Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-17-2013, 03:45 AM #1
Brambledog Brambledog is offline
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Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Unhappy CRPS pain in toes/feet , practical advice and help? Thanks :(

My toes are on fire, the pain has really ramped up in the last week or so goodness knows why, I didn't even have it this bad in my knee (where it started), and I'm struggling to cope right now. I can't sleep properly, and it's frightening me to be honest, because I thought I was coping ok with it in my knee, but that was never like this.

Do my toes feel worse because they're smaller? My knee pain is predominantly a deep bone type of pain, and only really burns when the skin flares into that bright red we all love My toes are burning all the time, and at times it erupts into a period of stabbing pain that makes me sob.

I've got lidocaine patches and they seem to help a bit, but I have the eternal dilemma of when best to use them. If I have it on during the day then I take it off and can't sleep because the terrible pain comes back, if I put it on for night time I only have a couple of hours with it in the morning before I've got to go cold turkey all day, which is horrible. My pain doc was strict about 12hrs on and 12 hrs off.

I am really struggling with socks and shoes. I can't have my feet exposed to the air because thats so much worse, but even the softest socks aggravate and are uncomfortable. Shoes are a nightmare, I've got some ski boots I've been wearing this winter, but I can't wear them much longer now spring is here. I'm trying to keep my feet an even temp, I used to put them on a cool surface when they burnt, but I'm wondering if that made things worse? I can't bear to do it now.

I am off all oral meds at the moment, since about a month ago, and thought I was doing ok. I'd tried amitriptyline, pregabelin (Lyrica) and Gabapentin, but each stopped working after a while and gave me horrible side-effects. I don't know whether to risk going back on one in hopes of help or not. My pain doc says those are the only 3 meds with a chance of helping. I have codeine and tramadol, but don't use them because they don't seem to affect the CRPS pain much, and I don't want to spend my life drowsy. At the moment I'm me, but me in too much pain to enjoy it.

I'm so miserable guys. I thought I was doing ok, managing it, and this last two weeks it has just gone to a whole new level and I can't get comfortable at all I'm frightened to death of banging into things with it, because from a minor scrape on my little finger (unaffected limb) last week, I know my body is overreacting to pain big time. I'm trying to be calm and focus, and breathe and distract myself, but none of the usual stuff is working.

I can say this to you because it's anonymous, but yesterday I was looking on the web at methods of suicide. Not for now, but because I can really see a day come where I cannot take the pain any more. I daren't tell any of my docs because I'd be on anti-depressants and surveillance like a shot, and then it would be all they saw on my records.

Any practical advice or suggestions are very welcome. I'm in the UK. Thank you so much

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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