Living with RSDThis section is a place to share stories about Living with RSD Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download Under Attack 
My RSD started with the second surgery on my foot. The day after the surgery I called my doctor and told him that the splint on my foot was tearing me up. I couldn’t see it because of the splint and all the gauze from the surgery but I just knew that it was cutting my foot to pieces. So I was told to remove the splint on a Friday afternoon and wear my surgical boot that I had and come into the office first thing Monday morning. The doctor removed the gauze and there wasn’t a mark on my foot anywhere, other than the surgical site. So they put my foot into a cast and sent me on my way. Well the cast didn’t work either. It felt like it was tearing up my foot, and it was extremely painful. Back to the doctors that week and they removed the cast and stuck me in a boot. The foot needed to be immobilized and that was the only thing they could do for me. The whole time wearing it, I was in extreme pain, and just the slightest thing touching me cause pain and irritation. I remember going back to the doctors for a post-op visit and telling him that the nerves in the foot have come alive and they are 100 times more sensitive than ever before. Even the weight of a sheet was unbarable. This went on for about a year and my orthopeodic doctor was at a loss, because what appeared to be healing fine was becomming more and more painful as time went on. Then the swelling and redness started, and it wasn’t typical for the proceedure i had done during the surgery. Still no clue why i was in such pain, the doctor said I just needed more time to heal. The pain was no longer in just my foot and ankle, it had moved to my hips and lower back. I was taken to a spine specialist and RSD was mentioned by my case worker, but put on the back burner by the spine specialist. He thought that all the pain i was having was just from limping for so long and it would eventually work itself out. Months had passed and instead things getting easier for me, they got harder and harder. The swelling came on more frequently and i was noticing my skin was reacting to hot and cold in different ways. I went back to the ortho for yet another appointment and he noticed that not only was the surgical foot swollen and red but also the other foot and lower leg was doing the same. He said that wasn’t normal and had nothing to to with the surgery and he suggested I go have a complete physical to check my heart, lungs and other major organs to make sure that it wasn’t from one of those. Everything there checked out fine. In fact I was as healthy as a horse, but I was a gimped up horse. So my case worker made an appointment with a pain management doctor and when he saw how swollen and discolored my legs and feet were he knew right away it was RSD Life’s been hell since that second surgery, and everyday is a challange. I have remained optimistic as I could through all of this, but I find myself getting very frustrated over the little things that I just can’t manage to do, no matter how hard i try. Simple things that we take for granted. Not only is the RSD in the foot that had the surgery, but it has spread to my other foot and leg, and now it is moving into my hands and arms. I went through a series of nerve blocks that did help, but just for a short time. Then the doctor told me I was a good candidate for a spinal cord stimulator. I went through the trial, and it did seem to help a little, so in January of 2008, I had a Spinal Cord Stimulator implanted. The goal was to give me up to 50% pain relief, and so far its not even close to that. I continue to struggle just doing things to get me by, and I don’t do anything extra anymore. Anything that requires me to stand walk or sit for any period of time doesn’t happen anymore. It’s been 2 yrs since my surgery and since I first felt the unusal pain that began this nightmare. I was a very active person before this, and I feel as if my life has been taken from me. I refuse to sit and allow it to consume me, and I do have a decent day now and then and I do try to keep myself moving as much as possible, but for every good day I have, I have 3 bad ones. I suppose it could be worse? But anyway I could go on and on about this, but I won’t. Below is a few little poems I wrote during one of my really bad days, I think some of you might be able to relate to this, thats why i decided to share. Mind-vs-Body When body battles mind, frustration sets in… RSD/CRPS What are you, that has control of me How did you get here, and why do you remain You are not welcome here, get out of my home
July 2008
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