# Course/Workbook for Fibromyalgia... and info about DES & Fibro



## Susan Purry (Nov 6, 2001)

K9Mom kindly forwarded this information to me. You may find it interesting if you have been exposed to DES. There's also some information about the National Arthritis Association's course on Fibromyalgia - I've put that bit in bold.


> quote:What is of interest to DES exposed & those who also have FM is that it =is more than just a "pain" syndrome. It may involve the body not =efficiently using the nutrients we eat; thereby, requiring us to take =additional supplements. It may involve irritable bowel, fuzzy thinking, =ascued sleep cycles, depression, and hormonal irregularities. Many who =experience it also have a history of allergies or strange reactions to =medications.As others have said, this syndrome is one that is in its infancy in =being classified and understood. It shares the symptomology of so many =other syndromes & diseases. This is why it usually is not the first =diagnosis one is given. Because it can express itself in so many =different ways with so many people, one set way of treating it for =everyone just does not work. Consequently, rhumatologist, psychologist, =infectious disease, neurologist, cardiologist, gastroenterologist, =endocrinologist, PT, MT, DC, orthopedic, and Internist may all be =involved in one's care.The interest of the link between DES exposed and FM is that the =mechanisms within our bodies that regulate all of our systems were under =development during the time of our exposure to DES.* Again, the National =Arthritis Association's six week class and book are very informative. =They cover the many ways that FM can express itself, the many different =treatment approaches that are available, a resource of publications that =include studies that are under way, and personal profiles of people who =have FM and the life style changes that have helped them.The course is demanding. It requires an open mind, a willingness to =share your experiences, and a willingness to be open to some minor life =style changes. Each week there is a commitment contract that you sign =with goals on it for areas in your life that you will try one of the =methods that has been suggested in the course. =20FM is not a disease. It is a syndrome. In my class each of us had a =different list of complaints with some overlapping issues. Each of us =was benefited by the simple life style changes. The approach is a =wholelistic approach. They cover the spiritual (individual's personal =beliefs), emotional, cognitive, & physical parts of the person. =Relationships, activities, work, pleasure, responsibilities, stresses, =sleep, pain, fatigue, medications, etc. are all covered in the course. =The book is called, "Your Personal Guide to Living Well with =Fibromyalgia". It can be found in many public libraries. ISBN: =1-56352-382-5 The handouts were wonderful. I wish they would bind them =in a handbook that could also be found in libraries for those who live =in areas that don't offer the course.*





> quote:Someone posted today on the listserv that the workbook mentioned is about $20.00 USD





> quoteES is short for diethylstilbestrol. It was initially a medication given to expectant mothers from the 1940's to 1971 - when it was banned by the FDA for use in expectant mothers (it's still prescribed today, most notably as the "morning after pill" or "emergency contraception"). DES was thought at first to aid in preventing miscarriage....it was later prescribed as a "vitamin" to aid expectant mothers in having healthy, big babies.Millions of women took this medication....some are not even aware that they took it, as at the time you generally did not question your doctor!In 1971 DES was banned for use in pregnancy due to the effects the drug had on the offspring that were born. They found that there was a rare cancer that the daughters born to the DES Moms were getting....(clear cell adenocarcinoma of the cervix). Much has been learned since then, with it coming to light that DES brings a myriad of problems to the children that were born, both female and male.Some of the things are: increased incidence of autoimmune diseases, severe infertility problems, tubal pregnancies, incompetent cervix, deformed or malformed reproductive organs...septated uterus, ****scomb cervix, hooded cervix, missing kidney, undescended testicles, etc., etc.While the DES fiasco has been a monumental black spot on the pharmacuetical and healthcare fields, they have been successful in suppressing the information and a class action lawsuit filed on behalf of all of the offspring was unsuccessful in the 1970's.(Probably more information than you wanted to know!)The DES listserv is located at: http://www.surrogacy.com/online_support/des/


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