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Anonymous (@anon37227499)


Brain & Nervous System | Last Active: Jan 16 2:21pm | Replies (114)

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Anyone out there with RSD/CRPS?

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Replies to "Anyone out there with RSD/CRPS?"

I have rsd for more than 20years, but I can't get my family to understand that I hurt all the time. What do I do?

I am having a flair up, and it gets harder every time. Does anyone out there have any suggestions or feel like I do? Thank you for listening to me and I everybody is having a better day than I am.

Hi @rivermaya34 , I forget to tell people where my pain is located. I have it in my left arm and both shoulders, my right elbow. It's also in both hips and knees. Some days are good, but when I try to help around the house I get "put on the shelf" so to speak. Then I get a family member to say to me " you are not doing enough!" , That hurts. Now I am hurting and I want to protect myself and have a plan for me. Do you have any suggestions on this? If you do I would like to hear it, and I thank you for listening to me rant on about this. Again thank you.

Has anyone here been prescribed Mexiletine for CRPS? If so, what is your experience? Asking bc it's the next best thing my neurologist wants to try. Thanks for any input, wishing you all pain-free days!

Prayers for all of you, too. I can’t describe the pain I felt. It was terrible. I encourage you to look into as many as you can. I became my own advocate. The University of North Carolina was a blessing for me. Try talking to a nurse at Mayo and see if they can guide you like they did me. Good luck.

By the way…medicine did not help me. Watch the side affects!!!!

CRPS Type 2 going on 22 years January 2nd.

My daughter lives in North Carolina and has been to the Doctor and then to a Neurologist. They both feel she shows signs of MS. I understand Mayo does remote second opinions. My daughter needs a MRI which they
have scheduled for her the 10th of November. How would I go about seeking a doctor to give a second opinion for this MRI? Please help. Thank You.