Hi everyone not sure if any one can help here but I was diagnosed with RSD/CRPS in 2006. Mostly in my right arm burning swelling colour changes nail changes PAIN. I beleive it has spread i have shocking tinglinging in my legs & feet…crazy if the wind even blows on them. Electric shocks if I raise my arms. At night my body tremors my neck & down throughout my body like the exorcist I have tried so many options & I can’t give up yet because everyday seems to get worse. I have tried Lyrica, Gabapentin,Cymbalt,Nucynta, Fentanyl, tramacet, cesamet, stellate ganglion injections and many more. Recently I did 5 days of Ketamin infusion. All with no results is there help out there??
Hi Judy K, FINALLY, someone mentions this! I DO have some thoughts on this, and am frankly surprised that not more people have complained of this condition! My thinking is along the lines of the increased pain that hypermobility EDS folks seem to have as compared to the classical form of EDS, even though classical folks can be just as hypermobile. I hope you can participate in the blood test registry that will be coming up. That test may tell us what is going on, and better yet, give us some unique treatment options. Stay tuned? Hang in, Hon. 🙂 Diana