I hope it's only me awake and you are all getting some precious sleep.
I've been having the most awful flare the last 10 days or so and have had virtually no sleep. Most of you will know that I've had multiple spinal ops and a thoroscapular fusion. Waiting for an appointment at Guys & St Thomas's for assessment for SCS
I've not been formally diagnosed but have been told by GP and Osteo that I have all the features of EDs - the hypermobility type. I've had problems with SI joint on right side for years but suddenly it has got so much worse, the whole of my pelvis feels like it's on fire and I can't walk, straighten up, I'm really 'jangly' and shaky with pain and haven't been able to lay in bed for over a week. My nights have been spent in a reclining chair cos I can't even begin to lay on either side or my back.
None of the meds are touching it, I've taken as much of everything as I can, topped up with Oramorph, iced it and now I'm at a loss. It feels pointless seeing my GP as I know I've tried every med over the last 40+ years and I was discharged by local pain management to be referred to Guys. I rang them today and it will be 3 months + before I even get initial assessment.
Any ideas at all anyone please??
I'm trying very very hard to stay on the right side of despair but really struggling.
Thanks so much for being here - it means so much.