My PM decided that my nerve block was going to be used as diagnostic only. It worked for two days and stopped. We also believe to have youth on my side as well as date of onset. (28 yrs old & 12/2006 onset). It is definitely much better to be aggressive about your treatment as well as to try and remain as optimistic as you can about your situation. If something goes wrong in my home because of my disorder I try to find the positive.

For example: I homeschool my son. I worked at night, daddy works during the day. Well now since working hurts me and the meds make me non-coherent @ work, I stay home. The positive spin is this: more time spent with my son (watching cartoons while laying in bed when I am in a flare up), more time spent with my husband because I am not running out the door as he gets home so that I can go to work.

Please take from this board what you can. Please offer this board what you can. Many of us know your daughters pain and agony. Many of us mothers know your pain and agony. My mom recently told me that it was hard for her to see me in pain because she can't do anything about it, she can't make it go away for her baby. The little things she does though to make my life that much easier when the pain is bad is enough, take it away. It may not go away, but I don't have to do that strenuous thing that would have made is so much worse.

You should seek out some counseling for your daughter and even yourself. You need to find someone who you can turn to when you feel like you have just had enough.

Hugs. Sorry it's long.

Hi all
So sorry for not replying but we have been to so many hospital appointments, and my daughters been in hospital for quite a long period of time. Thanks for all your support, you are reallly helping me and Alison through this.
Will try and post a longer reply shortly.
Many thanks and please accept me appologies
By the way, how are you all getting on??

Hi,

I just wanted to give you this article. It is specific to children with RSD.

http://www.rsdrx.com/rsdpuz4.0/puz_11.htm

An answer to your question as to how we're getting on, for me, it's to take it a day at a time and get as much rest as I can and not over do.

Eh, I had a good day, did too much and will definitely pay tomorrow. That is my life

I wish I had a better bed though.

According to one of my numerous doctors, the chances of a complete remission drops precipitously after two years. In younger people it can go away and disappear for all practical purposes. Older persons who experience remission are always on the verge of it returning. Even those who have remission it often will not be complete.

Most sufferers, I believe, are searching more for a plateau where the symptoms are as manageable as possible.

Age of onset and lenght of time till treatment are critical to good outcomes.

Hi.

I agree that we must be our own advocate. I also refer to several RSD websites but only view the information as "general" in nature. I believe that it is extremely important to have a good general physician and a specialist involved in your care in order to have the best possible outcome. I also found that counselling was extremely helpful to me when I was first diagnosed.

There was a survey distributed and completed (last year I think) by RSD victims. The questions and results can be found on the American RSD Hope site, http://www.rsdhope.org/survey/results.asp
This is the most recent survey that I am aware of.

Take care,
Miss Irie