Hello I am a mid 50 year old woman living with RSD now known as CRPS for 5 years and there seems to be no end to it. My complaint started with a twisted ankle and subsequent fluid build up. Next, after 3 steroid injections - those needles are craaazy! - I underwent surgery and that is when I started to experience pain with fire attached to it. I have never screamed so much over anything not even at the birth of my son! I had the added burden of "proving" it was not just in my mind and that I was in pain, unbearable pain.
Life took on a different meaning from 3 years on crutches to 2 years wheelchair followed with sensitivity therapy and now walking with a cane. Most people look at me as though I am a fraud as on the surface I look OK. But they cannot know the extreme pain and extreme changes with weather and emotion that I endure. I sometimes go without food because I cannot prepare anything.
Standing for any length of time varies with me sometimes I can make half hour and others no more than five minutes and I am in discomfort. I have tried several times to get disability assistance and have been rejected on account of whatever decision they decided I did not fit into.
My RSD - Yeah, I had to learn to own it, started in my right ankle and foot and spread through to my left ankle and foot both hands and in particular my fingers. My lower back and my left shoulder and neck into the lower left mandible. I have been searching for help -support of any kind or sort to help me fight the behemoth social security services. I sometimes need help to take care of my personal cleanliness and getting about not seemingly spending my life in my room. Oh I am in shared accommodation and I have stairs to manage day in and out. It is a miserable existence and I truly believe I am depressed.
My GP said they try to assist their patients but to date I have not been referred to a pain management clinic and yet I am on morphine. I really don't think this works all the time as I often have to resort to oramorph along with regular paracetamol - much more than I should take but who cares? Who cares when pain is your constant?
Please someone help me to understand how you cope with your RSD/CRPS. Do you get aid? do you have a carer? What about shopping do you have someone to help you and to prepare meals? Do you have special equipment for getting in and out of the bath as well as bed? I sometimes get so dizzy that I fall right over from a standing position. I have lots of bruises to prove it.
I would really like to hear back from anyone as I feel so alone and lost I think sometimes I just want to chop off my feet to get rid of the pain. Do you think I am strange thinking that way? Well constant pain will do that to you....all the time. It even hurts when I draw my breath!
I also would like to know about accommodation, I do not own my own home and I am living in a shared house - a regular house as the Council did not have a suitable place for me at the time I had to move I settled for something private. It also was very difficult to find someone private to accept a disabled person into their home who is on benefits. There are so many ifs and buts that I feel there is a real need for accommodation for people like myself. I would love the opportunity to start up something but it takes time and depends on how I am feeling from one day to the next as to whether I can work at anything with any degree of success.
I know I have gone on a lot but please forgive me as I need help and feel that a support group is more likely to extend help in terms of their own experiences. I look forward to hearing back from you.