Alisons mum here
We are just back from our OT and Physio appointment and it has raised a couple of questions
Firstly it has been noticed that Alison is extremely tense and finds it extremely difficult to relax and switch off
This is not helped by the fact that she is low toned and has hyper-extending joints (ie she is double jointed)
The Physios and OT have mentioned that because Alison is so tense it may be making a lot of the RSD problems worse and also that the spread to her arm may not be RSD but a build up of tension (although her Consultant still feels the arm is showing early signs of RSD - eg burning pain, dystonia)
I have to agree that Alison is exremely tense - in fact she is like a coiled spring most of the time ready to snap at the slightest problem
The issue is that the tension has increased dramatically from the day Alison was diagnosed, a lot of which in my opinion, is to do with the fact that no-one can guarantee her when, if and by how much her illness will improve
I have been advised that reading these boards may not help her, but she is a well-educated and opinionated girl who has a desire to know as much about her illness as is possible and does not want to be "sheltered" from the truth
The problem is that at 12 years of age she may not be emotionally mature enough to deal with the information she is presented with, thus adding to the tension
Further to this there is also the question as to whether the tension is another side effect and has no direct bearing on the balance problems and her pain
At the moment we have not managed to find a drug which will take either of these problems away and have tried most of the "usual suspects"
Has anyone else experienced similar problems with a build up of tension and if so how did you handle or overcome it
Many thanks
Andrea