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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

CRSP

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › CRSP

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  • January 27, 2012 at 12:01 pm #96
    JudyK
    Participant

    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??

    April 9, 2012 at 11:25 pm #1976
    Dr. Diana
    Keymaster

    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

    December 25, 2012 at 10:46 pm #3251
    Sunshine
    Participant

    This thread is either primarily inactive or is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!

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