MAY 12 - AWARENESS DAY OF FIBROMYALGIA so, what ???

@dania12 (124)
Canada
April 13, 2008 6:26pm CST
* * WHAT will you organize in your communauty? city? family? support group? To finally explain to people what is really FIBROMYALGIA? - Not just our Imagination... - Not Depression... - Not just lazy... But, to GIVE really Good True Facts & Infos about FIBROMYALGIA to public, but also to Medical World: RN, Docs, Physio, Ergo, therapists... - and possibly ask for Governmental HELP, for Fund Raising to support researches and adequate treatments or more services to Fibromyalgics & their family & friends ...too much ALONE since too Long!! * * Explain more about Hiden Truth like: many soldiers now coming back with Post-Traumatic Stress syndrome are for more 75% with Fibromyalgia also!! but not DIAGNOSED correctly!! Many with MS- Multiple Sclerosis are also with Fibro!! Why nobody wants to speak about it, it's TABOU, SHAME !!??? * * We can see 3 aspects in Fibro: - Neurology: imbalance of neuro-transmitters, Serotonine, Dopamine, P-Substance, sleep disorders, ... * * Can they (doctors, bio-chemists) a Day Finally make performing Tests to evaluate the level of each of these problematic neuro-transmitters of Fibromyalgics??????? To make better diagnosis! - Rhumatology: pain 24/7 all body, weakness, diagnosis by 11/18 target points... - Gastro-enterology: digestion problems, pancreatic functions making less enzymes, irritable bowell, diarrhea-constipation, nausea, vomiting, intolerance like for milk, gluten. So, obligation to change Nutrition completly and make a Listing of Foods Ok and Not Ok, often with obligation to go more Vegetarian for around 75%. Take proteins from other sources: soya, nuts, beans, legumineuses,... - Fibromyalgia is GENETIC!! YES, what a Gift to give in Heritage to your children!! * * On Awareness Day Please Think about!! MAY 12: Let me know WHAT You will do for your friends or family members with FIBROMYALGIA please Thank you in advance, Dania, Physiologist Ph.D. & Fibromyalgic but... Active!!(when able to Be out of Bed!) * * I wish ALL a Wonderfull 12 MAY 2008 - Forget Not: You are Not Alone!! - Song: " I stand by You! " can be inspiring!!
1 response
patgalca
@patgalca (18394)
• Orangeville, Ontario
15 Apr 08
Unfortunately, May 12th comes and goes without notice. Not enough is doing done to create awareness for this illness. I am managing the illness to the best of my ability. My biggest problem these days is just being too tired. Sometimes I blame it on going to bed too late but last night I went to bed earlier and was awake at 6 and couldn't go back to sleep. I get more hours sleep if I go to bed at 1 or 2. Last night I got less than six (headed for bed at 11:30, made DH's lunch for work, in bed by 12, got an idea and turned the light back on to write it down - asleep by 12:30). I worry that my 15 year old may be heading down the path of fibromyalgia as she has sleeping problems and anxiety, sometimes weird pain. But she is very active in sports so can't be too bad. ivillage has a great fibromyalgia message board. It's not overly active and populated like fibrohugs. But the people there are very, very friendly and supportive. Let me know if you want the link.
1 person likes this
summerfire
@summerfire (427)
• United States
15 Apr 08
I would like the link
patgalca
@patgalca (18394)
• Orangeville, Ontario
15 Apr 08
Here is the direct link to the fibro message board: http://messageboards.ivillage.com/iv-bhfibro/ ivillage is huge. You could get lost in their trying to find the board you want. Whenever I lose my favourites and I have to go looking for it from the home page I find it hard.... or maybe it's just me. Anyway, you would have to register with ivillage to participate. I look forward to seeing you over there! (I've got the same user name there).
1 person likes this