• NMI Moderators: M!$TER-ED

2 orphan diseases =/

eds lady

Greenlighter
Joined
Feb 6, 2018
Messages
1
Greetings! I am hoping to learn much "real life" knowledge here as well as hopefully help others with my knowledge. I have a genetic connective tissue disorder called Ehlers Danlos Syndrome, and a neuroautoimmune disorder called Complex Regional Pain Syndrome. I am a (former) allied health care professional and instructor. I have no experience with recreational drug use, but have tried many, many medications to get to where I am now. My main pain doc has been just amazing over the past 13 years, but no one knows everything, especially with orphan diseases. I learn so much from other patients. Take care all,
EDS lady:\
 
Hello and welcome to Bluelight. Did you get diagnosed as a child or later in life? What are the common medications for your conditions? I'm sure that you probably already have experience with this community forum but just in case:https://www.ehlers-danlos.com/what-is-eds/

You can never have too many resources when it comes to support!
 
Welcome :)

I'm sorry to hear about your condition, they both sound pretty serious. Kudos to you on not falling into the depths of "recreational drug" use to help with your condition. I look forward to your posts..

Have fun here and be safe
 
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