Quote:
Originally Posted by Gymjunkie
Thank you for the replies so far. I am not on any medication yet for these movement problems. Until the process of going through various further neurological tests has been completed, nobody is prepared to prescribe anything even for symptomatic relief. I have no issue with this - if there is something else wrong I would want to know. Although it is really tiring, until the right tests are all done by my neurologist to rule any other conditions in or out I can wait - it doesn't help if symptoms are masked by drugs.
I am interested to understand why docs (including one so-called CRPS specialist) can say that its not possible for CRPS to cause such severe or widespread movement problems when it seems to me that there is both reputable, published medical and annecdotal evidence to say that it can.
That is why I am so keen to hear from anyone else with expericence of such severe and widespread problems where they either believe or have been told that CRPS is responsible. It makes you feel as though you are going mad when they seem to want to ignore the possiblity in spite of the evidence out there.
It would be nice if they could get a move on with the testing right enough!!!
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Sure does suck what you are going through, but can we ever relate. I have the same problems and have had them for about 6 out of 8 years. The docs that are telling you it cannot be widespread are NUTS! RSD/CRPS will mirror itself to other limbs. I started 8 years ago with RSD in my left hand and arm. Now it is everywhere. And yes I too have been told it could not spread. The so called Doctors have yet to walk in our shoes I suspect.
One thing you could ask them is if it could be peripheral nueropathy? This is a nerve disorder that can follow RSD and it is the worst. For me it feels like I am walking on glass most of the time and my legs are in constant turmoil. They never stop aching and spasm like there is no tomorrow. If I have learned anything over the last few years than it is to question everything, ask for proof when they disclaim or claim a diagnoses than always seek a second or even third opinion if necessary.
Doctors like to think that they have the "Midas" touch. And when things don't quite go the way they hope they will than try to rationalize it as the patients fault. i.e. faking, seeking attention, not following doctors order, etc.
Please hang in there and I know that you will find relief and hopefully soon. Stay here with us and we will help you through your bad days.
Chin Up... Mark
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"MY MOMMA SAID THERE'D BE DAYS LIKE THIS!!!
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