Living with FibromyalgiaThis section is a place to share stories about Living with Fibromyalgia. Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download fibromyalgia To the 43 yr old nurse with fibro.. I was a support group leader and found that a large percentage of our group had encountered drs who, due to their own lack of medical knowledge and respect for women came to the lazy/crazy stuff. Some women have felt so totally betrayed by that, and the friends and family who do not understand fibro or believe that it exists (yes, there are some drs who STILL don’t get it) that they wanted to end their lives. This is the time to get angry, to see a rheumatologist (be sure that dr acknowledges the condition before you spend money on the office visit) Stress is our enemy. Lack of sleep is the next worst. Letting people There is no one treatment or medication that helps us all. We need to experiment. Some are helped by guifenisne (sorry about that spelling!) Some are helped by flexiril to relax muscles and aid in sleep. Some take vicoden when things are really bad. Warm water swims and soaks at less than 102* Most of us sleep with a bed full of pillows. I have 7 of various kinds for various purposes. The soft down pillows on top are the easiest on my bones. Mild, gentle exercise is important and the studies by top fibro researchers in US & Denmark confirm we do better when we do not give in to the pain and avoid movement. Bike riding seems to be a great help in the studies. Caffine containing things are thought to increase problems. We are always worse in winter and when the barometric pressure changes. We all walk like old people (and feel like it too) on the first new rain. Fibro changes from week to week, from month to month and year to year. It is worse in time of turmoil and crisis. But it is much better in warm weather. We crave carbs because they transform into serotonin that we need to address our symptoms and pain. Our bodies know what they need. The problem is maintaining healthy weight! One third of us will develop lupus one third arthritis, and one third diabetes. I have developed diabetes and spinal stenosis, and carpal tunnel. This life is not for sissies, hey? Well, it is hard and very hard sometimes. But I do believe that the saying of native americans has merit: those of us with fibro have a secret, and when we deal with it, we get better. The medical world also knows that most of us had a childhood of unrelenting stress. I did. Don’t let a dr use that to give you the ‘you must be (any word meaning emotionally off kilter)” But truthfully, some of us are and so are those with no medical issues. My advise: simplify your life, don’t try to be super nurse, super mom, super daughter, super hostess, Take time to be good to yourself and know that you can find a modified life that will be what you need. It is a life changing condition but if done properly you can find a new career (I went from administrator I changed my career, priorities, friends, and turned inward to nurture myself and forgave myself for not having lived up to my type A personality and ambition. It can be a time to find inner peace and truly satisfying life. Oh, I tried desepramine for a while, no drug works indefinately for fibro so you may have to switch around. Good luck! I will say a prayer for you tonight. Oh,ps. look for a fibromyalgia support group in your area or one of the national groups like the Fibromyalgia Network. Great folks.. and you will find the latest in research, treatments, laws, and meds. [moderator note: You may also visit the healthchannels forum for Fibromyalgia support: Join our Fibromyalgia forum Comments
October 2007
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