Quote:
Originally Posted by Cassmom
My fourteen year old daughter(CRPS sufferer) went in to get her pysical therapy done and they told us she had a lot of knotts in her shoulder and neck where she has the CRPS and that they where starting to get on the left side of her body too. They suggested she try to have a massage. Of course the massage therapist couldn't touch her hard enough to even work on the knotts but she endured the pain of just feather touch through out the 30 min sesssion because We thought it might help de synsitize her. Now she is in so much pain and I feel like an awful mom.
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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
