EDS Normal vs Flare Up - Pain Levels:

Us EDS sufferers have a different pain scale when compared with the 1-10 Paramedics/Doctors use.  See pic (Google Image Search for better quality version if required) below:


I hope the following gives you some inkling as to what my days & nights are like.

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My Normal EDS type days are as follows:
Back Ache (all across the lower back, all day all night 24/7/365) = 11 (I can only liken it to the Hulk driving a steamroller over my back, constantly).

Knee pain, in both knees, I was born with Varus Deformity (bowed legs) = 11 (All throughout the day and night, but not constant.  I can only liken it to Wolverine using his metal claws.)

Shoulder pain, in both shoulders though right is worse = 11 (I can only liken it to being impaled in the shoulder with red hot poker.)

Legs = 11 (Feel like I'm lugging around a tonne weight on each leg, all day long.)

Fatigue = 11

Rest of the body = 11 (I can only liken it to Thor bashing me all over with his hammer.)

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My EDS Flare Up type days are as follows:
Back Ache/Gut Ache/Knee Pain/Shoulder Pain/Nausea/Lightheadedness/Dizzy/Loss Of Balance/Brain Fog/Confusion/Loss Of Sleep Problems (extreme Fatigue) = 14+ (All day, all night.)

Legs = 14+ (Feels like 10 tonne weight attached to each leg.)

Chest Pain = 14+ (Feels like an adult Elephant is crashed out on your chest for a while, making it VERY painful & hard to breath at times.)

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1.  My shoulders are also a 14+ when they've dislocated.

2.  During the cold weather my lower legs & feet also swell up.

3.  The 'Nerve Pain' aspect of EDS for me is like being impaled with a red hot poker, when i.e. someone else touches i.e. my upper back.  The Gabapentin I'm on get's rid of this aspect, but everything else pain wise remains.  Last time it was a problem was:

Several years ago, at old family home, (late) folks (they both died in 2016) & I were chatting to my older Brother via Skype.  Mum came behind me & simply held her hand to the back of my right shoulder, & left it there for several minutes+.  My right shoulder is the worst anyway, that was known to be the case already by then.  Internally I was like "get off me, that is f*****g killing", + many more expletives etc... constantly.  Outwardly, you wouldn't have really known.  Partly due to the November born Scorpio aspect alone of our cool/calm exterior & pain being all I know (being a lifelong pain sufferer).