CRPS Treatment and Research: What's New? with Sean Mackey, MD, PhD - RSDSA

[@sprtsfan1968]

Yes. What most people that DON'T HAVE RSD/CRPS really don't get is HOW MUCH pain we"re really, truly in. We are THE BEST PRETENDERS & can hide our pain w/excellence when out in public and with friends&family. We DON'T WANT TO cancel events planned in advancebecause of the way I feel. We feel sad, depressed, & 24/7 severe pain! Pain Dr's, Neurologists, rhuematology rhuematology, etc. DON'T want to treat ME because "MY.case is too complicated?!!!" What am I supposed to do when I'm going thru withdrawal of my meds each month and trying to find a GOOD DOC 4my RSD/CRPS&Fibromyalgia

[@terew9145]

You express TRUTH..SO GRATEFUL. .BLESS YOU..💓

[@donnazucker3716]

Find a lawyer to sue them all for abandonment. This is a very serious disease and it needs opioid meds to control pain.

[@lotusbloom7750]

Said perfectly fellow warrior 🙌🙌🙌

[@jacquelynmcclellan910]

This presentation confirmed much of what I have slowly figured out with my RSD. I don't like taking pain meds long term and have used exercise, distraction, an pinching another area and gotten relief. Had RSD for over 25 yrs. Recently had bad flare-up that has spead the symstoms to my legs, but never gave into it. Use mostly mind control techniques spurred by fear, telling myself "it's not so bad" even when I can hardly walk. It works some. The psychological aspects I believe can keep you in or lessen intense pain. Rejecting it can relieve to some degree.

[@GARTHBOOTS]

we need pain relief so we can live a better life this disease is horrific and so very [ainful I have full-body rsd it went through my entire body my head,eyes,nose,mouth chest ribs whole face,arms,legs, im on fire and it wont stop we know all the other horrific sensations we feel all at the same time we have to bring this out to the four front I know your all working very hard for us and I thankyou all my heart and thought are with all who suffer.

[@GoldenSkeeter]

I am a 25 year old male with CRPS and took LDN (low dose naltrexone) for 3 weeks and my primary symptom became worse, sensitivity in hands. CBD pills handle my pain without any side effects. Just my 2 cents.

[@sweetness34km]

Ned to stop bad doctors to Stop tourturing rsd pat8ens