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 10-30-2013, 01:59 AM #1
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Default Accupuncture follow up

First, many thanks to everyone who offered advice on my first post.
I should have taken the advice NOT to try it.

I found a wonderful accupuncturist, He understood English well, but did not speak it well. He was indeed trained in traditional Chinese medicine and accupuncture as well as Chinese Pharmacology.
However, I'm dont think he understood about RSD/CRPS. He nodded his head, and he saw my contracted hand and lack of range of motion and said in several visits he could restore "ligament" stretching. So, I thought why not try?

I asked him not to put needles in CRPS arm but he said to restore and balance "Chi"(sp)) it is required to put needles in all limbs. He said (and I've heard) that there is lilttle to no pain in accupuncture. It was very painful to me especially in my CRPS/RSD arm.

My emotions got the better of me and I laid there and cried while he was out of the room. Not from the pain itself really, I'm pretty tough to that by now.
Just the thought of one more thing that won't work for this disease and may cause it to spread.

I don't literally hear voices in my head, but I don't know if any of you can relate, I worry about what others must think of me, like "Why don't you at least try "it" meaning a treatment because if I don't they may think I must not want to get better. So many people don't understand there may not be a "better".
A year ago I would have never thought I would be willing to accept this condition just not to get any worse, and to just not be poked and prodded anymore.
I wish I had listened to your advice.
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist.
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Old 10-30-2013, 04:24 AM #2
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Oh AZ-Di

Hey, don't beat yourself up about it. What's done is done, and I admire the fact that you are still willing to try treatments with risk in order to have a hope of getting some control over your CRPS. I'm just so sorry it didn't help you, and I will keep my fingers crossed that it gets no worse. Keep gently moving that limb and taking your 500mg of vitamin C to help prevent any spread...there is no certainty with any of this, and you might be able to just chalk this one up to experience

It's so difficult isn't it - so many trained western doctors and 'specialists' don't understand CRPS, so it is hardly surprising that a Chinese trained acupuncturist doesn't, and if you never let anyone treat you unless they had a good understanding of the condition, you'd never see a medic again!

I completely get your inner voice thing - I bet we've all done some things because we know what others will say if we don't... It's easy to say that we should ignore what others think, but much less easy to actually do it. The old chestnuts of 'but why haven't you tried X?' or 'well, what have you got to lose, you might as well try it' and 'at least give it a go just once' are things we've all heard many times about many different things - of course it's hard to just stand up and say 'no I can't just try things, there are too many risks involved that I know you just wouldn't understand' - we know how folk would react.

Keep warm and occupied, and try not to let this make you too anxious. There's no guarantee it will cause spread or worsening, and you have to try to stay positive and hopeful. I'll be thinking of you.

Have a decent day and try not to dwell on this. Have a treat and a smile

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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AZ-Di (10-31-2013), bluekrikit (11-13-2013)
Old 10-30-2013, 08:34 AM #3
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I'm sorry you had such a bad experience AZ-Di. But you wanted to try. Everyone can react differently to procedures so you never know. Don't feel bad about what happened. The dr should feel bad for telling you he understood RSD when clearly he didn't. That's exactly what happened to me. But we try to trust our drs and think that they really do mean what they say. Unfortunately that's not always the case. At least you know now and if I were you I would not go back to him. And you may not get spread after just one visit, so try not to worry. I know it's hard, but try to get some rest today. I understand too that we worry that people may judge us if we don't try things. I felt that way with the SCS, but I just was too afraid to do it after what some of my drs said. I didn't want to try accupuncture either, but I let my worry of what people may think get the better of me too. I try not to let that happen anymore and hope you are able to do the same. Try not to let others influence you into doing a procedure you don't want. They don't understand RSD and alot of drs don't either. Their just experimenting and I was told from some other drs that they sometimes use us as guinea pigs for making money off of our rsd. I'm sorry again you had such a bad experience and had so much pain, but it's not your fault. At least you stopped after one time. I went for a total of four times, before I finally stopped. Try to hang in there. I hope you have a better day today. My thoughts and prayers are with you my friend.
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Old 10-30-2013, 08:36 PM #4
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Hi again AZ-Di. I hope you're feeling better tonight and have a better day tomorrow. I'm having my sleepy time tea right now. I have alot of pain tonight. It's rsd and fibro pain combined because I feel it all over. I hate when I get flares from both of them at once. That doesn't always happen, but when it does it's usually at night and very intense. Hopefully my pain pills will start working soon and I can get some sleep. I hope you have a peaceful nights sleep too. Take care.
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Old 10-31-2013, 12:43 AM #5
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You were not wrong to try it, others have said it helped a lot. Trouble is there are no guaranteees with our condition what works for 50% does't work for 40 and for 10 makes it worse and there is no way for you and the doctor to kow which group you will be in for which treatment.
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Old 11-02-2013, 09:06 PM #6
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Hi AZ-Di, I was just thinking of you and hope you're feeling a little better. I hope you have a good night and an even better day tomorrow. Goodnight my friend. Bye for now.
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