I was wondering if anyone else has felt like they are grieving because of CRPS/RSD. I feel as if I have been grieving the loss of my life before this condition. Maybe it is because I am/was a hospice nurse and I am very familiar with the stages of grief.

Honestly some things are shallow for example, the closet full of shoes I am unable to wear. I never realized how much I would miss walking my dogs and talking with my neighbors along the way. Or being able to have a long, hot shower. Or all the clothes I am unable to wear. Being able to drive to the grocery store by myself and do my shopping. When I am out in public I feel like I spend more time trying to protect my legs from being touched than enjoying myself. For many years I have used nurse, as a way to describe who I am and honestly that has been the hardest to give up.

I do have a wonderful support system, but as much as the say they understand there is no way they really understand what it is like everyday. That is why it helps so much to have this site. Knowing that I am not alone in fighting this battle that there are others that truly understand is encouraging. Reading the stories of those of you who have faced this for years and are still fighting gives me hope. Thank you for allowing me to express myself and thank you for giving me something to look forward to.

When were you diagnosed? I certainly felt that way at one point, but it was a long time ago.

You do learn to adapt physically and emotionally...but it can be a long journey.

If all you can manage is taking your dog 1/4 of a block, then do so. If you can do it a few times a day, all the better. If you can slowly increase, great!

Thank you so much for your response. I was diagnosed in January of this year. They suspected it in December but wanted to rule out any other possible conditions.

I feel positive and optimistic most days but there are a few days here and there when I focus too much on the negatives. I have to remind myself to be grateful of what I do have. It helps to know that I am not alone, just knowing there are others who fight this monster everyday.

You bet there are times of grief when we are DX'd with something. It isn't just RSD, it is the whole of medical problems. When they are severe, no matter the condition, grief plays its roll. Some times part of that grief keeps with you even if you are over the worst of it.
I lost my long blond hair due to alopecia in my 20's. I am now 64 and I still miss my long blond hair. There still is a grief for what I lost.
Keep that close circle of friends and support. It does help when we hurt. Glad you found Neuro Talk. You will find many loving and supportive people. ginnie

I totally understand how you feel. We all go through grief and dealing with the losses we have. However, I am at quite a peaceful place with all of this now but it took me probably 6 years to get to this place. I find it very difficult to sit normally because I also pudendal neuralgia and it is difficult for me to stand for long periods of time because of the pain that comes on when I stand with CRPS in my legs. I know the doctors, nurses, and other individuals are just trying to be sympathetic, compassionate and understanding when they comment to me that they feel bad that I cannot sit and I'm standing and constantly changing my stance. I do think they feel helpless, especially because it is so difficult for me to sit, and they have no other way to show me how bad they feel for me. At one point it was helpful for me but now I've gotten past that and wish they just wouldn't say anything because I have come to an acceptance of this is the "new me." For me, knowing there are so many others out there like more as helped me come to an acceptance of the changes in my life. Also, everytime I see a young child with a disability I remember that I had a normal life for over 40 years and they never had. That helps me keep things in perspective. It was process to get to this place.

Thank you all so much. I cannot imagine how horrible it must have been before all the research and online support.

Some days I find it hard to take things day-by-day and I have to break it down hour-by-hour. It is weird how going through this makes you appreciate the little things that much more. There are times I really have to search for the good things in life but they are always there.

Totally understand!! I was a police officer for 13 years and lost my career. I have CRPS in my left arm and neck so no more running around playing cops and robbers No more horseback riding, no more cake decorating. I am slowly learning to move on and let go of that life but I am determined to keep going and build another life with new hobbies. Hang in there... there are a lot of us in the boat with you and we will be here for support.

I know how you all feel I still am grieving after being diagnosed 8 years ago it happened just after I graduated college and thought I was going to start a life my life, instead I need help with everything, I don't know if Iam just grieving of the rsd as of 09 I have been diagnosed with a new disease every year or finding out its getting worse or spreading. I know I will never be the same person and dealing with difficult doctors doesn't help me feel any better as of now I have lost blood flow to some of my bones are dieing and looks like more bones are doing the same. Nothing seems to go right so Iam still grieving.

Samantha

I know all too well where you are coming from. I was originally diagnosed as a teen and went through many years being sad because "i can't" in my late 20s it just because a part of life and was in one foot and that was life. Until this past December when I had to have surgery.....I miss my life every day. I am sad, bitter, angry, on edge, hopeless, etc all of the time anymore. I enjoy nothing really because nothing is the way it was. I cant work, I can't drive many days, I can't focus, I can't remember things, I cant be nice because I'm so exhausted and have zero patience, etc etc.....I'm very stuck on "I can't".....I wish I had words of encouragement......however, one of my dear friends has MS and he is much worse off than I....I need to be grateful and I know it.

It is so encouraging to know that others feel the same. I look up to those of you that have fought this for so many years. It makes you feel that you are not alone. I have wonderful family members and friends and they mean well but it's not the same as someone who has CRPS. So I thank all of you for sharing.