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Originally Posted by ava
Thank you for your response.
My niece has no warning of the passing out. It just happens. If she is walking somewhere and one comes on she falls to the floor. They have to watch her all the time.
The other day she was here for Christmas dinner and while she was eating one came on and she fell back in the chair like she is in a peaceful sleep for like a minute or less. Luckily I had wheeled my computer chair to the table for her to sit in. This way she had arms on either side of her and a comfy high back. Poor kid.
I have been searching and searching about RSD and have spent many hours on the computer trying to learn all I can so I can be of some help.
I have yet to find anyone with the same passing out episodes...Many are just like what you described. Some have short term memory loss from lack of sleep.
Do you still have RSD? Are you in remission?
My nieces came on after getting a cerebral angiogram. I can't believe all the stuff I am reading ....it is heartbreaking and yet strangely a comfort to know there are others out there.
My niece has had it for nearly three years.....for the first two and 1/2 years she was told it was in her head. Sad,,,,very sad...I am learning so much..
Thank you for taking the time to respond.
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Hi Ava, thank you for your message. Again, I'm so sorry about your niece. I can't imagine having a child with this disorder (or niece) I have heard of ones getting RSD from procedures, even like a blood draw (the needle) so I ask for a butterfly needle which is smaller and less invasive as regular blood draw needle.
Even though I have full body rsd-16 years I still take precautions. even going to the dentist, as you can get it in the mouth. I take anti-biotics before appt. and use 'laughting gas' to relax. My dentist read up on it before treating me.
Mine started following breast surgery(benign tumor) got frozen shoulder (rsd) spread to other shoulder then feet-full body or generalized they call it.
It is tough. I would assume a cerebral angiogram is an invasive procedure.
I'm so sorry. Is it in any of her limbs? the hands and feet are critical to keep mobile- physical therapy has kept me mobile and using limbs, although one hand is permanently partial frozen.
I think the pain, medication, losses of all kinds, many of us deal with depression, so please watch for signs in your niece. Professional counseling helped me tremendously deal with various losses and coping with the pain etc.
The passing out is scary, I take my blood pressure kit everywhere, as that is my cue when it starts dropping, but I have passed out with no warning at all cracking my head on tile floor.
What does the Dr. say? She must have had something going on before rsd to have such a procedure. Her memory issues following events puzzles me. Take care, loretta
