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Reflex Sympathetic Dystrophy

My Story

"RSD"

I was diagnosed with RSD in January of 2004, I am in a constant state of pain and my life has changed tremendously. I used to be a very active person and always on the go. I was working full time and staying very involved with my family. I did a lot of traveling to visit friends and family.

I underwent Carpal Tunnel surgery and displacement surgery of the Ulna Nerve in my left arm in October of 2003, and after having a very routine operation my left hand did not come back the way it should have. I underwent 2 months of physical therapy and was sent to see a specialist and had more test run, this is when I found out that I had RSD. I went through sympathetic nerve blocks on left side and these did not work. The RSD kept progressing. I was still continuing physical therapy on a daily basis, but things continued to go wrong. 

I was placed on several types of medications; these did not work well as I had complications with all of them. The Neurontin worked the best but I could not get to a level on the medication that would help a great deal, once I was able to get to 700mg on the medication I was no longer able to drive and would lose where I was at or what I was doing. So at this point the medications would not help me.

I was told of a procedure that would hopefully help bring the disease into remission called Sumerel Therapeutic System "STS" therapy. Well after undergoing the STS for 9 days the RSD began to spread into my right hand. The therapist continued the therapy for the next week and the RSD kept continuing to take over my right hand.

At this point I was told by my doctors that my only other option was to have a Spinal Cord Stimulator "SCS" implanted. This is the only option that I did refuse to have. I was told of the side effects of having the implant, I was told the implant has a 50% chance of reducing the pain level associated with the RSD. I opted not to have it done; I did not want any more invasive surgery done (after all this is how I got here in the first place). I was asked if I had ever had a spinal nerve block and I had and the side effects of having it done were negative as I was left paralyzed on one side both times. This was not an option for me especially with only 50% chance of it being successful.

So now I am told that there is no other option for me. But I was given an opportunity to go through a Functional Restoration Program. I went through a four week program on how to deal with the pain and learn ways to help manage the pain. I worked with a Physical Therapist and a Psychologist and I would have to say that since being diagnosed with this awful disease it is one of the best things I have ever done.

I learned to do Tai-Chi and Yoga. These have both been very successful with me to help take my mind in another direction and not focus on the pain so much. I have found a peace in my life that I did not have for years thanks to my doctor at FRC. Oh.... the pain is still here and there are days that I would rather stay in bed but that is not an option. I am only 47 years old and I have way too much living yet to do.

While attending the FRC, the RSD once again started to affect other parts of my body. I was now finding that my feet and legs were being affected and I was falling down once in awhile. It was at this time that I was given a cane to help stabilize me so that I could walk. I am now finding that I am having difficulty walking with the cane do to the pain in my right hand and wrist. I am no longer able to drive due to the pain level and the advancement of the RSD in my hands and legs.

It is difficult at times having to depend on others to take me places or do things for me because I am no longer able to them myself and this is when I turn to my journal and my Tai-Chi to help me refocus my life. By the way keeping a journal on a daily basis has really helped me, I can vent in the journal and keep my emotions more under control and it lets you look back and see if you are improving or just to give you peace of mind with your own life.

I have had to really change the way I do everything, I cannot cook, clean or even bathe the way I used to. The things I always took for granted are now a struggle. I must admit I still have bad days when I get down and depressed, and have really bad days with the pain and the burning. But I still have to remember that there really is something out there to keep going for. A CURE....... 

Once again I started taking the Neurontin, only this time I am taking longer periods of time to advance how much I take on a daily basis. I have to wait for the meds to stabilize in my system before I can take it up another notch. Due to the swelling in my legs and feet, my Dr. has now started me on water pills and I am going through a change in my blood pressure medication. I have hypertension and the meds that I am currently on constrict the blood vessels and the meds they are changing me over to dilate the vessels. The outcome is yet to be seen if they work.

I am now going through the roller-coaster of Workman's Comp and Dr's and Attorney's to get this all settled. My Doctor has made me permanent and stationary. So now I have to wait and see what kind of percentage they place on my worth. "I really hate being a number", but I guess in today's society that is what we really are. 

After many attempts on the medication, they have changed all my medications once again. Too many to go name, I am not taking them now. I am now under the direction of my regular Dr's. This is really hard to go from my RSD specialist to the doctors under my husband's insurance. I am being seen by a pain management group and they will continue forward with me.

During the next couple of years I went from walking to being in a wheel chair to go anywhere because I was not able to walk that far or stand for long periods. I really hated this time in my life. My depression really grew during this time, I did seek out counseling and that was my savior.

I had a couple of years that I really lost a lot of time, not just hours or days, I lost months.  I was being so heavily medicated that I did not know what day it was or what month for that matter. I woke up one day and said what is going on and began taking myself off of the meds I was on. I removed 5 opiate medications from my life and I have a new lease on life and ready to move forward.

I now am back to doing small tasks in my home and I once again feel like I am part of the real world. I still don't drive, but that is because of the functionality of my hands and legs. I am not able to stand for long periods of time or doing much walking for very far, but I am working on it. I now talk to a lot of people about this horrible disease and hoping to get more information out there because of this disease.

Reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS), is a chronic progressive neurological condition that affects skin, muscles, joints, and bones. Some of the symptoms of the disease listed below are from RSDS.org "A great source of information about RSD".

* Burning Pain
* increased skin sensitivity
* changes in skin temperature: warmer or cooler compared to the opposite extremity
* changes in skin color: often blotchy, purple, pale or red
* changes in skin texture: shiny and thin, sometimes excessively sweaty
* changes in nail and hair growth patterns
* swelling and stiffness in affected joint
* motor disability, with decreased ability to move affected body part

This list is only a part of what we see, we go through so much pain that it is very hard to put into words.

I am now 56 and I look at every day as a new adventure, I never know where the day will lead me. I am looking forward to our retirement and spending more time with our grandchildren. Our Kids and Grandkids is what keeps me going.

If you want to chat with me about RSD/CRPS please feel free to email me at Debbie@nevnative.com or I can be reached @ Facebook, but please check out my links on RSD/CRPS.

Please check back because as things change with me or new information is released for RSD sufferers I will be updating these pages.

 


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