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.

Heat is awesome. Moving around in a warm water (in the 90's) therapy pool or applying a heating pad applied to her painful areas may make her feel better. NEVER use ice. Voltaern gel, Flector patches and Lidoderm patches may also help alleviate some of her pain.

I can't stand to have anyone touch me in my affected areas, let alone massage me. You may want to ensure that your daughter only see PT's are familiar with RSD and know the right way to treat the syndrome (if she'll even agree to go back to PT at all after what happened!) It's hard when a therapist has caused you a lot of pain to ever trust them to touch you again. Most of the exercises that I did at therapy were passive - just gentle stretching to keep my ROM.

The best of luck to you. There are some moms of teens with RSD on this forum.

XOXOX Sandy

Thanks Sandy our usual therapist was not the one who tried the massage so luckily she went back to therapy today. She had a hard time with it but she was brave. Her head is a little straighter on her shoulders now.

Every person with RSD is different, and every massage therapist is different.

I credit my massage therapist with helping me a lot. The doc at Clev. Clinic told me that having early massage therapy probably has kept me from developing the terrible sensitivity so many have.

I used to start crying before I went into the building - my body knew how much it was going to hurt to be touched. But, after a lot of treatments, it did get better. Sometimes she would just hold her hands over me - sometimes light touch, sometimes actual massage.

I already knew the woman - and trusted her - from her working on me prior to RSD...

I can not afford to go any longer. The areas that the RSD spread to since I quit going do have a lot more sensitivity than the ones the massage therapist worked on.

However - I was worked on one time by a physical therapist, briefly, for muscle spasm and I thought I was not going to be able to drive home, it hurt so bad afterwards.

And, while visiting a friend, I was having problems with pain, and his wife is a massage therapist. She said let me give you a massage - and I did - and it was not TO bad while she was doing it - but oh, man - afterward - for days I HURT all over.

That has been my experience... If you have the right person doing it then it can be helpful in the long run, even if during the massage or right after, it is worse.

Jules

Loretta from this Board also used massage therapy extensively when she was initally diagnosed. 100 units.

I had horrific problems with touch the summer I was first diagnosed. And I will never forget having the pain of having to wear clothes when it got cold here in RI. I just cried and cried. I used to walk my dog and I was in agony because I needed a jacket, it felt like having a one ton rock sitting on my shoulder.

I still have an adversion to anyone touching me, perhaps I always will. My husband knows to be careful and I'm not as guarded around him. I think massage therapy would be too much for me, but I can see that it's a personal thing. So I am glad that someone else gave you another point of view. That's what this board is very good for....

Good luck XOXOX Sandy

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 !

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