Thank you again for your replies. I had an appointment with a new doctor today in Seattle at the University of Washington Pain Center and CRPS is one of his specialties. He said that I don’t meet all the criteria for CRPS but it seems that I have something that comes across as both CRPS and small fiber neuropathy (even though my SNF biopsy was normal). He said that what is going on with me is “CRPSy” enough that he would treat it that way. He thought that it’s possible I could have plantar fasciitis secondary to the CRPS and to treat it with orthotics and stretching, but do not do any injections into the foot because of the “CRPS”. These are the things he said to consider doing:

1. Do the neridronate trial if I am approved (will find out in the next two days, and am scheduled to start on Monday).
2. If not, have a triple phase bone scan and possibly be treated with a different bisphosphonate infusion like pamidronate.
3. Continue with PT, OT, graded motor imagery, and wean off crutches.
4. Try switching to lyrica instead of gabapentin and try nortriptyline.
5. Low dose naltrexone
6. Take Alpha-lipoic acid and Acetyl L-carnitine. (I did take these for a few months but may go back on them now)

It’s so confusing how you get a different view from every different doctor. But I liked this guy, and he was extremely knowledgeable. So, a lot to think about, but I can’t do anything until I find out if I’m doing the drug trial. One funny thing that happened in the appointment: he was going over my history and we were talking about my IBS that I used to have. I said “it resolved when I cut out wheat.” But he thought I said “weed”. Got a good laugh out of that.
Missy

Hi Missy,

I am also a very new member, and from what I see everyone is very helpful. I'm so sorry you're going through this, and with both feet has to be horrible!

Sounds like you are working with a great doctor. I'm also looking into the alpha lapoic acid and acetyl l carnitine.

Good luck with dealing with this. I have to admit though, your original post has me concerned about the ability to continue much longer. I hope that I am someone who can work through the pain (and side effects of the medications).

Take care,
Jes