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.

Hi Birchlake, How are things with you? are you getting around any better, thought i would update, well its gone to my other foot now 2 swallon feet pain is still the same was having a warm feeling in my butt (thats where i fell),
gone back to work some days are better than others getting a good night sleep is a bit hit and miss, no fun when you live on your own most of the time. trying to look on the bright side hope your are. i suppose like others if only i hadn't of slipped on the ice.
keep in touch when you have rsd you need all the friends you can get.

Nigel
Birmingham uk

Hi all. My first post here. I had nail surgery in both my big toes (removing both sides of both nails), got an infection in both, then once that all got sorted I found that both toes were flaring up hot, red swollen and painful after 15 mins of walking. I went to see an orthopeadic surgeon and he diagnosed CRPS type II in both toes. So I'm on 25mg Amitryptylene (anti-depressant nerve numbing drug) that has slighlty reduced the time it takes for CRPS to trigger and flare up. I'm seeing a pain specialist this week, but feel that I should be treating the cause, not the effect. Has anyone else looked at nerve removal surgery? 1 surgery already caused this CPRS, so I'm loathed to have another and make it worse.

Any thoughts/input much appreciated.

mnp2011, welcome to the forum. You and I and nige1960 have it in the toes, which is a bit unique. Amitriptyline is not an uncommon drug to try. My mainstay drug is gabapentin, the generic for neurontin. I also take 440 mg of naproxen sodium twice daily (Aleve), which helps with general pain and inflammation. The first year, it was percocet, which worked, but left me dependent so I weaned myself off of it (boy, was THAT fun!). I would be in big trouble without the gabapentin (yup, I've tried!!). I also take lots of therapies, including physical and chiropractic.

It will be interesting to see what the pain mgmt. doctor recommends for you. Know this: This condition is widely misunderstood, even by professionals. Remember that you are not obligated to try the meds/approach that any doctor or therapist may recommend. If you see 5 doctors, you may get 5 different opinions and recommendations. You are going to have to be your own best advocate, and you must take control of your own destiny. Do not let this condition define you! You should do lots of research from reputable CRPS links, and get multiple professional opinions. Knowledge is power as far as CRPS goes. Most definitely.

http://www.rsdfoundation.org/index.html

http://www.rsds.org/index2.html

http://rsdrx.com/

Treating the cause may sound like the best approach, but from what I've seen, unfortunately is not effective for most cases, UNLESS it is caught early enough. How far into this process are you; both from the start of the symptoms and the diagnosis?

Hey welcome to the boards. You may want to start your own post or even on the intro board. That way you will get more feedback. Does your pain doctor deal with RSD a lot?Have you tried any other meds? I agree that if you have not seen a neurologist you should cause it is important to rule out other conditions. Hope you get answers and relief