Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 11-14-2015, 10:08 PM #1
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PurpleFoot721 PurpleFoot721 is offline
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Location: Near Oscoda Michigan
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PurpleFoot721 PurpleFoot721 is offline
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Join Date: Sep 2015
Location: Near Oscoda Michigan
Posts: 469
8 yr Member
Default Will be away for a short time & looking for opinions

Hello everybody,

First I want to thank everybody here that has provided the support, information, opinions and experiences to not only for myself, but for everybody on here. This is a wonderful forum filled with a whole lot of great people supporting each other. I am so glad that I found all of you.

Unfortunately, I will be without the internet for the next week or so, so I will not be able to make too many replies. I will check in from time to time over my data plan, but that is very limited as I am still using my phone through the company that I work for. I am greatful that my dad, who owns the company, allowed me to stay on his plan while out of work over the last several months in exchange for 10-15 minutes a week it takes for me to do payroll and corporate taxes through the VPN and RDP that I set up before leaving in January.

We are making our big move this week from our house in Detroit to the small rental house that my husband and his ex-wife bought long before I met either of them, they are still great friends and she has warmed her way into my heart as well. We have been slowly moving since late June but it is time to finally pack up the rest of our everyday things and head to Warren, a suburb just north of Detroit. It was a hard decision to make this move, since the new house is so much smaller, but it makes things safer for our guests, and my husband and I. Although we live in a relatively nice neighborhood, it is still Detroit and we hear gunshots on a daily basis, some close but most off in the distance as well as all the other violent crimes that take place around here. On top of that, the new house has no stairs to try to navigate on my crutches. It means that we will be able to go for walks with our dog and many of the other things that we don't feel safe doing here. The move has put a great stress on my husband as he is doing most of the work, leaving me to sort through things to determine what to keep, what to donate, and what to throw away. I feel so bad that I can not help much more than the little things to get this move done.

Before I leave for a short time, I want to ask your opinion of where the CRPS actually began. It has been on my mind for some time and all the doctors that I ask just tell me they don't know. Here is my whole story:

In June of 2003, I fell from a roof and landed on an uneven section of concrete. When I got back up and looked down at my right foot, I was looking at the sole of my foot. When I got to the hospital, all of the staff cringed at how painful it looked. I was offered morphine several times, but I refused every time. When they finally straightened it and were feeling around trying to find all of the fragments of bone, my body finally said enough and I passed out. When I came to, I decided to finally allow them to administer morphine. After a six hour surgery, performed by the head of orthopedics at the 4th best orthopedic hospital in the country at the time, I woke up with 3 plates, 7 pins, 13 screws, a roll of wire, and an external fixation device to hold everything together. I had a trimalleolar fracture and I shattered my talus so bad that they were almost certain it would collapse. With the help of a great PT who used gentle manual therapy and multiple blood flow techniques, we beat the odds. After 2 1/2 years of pt, I finally felt that I was not gaining anymore from pt, so I said goodbye to my PT sometime in December of 2005. I continued to have a grinding pain and swelling on a daily basis, but there was nothing more that could be done by my PT.

In 2006, I had some hardware that loosened up and had to go have it removed. They removed everything except 3 screws and 1 pin that were not accessible without cutting the bone. I quickly recovered from that surgery, but once again, I continued to have grinding pain and swelling.

In 2011, 2 years after getting married, I tripped on something heavy that broke my middle tow on the same foot. I had no insurance at the time so we straightened it by taping it to the 2nd toe for several weeks. Ever since then, my middle toe would constantly turn deep red, sometimes purple and had this feeling of a tourniquet wrapped tightly at the base of the toe.

June of 2014, I could no longer bear the grinding pain that has intensified over the past 11 years. After discussing it with my doctor and going through 3 referrals, it was determined that the cartilage was completely gone and the best thing to do was fuse both the tibiotalar and the subtalar joints in my ankle by cutting a portion of the bone, removing the remaining hardware and installing a large rod from my calcaneus up into my tibia about 8 inches. At the same time, they would straighten my middle toe by doing a DIP arthroplasty, (fusing the most distal joint of my middle toe). The surgery was performed January 9 of this year. I did not have a whole lot of pain through the night since a nerve block was administered before going in for surgery but I bled bad enough that my original splint was soaked through. Before releasing me the next day, the surgeon changed the splint to a compression splint to keep me from bleeding any more. A couple of days later when the nerve block finally wore off, I was in agony. I called my ortho, but he just brushed it off as being normal post-surgical pain. Five weeks later, the splint came off and a cast went on. I was still in agony, but could now see that my toes were turning purple as well. Another call went into the ortho, but once again, I was told it was normal. It wasn't until June that we realized that it might be CRPS. July 21st, I was finally diagnosed but by then I was having complications in other areas as most of you already know, and the pain is far worse in my foot than it ever has been except when I finally passed out in 2003 at the hospital after the original break.

Phew; sorry for the long post, but there is a lot on my mind right now. I am trying to figure out if this has been with me for 12 1/2 years, 4 1/2 years or just this past 11 months. I know I shouldn't dwell on this too much as it is not good to constantly think of the pain or where it came from, but I also know that my chances of of remission go down the longer I have had it. Does the length of time make a difference in the treatment options? I just want to hear the opinions of those who decided to read through this lengthy post.
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