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.

Quick update on water cooling after flare-up. I did my standard 30 minutes on a cross trainer then put my feet in luke-warm water (just below body temperature) for 15-20 mins. This had no significant affect on the flare-up disappearing, it was more or less the same as putting feet up and waiting 10-20 mins for it to calm down again.

Not sure how useful this would be for a diagnosis, but I'll report it to the specialist when I next see him after this bone scan next week.

Just thought I'd post an update on my progress. I got all my blood tests and bone scan back and they didn't show any bone infection of any kind. So my pain specialist now tells me it looks like a sub-form of CRPS in both my toes.

I've since had an intravenous sympathetic lumbar block on my right leg (tourniquet of the lower leg and injected anaesthetic and sympathetic nerve block liquid) into a vein in my foot. This was 7 days ago and when I go on a cross trainer for 30 mins, both my feet seem to swell up and go red exactly the same i.e. the block doesn't seem to have had any beneficial symptom easing effects.

From this I understand it is SIP or sympathetically independent pain - meaning from what I gather as confused brain signals to the feet, rather than local damage in my feet?

I'm due to see a different pain specialist, specifically in CRPS next week, but just wondering what the thoughts were here too? If it is a SIP form of CRPS are there any recommendations on what I could do now? Is it a case of re-training my brain for the correct signals? - if so how?!

The docs are running out of ideas now, but my guess is probably a dose of pregabalin that was talked about before.

Any thoughts much appreciated :)

I Have the same problem as yourself, would be good to get intouch.

Hi Nige I'm quite happy to have a chat over the phone or skype if that suits. PM your details if you would like.

I'm off to have another nerve block next week in my left foot this time as it made a 10-15% improvement in my right leg. I saw a CRPS specialist up in Cambridge before Christmas too which was quite positive. Happy to share my info :)

I have rsd of the right foot and they do lsb (lumbar sympathic nerve blocks) after the shot my thigh is usually numb and my foot is bright red. As your dr. talked about the next step. I am unsure as far as pregblin with rsd. I think it is a matter of different strokes for different folks. My next step is a stimulator trial and if that fails I am requesting ketamine.

Just thought I'd post up an update on my toes. I found out about a transdermal PLO gel base that can be used with pain management drug delivery into the skin as opposed to orally. Its standard practice and widely available in the USA/CA, but not in the UK or EU.

I managed to track down a specialist compounding pharmacy in London, UK **that compounds in an imported PLO gel from Canada called Medisca VersaPro gel. I just received it last week (£45 for 100g) with 10% amitriptylene compounded into it and have been testing it out. So far results have been good. I put it on before walking and it seems to stop the erythema leading to the stinging pain. When I run it seems to come back, but I need to do more testing before anything is definitive.

For me transdermal drug delivery is so much more preferable to orally taking drugs with all the side effects as I just can't focus on my work and don't like feeling semi comatose.

The NHS is currently trying to fast track something very similar called AmiKet - which is essentially the same thing with 2% ketamine added to the mix.

Anyway just thought I'd share my info in case it can help others who have not heard or considered this type of drug treatment :)