Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM and stomach and pelvic area pain


#1

My 13 years old girl, dx’ed with severe ADEM (turned to Recurring ADEM a few months later from new lesions on brain. and spine), 7 years ago. The past 14 months she’s been dealing with extreme stomach pains, as well as coming/going pain in pelvic area. This pain is a daily thing. They have tried to figure it out, but still she suffers from it. The only thing that helps (but only takes so much pain away) is to lie on her side in bed, and completely relax. She’s on Gabapentin for nervepain, Magnesium, Zink, Vitamins and Turmeric, but nothing seem to better the stomach or pelvic pain. She’s been tested for celiac, gluten, lactose intolerance, IBS, different gastro-illnesses, other allergies/intolerances, and anxiety, but no answer yet. Stress tends to make it worse.

Have any of any experience with this? Any medicines you’ve found to help? I’m trying to find answers for her as this is taking a toll on her, and influencing her quality of life so much. Thank you in advance.


#2

#3

Two things I experience:

For unknown reasons I get stomach aches. No nausea, no GI stuff… just aching and cramping. It seems to be stress related. It kicks in when I am going to sleep. For relief I usually just rub my own stomach or use a heat pad or hold a pillow over it or lie on my back and put two hot water pads by my kidneys. When I sleep on my side with a bolster, I feel more supported and safe.

The other things I experienced: I got a kidney stone. It took a while to figure it out and it manifested as lower back pain, then flank pain, and then unbearable pain.

The other thing is that I had a couple hernias. Same kind of pain but it took a year or two to figure out.