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 06-07-2012, 05:25 PM #1
Turbojayhonda Turbojayhonda is offline
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Default Finally an Official Diagnosis

Hello,
I would like to introduce myself to the community. I was officially diagnosed with CRPS yesterday. I am so happy to finally have a name to this monster. I have been suferring with this for close to 9 months already. It all started back in September 2011, I had severe knee pain and lost the ability to walk properly. I went to visit an orthopedic and we did some test including an MRI and nothing was detected only a miniscus tear and broken cartilage. We decided to have surgery to repair it, that was done in Janurary 2012, little that we knew that it will get worse from this surgery. I have been in extreme pain, swollen, muscle trembeling, temperature changes, insomnia and using crutches ever since. Severeal months ago the ortho DR was a concerned becasue I was not healing properly. More test were ordered MRI, CT Scan, Bone Scan, Lots of Blood Work. All test were normal with the exception of MRI and CT. They showed damage to my pattella, femur and tibia. I was sent to and ortho oncologist and rheumatologist. After carefull review of my history and the sequence of events it was concluded that I have CRPS. Yesterday was the first time I took any meds for the pain, and let me tell you it was Awsome to have a little break from all this pain and suffering. I know the jurney is long and hard, but I have faith in GOD that he will give all the stregnth that we need to continue foward.
Thank you for reading.
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Old 06-07-2012, 07:33 PM #2
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TurboJay, welcome to the forum. Sorry we had to meet this way! But this forum is really a good place for information, support and sometimes to just vent!

I had mixed feelings when I got my diagnosis as well. Not happy that I had CRPS, but I finally had a diagnosis and you can't attack what you don't know. I still have a lot of pain, but nowhere near what I did when I was first diagnosed. Things CAN get better.

Can I ask what meds the doctor put you on? Meds are a very unique thing with CRPS and what works for one, may or may not work for another.

Also physical therapy (gotta have the right therapist that understands CRPS) is highly recommended. Need to move the affected area.

Good luck and keep us updated!
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Old 06-07-2012, 09:00 PM #3
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.. welcome (unfortunately ) to this forum.. hopefully your energy stays strong and positive. but if it doesn't well we r here.. a good attitude , strong sense of humor and well us.. will help in the fight with this "BEAST" as I call it. hope we can be of use. The kind people in the neuro talks forums of reflex sympathetic dystrophy are very kind and as a whole VERY informed good luck on your journey ... and thank you for joining the journey here with us
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Old 06-07-2012, 09:53 PM #4
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Quote:
Originally Posted by Turbojayhonda View Post
Hello,
I would like to introduce myself to the community. I was officially diagnosed with CRPS yesterday. I am so happy to finally have a name to this monster. I have been suferring with this for close to 9 months already. It all started back in September 2011, I had severe knee pain and lost the ability to walk properly. I went to visit an orthopedic and we did some test including an MRI and nothing was detected only a miniscus tear and broken cartilage. We decided to have surgery to repair it, that was done in Janurary 2012, little that we knew that it will get worse from this surgery. I have been in extreme pain, swollen, muscle trembeling, temperature changes, insomnia and using crutches ever since. Severeal months ago the ortho DR was a concerned becasue I was not healing properly. More test were ordered MRI, CT Scan, Bone Scan, Lots of Blood Work. All test were normal with the exception of MRI and CT. They showed damage to my pattella, femur and tibia. I was sent to and ortho oncologist and rheumatologist. After carefull review of my history and the sequence of events it was concluded that I have CRPS. Yesterday was the first time I took any meds for the pain, and let me tell you it was Awsome to have a little break from all this pain and suffering. I know the jurney is long and hard, but I have faith in GOD that he will give all the stregnth that we need to continue foward.
Thank you for reading.
HI,

Welcome to the forum. I am sorry you had to endure so much pain and
fear with this condition not knowing what you were dealing with. There is
real hope out there with breakthroughs in neuro imaging technology. The
research currently taking place is taking place at a faster pace and many
wonderful people in the medical community are seeking better methods
of pain control. Best of luck.
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Old 06-08-2012, 08:59 AM #5
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 06-08-2012, 10:08 AM #6
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Thanks all for the warm welcome. Like many have said it is an unfortunate situation to meet this way, but I am glad to be here. Hopefully we can get through this as best we can and try to live a better life. I refuse to give up and give in to this "monster".

I am currently on Prednisone 20mg and Amitriptyline 25mg, honestly speaking this combo seems to work at least for now. Yesterday I was able to do 10min on my excersice bike to get my legs moving. Since I have lots of bone damage I need to take it easy on the PT side of things. I was thinking of trying Aquatherapy once all the pain was under control.

I live in Atlanta, Georgia does any one know of any good therapy in this area?

Thanks for your help and comments.
Have a blessed day!
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Old 06-08-2012, 04:36 PM #7
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Quote:
Originally Posted by Turbojayhonda View Post
Thanks all for the warm welcome. Like many have said it is an unfortunate situation to meet this way, but I am glad to be here. Hopefully we can get through this as best we can and try to live a better life. I refuse to give up and give in to this "monster".

I am currently on Prednisone 20mg and Amitriptyline 25mg, honestly speaking this combo seems to work at least for now. Yesterday I was able to do 10min on my excersice bike to get my legs moving. Since I have lots of bone damage I need to take it easy on the PT side of things. I was thinking of trying Aquatherapy once all the pain was under control.

I live in Atlanta, Georgia does any one know of any good therapy in this area?

Thanks for your help and comments.
Have a blessed day!
Aqua therapy is probably one of the best. Good Luck!!
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