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Complex regional pain syndrome or reflex sympathetic dystrophy
Chronic Pain | Last Active: Oct 3, 2023 | Replies (185)Comment receiving replies
@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.
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Hi Erica & everyone,
Appreciate the welcoming note.
My family have been a very good at supporting me. I have a hard time making friends who will stick around when you're going through so many health crisis. Even though I fight very hard not to let this disease control my life.
Pain control, by exercising and eating a plant based diet, a good pain doctor, breathing techniques and just keep moving has helped me maintain some sense of normal. But I have unavoidable bad days or months and still I do my best to reach out to others.
I am in a crisis right now. I need a jaw transplant due to bone loss due to RSD. But I am having trouble getting someone to approve it medically. Or not part of a dental issue. Anyone have any advice? I can't afford to pay for it.
It's just as if I had cancer or any other disease that'll cause me to lose bone.
I'm so frustrated.
Excuse my rant. If there's anything you or anyone can think of that'll help me. I'll listen.
Thanks,
Monablue58