lailavia, I get that body shaking when I wake up also, a whole body tremor. No clue as to what it is, but it's been going on for over two years now. Like everything else I just live with it, and without a DX.
Pat

Hey pals

Sorry you have to deal with it too...how long does yours last? Sometimes mine lasts for 45 minutes before i can get up and going....it seems worse if I wake up with no alarm not knowing what time it is....so I try to set an alarm on my cell phone to wake me up and If I lay there after using bathroom it passes quicker...its almost like a huge panic attack. but not...cause I have had those....more like a waking anxiety attack...but its everyday that is so weird! I just saw neuro today again tried to explain it away as somatic...not made up or not real, but unexplainable.....I personally think there must be some reason, even if its post traumatic stress, or a sleep disorder, but he keeps insisting its not. I am getting worn out trying to find help,,,,,do you have MS? I have a lot of the sx but 2 neuros do not think at this time I have it. I am getting a small fiber biiopsy test at least from my trip to Johns HOpkins and redo of tilt table...hes also questioning my POTS dx....bleah night. I also get Sob and cough and feel like I am coming out of a coma!! I don't even have to get up and work but I feel like I just can't lay there maybe it is partly psycho! ( i mean pyschiatric )

What have your docs said? I take beta blockers and xanax at 6:00 am and it still happens....

It only last for 20 to 60 seconds for me. I'm not DXed, but listed as possible/probable, and that is probably where I'll stay..............no "O" bands.

Yep doc's think we make things up don't they? I'd love to wire them up and let them feel for themselves. Ahhh I can dream.

I'm on LDN from my PCP, which has made a big difference, my lesions were getting worse before the LDN, haven't changed since, and no major attacks either since I started it 20 months ago.

I've learned to live with allot of symptoms, you get used to them, they just slowly pile up and become part of your life. It kind of freaked me out a few years ago when they really hit all of a sudden and all at once. Oh they were there mildly here and there for years, but they came crashing down hard for about 5 1/2 months and never left after, just eased.
Pat