I'm wondering about what kind of experiences you have had with Massage. I am a massage therapist in Washington State. I had never heard of RSD until a patient called and wanted a massage to reduce her Migraine. As a good therapist I turned to the internet to learn as much as I could about the condition and how massage interacted with it.

I found information that said it was quite effective and just keep the massage as relaxing as possible and to avoid heat or ice. As always once I do my home work and learn what works I have several more patients with the same condition. Presently I have 3 patients who swear that their massages have been a life saver. I have been sticking to a medium to light relaxing massage and just following the patients feelings of when to treat and how deep. So far both patients have been coming in weekly.

I am wondering what more of you patient have to say and what experiences you have had. Since this has been helpfull for my patients maybe it will give the rest of you guys some relief. At this point I can't give any thoughts about the long term effects but with other auto imune diseases massage is quite effective.

Good luck
Pete

I can't stand to be touched in any way... light, medium, or hard touches kill.

I have a good friend who is a state licensed massage therapist and as much as she wants to help me... she says there is no way that I could handle a massage and I agree with her.

My voice is but one and I'm sure you will find some that can handle a massage and some, like me, that can not.

I wish you the best.

Abbie

Hey Pete,

I've had RSD for 25+ years.
And, massage is rarely indicated, except for one kind that I'm aware of.
Alexander Technique. It really worked well! (Have you heard of that?)
It's very soft and gentle, and concentrates on "extricating any pent up energies from the spine, on out, through the extremities. (It has admittedly been a long time since I've had it done). So, feel free to add to or update my memory!

Soft Tai Chi kind of stuff.

(a "Vigorous Rub Down" kind of massage, is the worst, it can start all the bad pain to flare, so, be careful).

Migraine responds really well to a neck massage and a soft chiropractic adjustment, imho.

Good Luck to ya,

Pete
Asb

No Massage for ME, Thank You...air hurts me..hubby "tip toes" when near me..
sighs

I think RSD/CRPS is a "heartless" disease..took away my active self, and also negates "touch" in my life,as well.

Dew

Hi Pete,
First, I think it's great that you are doing some research on how massage affects RSD. your curiousity and care reflects that you are a conscientious massage therapist.

Often, when I have tried to massage my own foot, ankle, and lower limb where the RSD is, it can cause a flare of burning pain...i think if the massage is vigorous enough it makes the nerves "angry....."
I have noticed, though, that when i massage very gently in an upward motion it helps somewhat with the swelling and doesn't flare up the pain as much...
Something important to note, though, is never ice an RSD area, such as a limb, on the back, etc. as this further constricts the vessels and is not a good treatment for RSD.
I hope this helps!

Hope4thebest

Hi Pete,

It is very nice of you to research RSD to try and help your patients - not many other doctors or health proffesionals would do that unfortunately!!!

I was 12 when I developed RSD, 2 years ago. It started in my left leg and then spread to include both of my arms within a matter of a few months.

Just after I was diagnosed with RSD, I developed severe swelling in my leg overnight. It was so bad that my doctor thought I had either a blood clot or compartment syndrome so sent me for tests.

The tests showed that I had severe muscle inflammation but my doctor said it was probably from the RSD and told me it was probably the worse case of swelling and RSD he had seen - nice to hear, huh?!

I was sent to Physical Therapy and the PTs did lymph drainage / massage to see if that would help with any of the swelling.

It didn't unfortunately and I was in tears during that session as I couldn't tolerate it.

A few months later, I still had the swelling and my Doctor arranged to make a cast for my leg to try and correct the dystonia I have as a complication of the RSD.

I was put under general anaesthetic and the PTs suggested trying the massage therapy whilst I was asleep to see if that would help with the swelling.

When I awoke from the procedure, I was in quite a lot of pain and the swelling still hadn't improved. My PTs were shocked that it didn't help and didn't know what else to try.

I still have swelling now and it changed from one day to the next. Sometimes it is really bad and other times, it isn't too bad.

I'm glad your patients are getting relief from your massages - thats great! I guess like everything with RSD, what helps one person wont work for another unfortunately.

I wish you the best of luck and hope your patients continue to get relief!

Alison

Hi Pete,
I developed RSD following surgery, but didn't get diagnosed for 4 years. My shoulder froze up and was sent to physical therapy. Very painful, but after 100 treatments got the use of my shoulder-arm back. I decided on my own to go to massage therapist just prior to physical therapy, to soften up shoulder, so my advancement would go faster. I'm glad I did. The RSD moved to other shoulder and I again had pt and massagae therapy.
Now have full body, and have continued with massage therapy,swimming, stretching, anything to keep mobile. It does help. I especially liked the lymph glands in my sinus area, helped drainage, and headaches. Thank you for asking and researching. What part of Washington State. My in-laws live in Port Angeles, and I have good friends in Bellingham. Sincerely, loretta

Hi
My RSD started 2 years ago when I had my left hand crushed and degloved at work. the first year I did medication, OT, Ganglien blocks, surgery and many other Treatments. My boss who is a great guy offered to pay for any treatments WC would not pay for. One of the thinks he suggested was massage. It has helped me as much as any thing I have tried she does a combination of different kinds one of which is lymph drainage. She did a lot of reading and most of my RSD is in my hand wrist and some in my arm she is very gentle on the affected areas. Some weeks she never touches my hand but she has managed to keep my arm and shoulder from locking up. It is the one thing I look forward to from week to week. I still use my medication and they also help some.

Woody

No way for me. I don't even allow doctors to touch my area or even from the knee down. I know everyone is different though. I remember when I first developed this I went to PT and he did something similar and it sent me into a flare up for weeks. I think for me I am trying to do light touch on myself and for very short times.

Hello Pete,

RSD/CRPS acts differently for all of us. Treatments that work for some of us may not work for others. No two people have the same nervous system thus the reason for how severe our case may be.

I have have full body RSD with some organ involment (9 years now). I have had many massages. Your comment about following the patients feelings is perfect. It shows you are good at your job and you have your patients needs in mind. I know by how I feel if I can tolerate the touch of a therapist. For example today my pain is awful and it's deep muscle pain and my skin burns, the shower will hurt today so it wouldn't be a good for a massage. When this flair up settles down it would be great to have a massage. It's like this from the stress I have had this week. Stress and anxiety are pain agrivators for those of us with RSD.

My therapist says over and over tell me if this is too hard. She is quick to remind me not to be afraid to tell her when it hurts. RSD is not a no pain no gain condition when talking about PT or massage. There is hot RSD and cold RSD. I have hot RSD and use ice packs to put out the flames. Some people can't tolerate ice and use heat.

For me keeping the massage as relaxing as possible is key.
Thanks, for taking the time to research RSD on behalf of your clients.
Take care,
Sherrie