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!

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?

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.