Karen McGarry
Hello Ellen - I'm 57 and was diagnosed with ED when I was forty. The pain kind of moves around on its own unless I injure myself which I am careful not to do. I have even been made worse from PT - and I know they hate to work on connective tissue patients because of our fragile tissue. I do exercise almost daily - walking or warm water therapy and I golf once or twice a week. Yes, I hurt all of the time and have not had a single day without pain. Therefore, I have learned to live with it. The longer I am in one position the more I hurt and the more immobile I become. My most recent problem is that my feet hurt all of the time and I cannot go without shoes or slippers because I have no padding on the bottom of my feet and am walking on my bones, so I'm looking for more comfy shoes and inserts. One thing I have found extremely helpful (I was recently diagnosed with Fibromyalgia also) is Flexeril taken before bedtime. For awhile I was waking up with deep muscle aches and unable to move. Very Scary. But the Flexeril helped enormously!! Now I sleep better than I have in years and love it. I also had profound elbow pain, especially the left one due to a calcium deposit. I tried acupuncture and it worked!! It helped my hips greatly also. I was having a tough time getting in & out of the car and now that's a problem of the past. But, I tell ya, it's always something hurting. I know I'm the only one in control of my disease and I do what I have to be as comfy as possible. In joining walking groups or water aerobics or warm water therapy I have come in contact with others who experience constant pain and it's interesting how each of us handles it and we are a help to one another also. I wish you luck and don't give up or give in. I know it is sometimes (most times) very hard but our future lives depend on how we lead our present daily lives. Stay as active as possible and myself - I am so glad I have this disease instead of MS or something more debilitating. Take care and feel free to answer-amakaren@yahoo.com