Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 12-02-2012, 10:11 AM #1
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Wow
Thank you so much for the replies, michael I really appreciate the time and effort you must have put into the reply you gave me. I am currently working through the links you have provided, the ones I have read have been very intersting. Thank you for the information on physicians but I live in Australia so it would not be relevant to me. I am glad I am not alone in this. It has been quite distressing, I was diagnosed when I was 7 years old and don't remenber life without crps but I had always been highly functional I always worked full time and participated in sports, the condition really didnt hold me back. So as of a year ago I was pretty much normal. In the last year the changes have been alarming and I do think the cognitive problems are very hard to deal with, another thing which keeps happening to me is I will start to speak and what I hear in my head to what actually comes out of my mouth is very diffrent it comes out in a jumble of words, im not sure if anyone else has had this.As for the memory issues and confusion I saw my general physician last week who sent me for blood tests wanting to rule anything else out before attributing it to the crps. Luckily my GP is very supportive but I have had a lot of issues with my specialists mainly because I refuse medication. I have had all medications avalible bar Ketamine infusions, I seem to have a very low tolerance of medication and will always develop side effects ranging to mild to very servere and any relif i get from the medication is usally cancelled out by the side effects. Due to this my specialists will only see me every 6 months and just send me on pain managment courses, I have lost count of how many I have attended, each cover the same things and in practice do not work for me. I think from reading the other comments on other issues I share the same issue in that I do not think my specialist really belives me. I can have a pain level of 8 but have no outside symptoms of colour changes swelling etc etc, but another day the pain can be mild but my leg and arm will be very swollen. I know I am going off topic, apologies. Anyway I will know by tomorrow if it is anything else causing the memory, confusion issues and will hopefully be able to move forward from there, thanks again for the replies.
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fmichael (12-02-2012)
Old 12-05-2012, 11:07 PM #2
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Have just returned from my Dr, My results showed very low iron in my blood so I have been sent for more blood test. One thing I have to say is it is nice that my Dr will not instantly atribute the problems I am having to crps and is looking into other reasons before saying it is the crps. I have a feeling it is but I have been used to Drs who when I say something is wrong will instantly say it is because of the crps. So it is refreshing to find a Dr who actually looks past the condition to other factors. I also had a wonderful nurse who was so careful and caring when taking my blood. Will post back with any new developments
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Old 12-06-2012, 10:42 PM #3
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An update
My Dr does not believe the low iron is the cause of my memory loss and confusion. I do have to have another blood test for coeliac disease as my son has it and I may too as although I am mainly on a gluten free diet for health reasons and to support my son I do still have toast in the morning using normal bread, again though my dr does not think this is related. The most shocking thing of all is that my Dr pulled out a stack of paper he had researched and printed off the internet and told me himself and a colleage had spent a few hours looking into the cognitive effects of crps on my behalf and wanted to send me to a neurologist and he was going to contact ones in my area who were educated in the effects of crps. Bere in mind this is a general physician and not a specialist. I did the most rediculous thing by bursting into tears, i think it was just relief of finally finding a Dr who believes me and will go above and beyond to help me. He told me he was on my side and would support me anyway he could. It was a wonderful feeling. I am going back next week to see him so he can send me to a neurologist. I have never seen one so dont really know what to expect so if anyone can give me advise on what may happen in the appointment i would appreciate it
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