Bio,

My GP that ordered the bone scan and is referring me to the endocrinologist has suggested iv bisphosphonates because I do have stomach issues that were present long before CRPS. She does not feel like I can tolerate the oral meds. Have not met w/ endo so I don't know how this will all play out. Just a thought.~mac

Mama mac,

Go for the IV. I could not find anyone willing to do this for me.

rsd can cause bone wasting. i have had rsd for almost five years and have suffered bone wasting in my hips (osteopenia) and in my teeth (lost five teeth) and in my initial rsd site which is my right wrist, hand, fingers, elbow and shoulder. rsd can also cause atrophy which i have in my original rsd site and right foot and toes. i take vit d to bring my level up to try to strengthen my bones. i am not a dr but if i were you i would ask them about ways to try to strengthen your bone. soft hugs.

Over the past several months, I have had several X-rays and CT scans that have revealed that I have a generalized osteopenia in the original site. All of my scans have been limited to my right ankle and foot so I do not know if it goes beyond the original site or not. My orthopedic surgeon does not think that it is related to CRPS and my current PM thinks it has to do with lower hormone levels. I am not sure if either are correct or not but from most of what I have read, including several older posts here, CRPS/RSD most certainly does cause bone wasting. I appreciate what everyone here has written on this, giving their experiences and knowledge with how they have gone about dealing with this.

Theodora, I am a little late at coming into this conversation as I have not been feeling all that great over the past several days. I am sorry that you have had such a bad experience with your recent visit to your doctor. I hope you are able to find one that you can agree with, actually does know how to read a chart and is willing to read it, and will listen to their patients. Everyone here has given very good information. I hope they have been able to give the answers to the questions that you have asked.

Alaina

Thank you for the responses!

I just checked a Calcium and Vitamin D and have finally brought both of those up to where they should be. They had been kind of low.

I do break a lot of bones since the RSD started. I also dislocate or tear tendons a lot due to the hypermobile part of it. (My original RSD Doc says hypermobility caused my RSD).

I guess I never put these things together in my head to blame it on the RSD but I too find it difficult to say where it stops and something else starts.

There was one very good RSD Doc here when I was first diagnosed - he was neuro/pain. Everyone else now seems to think I'm some hypochondriac so I'm afraid to ever bring anything up. When I do I'm dismissed immediately and they treat me like I'm loony. I don't even visit the Doctor for broken bones anymore. They seem to think I'm a nut but I don't even complain about the pain very much. I don't seek meds - in fact, I never take them and say thank you, but no thanks. I don't know what else to do. Maybe being hooked up with a decent Doctor would solve a lot of my problems?

Sadly my experience was the same as yours....the medical profession can't answer our medical situation thus we don't have one .... Getting a decen doctor does help; especially to keep us sane after hearing we are crazy....but what you are doing...being your own advocate is very important too...continue to get informed and please continue to share your journey.....