My situation just got a lot more complicated today. I had a paediatric surgeon (friend of a friend) review my case, photos, images, etc and he strongly stated it was not CRPS but Osteomyelitis (bone infection) caused by the surgery. So I'm having an X-ray first thing tomorrow morning to see if there are signs of damaged bone, then off to see the pain management CRPS specialist to see what he says. Then after that try and sort out (more) blood tests to see if there is indeed an infection. All happening.

mnp, I viewed your video. Strangest damn thing I've ever seen. Very weird how when you touch the surface of the skin, it goes white. Mine STAYS red, no matter what you do. Except sometimes it gets redder if it's at all aggravated!

I too would explore all avenues so that you are sure you have the proper diagnosis.

Thanks for that info birchlake. That could be a key point when seeing this specialist tomorrow - if it stays red or not upon touching the surface. I'm taking the video clips too so hopefully he'll be able to accurately assess whats actually going on.

mnp, you are a student of this game and that is what is needed to figure it out. As they say, "the devil is in the details".

Knowledge is power. That is the beauty of this forum; it increases our knowledge base.

Lots of new details and hopefully some knowledge to add to the general base. Saw a pain specialist yesterday and he said it didn't look like CRPS per se. So I'm organising a bone scan (x-ray tracers injected into the blood and scanned for bone cell activity, from what I gather) to see if there is an infection and more blood tests. X-rays didn't show any obvious de-calcification or much visible damage. Seems like more of a sympathetic nervous reaction caused by something and triggered when I walk, run, cycle and by heat and alcohol. :confused:

If you're taking anything for thr RSD stay away from alcohol!

Yep am well away from that, have been for 2 months now. My liver has never been so healthy!

sounds like erythromelalgia
 

I saw your video and it looks to me like erythromelalgia (EM), especially since you said it flared up after a shower. The determining question is: are your symptoms relieved when you cool your feet off (by putting them in cool water or in front of a fan)? If the symptoms are triggered by heat and relieved by cold, then it is without a doubt EM. I have those exact same symptoms. I also have tarsal tunnel syndrome in both feet so getting a clear diagnosis has been difficult. One dr suspected CRPS and sent me to the pain mgmt clinic, but I don't believe it is CRPS. I don't have the constant severe pain of CRPS, but there is a lot of overlap with the other symptoms (color, temperature and skin changes). My feet also get colder than normal between EM flares. I've done hundreds of hours of research since this started in June, and to me it seems obvious that the cause is some sort of sympathetic nervous system dysfunction (this causes the vascular symptoms) as well as hyperactivity in the small C-fiber nerves (this lowers the threshold of heat perception). My drs are not familiar with EM so I am having to be my own detective.
Elisabeth

Hi Elisabeth, thank you very much for your thoughts. My situation does sound quite similar to yours. It is definitely triggered by heat (showering) or increased body temperature from walking or exercising. I haven't actually tried cooling my feet in cold water, but I shall today. Normally I raise my feet above my heart and it settles after 10-20 minutes. I wouldn't say my feet are any colder than normal in between flare-ups. I went to see a pain specialist last week and he seemed to think that it was not CRPS and hadn't heard of EM when I suggested it. He seems to think it could be related osteomyelitis so I'm arranging a bone scan for this week with further blood tests. I don't have any TTS symptoms as far as I'm aware.

The pain specialist I saw was talking about some kind of confused circulatory response linked to this sympathetic nervous system reaction. So really they just don't know right now for sure what's causing it. Hopefully I'll know more soon from these tests.

Out of interest how are they treating your symptoms? I'm just getting off Amitriptylene (thankfully) as that didn't seem to do anything beside prolonging the flare-up time by around 10 minutes and making me drowsy.

Thanks again.

Also Elisabeth, what were your symptoms triggered by if anything? Mine started directly after invasive surgery in my toes.