persephone Posted October 14, 2006 Report Share Posted October 14, 2006 The pain all round my neck and shoulders is horrific. It's been bad for years but the last few days itis hardly bearable. I had to come out of the library yesterday and today and just lie down- I can't hold my head or neck up at all. I am having to lie completely flat in bed with a buckwheat pillow burning into my neck to distract me from the joint pain.I also keep getting terrible pain at the bottom of my spine- so low down it's almost in my bottom.Do you get this? Is it part of EDS? My mum gets it too and she has EDS so I'm guessing it is.Most importantly- what can I do to help it? I feel like I'm in torture every time I go to the library or sit at a desk. It's becoming impossible I'm meant to be at a party tonight but I'm just so sore when I sit up at all that I know I won't enjoy it and will feel awful instead Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 15, 2006 Report Share Posted October 15, 2006 PersI don't have EDS but do know the 'coat hanger pain' effect can be ANS related...usually Ortho hypotension...I get it when I use midodrine and it wears off even if my BP is normal so who the heck knows.Your lower spine pain...not sure about that connection. Been sitting in too many hard wooden seats watching handsome guys speak, lately? I hope you get some relief SOON. Quote Link to comment Share on other sites More sharing options...
persephone Posted October 15, 2006 Author Report Share Posted October 15, 2006 Haha, now you mention it the wooden seat was pretty hard in the OxfordUnion on Friday night, worth it to hear Pierce Brosnan speak though!!!!! mmmmmmmmm........lovely Pierce......mmmmmm Quote Link to comment Share on other sites More sharing options...
nadine Posted October 15, 2006 Report Share Posted October 15, 2006 Persephone-I hope your pain is soon better, lucky you getting to see Pierce speak- must have been amazing. Love him, just focus on that lovely face of his and perhaps that will help with the pain!!! LOL Quote Link to comment Share on other sites More sharing options...
willows Posted October 15, 2006 Report Share Posted October 15, 2006 Ah .......Persephone tell me about it ! I'm sitting here at mother ( our big computer as I call her ) on a light puffy swivel desk chair ............and in a few minutes I now I will have pain so bad from sitting that my shoulders will feel like they are 'on fire' the back of my neck can and does on occasions make me want to vomit at the computer and girl.............now its started Never, Never sit on a hard stool, chair or wooden item as well as wall, ground , or tiled floor. Sometime just getting up from a puffy chair can cause me pain.If I'm going anywhere that I know will not have soft chairs I take a small springy pillow, and just say 'no I dont have piles ' smiling sweetly at them all ! ' what I have is an elongated coccyx and its bl**** awful sitting on a hard chair, because I cant stand up again afterwards 'I have an extra long coccyx and it is **** because it hurts so much ......right up the spin from base to mid way , getting up OMG , you have to take it very slow if you get this AHHHHHHHHHHHHHHHH! stiff pain in the b** I now now my own lap-top which I work from laying almost flat in ?on the bed as writing at this one for more than 15 mins just has be in agony , my doctor has said it all part and package of this pots , because now I'm getting worse its picking on all my weak points .Willows Quote Link to comment Share on other sites More sharing options...
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