Hello My 14 yo daughter has RSD, we are going on 2+ years now, in both of her legs. Over the last 6 months her toes have become bent and are turning under and sideways and she just screams in pain. She says it feels like someone is breaking her bones. Has anyone else had this experience with your toes/fingers changing shape and deep bone pain? The doctors don’t know what to do. We are so desperate to get answers.

momofrsd
I posted this on an earlier thread. Hope it helps in some way:

confused:Yes. I still have boughts with severe spasticity and Dystonia. At one point, my spasticity was so severe it permanently curled my feet inward and toes under severely, and legs inward to some degree too (as noted by jpcrps). I have been retrofitted with a baclofen pump that takes care of the spasms for the most part. Though, My Neurologist is still adjusting it each time I go in. I did have to undergo an inpatient trial before the neuro surgeon would install it. The spasms are pretty persistent. I still have them; though, there has been considerable improvement. My Neurologist also added tizanidine 4mg at night to my prescription regimen. I am allowed another 4 mg if necessary. The tizanidine knocks me for a loop. That is why I only take it at night. Even with, I still only sleep 2-3 hours. I watch a lot of late night infomercials. ShamWow! For pain I am on the fentanyl patch 150 mcg and oxicodone 5 mg (up to 2 tablets) for breakthrough pain.

I eventually had surgeries to try to straighten my toes and feet after much consideration between the Neurologist, Orthopedic Surgeon, Anesthesiologist, my family, and myself. What it came down to for me was that I didn't have much to lose. I could possibly make the CRPS worse. That was a major consideration. I felt, for me, surgeries were worth the risk. The Anesthesiologist and surgeon both took special precautions to try to limit the spread of my CRPS. At first they were reluctant to do the surgeries, but after further consultation they agreed.

The surgeries really haven't helped me walk that much further. I do walk better as far as short distances are concerned. Shoes fit my feet now, though I rarely wear them due to sensitivity issues (which I had prior to the surgeries). I still use my wheel chair when I leave the condo. I have not regained strength in my legs.

The Surgeon severed the muscles. Yes; as in detached. The muscles still spasm and contract, but they no longer pull the legs, ankles, feet, toes into permanent contorted positions. Yes, the Myoclonic jerks are still there. My Neurologist is also injecting me with Botox every 3 months. The Botox paralyzes the muscles to keep them from contracting. So far the Botox seems to be working to a degree too to help with pain.

I do still deal with spasticity and Dystonia on a daily basis. Would I call the surgeries a success considering the high risk? That remains to be seen. I am post op approximately 6mos. We all have to do what is best for ourselves. I took the chance. I know it was drastic and very risky. I still have hope.

I also hope your daughter finds some relief. The CRPS is terribly painful on its own. Add the spacticity and Dystonia to the mix and it increases the pain ten-fold. Here is to better days ahead.

I have gone through the dystonia also in my feet, hands, and knees you can watch my youtube video undeer my years with RSD
What got my feet to straighten and knees was a trial SCS with vigorous PT and OT. For my hands it took the ketamine to help with that. I am so sorry for your daughter if there is eve anything I can help with please ask. I got my RSD when I was 16 and know how hard it can be.

Samantha