tag:blogger.com,1999:blog-6964453123003849871.post2822488319079371582..comments2023-05-14T08:56:54.346-07:00Comments on Dance Injury and Ehlers-Danlos Type III Hypermobility Syndrome: Severe Fibromyalgic Flare up with Hypermobility SyndromeIsobel http://www.blogger.com/profile/03735584435347282265noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-6964453123003849871.post-17304915720919240092011-11-17T17:11:19.391-08:002011-11-17T17:11:19.391-08:00Oh my dear I am so very sorry you feel so absolute...Oh my dear I am so very sorry you feel so absolutely dreadful. I understand. I do. I am often as you describe and I do not work. My daughter is very ill at the moment with her EDS very ill.<br /><br />I can't change it all for you I just wanted to send you a virtual hug? If thats ok not the same I know but as well intentioned as the real thing.<br /><br />I wonder sometimes about your pain relief. Thinking that taking two relatively weak opiods for flare ups pain is the best way forward. A pain management nurse pointed out to me a while back that my dihyrdrocodeine plus top ups of oramorph was not proper pain management and that patients who came with that scenario were transferred either to patches or s/r morphine tablets. I am now on s/r morphine tablets with much less occassional use of oramorph for breakthrough pain than when I took dihydrocodeine. I also need to take much less diazepam for spasms. I can't use the patches unfortunately - allergic humph! Good advice from said nurse. Appropriate ongoing pain mangement including all the stuff you know about pacing, distraction all the multi disciplinary approache milarky to pain management! Waiting until pain is out of control then swallowing all availvable pain relief with not very much relief at all is not effective pain management to my mind. I wonder if its time to re-visit this aspect of managing your hypermobility and associated conditions. Oh yes and be kind to yourself - I wrote a garbled comment last time which I hope you 'got'. <br /><br />Sometimes in order to help others you have to help yourself first ie: for starters by being kind to yourself. Don't be a martyr it will make you sicker in the end. <br /><br />Really really hope you feel a little better very soon.<br />Take care and don't forget to waft around on a cloud of virtual warmth for a little bit whilst you just accept the virtual hug.<br />xoxoxoxoxAcheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.com