My Advice, after 27 years of this crap.
if you want massage, find a masseuse, who is learned, and capable of doing the "Alexander Technique".
This basically draws the "tightness", in the most gentle of ways, AWAY from the spine.
Everything is soft, and no massive muscle "digging", that just sucks....

Get this from an "Alexander Certified Masseuse".!!!
And, your daughter will be in a different world!

The tough rubbing and torque of a usual "rubdown" doesn't work with RSD! It simply turns it ON!
Anybody get that yet?

Accept no massage other than Alexander!

It's soft and gentle! Her muscles will relax, and feel as though they "fall away" from her.
the pain will go too.
Not forever, but for a while.....

No massage will do, rather than this.
I promise!

Check it out, and carry on!
Chiropractic is next best, if you can find a good young chiropractor!

I wish you the best, with your daughter!

Pete
asb

OMG....this is the first post I have found about knots on someone with RSD...now I don't feel so alone...heat is great for mine and I love epsom salts...hope she feels better

One of the knots in my upper arm has been there, non stop for several years. It came on almost instantly when my RSD moved into my upper arm and shoulder. I have even had botox injections into it to try to get it to loosen up. All the massage, meds etc, and it is still there. I usually use a lidoderm patch on that area, depending if I have one to spare. What I mean by that is, I do a body check in the morning and decide which areas hurt the worse that day, and those are what get the patch. Also if I need to go out that day, and wear a bra, I have to use one under my bra strap on one side. So I have to pick and choose. It does not relieve all the pain, but helps some after a few hours.

thank you everyone my daughter went for a second massage this week and she was able to tolerate it much better. They actually kept a flannel sheet between her and the massage hands and this seemed to really help desensitize her. She still hurt but she said if it would help her to get better she would try it again. Her hip is now hurting and she is having some trouble with pain when she lifts her leg in her thigh. We go to the Dr. at Vanderbilt tomorrow and we will see what they have to say about all of this.

Your daughter is lucky to have you as her mom. You are learning as much as possible about this disease, and that provides a great support system for her. My family does not even acknowledge that I am sick, and just tell me to cheer up and do something, nobody has ever asked about this disease and has no tolerance for it and the limitations that it causes. You go Mom, and best wishes to you and your daughter.