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Complex regional pain syndrome or reflex sympathetic dystrophy
Chronic Pain | Last Active: Oct 3, 2023 | Replies (185)Comment receiving replies
Hi,
I've had RSD as diagnosed at Stanford University for 20 years. Please make sure you're taking Calcium, vitamin D, Magnesium and NAC. All over the counter. What I am learning and experiencing tooth and bone loss most noticeable in my face. I've lost all my teeth and now need a jaw transplant. I brushed and I kept losing teeth, my salivary glands even stop functioning correctly.
RSD, can cause bone loss!
Replies to "Hi, I've had RSD as diagnosed at Stanford University for 20 years. Please make sure you're..."
@monablue58 I would like to extend my welcome to Mayo Clinic Connect. You have been diagnosed with RSD for 20 years and the disease has progressed. Your salivary glands stopped working and you are experiencing tooth and bone loss. You are now in need of a jaw transplant.
What you are going through must be tremendously difficult. Mayo Clinic Connect is a place for people to connect to give and get support. Other than Mayo Connect, what is your support system look like? I'm wondering if you live alone, have family or friends that visit and help, have been assigned a social worker and/or a therapist, and if you partake in any support groups, etc.
monablue58
This is a little off your topic but I have had terrible tooth and bone loss all of my life along with many bouts of severe bronchitis and pneumonia. After a lifetime of dental problems and illnesses a doctor was wise enough to do a blood test and I was diagnosed with CVID which is a primary immune disorder. I was put on immunoglobulin infusions and in no time I no longer had periodontal disease. Unfortunately my diagnosis came a little late in life when I was 67 years old. I wish someone had tested me earlier so I would not have had so many root canals, tooth extractions and dental implants along with many other serious health conditions. That is only some of the problems due to a late diagnosis.
Could someone explain what RSD is.
Thanks
katrina123
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@monablue58
Hi, and welcome to Connect. I have read some of what others have said about how this disease can impact someone's life in a very debilitating way. Of your recommendations, I understand calcium to help stop bone loss. Are the other supplements also all to deal with that issue? I know there is a tremendous amount of pain with RSD. Have you been able to find anything else that helps you with the pain? I would be interested to hear more about how this disease has impacted your life if you wish to share.
By the way, there are other Connect discussions you might find interesting. Here is one, also about CRPS:
https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/?commentsorderby=DESC#chv4-comment-stream-header
Best, Hank