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 !

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