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

I would just say this. Massage Techniques - In most cases are created by massage therapist that are not able to make a living taking care of people because they just aren't good enough at what they do. So they invent a new technique. Yes I have heard of the Alexander Technique. Though in practice if you went to 10 massage therapist using the alexander technique you would get 10 vary different massages.

So far I have stayed very light with my massage for my RSD patients. I always listen to the patient and work within the boundries they set and I agree with my RSD patients a vigorous rub may cause them more harm than good, But woking very light and then slowly working harder listen and watching for any signs of agitation and at the slightest sign back off and working lighter seems to work. I've been using just the basic swedish massage technique that is the basis behind almost all techniques.

I would tell you that if you listen to your body and get a light massage when its quiet you may get positive results may patients have said their flare ups since getting massages have decreased.

In all of my patients I also notice. They are depressed and worried about the future. I think this would be a natural response. I think that part of their results comes from the up lifting conversations that we have. As I have been reading through you descriptions and post it seems very clear to me that modern medicine seems to be letting you down and giving each and everyone of you depressing out look. I call this VooDoo medicine. Be carefull not to believe all the bad news but listen to it.

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

I am glad to hear your thoughts. They seem to fit with my patients. I think the light massage helps because it is relaxing and they seem to say their symptoms are much with increased stress.

When doing massage in an upward direction as you stated you are moving the blood towards the heart. With all massage you should be pushing towards the heart. You see the veins have gates and if you push away from the heart you can damage the gates which would harm your circulation and cause vericouse veins. Keep up the light massage when your body allows some of the sources I have been reading say that massage can back some down from stage 3 to 1. This is the most encouraging news I have heard. Another important link seems to be getting plenty of sleep. Maybe sleeps suddies would be helpful.
Pete

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

Everything I have read from modern medical journals about RSD states to stay away from both HOT and Cold

Thought, In one of the replys someone stated they had "Hot RSD" they said that their are 2 types Hot and Cold. Also stated with the "hot" cold helps and with the "cold" hot heat helps. Don't know but if they are correct sounds knowing this would help a lot. Becarefull and try things slowly and just be aware that modern medicine is coming up with cures at a faster and faster pace. Just realize if you have little or no hope today tomorrow their maybe be plenty of hope. Keep your chin up and smile when if your feeling down.
Pete

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