CRPS in only half my big toe!

mnp2011 · 10-26-2011, 03:31 AM

Quote:

Originally Posted by jimbo

My wife tells me if I didn't have my sense of humor I wouldn't have any sense at all...

Off for a (short) run this morning to record how quickly the toes flare up. I've been recording regularly various exercises (cycling, cross-trainer, walking etc) to see if the drugs are prolonging flare up times. I seem to be getting about 10 mins extra on this Amitriptylene 25mg.

mnp2011 · 10-26-2011, 06:09 AM

Quote:

Originally Posted by mnp2011

Off for a (short) run this morning to record how quickly the toes flare up. I've been recording regularly various exercises (cycling, cross-trainer, walking etc) to see if the drugs are prolonging flare up times. I seem to be getting about 10 mins extra on this Amitriptylene 25mg.

Running is pretty much the same as cross-training ~15-20 mins before flare up.

When I was prescribed this Amitriptylene I as told to increase activity. I'm not sure if this was so that activity would 'reset' the sympathetic nervous system response; so that when I stop taking it, the nerves will have remembered the correct function?

What were your experiences like with this drug? I am very interested to hear as I will stop taking it this week.

**

birchlake · 10-26-2011, 08:14 AM

I never actually took amitriptyline, so can't help you there.....maybe others will chime in.

Regardless of what we take, it is important to "keep moving" as best you can. Inactivity is the worst thing for CRPS. My mantra is "use but don't overuse".

mnp2011 · 10-26-2011, 08:59 AM

Quote:

Originally Posted by birchlake

I never actually took amitriptyline, so can't help you there.....maybe others will chime in.

Regardless of what we take, it is important to "keep moving" as best you can. Inactivity is the worst thing for CRPS. My mantra is "use but don't overuse".

Thanks for that. I've been pretty active so hopefully that has helped out. I usually know when to stop, when most of my feet have swollen up. Will be interesting to see what these two specialists come up with. I'll of course report back with what they suggest.

mnp2011 · 10-26-2011, 11:52 AM

Quote:

Originally Posted by mnp2011

Thanks for that. I've been pretty active so hopefully that has helped out. I usually know when to stop, when most of my feet have swollen up. Will be interesting to see what these two specialists come up with. I'll of course report back with what they suggest.

I'm not sure if we can post video clips within posts here, but I'll try and post a short clip of my toes during in a flare-up. Would be good to get your thoughts and comparisons with your own toes, if that doesn't sound too gruesome!

mnp2011 · 10-26-2011, 01:02 PM

Quote:

Originally Posted by mnp2011

I'm not sure if we can post video clips within posts here, but I'll try and post a short clip of my toes during in a flare-up. Would be good to get your thoughts and comparisons with your own toes, if that doesn't sound too gruesome!

** This blog I'm setting up can be found here: http://crps-in-toes.blogspot.com

If anyone would like an account setting up to add your story and anything else you want to add, change, edit etc. Just private message me your email address and I'll set up an account for you.

mnp2011 · 10-26-2011, 01:59 PM

Quote:

Originally Posted by mnp2011

I'm not sure if we can post video clips within posts here, but I'll try and post a short clip of my toes during in a flare-up. Would be good to get your thoughts and comparisons with your own toes, if that doesn't sound too gruesome!

Looks like I can't post youtube clips in the forum, but here's a link to a short video of my toes during a CRPS flare-up.

http://www.youtube.com/watch?v=aHy7aHOMQpQ

mrsD · 10-26-2011, 02:16 PM

I think you should look into erythromelalgia ... similar appearance on the skin, and the burning.

Taking adequate magnesium containing foods or supplements often stop these temporary reddening episodes.

http://en.wikipedia.org/wiki/Erythromelalgia

Dr. Jay Cohen MD had this and fixed his own with magnesium.

http://medicationsense.com/erythromelalgia.html

Also I wonder what antibiotics you used when you had your infections in the toes? Ciprofloxacin or Levofloxacin? These drugs can cause nerve damage. Flagyl (metronidazole) and Zyvox also cause nerve damage.

mnp2011 · 10-26-2011, 02:58 PM

Quote:

Originally Posted by mrsD

I think you should look into erythromelalgia ... similar appearance on the skin, and the burning.

Taking adequate magnesium containing foods or supplements often stop these temporary reddening episodes.

http://en.wikipedia.org/wiki/Erythromelalgia

Dr. Jay Cohen MD had this and fixed his own with magnesium.

http://medicationsense.com/erythromelalgia.html

Also I wonder what antibiotics you used when you had your infections in the toes? Ciprofloxacin or Levofloxacin? These drugs can cause nerve damage. Flagyl (metronidazole) and Zyvox also cause nerve damage.

Hi there thanks very much for your input. I will definitely look into Erythromelalgia - not something that's been suggested yet.

The antibiotics I had were Flucloxacillin, taken for two weeks. I had them years ago for another problem and had a surgery after taking them on my lower back and that didn't cause any problems.

I was thinking it may have been the anaesthetic injections I had prior to the nail surgery. I had three in each toe, but not sure if that may have also caused nerve damage.

mnp2011 · 10-26-2011, 03:29 PM

Quote:

Originally Posted by mnp2011

Hi there thanks very much for your input. I will definitely look into Erythromelalgia - not something that's been suggested yet.

The antibiotics I had were Flucloxacillin, taken for two weeks. I had them years ago for another problem and had a surgery after taking them on my lower back and that didn't cause any problems.

I was thinking it may have been the anaesthetic injections I had prior to the nail surgery. I had three in each toe, but not sure if that may have also caused nerve damage.

Just having a quick look through various sites and Erythromelalgia does seem to very accurately describe what I'm feeling and the triggers are the same. Thank you so much for getting in touch about it. I will suggest it to the two specialists I'm seeing this week and next week.

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