My story
 

So here is my story and progression of symptoms

Dec 2013 foot surgery - pin & staple to repair arthritic joint

Foot discolored redish/purple 8 weeks while I was non-weigh bearing, color went normal as soon as I started walking with boot even with aid of crutches

Swelling was for a good 6 mos post surgery

Big toe nail stopped growing for 2-3 mos at about 5 mos post surgery, cuticle as well when it started growing again big ridge across toenail with new growth, not faster or slower than normal.

I didn't notice coldness until weight bearing and I would stand on tile floor and don't recall how long it lasted maybe 1-4 mos post surgery

Never had sensitivity to light touch over surgerical area, some on big toe which we have now determined is bone spur

Some pain when press down on hardware site sends nerve signal to big toe

16 mos post surgery Cortisone injection to try free nerve from scar tissue
area directly around injection sites turned red/purple 1-3 weeks post injection. First week post injection increased nerve symptoms couldn't wear shoe on foot as rub caused burning for 3-4 days. Foot nerve issues have been worse since injection more quick flare ups last a second or so of shooting pain.

No swelling since the 1st 6 mos, only color change is post shower for 30 minutes area turns pink just in area of cortisone injection. Once dry it is whitish in color but I believe this is consequence of cortisone it was not that way pre-injection.

Hard to tell seems like might sweat more now in AZ summer heat but difficult to say if more than right foot.

Now I am 20 mos post surgery trying to decide if I should have hardware and bone spur removed since no doc has confirmed RSD or go with my gut that says it is since I can live with the small amount of pain I have. Of course I would love to be pain free.

Done 2 courses of PT. 1200 Mg Gabapentin for last 9 mos which I would love to get off. Taking B12 Vit and Vit C. Going to be starting a few other natural things with hopes of weaning from Gabapetin.
Luckily my function is normal I can still do all that I did before but wear cute sandals.

Hey GoBlue,

you have come a long way! I put a long response on Budapest criteria that sorta covers both...

Your cortisone reaction sounds like it is within normal limits. hypo pigmentation is pretty common, discoloring and flaring after is pretty common too.

I have to keep remind myself I was non weighbearing for 8 weeks, which is a first for me in my life so that explains a lot of the symptoms. I have had 2 docs say to me I can't believe the surgeon told you RSD he never should have but of course he was trying to be careful since my symptoms nerve pain wasn't going away. But of course ever since it was mentioned I have lost sleep and worried more than I should.

GoBlue,

I understand worrying all too well. The CRPS monster can certainly take over ones thoughts.

8 weeks is a long time NWB. There is actually an article out there called something like "CRPS without Pain" which doesn't really sound like CRPS. It was about patients who had the color change but no pain and the syndrome resolved once they started bearing weight again. My ortho and nerve surgeon both say some people get a temporary autonomic dysfunction from NWB, this is not the same as CRPS. I have read articles too that point out studies done in which immobilized limbs exhibit CRPS like features but the patients don't develop CRPS. Cut yourself some slack. Your foot went through a lot.