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 09-03-2013, 05:35 PM #1
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If I had to guess...work comp is waiting for your appointment with the doctor on 9/12 before approving any more PT. I was lucky with my doctor who was overseeing my care in that she approved as much PT as I needed and didn't wait for additional appointments with me before sending on her approval for more...which the insurance company just went with.

I am SO angry that the physical therapist did this to you...especially after you guys had already discussed not doing it any more. I do not doubt at all that your current pain levels are a direct result of that horrible treatment.

If it's really bad...go to the ER...but don't expect a lot from them. If they can help break the cycle of pain then that may help you...but they're not equipped to or meant to deal with chronic pain conditions. Most of the time I usually regret even bothering to go to the ER because they just don't do much to help me...nothing really. But at least it documents that I was in enough pain to go...whatever that is worth.

I would definitely speak to your doctor on the 12th (or sooner if you can get in sooner) about this spreading pain you are having. Talk with them specifically about what you should do when you have these pain spikes, what specifically you should be doing in physical therapy, what the treatment options are, and what your goals are as far as treatment goes. Your doctor should be your greatest partner in this struggle and you need to have the sort of relationship where you are comfortable asking these questions and discussing these things...and they proving answers and being active participants in the discussions about your health.

Take care...I hope your pain levels go down soon. My first step when pain levels start to rise is a hot bath with Epsom salts, followed by some lidocaine cream or Lidoderm patches, and rest.
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Old 09-09-2013, 12:16 PM #2
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Well I got back in PT 3 times per week... apparently I wasn't supposed to have a lapse in care, which really aggravated my nurse case manager. I have a pain doc appointment on thursday, and I am going to write down questions this time to make sure I get them answered, mostly about the sympathetic lumbar nerve blocks. Some of the questions come from your responses, so thank you. Let me know if there is anything else I should ask. I don't know if I mentioned this, but I'm trying to avoid using opiates, especially while I am unable to work, so if you have any suggestions on what I should ask my doctor for, let me know. They have bad side effects for me and I am way too anxious about dependence. It's a trade off because the rest of my body and my mind feels a bit better without them, but I have to put up with more pain, no quick break from a pill. I am going to ask for a new compound cream with lidocane added at the advice of another doctor.

I also am meeting with a worker's comp lawyer who was recommended to me for initial consultation on wednesday. I am trying to prepare for this. Any advice? I have been keeping a journal (on my computer) since february exclusively for my injury/crps, should I send it to him? What kind of questions should I ask?

Also, I should mention that I went shopping where I am employed (where the injury happened) last weekend, and talked to my boss for a while. They re-did the whole loading dock! Leveled it, widened it, put a safety rail and fence around it. He was eager to show me so I couldn't help but think it was because of me. I felt mixed feelings... glad they fixed the obviously unsafe (slanted and narrow) dock, but wish they would have done it before my injury. Anyway, I was worried he was going to try to pull some crap to coerce me to quit, but after hearing about what I am going through, the opposite happened. He put away his notepad mid-conversation, and said that I am welcome back and they want me back whenever I am ready and able to work. I was a top employee there, always worked my butt off, so I think they genuinely want me back now that the holiday season is coming. Anyway, that lifted a bit of stress off my mind.

I can't wear socks or my brace anymore it seems, the area is way too sensitive. I have just been going barefoot with crocs and learning heavily on my cane. My ankle is very weak and it feels like I could easily lose my balance, so the cane helps. I guess it's kind of good I am forced out of the brace, because less immobilization, but it definitely made me feel safer and more stable walking with it on.
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Old 09-09-2013, 01:29 PM #3
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Hi Vivid

Great news about your work, it must feel lovely to be wanted back, even if things have changed so much for you. At least you have the choice now.

Crocs are great aren't they? I wear mine in the house to keep my feet warmer now this cooler weather is here. Once my feet get cold they always fire up in the early evening and give me hell for a few hours!

I'm glad you have PT still - are you going to be seeing the same guy? I know you got on well with him before the last traumatic appointment, but if you are seeing him still, make sure you keep vigilant about what treatments and exercises he tries, and if something doesn't feel right say so immediately so that he doesn't aggravate things. If necessary you can ask for a different therapist, but hopefully it won't come to that.

I'm the same re opiates. I have made the decision to take the pain over the side-effects and the effects they have on my mind and personality. For now. I hope I never have to go down that route, but some days I do get tempted to do anything to rein in the pain Good idea on the compound cream - I have it on my list to ask my pain doc about next month!

Good luck with workers comp - I only know about what I've read on this site, but I know things will be tough in that process, so stay strong and keep notes of any conversations or appointments you have. I use a recording app on my phone when I go to appointments - it's amazing how much detail you can forget from a conversation, and I find it so useful to be able to go back and listen to what the doc/therapist/whoever really said, rather than what I think they said.

Take care of yourself and good luck with everything. It'll get easier.

Bram.
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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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Old 09-11-2013, 03:23 AM #4
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I am SO in touch with the title of this thread! I am hurting so bad in so many places it’s insane, or going to make me insane. Every step or movement is so difficult and such a struggle right now. I feel like EVERY SINGLE ASPECT of my life is suffering. More and more things just slipping through my fingers, sometimes literally. And somehow I am suppose to get comfortable with that notion. Zen Vrae... Zen... Wide Open Spaces.... yeah that's it... right?

I am going to turn 45 y/o in just a couple of weeks and I feel like I should have 80+ candles, or perhaps it’s dog years lol. I have reached out to my best friend and informed my husband that feel like it or not, we’re going out and I am dressing up, makeup, hair and all and we’re going to dinner and to hear some live blues. I told my friend that enough drugs and drinks and I should be good to go for a few hours.. lol. Really I want to push myself to do it because I fear how much longer I will actually be able to walk without all sorts of assistive devices. I want to try and enjoy myself and the company of those I love, as long as they’re down for the music. Good music sets my soul free and helps me forget the pain. Honestly I’m not a big drinker, but I feel at least a glass of wine or two will be in order!

OH! and fun fact: Crocs originated in Denver, selling in small kiosk's in the mall, then the blew up across the nation and sounds like internationally as well. There is just no better shoe for me. My shoe of choice! Not the most stylish things, but I'm WAY beyond that.
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Old 09-11-2013, 03:40 AM #5
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Crocs rule! I couldn't be without mine lol - althought am distressed today because I managed to step in some muck yesterday and they are waiting outside for a good scrubbing!

I'm going for cat years (only 3 per human year lol). Still puts me at 126

Vivid, i hope you are having a decent day, and Vrae, keep smiling girl...



Bram.
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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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Old 09-11-2013, 09:14 AM #6
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Quote:
Originally Posted by Brambledog View Post
Crocs rule! I couldn't be without mine lol - althought am distressed today because I managed to step in some muck yesterday and they are waiting outside for a good scrubbing!

I'm going for cat years (only 3 per human year lol). Still puts me at 126

Vivid, i hope you are having a decent day, and Vrae, keep smiling girl...



Bram.
I have a pair of big black ones that are fur lined (it gets cold here) and the other day I was in my nightgown cooking in the kitchen with, you guessed it, my crocs on. My husband walked in and I said, try and control yourself honey, I know how sexy this looks
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Old 09-11-2013, 11:47 AM #7
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Originally Posted by Vrae View Post
I have a pair of big black ones that are fur lined (it gets cold here) and the other day I was in my nightgown cooking in the kitchen with, you guessed it, my crocs on. My husband walked in and I said, try and control yourself honey, I know how sexy this looks
O....M....G....THEY DO FUR-LINED CROCS?!?!?!?!

I am sooooooooooooo getting a pair of those

Tank-oo (lol)

Bram.
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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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Vrae (09-11-2013)
Old 09-11-2013, 01:44 PM #8
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[QUOTE=Vrae;1013801]I am SO in touch with the title of this thread! I am hurting so bad in so many places it’s insane, or going to make me insane. Every step or movement is so difficult and such a struggle right now. I feel like EVERY SINGLE ASPECT of my life is suffering. More and more things just slipping through my fingers, sometimes literally. And somehow I am suppose to get comfortable with that notion. Zen Vrae... Zen... Wide Open Spaces.... yeah that's it... right?

I sure do understand that feeling! Except you should feel good you're 9 years younger than me! No, but seriously this stuff really wears you down!
I think it's a great idea to go out!
We did that this last Saturday and a couple of drinks and some fun music and I almost felt normal for a few hours.
I think we SHOULD try to enjoy what we can!, we never what life throws at us next anyway but more true for us.
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