Hi Birchlake, By the way you were right.

Wasn't happy with my pain managment doctor, So today 06/07/2011 went to see a podiatric Surgeon who knew all about RSD/ CRPS, i don't Have stage 1 and the swelling in my Ankle might be as good as it get's, he told be on the safe side go back to your GP and get him to pass you onto a Pain managment doctor who deals with CPRS. I was in two mind do i have CRPS or not, glad i read your blogg. So there's two of us with toe problem , what type of Physiotherapy do you carry out?, i might as well start early.

It was a good idea that you kept seeking opinions. This much I know: This disorder is widely misunderstood, even by many professionals

The therapy I had was not so much directly on the toe, but on the entire foot and ankle. It was performed by the physical therapist. After a couple of months of that, the foot and ankle settled down considerably, but not the darn toe. It looks like Rudolph the reindeer's nose! He trained me for specific toe exercises that are mainly "range of motion" exercises. With the fusion, of course the range of motion is limited, but I always need to keep working against the CRPS as the toe wants to tighten up.

Just as in doctors, it is very possible that you might need to try a couple of therapists in order to find the one that is right for you. Not sure how your health care system works with trying different professionals. I had sessions with 2 therapists that were not so great. Third time was a charm. I found one that had a very good understanding of CRPS, was an excellent therapist, and was compassionate (necessary ingredient with this crazy thing). Therapy is a very fine line with CRPS. It is critical to keep things moving as best you can, but too aggressive of a therapy can be very painful and can also set you back. Slow and steady is the course of action; you may not see quick results. But it is very important in my opinion; the sooner you start, the better the end result will be.

Good luck!

I too have a nice purple toe (we could be twins) looking back i did wonder why my shoe was tight last year, where do you have the pain? mine is in the nail boarder if i rest the pain goes until i start walking then i get a sharp pain, i really need to get back to work on full pay for 6months but i need to get back to normal.

[Hi Birchlake,

Hope you don't mind me asking?, what were the very first symptoms/signs of your crps before it got worst,
I Have slight swelling in the left ankle the feeling of running water down my leg and twiching calf muscle.
Now the right leg ankle has swelling. very worrying
doing plenty of walking keeping things moving.

Every person seems to have their own unique symptoms and progression.
Mine included burning pain, hot and cold changes, and severe inflammation. Curiously, (and thankfully) I never have had the "hypersensitivity" that many suffer with.

Remember that you do not have to have ALL of the classic symptoms of CRPS to have CRPS.

Walking is probably one of the most important things for me. It seems a bit counter-intuitive, but you MUST keep moving!!

My mantra is "use, but not over-use". That means that you have to find the threshold of how long of a walk or how much time on your feet you can handle before it's time to sit down. This will not get better overnight, but it CAN get better. It CAN be managed (for some, not all).

Good luck and stay on it. You must develop a daily management plan. Be reasonable and don't be afraid to challenge yourself in small steps!