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 05-17-2013, 01:24 AM #1
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Default Has anyone tried TCM/acupuncture?

After hearing many reports of how much acupuncture has helped a lot of people, we decided to try some TCM (traditional Chinese medicine) for my daughter. She is in remission from RSD right now, thank God!, but has a lot of leftover pain and fatigue from being in a surgery boot for 9 months, and going thru many, many surgical treatments (spinal blocks, Bier blocks, etc), and she has a whopping case of plantar fasciitis (they can't even use their hands at PT - they have to grind into her foot with a metal rod).

I'm pretty open-minded about many things, and I don't by any means think that Western medicine is a be-all-end-all solution to the problems of the world, although I think it is better at things like surgeries, so we asked around and found a doctor that came highly recommended, and went to see her Tuesday. We had a two-hour appointment, which included a lot of questions about many, many things (I appreciate that part; it wasn't just a cursory few questions), plus acupuncture and a reflexology massage that lasted 45 minutes. She's been through so many "rough" treatments (PT, surgeries, etc) and it was so nice to just see her relax during a treatment. I think these "gentler" treatments might be a good addition to the other treatments. She responded well, and we're going back on Saturday for more treatment.

So has anyone else had experience with this kind of thing?

Thanks!
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Old 05-17-2013, 10:34 AM #2
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I haven't done it personally but what I have generally heard/read is that many people experience pain relief from acupuncture...but it only lasts while they are actually doing it and returns right after the therapy. For this reason, I didn't have it on my list of things to try. If I had heard about it having longer lasting effects...I might have considered it.

I'm very happy your daughter is in remission! That is really great.

I will say that in my opinion...doctors are much too quick to go for invasive procedures over other options for treatment of RSD. On the one hand...quick treatment is the best shot at remission usually so you want to treat aggressively in the first few months if you can get a diagnosis that quick. I also understand that these procedures are the things they know the most about and are trained in. But I wish more of them would have a better understanding of some of the other options too...especially for patients who experience spread or who have no luck with the more invasive procedure. So many are like, "Blocks don't work, let's do an SCS. SCS doesn't work, sorry I have nothing to offer you." Or, "You don't want an SCS, there's nothing I can offer you." It leaves so many of us frustrated and giving up hope when there ARE other options out there for treatment.

The two biggest things that helped me were physical therapy (including use of TENS unit) and tDCS. Neither is an invasive procedure (assuming you have the right sort of therapy) but both were key to getting me better. I'm not in remission...but functionally am SO much better than I was. Also, things like changing my diet, hot baths with Epsom salts, using heating pads, etc have also made a noticeable difference in my pain levels. I had to find out about all of these things on the internet (including the right sorts of exercises I should be doing and how to go about the physical therapy). Why don't doctors inform their patients of these sorts of things? How come even talking about physical therapy with most doctors they just Rx it but don't go over with you what you should be doing or what to expect or anything? They should KNOW these things and discuss it with their patients.

And there are other treatments out there too...I just can't really speak to them because I don't have the personal experience. But the point is that there are OPTIONS besides the standard blocks and such. I think about all the people who AREN'T on the internet and can't find sites like this one and educate themselves on the various treatment options. How many of them COULD be helped by these therapies but will never learn about them? So upsetting.
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Old 05-17-2013, 05:30 PM #3
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I have tried acupuncture. I found that I got great pain relief!!
I would still be going but it has become cos t prohibitive for me.

But I sincerely love the pain relief that I recieved!!!!

I say give it a shot if it doesn't work out....you're not out too much.
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Old 05-17-2013, 06:49 PM #4
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Quote:
Originally Posted by catra121 View Post
I haven't done it personally but what I have generally heard/read is that many people experience pain relief from acupuncture...but it only lasts while they are actually doing it and returns right after the therapy. For this reason, I didn't have it on my list of things to try. If I had heard about it having longer lasting effects...I might have considered it.
I haven't really heard much about it in terms of RSD, so I thought I'd start a thread on it

Quote:
I'm very happy your daughter is in remission! That is really great.
OMG, yes!!!

Quote:
I will say that in my opinion...doctors are much too quick to go for invasive procedures over other options for treatment of RSD. On the one hand...quick treatment is the best shot at remission usually so you want to treat aggressively in the first few months if you can get a diagnosis that quick. I also understand that these procedures are the things they know the most about and are trained in. But I wish more of them would have a better understanding of some of the other options too...especially for patients who experience spread or who have no luck with the more invasive procedure. So many are like, "Blocks don't work, let's do an SCS. SCS doesn't work, sorry I have nothing to offer you." Or, "You don't want an SCS, there's nothing I can offer you." It leaves so many of us frustrated and giving up hope when there ARE other options out there for treatment.
Yes, my doctor was just like that. But they're busy people and often don't have time for research. That's why these forums are helpful (plus just the comfort of talking to people that understand!!!) They were very aggressive with my daughter, and she's kind of a wreck still even though she's in remission. The acupuncture and reflexology seemed to definitely help, but I think the biggest help will be to get her out of school. I swear, I'm going to tie her down in her bed for at least a week after her last final! (but I'm guessing I won't have to tie her - she wants to stay in bed!) Thank God her teachers have been a huge help and have cancelled a lot of her work.

Quote:
The two biggest things that helped me were physical therapy (including use of TENS unit) and tDCS. Neither is an invasive procedure (assuming you have the right sort of therapy) but both were key to getting me better. I'm not in remission...but functionally am SO much better than I was. Also, things like changing my diet, hot baths with Epsom salts, using heating pads, etc have also made a noticeable difference in my pain levels. I had to find out about all of these things on the internet (including the right sorts of exercises I should be doing and how to go about the physical therapy). Why don't doctors inform their patients of these sorts of things? How come even talking about physical therapy with most doctors they just Rx it but don't go over with you what you should be doing or what to expect or anything? They should KNOW these things and discuss it with their patients.
Yes, I wish they knew more. I think you're right - we just have to find out other things and see what works for us. The Epsom salt baths really help my daughter, but I have to fight her to get her in them because she's so tired she just wants to go to bed.

Quote:
And there are other treatments out there too...I just can't really speak to them because I don't have the personal experience. But the point is that there are OPTIONS besides the standard blocks and such. I think about all the people who AREN'T on the internet and can't find sites like this one and educate themselves on the various treatment options. How many of them COULD be helped by these therapies but will never learn about them? So upsetting.
I know!!
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Old 05-17-2013, 06:53 PM #5
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Quote:
Originally Posted by Abbie View Post
I have tried acupuncture. I found that I got great pain relief!!
I would still be going but it has become cos t prohibitive for me.

But I sincerely love the pain relief that I recieved!!!!

I say give it a shot if it doesn't work out....you're not out too much.
Hi Abbie! Did you try it for RSD, or do you have something else?

I think it's worth a shot, too. My poor daughter is so terrified of needles, now, especially because of all of the Bier blocks in her foot (IV sticks in the foot are AWFUL), but even she could take the acupuncture needles.

Just be sure to research both the practitioner and the practice, as always.
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Old 05-18-2013, 01:24 AM #6
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I got no relief from the pain and still have 2 of the wounds visible from 19 jan 2010
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