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Always_Believe · 04-17-2015, 10:43 AM

I am trying to catch up with all the posts while I was in TN for my oldest daughter's wedding, but I started PT as soon as I returned and have a TON of questions (again).

First of all, the 8 hour drive from IL to TN definitely caused some flaring and I had some pitting edema in my lower leg for the first few days. Thankfully, we planned to be there a few days before the wedding so I was able to get it a bit under control by the time of the wedding. (Which was small and beautiful)

Secondly, PT is working with me slowly. Both of my therapists are quite familiar with CRPS and we are trying to get "general and flare protocols" in place. I know these are very individual but I am looking for suggestions to try. I am learning where my 'too much' point is, which of course varies by the hour.

What I have tried so far:
-Lidoderm patches to inner knee (for arthritis pain) and to the outer ankle/outer knee (for nerve pain). They were mildly effective but I cannot get either my PCP or ortho to prescribe them (they were originally prescribed by my TN ortho)
-Heat to knee, shin, foot...wherever the freezing burn is. I can NEVER get these areas warm enough when it's really bad. I have used microwave hot packs, heating pads, a heat shawl (I love the softness of this & ability to wrap it around my foot). I definitely need assistance wrapping my foot when my flare is in it's peak. I haven't been able to get my leg into warm water during a flare yet. LP suggested a 5 gal bucket for epsom salt soaks but I can't bend my knee enough to get my leg in far enough yet.
-Elevation. Works for the swelling but I am completely miserable pain wise and unable to get enough heat to my leg and with it elevated, the cold is worse.
-Meds - I am on gabapentin 400mg 3 times/day. PCP won't prescribe anything else. Have ortho referral to PM but I can't find one yet that takes my insurance (same for neuro). Also on wellbutrin for smoking cessation (which is working quite well btw). I take 3mg melatonin for sleep. Vitamin d 50,000 iu twice/week and 70 mg fosamax for my osteoporosis/vit d deficiency). I was on 10mg lortab every 4-6 hours as needed for a few months after my knee surgery. I seem to be able to function more with the lortab on board, but I realize this is not a good med to use with CRPS and I do not have a current prescription for this either.
Texture - Fuzzy sock; leg warmers; fuzzy blankets...all feel so much better than anything else. I cannot wear jeans without a leg warmer between the denim and my skin. I use a hair remover instead of shaving my leg. Even my loofa is difficult but I feel like it's a bit of a desensitizer and more trouble to figure something else out than to just wash that leg/foot quickly. I have some trouble with lingering sensations as well as some allodynia.

My PT mentioned a website with some kind of protocol...??? I figured this was my best place to start. Thank you in advance.