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.

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