[Always_Believe]

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.

[Littlepaw]

Hey Girl,

I don't have any advice on protocols. Did they mean for you to find PT protocols? so individualized.

I have been thinking about what you can do. Sorry to hear you can't bend your knee enough to get in the bucket! Also I am wondering what is painful about elevation. Is it positional? Is there too much stretch? Is something going on in your low back/pelvis that contributes to the whole thing?

In my own experience swelling has been a major factor in that my nerves just don't tolerate the slightest bit of it and complain bitterly. Not that the swelling ever looked horrible but it was definitely there. I found light compression helpful, emphasis on light, you don't want it painful. Since your knee is a problem area you could always get stockings to the thigh. I buy a bigger size than recommended for venous insufficiency since it's more comfy and is addressing something else anyway.

Lymphatic self massage is good for swelling and giving your skin some desensitization. Videos for how to do this yourself are online. A little time consuming to do everyday but does help so what the heck. When you're spending all the time trying to get better what's one more thing.

Topical lidocaine is available online.

Can you get in that whirlpool bathtub? That would be so good for circulation...

I did mirror therapy for a while, sometimes still do. Free when you have a mirrored closet door or lightweight mirror to work with.

I also did nerve glides for a long time and still do a routine of stretches every single day. Nerve glide techniques can be found online. Gotta keep things movin...

Heating too much may contribute to localized swelling, go easy on everything.

I am Sending Warm Fuzzies
Littlepaw

[Littlepaw]

AB,

Something about your symptoms has been bugging me. You may have addressed this or mentioned it in an earlier post.

Did they ever check you for Peripheral Artery Disease or other vascular issue? Mostly I am wondering about PAD. So many symptoms are similar. Cold feet/legs, pain with elevation (sometimes people hang their leg off the bed for relief) color change, numbness, pain, skin issues, difficulty walking.

The biggest risk for PAD is smoking. It increases the chance of claudication 4 times. You can have it affect only one leg. There are a boatload of articles about PAD/PVD being set off by trauma. It just raises a flag for me that you say you can't warm your foot enough when it is down and elevation is painful. I know you've had a lot of swelling. If they haven't checked for this maybe it is time to do so. Always good to have information. I'm not saying you don't have CRPS and I know your knee is jacked up. But maybe this could be something standing in the way of recovery? God knows circulation is a big enough problem with CRPS alone...

okay I am done brainstorming,
LP

[LIT LOVE]

You might want to try an Infrared Heater on cold limbs.