From Edie Chernack, Connecticut:

It can be so frustrating, if not quite irksome, to explain to someone who doesn't have fibromyalgia, from here on referred to as FM, how it feels to be inside a body that can challenge us every waking moment of our lives.  But we must try to put ourselves in a "normal's" shoes.  We often look "normal", regardless of the fact that we may be in severe pain, have horrible bouts of Irritable Bowel and/or Bladder Syndrome, acid reflux, serious problems with all the different symptoms of brain fog, depression, problems sleeping, severe mood swings and irritability, and all the hyper-sensitivities that go with this monster.  If I've left any symptoms out, please just chalk it up to my poor short term memory, another symptom of brain fog.

Once we've educated ourselves about FM, we have to try to educate those who touch our lives; family, friends, doctors, employers and coworkers.  You may ask, "If I am just getting a grasp on all this, how will I ever explain it all to someone who hasn't experienced this?"  That is the billion dollar question!!!  The answer is, with a lot of patience and persistence.

Family and friends should come first, as they should be your primary source of moral support.  There is information you can print out from the internet, which you can give them, to help them understand.  That information can be found right here, at this website.  It is so important that we share our symptoms, fears and concerns with our loved ones.  They need to know what we are going through, in order to give us as much support as they can.  If you find you have family or friends who don't believe you, or try to belittle you because of the limitation FM can place on us, you need to try to find support elsewhere, as these nay-sayers will only bring you down by adding to your stress.  Keep them in your life, if you must, but keep your sharing about your symptoms for those you've found who do support you.

Next are your doctors.  If you haven't yet found a good doctor to help you deal with and treat your FM, I strongly suggest you find a rheumatologist who believes FM is real, as is the pain it causes us.  If you haven't found a doctor who believes FM is real, we can help direct you in your search.  When you find a good FM doctor, be sure you have made a list of all your symptoms, concerns and questions, and be sure you put it somewhere where you will be sure to bring it with you to your appointment, i.e., your purse or the vehicle you'll be driving.  As long as it can often take to get an appointment to get in to see a doctor, you don't need the added frustration of forgetting your list.

You need to be honest with your Dr., as they may be your connection to pain relief. Do not be afraid to ask for something to kill your pain, if you feel you need it.  Some doctors have come back on us, accusing us of drug seeking.  If you haven't been able to get a feel if your doctor is open to writing scripts for pain killers, you could approach it thus, "Doctor, I'm aware there are mixed thoughts about giving a chronic pain patient pain killers.  I've heard stories of doctors who accused their patients of drug seeking, if they requested pain killers.  Then there are the doctors who will give their patients pain killers, but you have to ask for them.  I have tried many different things to relieve my pain, but nothing has really helped.  So I need to ask you for your help, to help minimize my pain."  If your doctor does write you a script for a pain killer, and you find it isn't strong enough to make your pain manageable, be sure to let your doctor know this.  If your doctor refuses to help you, then it's time to find a new doctor.

As for the other symptoms of FM, you may find you need more than one doctor to manage your symptoms.  Often a chiropractor, gastroenterologist, massage or physical therapist, even a dietitian, may be a direction you'll need to pursue.  It will all depend on your symptoms, and the method of treatment you choose to take.

Regardless of whom you find to help you manage your symptoms, you need to let them know you have been diagnosed with FM, and are asking them to become a part of your health care team.  You need to be honest with them as to all the symptoms you have, as that is liable to be something with which they can help.

Last, but not least, are your employer and coworkers.  I have to be honest with you, I had been home raising my sons for 5 years when I was awarded social security disability because of FM, so my experience with dealing with employers and coworkers is limited.  However, I have worked part-time for a publisher since just before I was diagnosed.  I have been very lucky, in that his girlfriend has children who have FM, so he has been very open to my educating him, if not actually appreciative at times.

Try to get a feel for how you think your boss will respond to your telling him/her about your having FM, and how it limits your physical activities and mental capabilities.  It would be helpful if you can give them some printed information about how FM can effect a person, but explain that everyone is different, and that you may not get some of the symptoms, if you don't already have them.  If you can have something written by your doctor, that might help too.  Try to explain what you need, to be able to continue to work, i.e., a chair with good lumbar support, to be able to get up and move around every 20-30 minutes and stretch your muscles, or sit and rest your back for a few minutes, as needed.  If you do work that is repetitious, perhaps you need a list to refer to, if you have a tendency to forget.  In my case, I do marketing.  I've given the same schpeel for the last 4 1/2 yrs., but I still need my script in front of me to refer to, or I totally loose my rhythm, and stumble all over my words.  If you do not get a compromising response from your employer, seek out your personnel director.  You have legal rights, and your employer has to abide by certain laws that effect those of us with health handicaps.

As for your coworkers... unless you already have a good relationship with them, you need not mention anything about your health to them.  If, however, your work puts you in a position that you have to rely on some of your coworkers to successfully do your job, than it would probably be a good idea to let them know you are having some health problems, and ask for help when you need it.  You need not tell them you have FM, as you are liable to get at least one person who knows someone who has a friend who has FM, and they swim, and walk, and eat right, and they do just fine.  Haven't we all heard that line at least once?  If you decide to let someone know you have FM, coworker, friend or stranger, and get this type of response, you can always tell them you'd be happy to bring them some literature about FM, so they can properly educate themselves, so they can learn that it effects everyone slightly different, as do all the different methods of treatment.  That you are already doing everything your doctor has recommended, and if they hear of someone who's been cured, please let you know how it was done, because the 6-10 million Americans who have it, and all the doctors and scientists who have been doing federally funded research, would love to know.

I hope you have found this to be of help to you.  Please, never be afraid to ask for help from your FM family, a.k.a. fmily.  Message boards are generally safe, understanding, accepting, caring places to come and learn, vent, share, find answers, make friends, and find and give support.  So many of us have already been there, done that.  We are here to help each other, in a world where no one understands like those of us who have experienced what you are now going through.  Please, take care and remember to be good to yourself.

From Sandy Platt, Indiana:

I was diagnosed with Fibromyalgia 17 years ago.  My kids are 17 and 22.  Doing the math, you can see that I had Fibromyalgia the entire time I was raising my children; and most of the 24 years I have been married to my husband who is a minister.  Being in the ministry we also lived a very public life, and moved approximately every 4 years.

Standing near the finish line of raising children, I am here to encourage young mothers that it can be done.  You CAN raise healthy, beautiful children while having a chronic illness.

1. Feed your freezer!  When healthy convenience food is on sale, buy as much as you can afford.  By the same token, when you make casseroles, or foods that freeze well, double the batch and freeze the extra for those inevitable "bad days."  I freeze several meat loaves at a time, chili, any kind of casserole, and even cookies or coffee cake.  It sure saves the day when I am overbooked, or over tired.

2. As early as possible, teach your children to pitch in with the housework.  It might be easier to do it yourself, but when they know how to do a chore well-Hey! it is free help!  In my house, if grumbling starts, I remind them that we all share the same last name, so we all pitch in to help.  It gives them a sense of self worth and it is a big help too.

3. Quiet time. Mandatory!  All through their growing up years, the time from 1-2 PM is quiet time.  It is something that my Grandma did with me, and it is a true blessing for those of us who tire easily!  My kids went along from baby nap time, to quiet time to read and rest.  Even during the summer when they were too old for nap time, they still enjoyed reading and letting Mom nap.  Then when it was 2:00, curtains opened and we returned to summer with swimming or play time with their friends.

4. Blitz!  Of necessity I did not keep a spotless house.  Toys and books were often everywhere while I worked on my writing, or rested.  We often had Barbie villages in the living room, and GI Joe headquarters in the dining room.  Sometimes Barbie and GI Joe had wars.  But when the piles got too big, noise levels got too high, or it was time to wind down for the night, we had a signal. BLITZ!  That meant I set the timer, and every visible mess needed cleared away in the 15 minutes before the buzzer rang!  Everyone, including adults, dug in.  Then we would have a clean relaxing place for a guest, or time to wind down with a story before they went to bed.

5. Crazy Quilt Night.  Inevitably a really bad Fibro flare day would rear its ugly head.  Often, in my kids' younger years, my husband had 2 churches to care for, and went to Seminary part time.  I had to go it alone.  So we would have a Crazy Quilt night!  They would come trooping in from the bus, and our crazy quilt would be on the floor.  That meant that we would be watching Disney Videos and coloring pictures.  We would have sandwiches, and picnic in the living room.  They could bring out a few quiet toys and the quilt would be a "boat in the ocean", and they would need to stay on the boat or they would fall in the water!  They knew, really, that it meant Mom was having a bad pain day; but it was still a sweet, relaxing fun time for us.  I think that they enjoyed the time to unwind too.

My daughter is working on a scrap book of her growing up years for her High School Senior English project.  She and I have looked through pictures and talked about fond memories.  The Crazy Quilt, or toy villages, swimming at the lake while Mom was on the quilt in the shade.  She doesn't have bad memories of Mom being sick, even though I have had Fibromyalgia her whole life.  I may not have been able to do all the things that other mothers did, but I think in a way, it benefited the kids in that it made them very caring and sensitive of others.

Young Mothers, I hope this has encouraged you, and given you ideas of how to raise your family while having Fibromyalgia.

A few tips From Betsy Jacobson, New York:

DO:
Read about FM
Laugh!
Use cushions and pillows for back and neck
Cervical pillow for dentist visits a MUST
Cuddle-Ewe for under sheets
Delegate and ask for help


DON'T:
Sit or sleep in a cold draft
Smoke
Do repetitive things for long periods of time,
take breaks!
Vacuum
(I'd include housekeeping in general.)    ;-)
Efficiency efforts aimed at simplifying life


Fun distractions of all kinds, e.g. movies, light gardening,
dining out, hobbies, etc.
Help people with FM and other medical conditions......Laugh.......
Prayer/Support group participation, but no pity parties!!


TRAVEL TIPS
These things work, I've traveled a lot and I use these tips:

I DO recommend travel if, of course, you can afford to both
physically and financially!

IN PLANES:
Get up several times and move about the cabin -- to get your blood circulating, flex your ankles.

PACK AND PLAN as if you're leaving the day
before you're really scheduled to leave.
You'll still have last minute things to do.

TIME ZONE CHANGE
If you'll be traveling to another time zone,
Reset your watch as you get on the plane.

TRAVEL LIGHT - - - TAKE YOUR MEDS AND SUPPLEMENTS
I use small brown kraft envelopes called "# 1 coin envelopes" and use one, labeled, of course, for the time of day and/or meal.
TAKE A 2 DAY SUPPLY (extra) OF MEDS AND SUPPLEMENTS IN YOUR PURSE AND/OR CARRY-ON
(check ahead of time to be sure of the current airport security regulations and have prescription information for controlled substances!)
TAKE A CERVICAL PILLOW to ease your neck position while
on a train, plane.
DEEP BREATHE especially in transit.
Oh And  DON'T FORGET TO LAUGH!
AND BE SURE TO READ AS MUCH AS YOU CAN ABOUT FM — KNOWLEDGE IS POWER


                             And, finally, from me: (Micki)
                                          

IF you have seen my website THE GIFT OF FIBROMYALGIA
you will know how my own life was changed because of fibromyalgia.  Change can often be a scary thing, but new challenges bring new opportunities.  Read, explore your own interests, spend more time with family and friends.  If you are spiritually inclined, look to that to give you strength and support.

Every life is filled with challenges, some physical, some emotional, some spiritual, some financial.  The way we embrace these challenges determines who we are and what we will become.

Be positive and excited about your future.  It may be different than the one you had planned, but it still can be wonderful!

In addition to all of your reading on Fibromyalgia, I highly encourage you to read a wonderful book called The Secret By Rhonda Byrne, it very well may change your life.

Rose asks us all to reflect upon this Native American legend: