Quote:
Originally Posted by sdlevitt
My mother talked to an adult Neurologist who is a cousin and he mentioned that a lot of dr's are putting unknown pain and injury into the catagory of "RSD" and only about 1/2 the cases are real RSD. could it be possible to have something else going on where touching hurts her foot? Noone has wanted to do an MRI, so we never got confirmation about that the original injury.
What is very interesting is that she played outside all day yesterday. She was on her heel, but she played in leaves and put her foot in the 3ft pile of leaves. Yet this morning, it was all about "my foot hurts" i dont want to wear shoes" "I need my crutches". She refuses to give up crutches while in school. That I fully believe is all about "everyone will think I was faking if I dont have crutches". I also think that her pain sometimes is also about that as well. I dont know what to believe any more .... She feels pain; I know a some of is now pyschologically based at this point, as well as real.
The reason for a lot of this doubt, is last night, after she went to sleep, and was in deep sleep (not morning sleep), I manipulated her foot. I even put it under the covers. She did not wake up. I thought RSD is part of the involuntary nervous system. Wouldnt pain have woken her up? When I questioned her, she stated she dreamt that her foot hurt. LAter on , in the night, she did move the foot off the bed again.
Someone else relayed a story about how they tore a ligament and even light touch hurt them. PT was still required, but it again made me question the lack of MRI in this diagnosis.
I read all your stories and feel for all of you. I just want to make sure if my daughter is part of this "club" or not. I feel like a faker myself, if this is not the case. you have all been wonderful and so helpful!
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When my RSD first started, my mum was able to manipulate my leg when i was asleep. My mum was like you at first and thought that I may be faking it because I couldn't even move it when I was awake but when I was diagnosed, my Pain Management Doctor was great and explained that when you are asleep, your nerves sort of 'switch off' which is why, you are able to do some things that you aren't able to when conscious. You can't move my leg at all now when I am asleep as it locks out to the side in a rigid position - my PM Doctor thinks that is because my RSD has progressd and got worse since I have been diagnosed unfortunatley.
You often find with RSD that you are able to do something and then you pay for it afterwards. Someone else on this forum has their signiture line set to 'For every day I play, I must set aside a day to pay' - that is sooo true!! I, and many others on this forum are often able to go out shopping for explample one day but for the next day/few days, we'll spend it in bed because we are in that much pain and too exhausted to do anything. My PM Dr told my mum that when we are out having fun, our bodies release endorphines so it sort of 'masks' the pain a little but as soon as we stop enjoying ourselves, the pain gets worse again - I guess that is true.
If you are concerned that your daughter may have been misdiagnosed, please try and get a second opinion and beg for further tests to be done!!!! My mum got me a second opinion when I was diagnosed, even though I was told by my PM Doctor that I was the first case he had seen that had all of the symptoms of RSD.
PLEASE, don't give up on your daughter - no matter what the issue is!! She needs your support and to know that you love and care about her no matter what. It's a very scary time when you have been told that you have such an awful condition so she must be really scared right now, especially with her age.
Does your daughter see a Psychologist at all? Maybe that would help her a little?
Please keep us posted when you can and don't give up! I'm here if you ever need / want to talk.
Alison.
