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1. A disclaimer.  You should consult your physician to obtain medical advice specific to your case.  This site merely offers the experience and opinions of the author, and it is intended to aid you in understanding and coping with the disease fibromyalgia.   You can use the information and suggestions presented, employ them as a spark to get you thinking, or ignore them as you please.
2. A definition of the disease "fibromyalgia."
3. Diagnosis and tender points.
4. Encouragement to locate a knowledgeable and supportive physician.
5. A description of how it feels to have fibromyalgia.  This information can help assure you your symptoms are not bizarre, and it can help someone who does not suffer from the disease to better understand how it feels to have fibromyalgia.
6. What to do if fibromyalgia affects your job performance.
7. The Social Security Administration, fibromyalgia, and disability.
8. Myths about fibromyalgia.
9. Ideas for how to deal with people (friends,  family, coworkers, and strangers) who do not understand how the disease affects you.
10. Medications.
11. A warning about scams promising pain relief and cures.
12. Take charge and manage your disease including:  a) a core set of traits you need to cultivate,  b) budget your energy and institute personal responsibility in your household ,  c) deep cleaning the house,  d) cooking ,  e) grocery shopping ,  f) schedules,  g) lungs and ears,  h) hands, arms, and shoulders,  i) repetition and sedate,  j) purses and backpacks,  k) telephones,   l) shoes,  m) clothing,   n) chairs and sofas,  o) beds,  p) porch swings and lawn chairs,   q) cars,  r) airplanes,  s) restaurants,  t) movie theaters,  u) dentist offices,  v) exercise,  w) hot tubs, heating pads and ice packs,  x) massage,  y) chiropractors,  z) physical therapy,  aa) your general health,  bb) stay warm,  cc) I can't get out of the house or maybe even the bed,  dd) children,  ee) baby equipment and supplies,  ff) pregnancy and labor.
13. An invitation to submit information on your personal pregnancy, labor, and delivery experiences.  Did having fibromyalgia make a difference?
14. Ways to get a decent night's sleep.
15. A letter you can send to help gather influential support and critical funding to search  for medications, treatments, and a cure.  Names and addresses are provided.
16. Organizations and research materials you can consult for additional information on fibromyalgia.
17. Who developed this web site?
18. Contact the author of this web site.

Definition of "Fibromyalgia"

    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.

• Determine what task(s) you can no longer successfully accomplish.
• Determine if the task is actually necessary.  For example, you may be spending an hour a day filing paper reports that are already on a computer file.  Having the information in two places may be a duplication of work that is unnecessary.
• Can you accomplish the same task by going about it in a different way?  For example, you may discover that you could invite a speaker from the local university to give a speech on current trends in business ethics instead of preparing a speech yourself.
• Can you trade tasks with a coworker?  Perhaps you could successfully do that spreadsheet he is responsible for and he could reorganize the warehouse.
• Do you have the authority and department budget to hire someone to do the task for you?
• If you have not found a solution so far, you are probably left facing the fact that you can no longer fulfill this part of your work requirement.  You must present this information to your supervisor and outline the steps you've been through to try and solve the problem.  If after the supervisor's input the problem has not been solved, you may need to modify your work assignments to better fit your physical abilities.  Perhaps a minor adjustment in job description will be the answer.  Or maybe a major change in job description.  Or maybe you need to cut back to part-time hours.  Or change jobs entirely.  Or quit your job.  No, this is not fair that you have a disease that is impacting your performance on the job.  No, this is not what you had planned for your career.  No, your budget is not set up to handle a decrease in pay.  But the fact remains, your physical abilities have been affected by fibromyalgia, and the smartest thing you can do is recognize this and do whatever is necessary to PROTECT YOUR MENTAL, EMOTIONAL, AND PHYSICAL HEALTH AT ALL COSTS!  This is the only life you will ever get.  When you are dead and gone, no one will care that you were so dedicated to your job that you wrecked your health by playing superwoman at work.  Recognize your limitations and work within them to have the best quality of life possible.

        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
 

 
 
 
 
 A Decent Night's Sleep

    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