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.

Hi Cassmom, I'm so sorry your daughter has CRPS. I have had this 15 years. I wasn't diagnosed for 4 years, but immediately started physical therapy and massage therapy following surgery that caused frozen shoulder (RSD) I took pain meds before treatment and yes was very painful, but now I'm glad I was able to go thru it. over 100 times each treatment. I still benefit from light massage therapy. But like was mentioned, we all respond differently, so please don't blame yourself for trying everything under your power. We even respond to meds differently.
I get the knots too. I feel there is some connection with RSD and knots or lymph glands. I have noticed lymph glands swelling prior to a spread or flare in new area. I still give myself massage in the sinus areas. I've had massage on my scalp and face. There is a certain way they massage in an outward method that actually takes the swelling (infection) away.
Sports athletes use massage on a regular basis-you could call a sports injury group and ask who they use. I found a physical therapist who had just came of the PGA tour of several years and opened his own therapy business. We was so good on the shoulders.
Please don't blame yourself, we all try our in choosing treatment that works, but we don't have control over what works or doesn't work. That adds to our frustration, what works for one, makes another person worse.
I do believe having physical therapy and massage therapy for me, has kept me mobile. I know have full body and am totally mobile with the exception of one hand. Wrong diagnosis and then delayed diagnosis, have 50% use of hand, but can cut my own food, button clothes, peel potatoes, am very grateful for a tot notch orthopedic hand Dr. (sports injury group) in another state. Diagnosed me in 1 minute followed up with nuclear med test confirmed it-Got me into pt next day. Am so glad i disagreed with my hometown doc that said I had RA. The test was negative, and I didn't believe he had correct diagnosis.
A site that has a lot of information is rsdrx.com Dr. Hooshmand treated RSD for 40 years in Florida, He is now retired, but has his website up. Lots of good information. Go to puzzles and it has 146 puzzles or questions and his answers.
Welcome to the group. In Cleveland, they have a Cleveland Clinic Childrens RSD wing of hospital. Some here have gone to it. We are here for you and your daughter. Take care, loretta with soft hugs