I have crps in my left arm and right leg. I suffer complete paralysis from my elbow down as a result, and partial paralysis in my ankle and toes.

To start with my physio/PT was able to straighten out my fingers/toes and ankle during usual sessions, although extremely painful at least this meant I could prevent lasting damage and wastage to the joints from lack of movement. From October last year my hand had completely clawed over and my wrist is bent at an inward angle so we haven't been able to do anything with it. Since then my ankle and toes have followed the same pattern and I now have tibial torsion as a result of the contracture.

Both are in desperate need of straightening out to prevent any further problems (I have already developed sciatica and 'snapping hip' as a result of my leg being turned in and it just causes more pain than necessary). A few weeks ago my new physio/PT discussed the possibility of splinting my arm and casting my ankle under a general anaesthetic. They would be in soft splints and casts to allow for swelling and for them to be removed during therapy sessions. She said she had done something similar with a patient at another hospital she used to work at and it worked out very well. The only thing that worries me about this is the allodynia, Ive only just managed to work my way back into very soft material shoes and very rarely have anything in contact with my arm. When I was at the hospital for my stellate ganglion block yesterday I couldnt even wear the hospital band on my left arm. Im not sure how I would cope with it.

I was just wondering if anyone here had experienced anything similar? How did you find it?

My CRPS started in both knees due to an accident (dashboard injury). My right knee kept bothering me most, so that was "tackled" first. They put me in a cast from ankle to hip to try and stabilize the knee, to see if that would work - it didn't (and I had blue feet by then) and I later had to have surgery on that knee. Surgery lasted 3H, they had to clean it out (debris) and fix a few things. After surgery my leg turned black. Back then they didn't know I had CRPS, which is why they still put a cast on and still did the surgery.

Almost 3 years in, I was diagnosed with CRPS, by that time it had spread to both legs throughout (toes to hips). The left knee was left like it was.

I wouldn't let the casts be put on if it isn't 100% necessary (for a broken bone or something like that). But that's just me.

Thank you for your reply. I am sorry you had such a rough time of it. I think the theory here for me is that it would be safer to cast than to operate, they want to straighten my leg out to prevent damage to my hip and the CRPS spreading further up my leg x

I unfortunately don't have any experience to offer, but I would think that it would be a good time for pretty aggressive pain management, whether that be opioids, stellate ganglion blocks, ketamine infusions, or whatever. Personally, I would encourage you to look into a ketamine infusion, but that's just because it is the only thing that has been helpful for my daughter. Just like any treatment, they don't work for anyone, and it can be challenging to find someone who will do them. But I would think you would want to double down on any treatments you have access to to avoid a flare.

Yes. Your doctor should watch you like a hawk and maybe even before and after the cast extra treatments can be given, just to be sure you don't flare-up the CRPS.

Hi Abigailsophie,

Preventing further contracture and resulting problems is a worthy cause. So many additional discomforts can come from being out of alignment. I really like the idea of the casts/splints being soft and removable. Depending on how often you go to PT it may be helpful to take them off more often to do passive range of motion on those joints if you can tolerate it. Tendons and ligaments tighten up so quickly and routine movement of them can be very helpful. I had both casts and splints as part of my journey (not for the same reasons as you) and I remember being surprised by the atrophy and stiffness that resulted. Being able to do passive movement could make a big difference and minimize losses in range.

I remember too how awful the bandaging felt against my skin when I developed CRPS after my last operation. Find the softest material you can that causes the least aggravation and use it as a liner. Topical cream may help. I use one with ketamine and gabapentin in it that I find helpful. Avoid opiates when and if possible. They certainly have their place but can contribute to hypersensitivity.

Good luck on this. I hope you find relief with it. I am two years out and still wear a brace at night to keep my foot from contracting. I can definitely tell when I don't use it.