As Abbie said, everyone is different when dealing with this disease and no one can tell how long you will be able to work for. Some people have to pack in work straight away whilst others continue working for years and some people, even forever until they retire!! I think it really depends on the person and how bad their symptoms are - you tend to find that if a persons symptoms are under control more, they are able to work more whereas someone who is in a lot of pain all the time and in a wheelchair etc might not be able to work at all.

I am too young to work (i'm 14) but do attend school and find it really difficult. I go to a school centre at the moment for children with disabillities etc and it has made things a lot easier for me as I don't have to do any walking and am just sat in one place all day - although I can get around and move whenever I need to. I am just now starting to go back to mainstream school however I am only going on a Friday at the moment as I don't think there is any way I would be able to cope full time ... we tried it once before and I came out in a major flare. I like it at the school centre but the teachers can't teach to the level that I am at so I sometimes get bored and the teachers said, if at all possible, it would be better if I start going back to school on a part time basis.

It seems to be going OK so far. I have what is called a 'Statement' over here in the UK which means that I get additional support and someone can carry my books for me if I have any. I'm also allowed out of lessons 10 minutes early so that I don't have to be in all of the crowds. I go home for dinner at the moment as it lasts an hour and I can't stand that long. I am hoping though to start going more often and build it up as and when I feel up to it.

As i've already said, I really think it depends on a lot of things and how good and understanding your employer is. Some bosses, teachers etc will be very understanding whilst others wont be. I have come accross all sorts of teachers whilst dealing with RSD - some are OK whilst others can say some nasty things to me if I lose concentration etc. I lose concentration really quickly from the RSD and had one teacher in September tell me that there was nothing wrong with my brain and that it was my leg that was the problem!!!! Some people just dont understand unfortunately and that makes it very difficult.

I hope all goes well for you and you are in my thoughts. Please keep us all updated when you can.

Best wishes,
Alison.

Thanks for all the info, I really do appreciate.. I figure my pain management doc is pretty good.. so far so good. I am 45 and have worked shift work 12 hours nights and days and the 12 is a little long for me already but I will work till I can't anymore.. Thanks again Alison... Lisa

Dear Lisa,

I don't know what kind of situation you are in with your employer, but if there is any possibility that you can take advantage of any type of modified/disability work program it could be very beneficial to you as you learn how to manage your RSD diagnosis & symptoms.

If you keep pushing yourself and work till you drop you could end up damaging yourself further on down the road, ending up unemployed and out of options. Managing rsd symptoms requires a lot of patience from both you and your employer. Learning how to pace yourself, to keep it moving but to know when to back off so you won't flare yourself up can help to keep you working and in the game.


I wish you well.

MsL