u/TrekKit27

I'm wondering if anyone else has this experience and what they do about it?

I have woken up in the middle of the night so many times in excruciating pain because a body part has gone numb. I'm not talking a little tingly sensation, I mean that (for instance) my knee will be completely numb; I cannot feel it at all, and it hurts so much to even exist for a few minutes until it has woken up again. Interestingly enough, my calf and foot will feel completely normal. I don't usually sleep in crazy positions. This happens most often to both my knees, both arms and hands, lower back, and the back of my skull.

I think they occur most when I am lying flat on my back, but when I lay on a side, then my organs seem to think they can go MIA. Finding comfort while sleeping has been a challenge. When I wake up it's like I have to put my body back together because it is positioned a little funny. I feel like if I were pinching a nerve my feet and calf would also be numb? I am very hypermobile, so I wonder if my numbness is a symptom of it.

So, what do you do/would you try? Pillows? Props? A better mattress?

In case it means anything, I don't sleep with a pillow under my head for comfort reasons. While I haven't been officially diagnosed with anything, I am freakishly hypermobile and am seeking a hypermobile Ehlers Danlos diagnosis.

I'm wondering if anyone else has this experience and what they do about it?

I have woken up in the middle of the night so many times in excruciating pain because a body part has gone numb. I'm not talking a little tingly sensation, I mean that (for instance) my knee will be completely numb; I cannot feel it at all, and it hurts so much to even exist for a few minutes until it has woken up again. Interestingly enough, my calf and foot feel completely normal. I don't usually sleep in crazy positions. I think they occur most when I am lying flat on my back, but when I lay on a side, then my organs seem to think they can go MIA. Finding comfort while sleeping has been a challenge. The numbs happens most often to both my knees, both arms and hands, and the back of my skull.

In case it means anything, I don't sleep with a pillow under my head for comfort reasons.

I have done loads of research, and I based on everything I've seen; I could definitely have Hypermobile EDS or at least HSD. The internet says that since there is no genetic test for hEDS, and a diagnosis is purely clinical, it is important I find someone who is experienced with hEDS. I mean, your regular joe doctor probably won't know what doughy or velvety skin feels like, right? Unfortunately, there isn't anyone near me on the Ehlers Danlos Society website that isn't a physical therapist or a geneticist.

So, is it really that important to find someone that has special knowledge in hEDS? And how on earth would one do that? Could a physical therapist or geneticist diagnose?

Also, how hard was it for your doctor to believe you? Is bringing a thorough joint and medical history necessary so they take you seriously and not try to write it off as something else?

Anything else I should know?

Thanks in advance!