Ehlers Danlos Syndrome

I had my appointment with the second neuro yesterday - within just a few minutes, he had diagnosed me with hypermobility type EDS (type III). He believes that this, as well as the CRPS also accounts for my GI and cardiovascular issues.

Just wondering if anyone else here has EDS - how do you manage it? I was a bit stunned at actually having a diagnosis to really process or ask questions. He's referring me to an exercise physiologist who specialises in this and chronic fatigue syndrome (which he says I have badly) and hopes this guy will help me to gently regain some strength and stamina without exacerbating my other pain issues.

Laura

Thanks Debbie.

I'm sorry about your daughter. Will certainly keep her in my thoughts.

Hi Barb,

Pain - its hard to tell. I also have CRPS, which causes very severe neuropathic pain, muscle pain, bone pain...but I've had a lot of unexplained joint and muscle pain over the years that has never been explained. Treatment - at this point sounds like it may be highly specialised PT tailored to my needs, but I'm not sure.

Ketamine - I've had a few (5-6 now I think?) but I'm probably not the best person to ask about them because my experiences haven't been good. My pain relief has been limited, partly because I'm so sensitive to it I struggle to get to therapeutic doses without major side effects. Most common effects for me are nausea/vomiting, dizziness - but I have also had serious panic reactions and my last infusion (I'm not allowed any more) led to a 2 day dystonic storm where my whole body was in spasm and I was unable to move. I don't remember the infusion at all, and even though it was last year sometime, I still have short term memory loss.

Laura

Hi Laura, I really haven't heard of EDS before, just wanted to say that I really hope that with this new DX they're able to get some kind of funtional treatment plan in place for you, and quickly, and that you're able to get some QOL. I know from your posts the last week or so, you've just been on the brink. I just hope that hard time is past now. Let us know what happens. Take care.