I do not suffer from severe pain at the lightest touch....my pain is deeper and localized at the neck shoulder. Having clothes on is annoying/aggravating but not exactly painful to me. Massage has been VERY helpful to me. It helps tremendously with my headaches (occipital neuralgia) and fibro issues. If those pains are tamed, the RSD pain is easier to manage. I would do it everyday if I could afford it and if I could get transportation there !

So......I don't think I would say the PT was wrong to try it.....more of a case of that didn't work for her/don't try that again !

It definitely doesn't mean your a bad mother ! You are desperately trying to find some relief for her ! It works for some of us and not for others.......no way to know which group she was in before she tried it ! All you can do is use common sense to assess the rationale for any treatment and weigh the risks/benefits. It's not like you agreed to a bizarre new fangled thing you knew nothing about and didn't bother learning about. Massage is a well known and proven effective treatment for many conditions.....and for just plain feeling good !

Please don't be so hard on yourself !

I had this mistake happen before my dx with rsd. From that point on I will not even allow a doctor to touch my leg. No finger,no reflex test etc. All the rsd specialists I have see have been ok with this cause they know that some people it send them into a horrible flare up. I know when I went to Cleveland Clinic I was pressured by the PT lady but would not allow it. For me I try to do touch myself lightly and try new fabrics. I try to increase the time on my legs etc. I have read a lot how with rsd when the patient touches there area it is easier for them to tolerate then someone else. You are not a bad mom and I have read many stories of people having similar happen. It seems like part of rsd treatment course is having to face things that don't work. FOr me this condition has really made me use my voice to doctors. It is like a catch 22 because I want to be out of pain so much but over the last 3 years I have learned what makes me worse and so I won't be pressured into something now. Does this PT person work with a lot of people who have had rsd? I really feel it is so key with doctors and other treatment people that they know about rsd. It is treated so different then other conditions. I know as mom you feel helpless that is what my mom always says. It is so hard to watch your child in pain. For me as the patient just having my mom listen,comfort and help me hold to hope has really gotten me through. You being on here shows that you are a great mom. If you want any support or I can help in any way you can DM me anytime

Have her try warm epsom salt baths. My 16 year old daughter also has RSD, if you would like to talk, you can pm me. I hope and pray that your daughter finds relief.

Sandy

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.