@rwinney. Thanks for taking the time to respond and the recommendations are spot on. I tend to ruminate over if I hurt someone’s feelings, could have done something better etc. I can only use my eyes a short period of time. Unfortunately the suspicion of the most recent specialist is that LP is also now in one of my ears and on my scalp, could even be in my nose based on symptoms and initial visits to drs. Not a pretty way to end up but I sure hope when it get too bad I am offered something to kill the nerve pain. I went through a 4 hour stretch today where my eyes had a deep, deep pain and I was spasming so my husband had to attend to me. The dark bedroom was too bright for me so I had to wear sunglasses. I was so worried no one would respond or support me - everyone here has serious issues. I lost the use of my legs last night while starting to do laundry and they didn’t become useful again this morning but then the all over spasms started. I keep asking my husband to videotape it because doctors don’t believe me. Oh well, I am so uplifted and can’t thank you enough!

What a nice post, thank you. I forget at times to follow the suggestions you provided and find myself feeling overwhelmed with the world around me.
I am 64 years old and have had pain issues since I was in my teens. My mother and 6 other siblings have the same condition but I'm the only one who physically used my body throughout my life which resulted in my having to have multiple surgeries to repair the damage. I ended up in a wheelchair for close to 15 years, (I could walk across the room but with extreme difficulty). Through sheer determination I worked my way to using a walker, forearm crutches and then to a cane. For almost a year now I walk a mile and a half 3 to 4 times a week without the use of canes, crutches , walker or wheelchair. I eat healthy every day and have lost 20 lbs in 3 months and extremely proud of myself. I ride a mountain bike and swim. To my point now; I am still in lots of physical pain and continue to see my pain management doctor every month to get my pain pump filled. I have 5 meds in the pump currently and I listen to the doctor when he tells me what changes he has to make. Attitude is everything, seriously! Will your attitude make the pain go away, no but it will make it appear much worse. My pain doctor has sent me to a surgeon recently and I was furious. I asked why he is doing that because I will not have anymore surgeries! He stated that what I have at this point is a progressive degenerative disease and have the potential of regressing quickly where i could lose bowel and bladder control, whew, that threw me for a couple weeks. He didn't say that I will lose control, only that I might and he wanted to be prepared, have a game plan and have a relationship with a good surgeon in place "should" that day ever occur. I remember doctors 20 years ago warning me of the same thing but they never had me establish a relationship with a surgeon, this doctor did and I respect that. If and when that day ever comes I know that they will do everything in their power to help me to have a good quality of life for the rest of my life. So I ask everyone to first trust your doctor, if you cant then get one you can. Someone wrote an excellent post on here yesterday about attitude, taking one day at a time, etc., read it and live it. I hope it is printed again so that you can read it for yourselves.. There is a blue sky up there, the grass is green and you will see all that and more once again even if you are still dealing with your pain issues.