My daughter often gets the excruciating pain in her legs at night. Dr. Diana speaks about this pain in her video titled “Hypermobility Form of Ehlers Danlos”, may be easier to find on youtube. There is also a member here named Beth who wrote about this type of pain in her EDS kids on her blog (hope she doesn’t mind me posting the link.) Though links don’t work from this forum, so you will have to copy and paste. http://slingsandarrowsofoutrageousfortune.wordpress.com/what-i-wish-i-knew-then/
My daughter had this happen again the night before last. I am getting better at reducing the pain quicker. I give her an over the counter pain reliever and an antihistamine. She is already on a nightly dose of Zyrtec, but I give a her a natural antihistamine called D-Hist when she has this pain and as needed. (D-Hist is made by Orthomolecular and available online, but I get it from our ND’s office.) The D-Hist contains Quecertin, Bromelain, and stinging nettles- all known to naturally reduce histamines.
But this 3rd addition to our leg pain relieving regimen seems to be what helps reduce the pain quickest. I massage Arnicare (Arnica Cream) into her legs where the pain is. We use Boiron brand at get it at our local health food store, but I have seen in at the pharmacy before too. When I massage the Arnica Cream into the painful areas on her legs, the pain subsides in like 10-15 minutes. I still do all 3, the pain reliever, the antihistamine and the cream, but I think the cream has been the best thing we have found to help quickly, so I am sticking to our routine.
Also wanted to tell you that I have POTS and all day pain in my legs. It is a disabling pain. But it is different than the night time only pains that I had as a child. I would wake my mom up in the evenings with this excruciating pain, and the doctors called it growing pains too. Strange thing was, that I was the only one of all my siblings who experienced this awful night time pain.
I can almost predict when it will happen to my daughter. For example, if she tries to walk too far, or keep up with running kids… I will usually say to my husband “I bet her legs will be killing her tonight.” She usually wakes up with this pain or has it right at bedtime. We have only known about the Ehlers-Danlos since March, so before that, her doctor would call it growing pains too, but we always knew there was more to it.