Hi everyone,

Last week my orthopedic surgeon told me that I was showing possible early symptoms of CRPS. I was pretty shocked because I know CRPS is a very serious condition and no symptom I have seems all that terrible (at least not yet). So I've been doing some research, and am after opinions as to whether I really might have CRPS (does it start out like this?) and advice on what I should be doing to give myself the best chance of a good outcome.

So here's the backstory (sorry, long):

Back in April, I fractured my ankle. I had surgery, followed by 8 weeks immobolisation and non-weight bearing. When the cast came off, I was shocked to see how swollen and purple my foot was, but I was told it was normal (by a doctor who did not really look at my foot). I did a couple of months of physiotherapy, during which time the swelling and discolouration reduced markedly, but I never regained anything like normal function, and had terrible range-of-motion. In August I decided to get a second opinion from another surgeon due to the ongoing stiffness and a niggling feeling that something wasn't right. Well, it was extremely fortunate that I did - I had serious ligament damage that hadn't healed right the first time, so when I started walking again I re-injured the ligament and my ankle was now chronically unstable and almost dislocated. In September I had more surgery, which removed a bunch of scar tissue (thought to be the cause of the stiffness), an osteochondral lesion (cartilage damage) and to fix the joint alignment to allow the ligament to heal again. Had the surgery been even a month later, I probably would have had to have my ankle fused. After the surgery, I had another 6 weeks of immobolisation and non-weight bearing, followed by four weeks of 'gentle' use (I was allowed simple flexing, and to touch my foot to the floor without bearing substantial weight).

Last week I went back to see the surgeon for review (10 weeks post-op) and he was shocked by the colour of my foot, which goes a reddish-purple within a minute of not being elevated, but does return to normal colour when elevated. My ankle is also quite warm whilst my toes are cold. The discolouration is worse when I'm cold and I don't like the feel of an icepack on my foot (it is ok above my ankle though). My skin is dry but not uncomfortably so and I have more hair growth on my toes than usual. My ankle is very stiff again though the surgeon again thinks this is scar tissue. I don't have much pain but I do have a burning/tingly sensation on the back of my heel. I did not like the surgeon handling my foot but that was more due to fear of pain than actual pain. He asked me about pain but I am not sure if he believes me when I say I have little pain, since I have never reported any pain, even when I was walking on a "practically dislocated" ankle. I have had reason to believe before that I do have a high pain threshold, but I mean it when I say I don't have much pain and the most I've needed to take for it is a bit of ibuprofen. This lack of substantial pain makes me doubt that I have CRPS.

So he did not say I have CRPS, just that I have possible early symptoms. For this reason, he changed the treatment plan from here, which was originally to be more surgery before Christmas, but is now focussed on getting me using my ankle as much as possible. He has cleared me for full weight bearing and to start physiotherapy and hydrotherapy. He gave me a letter to show the physiotherapist, which reads "I am a little concerned that the left foot is showing signs of mild RSD, and for this reason have asked her to move to full weight bearing and hydrotherapy. The physio will need to focus on mobes and anti-dystrophy maneuvres". I have my first physio appointment on Tuesday and see the surgeon again in four weeks time for review.

I am pleased to be starting to use my ankle again but am apprehensive given my earlier experience with re-injury, and am worried about the possible CRPS/RSD - although I understand that if I do have it, then I am lucky to have had it detected quickly.

What do you think? Does this seem like the start of CRPS, or would I have more pain by now if it was? And other than the physio and hydro, is there anything I should (or should not) do in order to maximise my chances of a good outcome? What questions should I be asking the physio and surgeon?

Thanks!