Just wondering if when you bend all your toes is your rsd foot alot different than the other foot because mine feels like all the bone in my toes and foot seemed to have started crumbling.. or something? The rsd foot seems like the bones are just getting all rubbery looking and my foot have no bone defintion to it??/

Have you had a bone scan?

that would show if the bones are being affected.

Hi SunshineGirl,,
This happened to my left hand. I was diagnosed with RSD after 4 years with a bone scan using a dye. It shows the deterioration of the bones. I have RSD in both of my feet now and they are deteriorating. All my toes started curling up, so my Dr. had me do exercises in my pool and after 4 months they touched the floor again. It's important to get gentle physical therapy and I did massage therapy on my own. I lost my massage therapist-moved but am looking for another one. But bone loss is a sign. I can feel knots in my toes. Have you seen an orthopedic foot specialist? It was a sports injury orthopedic group that diagnosed me after 4 years. I saw the hand specialist.He ordered physical therapy the next day after the bone scan. When he saw my hand, he said RSD in less than a minute. I flew a couple states away to him, then after a few therapy sessions, I found neurologist and orthopedic hand Dr. My hand is partially paralyzed-delay in treatment. Had a bad diagnosis from a rheumatologist-said I had RA. The blood tests were negative for arthritis, but he said I had it anyway. I knew he was wrong is why I went back'home' to find out what I had.
Keep exercising and stretching so you can stay mobile, walking. Take care, loretta

Yes I have had a whole body bone scan with dye and it highlighted it all up. I just don't remember the foot having a big hump around the toes at that time.. Thanks

Loretta Yes I am still working but it is difficult especiallly 12 hours.. Write more later kinda busy at work right now.. Take care

SunshineGirl,

I have had RSD in my left foot since 1986. In 2000, I needed orthopedic surgery because the metatarsals had deteriorated so badly, they moved around with every step. The three larger ones were screwed into place and ultimately fused into one piece, similar to a spinal/disc fusion. The two smaller ones were too small for screws, so they were essentially packed with material to hold them steady.

Very recently, the smaller ones have started moving around again. I will need to have this checked out. I don’t know what kind of remedy will be suggested now.

In general, I do not have much mobility in that foot. I cannot bend my toes very much, and the ankle flexion is limited. However, it is much less painful than when all of the bones were free to move anywhere they wanted.

Mike

Mike Thanks for that.. It feels like my bones metatarsals and the smaller ones are just crumbling in my foot.. Working 12 hours on my feet in gravel can't be good. My pain management doc has never even felt of my foot much less looked at it>> Imagine that!! Of course I never thought the doctors knew as much about my pain and my body as I do! Thanks again.. I will schedule a foot specialist next!!

As my foot keeps getting smaller and smaller, Iam finding little knots and things I never knew that they were there before. Sometimes one of them sits on my brace.It hurts, but the doc says its ok for now.

Sue K.

My foot hasn't gotten smaller and smaller but there is a knot on top of my metatarsals.. Really big one..

Both my legs including both feet are affected. Yes my toes are very weird in that it almost feels like there are fragments in them preventing me to bend them, and my toes do bend in a very odd way, they don't bend normally and practically don't bend, plus there's tremor in my feet. Esp. my left toe is pretty strange. Both toes and feet are quite weak.