Hi birchlake (& nige1960). Thanks very much for the reply, good to get some feedback from someone else with the same condition. Seems like you've spent quite some time to find the right medication for you.

Thats very good advice from you about the doc's. I've done some research and it affects 20 people per 1,000,000 so there is relatively little knowledge on it. All the doctors I've seen so far have said I probably know more about it than them, which is not encouraging. I'm in the UK and have found a couple of specialists in CRPS that I am arranging to see.

The condition has been there for 5-6months now and I've been treating with Amitriptylene since around month 4-5. I've been keeping photo records of it all since day one that has helped when seeing Dr's.

Just today I tried tourniquet'ing my toes with rubber bands to constrict blood flow slightly and that seemed to localise the redness/swelling just to the toes, but not sure the consequences of this approach! It stopped it spreading up to the top of my foot to the ankles at least.

Have you tried: TENS machine (electronic pads that stimulate nerves)? Or Acupuncture?

I aim to see several specialists and as you say make my own mind up and take control of it myself.

I'm also thinking of setting up a dedicated 'CRPS in toes' blog to try and aggregate vital information that others have found with regard to it specifically in toes and treatments etc. If you'd like to take part let me know as knowledge is very much lacking as you say on this.

I'm very stubborn and determined and am not going to be beaten by this!

Best wishes

ADDITION TO ABOVE: My toes are also not hypersensitive to touch (thankfully). My CRPS reaction happens after 10-15mins of walking then, 1. heat, 2. redness, 3. swelling, 4. pain. Then I put my feet up by lying down, and it all calms down again. Pain, redness, heat, swelling all dies down and stops.

The Amitriptylene extends the period before triggering the reaction, and the redness and swelling doesn't go up so far, but still as bad in the actual toes.

I have now got two appointments booked for this coming week with CRPS specialists and I'll report back with what they say and suggest.

Wow.......your symptoms are very similar to mine. It isn't terrible when sedentary, but after about 15 minutes up and around...maybe 20, it gets very aggravated and I also get the heat, red color, swelling and pain.

Too weird! We have to stay in touch here and support each other. I'd love to be part of your blog.

Yea seems very similar! I'm just putting together all my research and case notes & photos etc for these appointments.

Once I've been to see them I'll start getting a blog together specifically for CRPS in the toes, with links, articles, photo's and more detail of my case. I'll try and set it up with several accounts so you can just add what you like as and when. Then that will hopefully get some more feedback from others and their experiences/treatments specifically with this type/area of CRPS. Well that's the idea anyway! Any other suggestions are very welcome

My RSD started in my left hand/wrist but spread to my left foot and toes. Does that count? (lol)

I think that counts! **

In that case I'll chime in on your blog...