Hi everyone,
I have been a member for a good few years now but due to my particular illness I have not had much time nor remember to come online. Seems it is not just parts of my body that is not working, but my memory is also scattered!
Not to rant, I am asking this question because seeing the responses to different posts I think that there is room for a more substantive group to assist people with pain and especially with the neuropathic types of illnesses.
I have a CRPS disability. It is constant pain in the bottom of my feet and also the tops. The pain started on my right foot/ankle and then has travelled to include my left foot and both legs hands and arms and fingers.
PLEASE CAN ANYONE contact me if they feel they could help with the establishment of a support group for RSD/CRPS?
I notice that there is much in the way of support when death is the expected outcome but for people whose illness is not immediately apparent or visible, there is nothing in the way of support available.
If you feel like I do, and want to see a change in the way we are treated or considered by the public. There has to be a way to enlighten or educate them of the daily difficulties sufferers experience. Without public awareness, there is little help or understanding.
Also there is little in the way of a standardized treatment for people who may have this type of illness and for it to be recognised as soon as possible.
PAIN is no one's friend, but why wait for months to determine that all the different attempted treatments were just a waste of time?
I would really like to get some assistance and i look forward to hearing back from some of you more experienced individuals on this forum.
Thanks for your time and I look forward to hearing back from you in the near future.
From a fellow CRPS sufferer.
Jannett Graham