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| "FIBROMYALGIA THE INVISIBLE" REFERENCES TAKEN FROM FIBROMYALGIA SUPPORT.COM |
| "You look fine......." Such words are usually intended as a compliment. Sometimes they provide reassurance. But they can also produce confused feelings when someone is silently suffering. This problem is not unique to Fibromyalgia. Parallels are easily drawn with other conditions with controversial diagnoses and uncertain cause, such as chronic fatigue syndrome, post-traumatic stress disorder, and premenstrual syndrome. These disorders can be considered "invisible" disabilities because they are virtually impossible for casual observers to detect. What does it mean to contend with a seemingly invisible medical condition? It does not always work against us, for we can "pass for normal" when we want to. At other times, however, it might be helpful to have a large sign on our forehead saying "PAIN" or some such thing. Fibromyalgia is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 in 26 Americans suffer from this condition. One of the most significant contributions to this change was the creation of diagnostic criteria by the American College of Rheumatology in 1990. TENDER POINTS THE FOLLOWING IS ACCORDING TO MY OWN PERSONAL CHIROPRACTOR AND SHE ALSO CONDUCTS A SUPPORT GROUP FOR FIBROMYALIGIA PATIENTS IN MY AREA. The diagnosis is made when a patient responds to moderate palpation at a minimum of 11 of 18 sites, or what we refer to as TENDER POINTS. This is how to make it a visible versus invisible disease. OBVIOUS SYMPTOMS A change in the weather, stress, activities, medications, are just some of the few things that cause flare ups. HERE ARE THE MOST COMMON SYMPTOMS ASSOCIATED WITH FIBROMYALGIA( A CHRONIC MUSCULOSKETLETAL CONDITION THAT CAN BE ASSOCIATED WITH THE FOLLOWING CONDITIONS:) HEADACHES, FATIGUE, ALLERGIES, CIRCULATION PROBLEMS, CRAMPING, DISTURBED SLEEP, SKIN PROBLEMS, DEPRESSION, BLADDER PROBLEMS, DIFFICULTY CONCENTRATING MYOFACIAL TRIGGER POINTS, ABDOMINAL PAIN(also bloating and alternating constipation and diarrhea-irritable bowel syndrome) RHINITIS (sinus problems, sneezing, and drainage) SORE THROAT (with normal test findings) GASTROESOPHAGEAL REFLUX ~ HEARTBURN (which can be relieved by antacids) TEMPERATURE CHANGE INTOLERANCE CAUSE OF FIBROMYALGIA The actual cause of fibromyalgia remains unknown. Research continues to be performed. The newest studies indicate that dysfunctional movement of the facet joints of the vertebra and misalignment of the sacroiliac joints significantly contribute to the pain factor of a patient. PAIN MANAGEMENT * Maintain proper functioning of facet joints in the spine by utilizing a regular adjusting schedule. *reduce the presence of trigger points through at home trigger point massages and heat/ice therapy *Utilize muscle therapies such as professional massage, electrical stimulation, and/or ultrasound for persistent problems. *Maintain a consistent exercise program which includes daily stretching and conditioning. Water therapy can be very helpful. *Maintain proper posture and utilize an ergonomically correct work station. *Maintain regular eating schedule utilizing proper nutrition. There is evidence that nutrition may effect the immune and inflammatory response. WELL TO ME THAT SOUNDS ALL WELL AND GOOD, BUT TELL ME, WHAT INDIVIDUAL THAT DOESN'T EVEN SUFFER FROM THE DISEASE, CAN KEEP UP WITH THIS REGIMENT OF THERAPY AND CAN AFFORD ALL THAT IT COSTS YOU MONETARILY, NOT TO MENTION THE TIME INVOLVED AND THE DETERMINATION IT REQUIRES. NOW YOU TAKE ALL OF THAT AND GIVE IT TO SOMEONE LIKE ME FOR INSTANCE, WHO SUFFERS 24/7 WITH PAIN, AND THE PAIN VARIES. FOR THE PAST SEVERAL WEEKS, IT HAS LOCALIZED MAINLY IN MY UPPER ARMS. I AM UNABLE TO RAISE MY ARMS ABOVE MY HEAD, OR EVEN BEHIND MY BACK. I HAVE BEEN TREATED WITH DIFFERENT KINDS OF THERAPIES, GIVEN ALL KINDS OF ADVICE, GIVEN ALL KINDS OF MEDICINES AND THAT'S NOT INCLUDING THE OVER THE COUNTER REMEDIES THAT I HAVE BEEN ADVISED TO TAKE. WITH DIABETES, CHRONIC DEPRESSION, AND FIBROMYALGIA, I HAVE A TWICE DAILY REGIMENT OF 14 PILLS TO TAKE TO ALLOW ME TO BE ABLE TO FACE MY DAYS STILL WITH PAIN, BUT ENABLES ME TO GET OUT OF THE BED. THE PURPOSE OF THIS PAGE IS TO LET THE PEOPLE OUT THERE WHO SUFFER, TO KNOW THAT THEY ARE NOT ALONE. AT THE SAME TIME ALLOW THE ONES WHO DON'T UNDERSTAND THE EFFECTS THIS DISEASE HAS ON THE SUFFERERS. MANY OF US HAVE BEEN LIVING WITH THIS FOR YEARS AND YEARS AND DIDN'T KNOW WHAT WAS WRONG WITH US. A TRIP TO THE DOCTOR WAS FUTILE, BECAUSE ALL THEY COULD TELL YOU, WELL I CAN'T FIND THE PROBLEM, OR ITS JUST A VIRUS, AND GIVE YOU PILLS TO TAKE. YOU GO HOME FEELING DEJECTED, AND SOMEWHAT LIKE A NUT CASE, BECAUSE YOU KNOW THAT THE PAIN IS REAL. WHY CAN'T SOMEONE TELL ME WHATS WRONG? NOT UNTIL THE LATE 80'S OR EARLY 90'S DID THEY EVEN ATTACH A NAME TO IT. I READ THAT ACCORDING TO A JAPANESE DOCTOR, THIS IS WHERE THE NAME ORIGINATED, FIBRO--(attacking the fibrous tissues) MY--(meaning -belonging to me)) algia(meaning pain)...... CAN'T REMEMBER THE SOURCE, BUT I THOUGHT IT TO BE SO INSIGHTFUL, DUH........ SERIOUSLY, THIS AFFLICTION IS REAL, AND IT EFFECTS SO MANY, I JUST WANTED TO DO MY LITTLE PART IN SHARING WITH THOSE WHO MAY BE SUFFERING IN SILENCE. ANOTHER THING THAT THIS DISORDER CAUSES THAT NOT MANY TALK ABOUT, IS YOUR SENSE OF DIGNITY..........EXAMPLES: * SHORT TERM MEMORY LOSS(which for me is really evident to those with whom I live with and talk with everyday) * inability to dress yourself, or wear certain articles of clothing without pain... Not being able to do routine duties around the house, such as vacuuming, grocery shopping, even sometimes cooking, because you get muscle spasms from standing in one place. THERE ARE MANY OTHERS I COULD LIST, BUT NOT EVERYONE IS THE SAME, SO I HAVE SOME VOLUNTEERS WHO HAVE SENT ME "WHAT LIVING WITH FIBROMYALGIA IS LIKE TO THEM" ~ ~ ~ ~ TESTIMONIALS: "COPING WITH FIBRO" When the doctor told me that he felt I was suffering from "Fibromyalgia" I thought "why not" just add that to osteoperosis, sculliosis , osteopanea, ankelosing spondylitis.......and there you go! He should have just said "You are doomed for pain!" I have lived with ankelosing spondylitis since I was 19 and the sculliosis since birth, and the others came with age. I would like to say though that "Fibromyalgia" is a real "KICKER"> On any given morning when I open my eyes, I wonder if today will be a "good one." or will I labor in pain? Good, meaning with little or no pain. I have gotten so used to living with the pain that I don't even complain about it anymore! My muscles have become so hard and tight.... it hurts my husbands "big strong hands" to masssage my back (so I can breathe easier) he says my back feels like a "brick" and I guess it does. Like I said....I have gotten so used to the pain....which also goes into my legs, where some days I can't walk....or into my shoulders and arms to where I can't lift them....and then there is that heavy tiredness that goes along with that and the"foggy" mind and memory...... I try consoling my self by thinking about others who are "worse off" than I will ever be. I think about children in burn units, or dying with terrible diseases, etc. I also find that if I concentrate on other things the pain receeds....I do go to a chiropractor and he helps more than anything else that I have tried. I use hydroculators....the moist heat is very comforting, and try to keep moving...even when at the computer....I get up and down a lot. I could go on and on about the disease itself, but I feel that "Gods" grace is sufficient for me to get by. I thank him everyday that I am not having to sit in a wheelchair. I find the best treatment for me is to be "positive" in my thinking...Like Shy says "PEOPLE DON'T UNDERSTAND" so...I don't even try to "justify" it with a comment, one war or another! And, yes........there are day's when I'd like to stay in bed and pull the covers over my head....but that to me seems a little like "self pity" and we all know God doesn't like that. I feel if we dwell on the good things and try to forget the bad...our days will seem a little brighter! May God bless everyone who carries the burden of this disease and help you cope with it, day by day. GOD"S BLESSINGS< JUDITH JOHNSON KYPTA ~ ~ ~ ~ "FIBROMYALGIA AND MY EXPERIENCE WITH IT" As I write this, the muscles in my neck and shoulders are so tight and sore that I can barely move my head without a lot of pain. Almost any spot you touch on my body feels as though it is bruised. I have FIBROMYALGIA. I was diagnosed at the age of 42 by a Rhumatologist. I am now 62 and have lived in almost constant pain for 20 years. There is a joke about a woman that woke up one morning and thought she was dead because nothing hurt. That would be me. I have Restless Leg syndrome, Irritable Bowel syndrome, a sleep disorder, and almost constant fatigue. This is all complications of Fibromyalgia. When I was diagnosed 20 years ago, Fibromyalgia was called Fibrositis and not much was know about it. Still I was relieved to hear a name and know I wasn't crazy and that others had this syndrome. I had never heard of anyone outside of my family with the same symptoms that I had. My maternal grandmother had it and it was called Rheumatism, my mother's was called Arthritis and it does run in families. My daughter, sister and a couple of nieces are showing the same symptoms that I have. Over the years by trial and error I have found some things that help me. I'll share them with you. I take a anti-inflammatory drug that reduces the stiffness and pain. I've found that using heat and massage relieves the pain as well. Sleeping on a water bed with a heater also has helped me and using a mattress pad with heat on a regular mattress helps as well. I've also found that a mattress with a pillowtop helps. I take a Rx sleep aid as well. If you try a massage make sure it is a gentle relaxing massage and nat a deep muscle massage. I had one of those a couple of years ago and by the next morning I had to have help getting out of bed. I felt as if someone had beaten me! The massage therapist told me the deep muscle massage would get rid of toxins in my muscles. It almost got rid of me instead! There is a lot of good information on the internet describing Fibromyalgia and it's complications. The most important thing for me is having a good doctor that will work with you and an understanding family. That goes a long way in helping you cope with the pain. ~Barbara Graham, Arkansas ~ ~ ~ ~ ~ THIS TOO, SHALL PASS! Carefree days, what a blast, Ah, but such a thing of the past. Painless days, I've had a few, But for a long time now, I'm over due. I try not to complain, doesn't help, God is all....that can intercept. He's so wonderful to me Giving me.......new abilities. To write in prose my feelings, Hoping to help with dealing. With the pain that fills my days, And hinders me in so many ways. My friends are great and caring, Knowing the load, I'm bearing. Sending loads of laughs my way, To fill these irritable days. I'm blessed in home and family They try to understand my maladies. My spouse is wonderful and great, Giving massages, without complaint. He takes care of the household chores As well as everything outdoors. I thank God for his love and care, And the many ways he shares. So I'll keep Praising the Lord for life, And the way He delivers me from strife, This one thing I know, without having to ask, That the day is coming, when THIS TOO, SHALL PASS ! ! ! ! Written by Shirley Barr August 9, 2004 All Rights Reserved ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ TO BE CONTINUED ~ |
| PART ONE, compiled by Shirley Barr, August, 11, 2004 |
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