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Old 04-16-2010, 12:49 AM   #2
harmony85 harmony85 is offline
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Join Date: Feb 2009
Location: Pacific Northwest
Posts: 321
harmony85 HB User
Re: help! i have rsd!

Amanda,

My heart goes out to you. I understand your fears,loss of self and not knowing where to turn. You have come to the right place and I welcome you with open arms. This disease can be very hard to deal with,not just because of the pain but because of the emotional issues that come with it. I know your pain and understand the frustration that you have. It is so hard to see new people come on here because I have been there and it makes my heart drop knowing that one more person is in our shoes. In a lot of cases people aren't diagnosed early just like you. With that it can be hard to get things "back to normal" but you can live a happy productive life and being here can really help. There are different treatments out there and I'm glad that from what it sounds you have got a PM doctor that knows of rsd. That is a big help. With any treatment or medication there will always be pros and cons,it all is up to you and what you think is best for your body and state of well being. I can not tell you enough that you have to be your own advocate with this disease. Do the research,be open with your doctors and don't be afraid to stand up and speak your mind even if that means going against what some people may want you to do.
I personally know several people and I'm good friends with a women who has the SCS. Every ones bodies react differently to different treatments but most of the time if you do well with the trial then it can be a great fit for you. I would personally do the research,never go in blinding with this. There are a lot of great people on here who can not only answer some questions,tell you different things that are out there or things they've tried. But we all can help with the emotional side too. We all have friends and family that can be supportive but it is hard for them to understand sometimes what we rsd'ers are really going through. There is a battle raging in our bodies,constantly on the edge of losing but we have to fight and fight it head on together.
Voice how you feel,never be afraid of complaining to much here,venting,crying,just being frustrated. It's okay and we all have been there,done that. There is hope. Stay strong and don't let this horrible disease make you hide in the shadows. Take control when you can,enjoy what you can and remember that when you can't it's not because you are lazy and just don't want to,it's because you have a disease that makes it where you can't and that's a big difference. Please feel free to ask anything,anything at all.The only stupid question is the one you don't ask. I'm glad that you have come here,I wish on different circumstances but welcome.
Take care and stay warm,
Deanne