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.

I feel that medication is a very personal thing and something between you personally and your doctor. No two people are the same or react the same to the same things.

That cream? What is it called? I've never heard of ketamine/gabapentin cream, ever.

Sorry for any confusion. I could've been more clear about compounded topicals. I have not been on much lately and skimped on details. My topical is made by a compounding pharmacy for my particular needs.

It has 10% ketoprofen, 4% ketamine and 6% gabapentin in a creamy base. DMSO was added to help absorption. This was prescribed by my Doctor. We could have added lidocaine but I opted to buy it separately over the counter. I tried another topical formulation that did not help nearly so much. We are indeed all different.

I absolutely agree that medications are highly personal and between a patient and Doctor. That said, we can pool tremendous resources of experience by making suggestions from our own toolboxes. I am sure Abigailsophie understands I was offering something that "may" help and was helpful for me. We must all follow our own wisdom on what is best for us based on our knowledge of ourselves and the advice of practitioners we trust.

Best to you Abigailsophie on whatever treatment you pursue.