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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 06-16-2014, 07:27 PM   #1
    RSDbionicwoman
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    Hi Everyone, I'm New!

    Thought I'd say hi! I have the "Monster" , (RSD) since 2005. guess that's 9 years now. I'll post more latter.
    RSDbionicwoman

     
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    grandmom1955 (07-16-2014)
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    Old 06-16-2014, 07:47 PM   #2
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    Re: Hi Everyone, I'm New!

    Welcome to the boards. You will find a lot of support and help here. Sera

     
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    Old 07-16-2014, 07:39 AM   #3
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    Re: Hi Everyone, I'm New!

    Hi. I'm new too. I was diagnosed in January with RSD in my left foot. It would be so great to be able to talk with someone who knows how it feels, who is going through all the emotions, ups and down, etc.

     
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    Old 07-16-2014, 07:42 AM   #4
    grandmom1955
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    Unhappy Re: Hi Everyone, I'm New!

    anyone feel like talking?????? just had my fifth round of lumbar shots yesterday. I wear a boot on my foot, I'm not able to walk very much, I limp, my life has changed drastically -

     
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    Old 07-16-2014, 12:27 PM   #5
    painman2009
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    Re: Hi Everyone, I'm New!

    Hello to both of you... sorry we had to meet here with this beast. I've had it since 09. and I am still trying to find my way through this... anything I know I'm sure I've shared already but would be happy to do so again.. welcome and god speed

     
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    Old 07-17-2014, 05:50 AM   #6
    RSDbionicwoman
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    Re: Hi Everyone, I'm New!

    Hi Grandma1955, I had 7 Nerve Blocks that gave me temporary relief ( 6-8 hrs up to 3 or 4 days - a week at most) BUT relief it was! After the 7th one I said no more. Then trying to get the pain clinic to understand "I Was Not Drug Seeking", (I didn't want pain meds) just relief from the Pain was a battle. Lyrica was a God send but I gained over 60 pounds. Then I got a Neuro-Spinal Stimulator. Not pain free but I can block a lot of it.

    How long have you been wearing the boot? I ask because that was one of the contributing reasons for ME in my developing RSD. I wore the boot too long.

     
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    Old 07-17-2014, 06:15 AM   #7
    RSDbionicwoman
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    Re: Hi Everyone, I'm New!

    Hi Painman. So is this a pretty good site for RSD info? I just had my Neuro-spinal Stimulator replaced. The internal battery reached it's EOL. Now I have a Rechargeable Internal and It's MRI Compatible. I charge once or twice a month(hence the name - RSDbionicWoman). Do you have a Stimulator?

     
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    Old 07-18-2014, 10:09 AM   #8
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    Re: Hi Everyone, I'm New!

    Which brand of stimulator do you have? I started out with Boston Science Procession in '08. I had problems with horrific pain at battery site. The VA decided to give me an upgrade with 16 leads (St Jude's). Unfortunately my CRPS was in lower left leg and only 2 1/2 rows reach that area. The rest hit my right side. I had an accident right after surgery. I was laying in bed an a bee got caught in the covers. In between me trying to get out of bed and being stung in both legs I feel out on my back two weeks post surgery. I asked but they said I'd be alright. Who knows now. So now it needs to be replaced again. I've seen a pain management doctor outside VA and he said the new Boston has 32 leads and might be the best solution since my pain has moved to my back and my hips. I'm not sure if it's CRPS but can't imagine anything else being this painful. He's going to start sympathetic nerve blocks to hopefully stop it from settling in. I pray it works. Has this worked for anyone else??

     
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    Old 07-19-2014, 09:20 AM   #9
    RSDbionicwoman
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    Re: Hi Everyone, I'm New!

    I can't imagine falling out of bed that soon after surgery. You are lucky that the V.A. did this type of surgery. (husband has V.A. ~ it sucks) I have a Medtronic. I'll get back to you, company stopping by.

    .

     
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    Old 07-20-2014, 05:59 PM   #10
    MiaBelle
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    Re: Hi Everyone, I'm New!

    RSDbionicwoman~ I know it's awfully hard to work with the VA. My CRPS is service connected. It took me forever to get them to give that to me. The only problem is when I had to have the stimulator surgery or other treatments they make me drive five hours. My last stimulator operation I had staples all down my back and on both hips (from removing old and putting in new). They kept me in hospital overnight and then sent me home. When I got home my pain was so out of control I was throwing up. By the time I got to the hospital I was so bad my dr wanted to hospitalize me for a week. They don't understand how much they can hurt the patients in these situations. I've done many procedures in the hospital 5 hrs away, but it costs more than they give you. I'm in so much pain I begged my dr to let me see someone in town this time. It's amazing that they want to find out what's making me worse verses just trying to inject me. ���� I'm so blessed to have landed in his office. If my CRPS is spreading (which I think is a good possibility), he's going to try and stop it. ����

     
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    Old 07-22-2014, 09:14 PM   #11
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    Re: Hi Everyone, I'm New!

    Quote:
    Originally Posted by RSDbionicwoman View Post
    Hi Painman. So is this a pretty good site for RSD info? I just had my Neuro-spinal Stimulator replaced. The internal battery reached it's EOL. Now I have a Rechargeable Internal and It's MRI Compatible. I charge once or twice a month(hence the name - RSDbionicWoman). Do you have a Stimulator?
    I have found this site to be useful source of information, especially when making those hard decisions,, you will get a variety of responses but like surveys you decide on a percentile.. also with the mixture of RSD sufferers length of time they have had it, if it spread what new treatments and the different states and countries, you will have a lot of new information to go research for yourself.. and its great when you want to vent too , cause we all get it...

     
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