifting/carrying/bathing the baby has put a great strain on my back, and
I am fatigued and in pain. I love my baby, cope with fibromyalgia
as best as I can, and life goes on.
Remember, you should NOT take medications when trying
to conceive, while you are pregnant, nor while nursing a baby. Also,
do NOT use your hot tub during the time you are trying to conceive nor
while pregnant.
Invitation to Submit Your Personal Pregnancy, Labor, and Delivery Experiences
Did having fibromyalgia make a difference?
Did your health care provider treat you differently than a healthy patient?
Did you choose a hospital birth, birthing center birth, or home birth?
Did you utilize pain medications in labor, and if so, what were they and
how effective were they in reducing your pain? Other than pain medications,
what did you utilize to cope with the pain of labor and delivery?
Did labor trigger a bad episode of fibromyalgia?
Send your personal information to: fibrom@excite.com
I will address medications
in a moment, but first I would like to discuss changes you can make to
your routine and household to help get a decent night's sleep.
What you do during the day
impacts how your night will go. Strain your muscles today, they will
ache tonight. Encounter a lot of stress today, your body will let
you know it tonight. Thus, you will have to manage your life well
when the sun shines if you expect to have any peace under the stars.
(See "Take Charge and Manage Your
Disease" for daytime suggestions.)
Many people have poor routines
not only during the day, but also at night. They may eat or drink
too much before going to bed, stay up too late, have the room temperature
too hot or cold to sleep comfortably, allow a restless dog or squirming
child to share the mattress, etc. While these things do not cause
fibromyalgia, they can worsen the sleep disorders that accompany the
disease.
A common sense approach to
help break the pain/fatigue cycle is to examine your evening routine.
Do not eat or drink things that will give you late-night heartburn nor
keep you up visiting the toilet all night. If your bladder is full,
it is going to waken you and insist you provide relief.
Some people with fibromyalgia
have extreme sensitivity to cold. Regardless if a healthy person
would say the room temperature is comfortable, a person with fibromyalgia
may be aching horribly and need to crank up the heater. If you have
noticed that you physically feel better when you are warm, by all means,
stay warm! Dress warmly for bed (especially your feet -- try a pair
of socks), add an electric blanket or flannel sheets, turn up the furnace,
put a space heater in your bedroom, snuggle your hot-blooded husband.
Do whatever it takes to soothe your aching muscles.
Consider who or what else
shares your house and whether or not they are disturbing your sleep.
Do you have to get up and let the cat or dog out during the night?
Are you aware of the pet when it walks in the room or jumps on the bed?
If you know it happened, then you were awake enough your sleep was disturbed.
Does a child climb in bed with you after you've dozed off? Does the
phone ring? Does your husband kick the comforter off into the floor
and announce in a booming voice that you've got the heater cranked so high
he feels as if he's roasting in hell?
All right, now that you've
given some thought as to what is disturbing your sleep, it's up to you
to figure out a way to eliminate or minimize the disturbance. The
following are some suggestions. Ban all pets from your bedroom.
Turn off the phone ringer. Tell your husband you will compromise
and turn the thermostat down to a mere seventy-two degrees if he will stop
kicking the entire comforter off the bed and simply fold his half over
on you instead.
Try to set a routine to go
to bed at the same reasonable hour each night. Going to bed at ten
tonight and two in the morning tomorrow night does not train your body
to understand when it is time to sleep. Also, give yourself a minimum
eight hours of sleep because your poor body has enough problems without
you depriving it of rest.
Regarding medications, there
are three areas you must consider. 1) Medications for pain relief
that you use to manage your disease should have the side benefit of aiding
your sleep cycle because the less pain you have, the less chance there
is of pain waking you up at night. 2) Prescription drugs to aid you
in falling asleep and staying asleep are available. Be certain you
talk to your doctor about the possible side effects of anything that is
prescribed. No medication affects all people in the same way, and
a medication that works wonderfully for me may produce terrible side effects
in you. The drug Ambien is an example. I personally had great
success taking Ambien to manage my sleep cycle, but I know of a woman who
said she had frightening nightmares when she took the drug. Her body
did not handle the drug well, and mine did. The only way to know
was to try it and see. 3) You will not succeed in managing your sleep
cycle if you ignore the rest of the advice and think you can solve the
problem simply by taking prescription medication at night. There
is no magic cure. If you want to break the pain/fatigue cycle, you
have to examine and confront each and every area that is contributing to
the symptoms of the disease. Remember, those with fibromyalgia
hover at the edge of deep sleep, rarely reaching the fourth level of sleep
where the body rests and produces needed chemicals such as serotonin.
This critical fourth level of sleep cannot be artificially induced.
Though prescription medications can help you to fall asleep and better
remain asleep, you have to reach that fourth level on your own.
Please remember that your body is not an electric
appliance that you unplug at the end of each day so it will stop running
and rest. Your whole life can impact the quality of your sleep.
It may take changes to many areas before you produce the best possible
environment for your mind and body to relax and renew itself at night.
You will want to make copies of this letter and send them to the addresses given below.
(your return address)
(date)
Dear ________________________________,
I am writing to ask you to take action on behalf
of people suffering from the disease fibromyalgia. Fibromyalgia is
widespread (more common than rheumatoid arthritis), yet it is little known
and poorly understood.
The disease affects fibrous tissues, tendons, ligaments,
and other "white" connective tissues; this results in pain, impairment
of mobility, fatigue, and a host of other symptoms.
Fibromyalgia patients desperately need the following
five things they presently do not have:
1. a correct
and timely diagnosis.
2. informed
and compassionate medical care.
3. new
and effective medications.
4. more
research in the cause, prevention, treatment, and cure of fibromyalgia.
5. Social
Security Administration firm recognition that the disease can result in
partial or total disability for many patients.
Until these five areas are addressed, a significant
portion of our population will be left to suffer at the hands of the disease,
inadequately trained health care professionals, and the Social Security
Administration.
Please write to let me know what you can
do to promote and support research, training, and legislation to address
these five areas. I thank you for any efforts you can give to these
critical needs.
Sincerely,
__________________________
1. Acting U.S. Surgeon General
Dr. Audrey F. Manley
Health and Human Services Department
5600 Fishers Lane, Room 18-66
Rockville, MD 20857
2. Audrey S. Penn, M. D.
Acting Director, NINDS
National Institute of Health, Bldg 31, Room 8A52
31 Center Drive MSC 2440
Bethesda, MD 20892-3167
3. Harold Varmus, M.D.
Director, NIH
National Institute of Health, Bldg 1, Room 126
1 Center Drive MSC 0148
Bethesda, MD 20892
4. Both of your home state's U.S.
Senators. Their names can be obtained at the web site: www.senate.gov
The mailing address for the Senate is:
(Senator's name)
United States Senate
Washington, DC 20510
5. Your Representative to
the U.S. House of Representatives from your home state. Since there
are multiple Representatives for each state, you will need to be sure you
know which one represents your local area. A list of names can be
found at the web site: www.house.gov
The mailing address for the House is:
(Representative's name)
United States House of Representatives
Washington, DC 20515
6. The Governor of your home state. The Governor's name and mailing address can be obtained by calling the reference department of your local library.
7. American Medical Association
President Daniel H. Johnson, Jr., M.D.
515 North State Street
Chicago, IL 60610
(note: The AMA claims they cannot offer assistance, and I believe
that is a cop-out and an insult to fibromyalgia patients and their families.
If the AMA can't lift their voice in support of better educating doctors
on the disease, who in the world can? I recommend insisting that
the AMA take an active role in supporting fibromyalgia training and research.)
8. Anybody else on the planet you can think of who might benefit our cause.
The Fibromyalgia Network is an organization that promotes fibromyalgia awareness and research. It has a quarterly newsletter and does sell back issues. I suggest getting an index to the back issues so you can catch up on what is being done in the field, particularly in medications. Phone 1-800-853-2929. Web site: www.fmnetnews.com
Nidus Information Services publishes reports on a variety of health issues including fibromyalgia. Report #76 dated May 31, 1997 is a valuable publication. Phone 1-800-334-WELL. Web site: www.well-connected.com
The Social Security Administration. Phone 1-800-772-1213. Web site: www.ssa.gov
The Colorado Health Net. Web site: www.coloradohealthnet.org
The Food and Drug Administration has a program called MEDWATCH for people to report adverse reactions to nontested substances, such as herbal remedies and vitamins. Phone 1-800-332-1088.
The Consumer Reports on
Health article "Uprooting Herbal Myths" (from the October 1998 issue)
can be obtained by sending a $3 check or money order to: Consumers
Union, Attn. Box DB, 101 Truman Ave., Yonkers, NY 10703.
BOOKS:
Making Sense of Fibromyalgia by Daniel J. Wallace and Janice Brock Wallice, 1999. This is one of the best books I've seen on the subject.
The Center for Medical Consumers Ultimate Medical Answerbook by Maryann Napoli, 1997.
When the Muscle Pain Won't Go Away; the Relief Handbook for Fibromyalgia and Chronic Muscle Pain by Gayle Backstrom, 1998.
It was developed by a woman with fibromyalgia who has been there, done that, and got the t-shirt. My name is Patricia Seay, and I created this web site with the hope I could help people in their quest to manage their disease and improve their daily lives. After helping a local fibromyalgia support group get up and running, I realized that every meeting I heard the same stories from newcomers: "I've been ill for a long time. The doctors didn't diagnose me correctly for years. I now know I have the disease fibromyalgia, but I don't know a lot about it and my family/friends/coworkers/boss don't understand that my life has been changed. I can't do everything I used to, yet I am under tremendous pressure to perform like a perfectly healthy person. I am angry that my life has been altered, I am in pain and am exhausted, and I am desperate for a way out of this fibromyalgia nightmare." We're all in the same boat. The difference is, I have already found some oars, and I'll share them with you so you can paddle the boat where you want to go instead of being at the mercy of the fibromyalgia current.
Should you have comments regarding the content of this
web site, you may e-mail the author at: fibrom@excite.com
Please include your return e-mail address.
Copyright 2000