[terralyn]

Hey everyone! I'm new to this site and forum. I'm hoping to get to know other people with RSD/CRPS because I have found that this is a very misunderstood thing. My husband is very supportive but the rest of my family doesn't understand and at this point I pretty much don't talk about it too much with anyone besides my hubby because I feel like I am complaining or sounding historionic.

A brief overview of my situation: I tore two ligaments in my ankle and foot and had the Chrisman-Snook procedure, which is a complete reconstruction of the ankle.
Three months after surgery my pain had only changed and increased and I kept trying to talk to the surgeon about it and she acted as though I was drug seeking (even though at that point I wasn't taking anything but ibuprofin.) Needless to say, two years has passed. It took many tries to finally find a doctor who would take the time to figure out what the actual problem was. Some doctors wouldn't even approach the problem or said it was 'out of their league.'

I have had several SNB's and am getting ready to do a trial with a SCS.

The area affected the most is my right foot up to my knee.

Thanks for listening!

[catra121]

Welcome and I am glad that you found us here at NT. It has helped me a LOT over the past couple years to be able to talk to people who understand what it is like to live with this thing every day. I've learned so much from the other members and at times I feel like they have saved my life and helped me through some of the most difficult times. What's great is that you can get so many different opinions and stories of people's experiences...RSD affects everyone different and when you think you are going crazy there's always someone here who understands and "gets it."

I'm very sorry that you have had to go through all of this and I hope that you find some relief soon. Take care...and definitely feel free to stop by here for any reason, whether it's to ask a question or just to vent...we're here for you.

[Joydee]

Originally Posted by terralyn

Hey everyone! I'm new to this site and forum. I'm hoping to get to know other people with RSD/CRPS because I have found that this is a very misunderstood thing. My husband is very supportive but the rest of my family doesn't understand and at this point I pretty much don't talk about it too much with anyone besides my hubby because I feel like I am complaining or sounding historionic.

A brief overview of my situation: I tore two ligaments in my ankle and foot and had the Chrisman-Snook procedure, which is a complete reconstruction of the ankle.
Three months after surgery my pain had only changed and increased and I kept trying to talk to the surgeon about it and she acted as though I was drug seeking (even though at that point I wasn't taking anything but ibuprofin.) Needless to say, two years has passed. It took many tries to finally find a doctor who would take the time to figure out what the actual problem was. Some doctors wouldn't even approach the problem or said it was 'out of their league.'

I have had several SNB's and am getting ready to do a trial with a SCS.

The area affected the most is my right foot up to my knee.

Thanks for listening!

Hi,

You have found the right place for information and some truely caring
folks. I do not have CRPS personally. My adult daughter developed
it in late 2008 after surgery to her hand and arm. It was the
oppostie for her when it came the surgeons. Her surgeon believed
it was CRPS within a couple of months. She found a PM doc who
did a SGB on her but he did not think she had CRPS. Many Docs
reley upon SGB responses to confirm CRPS when in twenty five percent
of the time there is no response. Such was the case here, as a result
it was a touch over a year before confirmation was made and precious
time was lost.

I am sorry to hear few within your circle understand. This is common
and only education over time can bring understanding. Sad to say the
same thing can be said about some of the doctors who treat CRPS.
I am curious. In regard to your consideration of SCS. Please type
in TDCS in the search menu of this site. There is a very long thread
regarding TDCS. TDCS is non invasive and targets the problem, not
like other treatments which mask the problems. We are taking steps
to try the treatment for my daughter.

Meanwhile keep the faith, there is something out there for you
and new treatments are occuring at a faster pace. Most important
know you are not alone.

Joydee

[terralyn]

Originally Posted by catra121

Welcome and I am glad that you found us here at NT. It has helped me a LOT over the past couple years to be able to talk to people who understand what it is like to live with this thing every day. I've learned so much from the other members and at times I feel like they have saved my life and helped me through some of the most difficult times. What's great is that you can get so many different opinions and stories of people's experiences...RSD affects everyone different and when you think you are going crazy there's always someone here who understands and "gets it."

I'm very sorry that you have had to go through all of this and I hope that you find some relief soon. Take care...and definitely feel free to stop by here for any reason, whether it's to ask a question or just to vent...we're here for you.

Thanks so much for your response! I have already spent hours looking through the posts here and already feel a kinship with everyone else here that are going through the same thing either themselves or with loved ones.

[terralyn]

Originally Posted by Joydee

Hi,

You have found the right place for information and some truely caring
folks. I do not have CRPS personally. My adult daughter developed
it in late 2008 after surgery to her hand and arm. It was the
oppostie for her when it came the surgeons. Her surgeon believed
it was CRPS within a couple of months. She found a PM doc who
did a SGB on her but he did not think she had CRPS. Many Docs
reley upon SGB responses to confirm CRPS when in twenty five percent
of the time there is no response. Such was the case here, as a result
it was a touch over a year before confirmation was made and precious
time was lost.

I am sorry to hear few within your circle understand. This is common
and only education over time can bring understanding. Sad to say the
same thing can be said about some of the doctors who treat CRPS.
I am curious. In regard to your consideration of SCS. Please type
in TDCS in the search menu of this site. There is a very long thread
regarding TDCS. TDCS is non invasive and targets the problem, not
like other treatments which mask the problems. We are taking steps
to try the treatment for my daughter.

Meanwhile keep the faith, there is something out there for you
and new treatments are occuring at a faster pace. Most important
know you are not alone.

Joydee

Thanks Joydee, I will definitely look upthe TDCS threads. I saw several people referencing that but had no idea what it means.