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Old 09-28-2010, 02:12 PM
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ali12 ali12 is offline
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Join Date: Jul 2007
Location: Yorkshire, UK
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ali12 ali12 is offline
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Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
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I'm so sorry to hear about your pain and suffering, Navysniper7 !

I have had RSD/CRPS since I was 12 years old (i'm now 15). It started in my left leg and has since spread to both arms and my back. Like you, I had a nerve block but it didn't help and made things a LOT worse. Before I had the block, I could walk, albeit very slowly and on crutches. After the block, I couldn't walk as I had lost all coordination in my limbs. I was left wheelchair bound for 13 months and had to go on an intense PT course to learn how to walk again.

As well as the RSD, I have other conditions including Hypermobility Syndrome (my joints bend further than a 'normal' persons), Dystonia (this is a complication of the RSD and my left leg is permanently rotated out to the side), Mycolonic Spasms (my leg shakes uncontrolabley), Fibromyalgia and have recently developed Syncope (I pass out on average 25 times a day !)

Like you, in desperation, I begged my doctors and parents to amputate my leg. As the others have said, I was told that it wouldn't help as the problem wasn't in the limb itself but in the nervous system. I was told that i'd still have pain even after amputation and that although it was used centeries ago, it isn't considered a treatment for RSD anymore.

I know how scary it is dealing with all of this so if you ever want to talk, I am here for you! I have lost most of my friends, can't go to school (i'm home tutored) and not many of my family members except mum understand what I am going through which really hurts. Thankfully I have a great boyfriend who I have been with for 7 months who is really supportive and has health issues of his own so that has helped but it is still really lonely and depressing at times.

Please don't give up hope (I know it's easier said than done trust me!)! As the others have said though, medical research is advancing into RSD even though it might not feel like it at times. You will find a medication / treatment that will help you at least somewhat. Yes it will be a struggle and yes there will be a lot of ups and downs but it will be worth it in the end!

Take care and i'm here for you!
Alison x
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Last edited by ali12; 09-28-2010 at 03:58 PM.
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