Well, I have joined the ranks. Saw neuro today and he has no doubt that I have CRPS. Came right out without my even asking. I believe he's accurate. I think I have been in hopeful denial but I guess once you add painful burning stings + color and temperature change over months and months post-op what's that spell? He reiterated that this is a spectrum and that a lot of people get better with time. Was against any remotely invasive/aggressive treatment, says often people do that and they get worse. I think for me not getting a lumbar block was possibly best since I have had a degree of improvement from the beginning. I have probably read too many people write that they had spread afterwards. I might consider an oral sympathetic blocker like Phenoxybenzamine. For the time being I am told I am doing all the right things, exercising and increasing activity as able. Now if I could just keep my foot down...

Poop, at least I'm among family..
Littlepaw

Looks like you and I have had similar days today.

I suggest you read the "The Outcome of Complex Regional Pain Syndrome Type 1: A Systematic Review". Of everything I have read, it was far and away the most informative piece on the subject.

It is comprehensive but excludes patients with nerve injuries, so I'm not sure how applicable that info will be for Littlepaw.

Hi! I, too, am looking for a diagnosis and your description here is exactly what I am going through right now. I'm four months post-op (left foot) and scared to death that I'm not doing enough to work on healing. I would love to chat with you! I live about 40 minutes from Austin and really want to go see your doctor. I've seen about five doctors that throw their hands up! I'm new to this site, so I don't know if there is private messaging, or how to give you my contact info. Let me know! THANK YOU!

Howdy and Welcome fellow Texan!

I am so sorry to hear about your foot. Getting a diagnosis can be very frustrating. Make sure they have done all the appropriate rule out and re-check for your surgery. 4 months out is not very long depending on your procedure and the normal swelling from foot surgery can go on for quite a long time. Bunion surgeries are commonly reported to take a year. My own experience is that pretty much any swelling in my foot aggravates the nerves. That aspect may improve as you get further out from surgery. Since you are early into this, I think there is a lot of room for healing and improvement. As you are here in sunny Texas and pools are easy to access get in the water to do PT and walk if you can. Using your limb gently and without causing flare is key to getting better and avoiding loss of function. The water will help with swelling as well.

I have seen great doctors in Houston but my PM is fortunately in Austin at Capitol Pain.

I'm not sure how soon you can send a PM since you are new. The FAQ may say. Feel free to send me a message anytime.

You've have landed in a soft place at least and will find this a great place for sharing and support. I hope you find relief and healing soon.

Just keep Posting on the Forums and the functions that allow you to PM and utilise the site fully will become unlocked. The restrictions are there to protect us all from spammers and the like.

Dave.

Cool to see your "origination" resurrected here on Neurotalk LP. Wow ... Not only are we lucky (blessed) to have you here, but you've come a long way recovery-wise!

My husband has CRPS from a bicep tendon repair surgery it has spread from right arm to left arm to both feet and legs up to the knees over the past 2.5 years. We did not have the option of the injections in a timely manner. I believe that it is important to get aggressive with the treatment right away the longer you wait the more you chances lessen for some type of relief. I have studied this disease for years if there is the slightest chance you might have it get after the ganglion injections. It is a miserable disease and has totally disabled him. His was a work comp injury so any type of treatment took for ever to have approved. we have been through injections, many many medications and a spinal chord stimulator. I wish you the most of luck. I believe aggressive action if you can even find a physician that understands the disease

LittlePaw, it seems like CRPS to me. My leg responds to elevation too, but as soon as I get up and bear weight, the pain/swelling and burning start immediately. I was diagnosed almost six years ago. You definitely have key symptoms of CRPS. The blocks did wonders for me in the beginning with my right arm and hand, but now I don't respond to them. Only my leg responds (CRPS spread in 2014 due to knee surgery), and I'm hoping the ketamine helps too.