I'm so sorry to hear all that you have gone through and are going through. Please know that you are not alone...I have found so much strength and support in this group especially from the perspective of learning to live with and cope with this condition.

I was off of all meds for several years (I too never got any real relief from the meds I was on and they caused some nasty side effects). Now I am on a couple since I fell off a ladder 8 months ago...but am hoping to be off of them once they are able to treat this new additional injury and I can get back to baseline pain that I was used to functioning with.

I hope that this program works for you...it sounds like you are in good hands. I know things like desensitization therapy sound like a load of BS...but it helped me a lot. And from a mental perspective it was a huge win for me just to be able to wear normal clothes again.

Do not be afraid to share what you are feeling here...this is a safe place and I have learned so much from all the people on here during my years on this forum. The same things don't work for everyone...but one tip here, one suggestion there, and it adds up to reclaiming a more normal life. I can't do things the same way I did them before...and there are many activities that are beyond me...but I have found new hobbies that bring me joy and new ways to accomplish the same tasks and things I loved.

There is hope. You are very strong to have been through everything you have and to still be fighting. Take care and keep us posted on how you are doing.

hi ocean. i'm sorry you have rsd and have had such a hard time dealing with it but am glad you found what helps you most. everyone is different in how they deal with rsd and what works for one may not work for another. i have had rsd for over five years and know that for me there are limitations to what i can do because of having rsd. i do the best i can in dealing with rsd but know that pain meds, gabapentin, antidepressants and antianxiety meds help me be able to get out of bed, walk a little , shower, brush my hair and deal with the horrible constant pain that rsd causes. my pm dr told me that allowing the pain to go untreated could aggravate my rsd so i manage my pain with meds and pain coping methods. i also try to move a little each day. i cannot do what i used to do prior to rsd but i have learned to accept this as my limitations due to rsd. i am glad that you are able to work through your limitations of rsd and still do what you love. i hope you continue to get better and wish you all the best.
p.s. the people on this forum are awesome and give a tremendous amount of caring and support. you are definitely not alone in dealing with rsd because NT has some of the kindness people i know. i have found that they to are always help when you're need it. take care and i wish you all a low to no pain night tonight.

Hi Oceanchild,

Welcome to NeuroTalk!

What a story!
I am so glad you have shared your story and I hope you will keep us updated when you are able to do so.

A life of simply covering pain with meds is not very helpful, nor is it very inspiring. It gets old and can feel so restrictive and even hopeless. I am glad there are programs offering some potentials alternatives.

I feel neuroplasticity is real and I try to keep up on this as much as possible.
I work on this alone, as I do not have these types of programs available where I live. I have done a great deal of desensitization on my own, which was difficult, yet has paid off.

I agree with Zinnia, as I, too, was so happy to read you are again riding a bike! Wow! I have been an avid "roadie" in the past. I had to give up my bikes several years ago now. I have not yet sold them. I still have hopes of riding them again. I would be very, very happy to be riding any type of a bike.

I do understand your feeling of being alone.
However, you are not alone.

I hope to read an update when you are up to it.

Thanks again for sharing!

Love All Around,