has anybody had any luck with rolfing or other intense forms of massage in relieving your pain? i guess i'm only addressing people with isolated rsd--mine is only in my left foot, which nobody touches but me (sometimes i'll have my bf or mom put tiger balm on it, but SO gently), so i'm able to get massages elsewhere on my body without fear or pain. my gait and my spine are messed up from limping and favoring my left foot for so long, so i'm wondering if doing something to realign my body could contribute to a more correct nervous system response to stepping down. one of my PTs did this thing to release tension in the tendons of my left leg, which she said would minimize the jarringness of my step--similar idea, though i'm not sure if it worked or not.

btw: it's been a while since i've posted, so here's my status: i've had slow-developing RSD in my foot since i strained it on a run in 2001; first found myself on crutches for it in 2004; wasn't diagnosed till november 2008.

thanks, everyone! i always feel better after a visit to this site. i sometimes forgot i'm not the only one in the world dealing with this invisible tyrant.

I tried some massage techniques, my suggestion is STAY AWAY from any deep tissue stuff, especially rolfing.
A technique called "Alexander" is very gentle and worked well.

Still, I'd suggest a good chiropractor, ask around, and you'll find one.
See if s/he is familiar with rsd.
Dr S. in Philly highly recomended Chiro for me, and well, it WAS my chiro, who first suspected rsd!

Like anything else, there are some very good ones, and not so good...

Be well,

Pete

I am so glad that there are others out there with RSD with the same hang-ups as myself. I can't fathom letting just anyone TOUCH me in my affected areas. I can touch them. And I wouldn't have a problem with my husband touching them, although he knows where my painful areas are and is careful not to bump or jar me where it would hurt. But I have a total phobia with anyone else trying to touch, let alone MASSAGE, my shoulder, my neck, my head, or my right leg where my RSD is located. I had 2 rotator cuff repair surgeries with very aggressive PT after both, which likely caused the RSD. I really think I may have developed some PTSS.

The one time the occipital area of my head was massaged, the results were disastrous for me. Although I felt dizzy and sick to my stomach immediately afterwards, it wasn't until much later on that the truly awful pain hit me. I suffer from delayed pain with my RSD, so I can't always tell how something is going to affect me until hours later.

Unless someone was to convince me that massage to going to yield some incredible results I have no intention of ever letting anyone touch me like that again. There's got to be a better way.

Can you perform stretches, exercises, walking, etc on your foot?

Good luck. Sandy

it's not so much touch for me as the possibility that it'll get bent or manipulated. i've had doctors flare me up, of course. and my boyfriend steps on it sometimes...poor guy, it just happens.
yes, i can stretch it. i can do whatever i want as long as i'm not putting weight on it or twisting it. though, oddly, doing certain strenuous activities makes it send out brief, nervey lightning bolts--like when i cough really hard.

i love rolfing. since its just your foot, i would think rolfing might help.

good luck

mike

rolfing......Im not sure what it is, but man it sure reminds me of one of those friday nights where I drank too many long island ice teas, shots of tokillya, and beer.

All I did when I got home was rolf.....just me rolfing all over the place!

Have you ever had it checked for a pinched nerve somewhere along the line?
I remember one gal that used to post here early on - she had a RSD dx for yrs until a chiro asked to check it and it was a pinched nerve in her ankle or foot.
It almost sounds like something like that to me.

do you still get the swelling and color & temp changes, mottling - but not skin sensitivity?

Hi Mimichicago,
It may not be for everyone, but for me massage therapy followed by physical therapy weekly for a year, got my full range of motion back. I wasn't diagnosed with RSD for 4 years. Now have full body. I believe in my case, I have complete mobility and no touch sensitivity because of both therapies. There was delay in diagnosis of my left hand, thus I do have partial paralysis in left hand. I had gentle massage therapy to help soften, loosen, tissue before physical therapy. the frozen shoulder happened following surgery. I felt the therapy was better than surgery to break shoulder that they wanted to do. The massage therapy prior to physical therapy was my idea and I paid as insurance didn't cover it. Massage therapy still feels good to me.I believe my surgeon knew I had something happen during surgery, but sent me to rehab dr. for 2 or 3 therapy session. Right after surgery, my arm swelled and his partner withdrew huge amounts of lime green liquid about 3 different office visits. This was 14 years ago. I was in terrible pain and shocks thru my body. My present Dr for the last 5 years, told me I really got RSD from original surgery. RSD used to be called hand shoulder syndrome. I know now green means infection and they didn't even give me anything or say green liquid and no movement wasn't normal. It was a breast tumor biopsy in the breast and deep in underarm lymph gland enlargement. The surgeon couldn't run the other way fast enough.
Like I said, I had to have gentle massage and it helped a lot. About 3 years ago my toes curled up off the floor and thru swimming and massage therapy, they were touching the floor in about 4 months. I'm grateful to my present Dr. for keeping me mobile. I still stretch and practice therapy almost dailey Hope this helps, take care, loretta