Complex regional pain syndrome or reflex sympathetic dystrophy

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!

@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

i had TKR 2yrs ago , have tried so many things to stop RSD [CRPS] Nothing working . next step i am looking at STEMWAVE IMPLANT to block pain. hopefully in DECEMBER.

@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.

I have had RSD in my right foot for 17 &3/4 yrs as bad as the pain was an is I was holding my own cause I was so happy to still be alive but sense February of 2017 I pray every night an every mornin to God to please let me die!!

@drichards I am so sorry for your pain and how bad it must be to pray to be gone for years. I can listen.

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

@katrina123 Thank you for your post. I have had the same issues you have had all my life. I am going to ask for the blood test you had for my own peace of mind. I probably don't have it but I hope I can convince my stubborn FP to request I get the CVID test. I have had the teeth issues and I constantly get bronchitis and pneumonia once a year.

suzanne2...
FYI...I had to push for answers as to why 3 prescriptions of antibiotics were not working when I had pneumonia. My family doctor insisted that I was not taking the antibiotics that he had prescribed so on my own I went to a pulmonologist and she is the first one who tested my blood and discovered that I had very low antibody levels. Hopefully your doctor will be more open to your being tested and if not you could get an opinion from another doctor preferably an immunologist. With me they tested my IgG, IgA, IgM and IgE levels. Both IgG and IgA were very low. Next they gave me a pneumovax titer test. This test determines whether you have impaired responses to the pneumonia vaccines.
I was diagnosed when I was 67 years old after a lifetime of illnesses. Once I started on immunoglobulin infusions I no longer had serious bronchitis or pneumonia however I continue to have serious dental issues due to a lifetime of low immunoglobulin.
Please push for answers. We are our best advocates.
Let us know what your doctor says.
I will be thinking of you.
katrina123

@drichards Welcome to Mayo Clinic Connect, a place to give and get support. You have been in terrible pain since 2017 and you pray every night an every morning for go God to let you die. It sounds like you need some support right now.

Would you elaborate on your condition and the avenues of relief and treatment you have attempted so far?

Do you feel you can keep yourself safe at this time?