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!

You have obviously done some homework.

It is not ethical or possible for us to state if you have CRPS. You certainly do have some of the symptoms and your setup is similar to many of ours.

I agree that you need to start using that ankle. Physical therapy and hydrotherapy sound like a perfect start. It took me 3 months of physical therapy and home therapy for me to regain the use of my foot (mostly).

Now for meds. Did anybody ever suggest any meds? Neurontin is a very common drug that is often prescribed initially for a suspected case of CRPS. Neurontin (gabapentin is the generic) was very helpful in actually diagnosing my condition. WITH neurontin, I did pretty well, without it, I did not. We tried both. Doesn't work for everybody to be sure, but is often a first med tried. Naproxen sodium (generic; inexpensive) can also be helpful with inflammation. I take 2 of the 220 mg tablets twice a day. You really do need a doctor helping you with meds selection. Not using anything is really not a very good idea in my humble opinion.

I do have a suggestion for you though. DO NOT USE ICE. Or cold packs or the like. If you do have CRPS, ice is not recommended (by most professionals in the know). It feels good when you're using it, but can make things worse.

This much I know. CRPS is one of the most misunderstood chronic pain conditions of the human body. Even among professionals.

Good luck.........it can be tricky in getting a diagnosis. I used a handful of doctors before I got a diagnose, I suggest you get multiple opinions as well.

Up until acouple of weeks ago I would have said not without the pain but someone on hear said they knew of 2 cases with no background paun which ju stgoes to show how hard it is to diagnose our condition.
As well as no ice, no hot and cold water contrast therapy no aggressive physio and you should have pain medication prior to any physio session

Thanks guys. I appreciate the comments.

I'm definitely not expecting strangers on the internet to diagnose me (probably didn't word my request that well) - just trying to compare experiences and to be informed as I can. With everything that's happened with this injury (the re-injury would never have happened if I'd been treated correctly in the first place), I don't have the same trust in doctors as I used to, so I am trying to be a better advocate for myself.

I'm not on any meds at the moment. I was on SR naproxen for a while post-op but now I just take ibuprofen when needed. I don't really like NSAIDs though as they caused me stomach problems a few years back. I still have some Oxy from after the surgery but haven't needed any for weeks (months?). The only other things I take (not sure if this is relevant or not) is Phenergan for hayfever, which I take some nights to help me sleep, and a bunch of vitamins (Vit C, Vit D + calcium, glucosamine + chondroitin, CMO) when I remember. At this point I don't really feel the need to take anything but will certainly not try to be a hero about pain.

The surgeon did not tell me much about CRPS, and I didn't ask much because I was a bit shell-shocked. I got the impression he was trying not to worry me too much.

Thanks for the advice on ice etc - I'll certainly avoid it!

Repeated surgeries on the same are can be a trigger I believe. I was experiencing sweating, temperature regulation issues, hair growth, etc. after undergoing surgery, and when I had surgery #3, although my underlying structural issue was corrected, that was when the RSD pain began.

Sometimes the RSD patients that have the worst visual signs of RSD, don't experience the horrific burning pain, and vice versa--those with few outward signs sometimes have the most severe pain.

A block as a diagnostic tool might be something to consider... If your insurance will cover HBOT or Ketamine, you may have a really good shot at remission if you do in fact have RSD. Avoid further surgery for as long as possible, and birchlake's advice is dead on.

Hi CT,

Researching RSD is a great place to start.

Moving forward with gentle PT, especially water therapy sounds like a good plan......whether it is or isn't RSD.

Like LL mentioned, if they do a epidural block to the affected area, it could help with the symptoms and could help with a dx.

Ice is a common recommendation after orthopedic surgeries, but can trigger RSD, as BL mentioned. So, being sure about the dx before using ice again is important. With that, I'll throw out there......ice has been my saviour for treating my unbearable pain before I had adequate pain meds. I truly believe I would have gone insnae without it, I could not handle the pain. I'll never know for sure if the ice was what gave me the RSD. What would have happened if I had pain medication from the start and didn't require the ice ?

We have read many cases on here of RSD without the severe pain that seems to be it'e trademark. Your high pain tolerance may be what is "saving" you right now. Keep your treatment options open incase your body's rewiring with RSD changes that tolerance over time.

I have the concern that you, or some doctors, might dismiss the RSD dx because of your discomfort, not pain, when early treatment may stop this from developing to it's worst.

Keep us posted how things are going !

Thanks so much - you've all given me some much needed perspective. You guys are awesome!

Finz, that's a great point about my attitude to pain possibly being a problem in getting an accurate diagnosis. I tend to forget to mention any discomfort (some of which should probably be considered pain) unless I'm actually experiencing it when I see the doctor. I think I need to start keeping a record of what I feel so that I can give the doctor a correct description of what kinds of pain I've experienced.

I agree I should act as if it's RSD for now even if it may not be.

Re meds/blocks/etc - what kind of doctor should I see? Do I go back to my surgeon? I am not sure how experienced he is with this, so I guess I should find out. Is there a particular type of specialist I should seek a referral to?

I wear compression socks most days to help manage swelling - is that still ok if I have RSD?

I did a 7 day pain dairy for my specialist Starting with the pain level when I woke up. everything I did throughout the day and the pain level when I finished eveni f it didn't affect the pain, that way you know beforehand that if you do this thing it won't affect the pain so you don't get aanxious about it.
Right up to the moment I put my head down, pain level if I woke up diring the night (every night).
Prat turned round and said I don't need it I know you have RSD maybe you'll have a better doctor

I see a pain anethesiologist who is familiar with crps. I also see a neurologist as needed. Plan on seeing a pain psychologist too. My pain anesthesiologist requires it because of the stress and depression crps brings with it.
Im not sure about the compression socks. Crps is considered to possibly be caused by not enough oxygen getting to the tissues- that's why hyperbaric oxygen treatments have been used. If your compression socks are tight enough to impede your circulation in any way, I would think that would be a problem. On the other hand, if they keep the swelling down, I would think that would be a positive. Perhaps someone else will chime in about this.

When my surgeon felt I had CRPS he referred me to a pain management specialist that was familiar with the condition. She treated me and referred me on to an anesthesiologist who specializes in crps.

Nerve blocks are usual 1st course of treatment. Caution with PT is for not over doing it if it is crps as that can make the condition worse. I was given PT in the pool, and now do self PT, gentle ROM etc.

Your injury sounds as though it was pretty extensive, even without the crps possibility you will have to do some rehab to regain strength and flexibility.

Wishing you well, and hope that you do not have crps, or if you do, that they can get it under control FAST! The best chance for remission is EARLY in the game.

Aloha,
Jenny