RSD Outreach awareness

My Life With RSD...Valerie's Story

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My Life With RSD...Valerie's Story

Post  byrd45 on Sat Nov 01, 2008 9:24 am

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From: cuttingmachine (Original Message) Sent: 2/16/2007 4:53 PM
Hi everyone,
My name is Valerie and I have had RSD for 7 yrs. I have never discussed having RSD with anyone else but family and doctors. My brother suggested that I should do this and that maybe this could help both physically and emotionally. So here is my story.
I sprained my ankle in the parking lot of the hospital where I worked. It was a bad sprain and I was in a boot cast and also a regular cast. When I started physical therapy the pain was pretty bad and the swelling wouldn't go down. The physical therapists I had used ice alot and the pain , discolorations on the skin of my foot , ankle and lower leg was getting worse, and I was having alot of burning pain. As physical therapy continued the pain, discoloration, and burning was moving up to my knee. My doctor finally after almost a year sent me to doctors that diagnosed the problem as RSD. I had no idea what this was but I went on the internet and found some stuff about it. I started going to pain management and over the course of 5 yrs I have seen 4 different pain management doctors. I ended up having to quit my job and move back to the area where my family lives. I have had alot of procedures and surgeries and so far I haven't had much relief. I was taking oxycontin but I am now on dilaudid. I am also taking neurontin, amitriptylin, and I have a morphine pump. I have also tried a dorsal column stimulator but that was making it worse.
So now my pain management doctor is talking about amputation. I am not sure what I am going to do but the doc wants to try one more thing with the stimulator before I decide what to do. I am just getting tired of this whole thing and I am tired of being in the hospital every once in a while.
I am having problems with ulcerations and infections for 3-4 yrs now. I see a plastic surgeon/wound care specialist and he might do a skin graft.
So I hope I didn't ramble to much or sound jumbled in my writing but my thoughts are just flowing out.
I hope to be able to use this RSD group often and I hope to hear from others that are in the same boat as myself.

Thanks for listening.

Valerie



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From: byrd45 Sent: 3/20/2007 11:51 AM
Hi Valerie,
Thank you for sharing your story with all of us! You sure have been through your share of pain and anguish because of RSD. Are the doctors still considering amputation? I was wondering if they are considering this because of all the infected sores you spoke about? This really surprised me since amputation can spread RSD further. I would definitely seek a second opinion before following their advice since you wouldn't want to have the disease flare and spread further than it would have without amputation. I haven't heard of this being used anymore for RSD unless there is a problem in the limb where it is infected(gangrene)and it is definitely a last resort. They used to cut peoples limbs off when they had RSD before they knew how to treat it hoping if they cut off the affected limb it would go away. Unfortunately all it did was cause phantom limb pain and spread the RSD further. I am not trying to upset you but I thought you had the right to know this information that I wasn't sure if the doctors were sharing with you.I don't blame you for feeling tired of being in the hospital and know how that feels mysel , but just wanted you to make as an informed decision as possible. Either way I am sure you will make a positive decision that will benefit you and help you to feel better in the long run. I hope everything goes well so you won't have to be in the hospital as much.
Love,
Robyn


Last edited by byrd45 on Sat Nov 01, 2008 9:32 am; edited 1 time in total (Reason for editing : change title)
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