AS A FIBROMYALGIA SUFFERER FOR 14+ YEARS NOW AND BOTH MY CHILDREN FOR 10 AND 11 YEARS I HAVE LEARNED SO MUCH ABOUT THIS DISORDER. PLEASE REALIZE I AM NOT A DOCTOR AND THESE ARE JUST MY OPINIONS NOTHING IS PROVEN. TECHNICAL TERMS WILL NOT BE HELPFUL, AS I SAID, WE ARE NOT DOCTORS. BEING A MAJOR PART OF THE START OF OUR FIBROMYALGIA SUPPORT GROUP I CAN GIVE YOU EVERY KIND OF TREATMENT IMAGINABLE! BUT TO BE TOTALLY HONEST WITH YOU EVERYBODY REACTS TO EVERY TREATMENT DIFFERENTLY EXCEPT FOR SOME TREATMENTS THAT SEEM TO WORK FOR MOST FIBROMYALGIA SUFFERERS. HERE ARE THE MOST POPULAR TREATMENTS THAT DO SEEM TO PROVIDE SOME RELIEF. ANYTHING HOT, HOT, HOT!! A WARM SOAK IN THE TUB, A HOT WATER BOTTLE, HEATING PAD ( I LOVE THOSE HEATING WRAPS THAT STAY WARM FOR HOURS! I CAN WEAR THEM AND NO ONE CAN TELL), WHIRLPOOL OR EVEN A COMMON SHOWER. ALWAYS SOAK IMMEDIATELY AFTER EXERCISE, WORKING OUTSIDE, HOUSE CLEANING OR ANY PHYSICAL ACTIVITY. IF YOU ARE NEEDING A SHOT OF CORTISONE FROM YOUR DOCTOR FOR TROUBLED AREAS HERES WHAT I DO: WHEN YOU GET TO THE PARKING LOT OF YOUR DOCTORS OFFICE TAKE 3 200mg IBUPROFEN IN THE PARKING LOT! THIS REALLY HELPS WITH THE LATER AFFECTS OF THE PAINFUL CORTISONE SHOTS. (I HAVE TRIED EVERYTHING AND AFTER HAVING 30+ CORTISONE SHOTS AND THIS REALLY WORKS!) YOU CAN ALSO USE THIS THEORY WHEN GOING TO THE DENTIST OR ETC... MAKE YOUR BED AS COMFORTABLE AS POSSIBLE. SPLURGE ON HIGH THREAD COUNT SHEETS. SLEEPING WELL WILL MAKE A TON OF DIFFERENCE. WRITE DOWN IN A JOURNAL WHAT WORKS, WHAT BOTHERED YOU AND HAVE ONE PAGE FOR QUESTIONS YOU NEED TO ASK YOUR DOCTOR WHEN YOU GO THERE AGAIN. OTHERWISE YOU MAY FORGET. THE FAMOUS FIBROFOG!!!ANOTHER GREAT TREATMENT IS TALKING TO SOMEONE ELSE WHO SUFFERS WITH FIBROMYALGIA. I WAS LUCKY, I GUESS, I HAD BOTH MY CHILDREN IN THE SAME HOUSE TO TALK TO!! I HEAR AT OUR SUPPORT GROUP SO MANY WAYS TO HELP EASE THE MISERY OF FIBROMYALGIA AND AMAZINGLY EVERYONE IS DIFFERENT. WHAT WORKS FOR ONE MAY NOT WORK FOR ANOTHER. SOME SAY EXERCISE IS A GODSEND AND OTHERS WINCE AT THE SOUND OF EXERCISING. HOW ABOUT VITAMINS? SOME FIRMLY BELIVE IN MAGNESIUM, SAM-E, SELENIUM, GLUCOSAMINE AND CHONDROITIN.. HERBAL TREATMENTS: MANGOSTEEN, ST. JOHN'S WART, ECHINACEA, LIQUIFIED OXYGEN, AND A VAST ARRAY OF HERBAL TREATMENTS ARE AVAILABLE. DIET? ONE LADY SWEARS THAT A GLASS OF WINE BEFORE BED HAS BEEN THE ONLY THING THAT WORKS FOR HER TO GET TO SLEEP. ANOTHER LADY SWORE SHE CURED HER FIBROMYALGIA BY ELIMINATING HER DIET OF SOFT DRINKS. BUT DID SHE REALLY HAVE FIBROMYALGIA TO BEGIN WITH? I FEEL FIBROMYALGIA IS AN OFF SHOOT OF ANOTHER DISEASE LIKE MAYBE MS. UNTIL WE CAN DEVELOPE A TEST TO PROVE WE HAVE FIBROMYALGIA WE CANNOT FIND OUT WHAT CAUSES IT AND HOW TO TREAT IT. ALOT OF THE PUBLIC AND EVEN OUR DOCTORS FIND FIBROMYALGIA HARD TO BELIEVE BUT WHO CAN BLAME THEM. HERE WE SAY WE FEEL ACHY AND SICKLY BUT WE HAVE NO IDEA WHAT CAUSED IT, WE HAVE NO TEST TO PROVE WE HAVE IT AND THERE ARE SOME AND BELIEVE ME I HAVE MET MANY OF THEM AT OUR SUPPORT GROUP, WHO CLAIM THEY HAVE IT AND THEY REALLY DO NOT THEY JUST WANT TO COLLECT DISABILITY AND NOT HAVE TO WORK. SINCE THERE IS NO TEST FOR FIBROMYALGIA THEY GET AWAY WITH IT ADDING TO OUR PROBLEM OF PROVING THAT WE HAVE IT AND IT IS REAL. BELIEVE ME I KNOW IT IS REAL! THAT IS WHY WE MADE THE FIBROMYALGIA IS REAL AWARENESS BRACELET! WHEN MY CHILDREN WERE PRETEENS AND THEY STARTED SHOWING SYMPTOMS OF FIBRO I HOPED AND PRAYED THEY DID NOT HAVE IT. AFTER MANY TESTS AND DOCTORS THEY WERE DIAGNOSED WITH IT. HARD FOR US ADULTS TO HAVE FIBRO? IMAGINE BEING 10 OR 16 AND YOU HAVE IT. MY CHILDREN SUFFERED TERRIBLY THROUGH SCHOOL. MISSING COUNTLESS DAYS OF SCHOOL, HAVING TO DROP OUT OF SPORTS AND BEING CRITICIZED NOT ONLY BY THEIR PEERS BUT BY THEIR TEACHERS WHO CLAIMED THEY WERE NOT SICK BUT BEING LAZY. THEY DID MAKE IT THROUGH AND NOW ARE YOUNG ADULTS ON THEIR WAY INTO ADULT LIFE WITH A HORRIBLE SYNDROME (I HATE THAT WORD!) AND FINDING THEIR OWN WAYS OF HANDLING IT. WHAT WORKS FOR THEM AND ALSO WHAT REALLY AGGRAVATES IT. MY DAUGHTER GETS HORRIBLE MIGRAINES FROM PERFUMES. MY SON CANNOT STAND THE SMELL OF SMOKE. HE LITERALLY GETS NAUSEOUS. SO AS I CLOSE WITH THIS I CANNOT STRESS THE FACT THAT IF YOU HAVE FIBROMYALGIA DO NOT GIVE UP! KEEP SEARCHING FOR TREATMENTS AND WAYS THAT WILL IMPROVE YOUR SYMPTOMS. YOU WILL FIND IT! GO TO A LOCAL SUPPORT GROUP AND LEARN NEW WAYS TO TRY OR ONES PEOPLE HAVE BEEN USING FOR YEARS. READ BOOKS, SEARCH THE INTERNET. FIBROHUGS HAS A GREAT SITE. AND REMEMBER YOU ARE NOT ALONE, UNFORTUNATELY THERE ARE ALOT OF US OUT HERE!!
Guide created: 10/12/06 (updated 05/05/09)
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