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 06-12-2007, 08:58 AM #1
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Artist, thanks for a wonderful read. It was a very well written article, clear and concise.

I agree, there is much more I'd like to know. I, too, shall be quite interested when the full article comes out.

But on the flip side, lol... I also have had a hard time with dr.s & lawyers. I will never forget the work comp lawyer trying to get my hysterectomy put into the official records for the case. When I demanded (I was InProPer, handling my own case) to know why they were at all relevant, the idiot looked straight at the judge and said "Well, you know, the root word for that is "hyster"...and we all know that this woman is being quite hysterical about a minor injury. It may well be a hormone issue she is suffering from".

I assume this whole spiel might have worked on a different judge. But he failed to even really LOOK at the judge before he said any of this. We had been in the hearing for over an hour, I guess his observational skills were minimal, at best. SHE was a woman in her late 50's or early 60's, who was looking at him as if he had lost his frickin mind!

So it's easy to get touchy when someone mentions the emotional brain being involved, lol. Most of us, especially the women, have been through a LOT both during and after our diagnoses. Which I find to be a hoot, actually... go ahead, men... underestimate us! But you all can't even pass a kidney stone without freaking out... try a baby, for goodness sake!
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Old 06-12-2007, 11:30 AM #2
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From what I got out of it -
I don't think it is referring to or meaning the old " it's all in your head " thing. I wish i could explain better how I am understanding it... not enough coffee yet- LOL

I think it kind of has to do with what the EFT stuff might help with.
Emotional Freedom Techniques
Where emotional relief brings physical health
Self help method often works where nothing else will No Drugs Involved ~ High Success Rate

supposedly the tapping and such can help to reprogram your brain /system. I really think it did help with my RSI when I tried it in 99.

http://www.emofree.com/
a free pdf of info and techniques - http://www.emofree.com/downloadeftmanual.asp

I know I know this seems very wacky and spacey - but it's free and it can't hurt to try it right???? no side effects
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Old 06-12-2007, 08:32 PM #3
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The multi-disciplinary approach to helping my daughter that our clinic has taken very much includes a psychological component. This is not to say that my daughter's pain is in her head--the psychological approach that the team has in place is to talk about how we as a family deal with our new life, how she can learn coping techniques, stress reducing techniques, and other issues that come up. She also needs to work on understanding what it is like to have gone from being a popular girl to having NO friends and how to reintroduce herself to not only social but school life.

I also wanted to add a comment that it probably is different when a child gets RSD because, yes, there are more chances that it may, for whatever reason, not return after flaring. And that yes, llife hasn't been established as in career and spouse etc. BUT, there is a different reality we face. All that has been lost. All hopes and dreams to have that chance at what ever job you want, whatever travels you want to make, whatever relationships you want to have. So much grief over never having a chance at so much.

As a mom, I see her peers playing sports, having boy/girl friends, dreaming of careers without restrictions, even just going to school--- I see groups of kids walking down the street laughing, knowing that she really can't do that.

We move on and adjust our lives. Psychological help is important for that. I also dream of a day, that she may not have to suffer the emotional and physical pain of RSD and if this study helps, then I will be paying close attention.

Thanks for listening....


We also had tons of questions about how they could tell what emotions rats had!
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Old 06-12-2007, 09:33 PM #4
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Thanks, RSDmom,

It's so sad to read of your daughter's plight, but the approach you are taking sounds very sensible, I really hope it can help her, the poor lamb.

Yes, in many ways it's like:
"It's all in your head" in a framework of ignorance = negative
"It's all in your head" in a framework of knowledge = positive

I found a couple of article about those poor rats, since we're all wondering, lol! which I put below,
all the best

http://www.bristol.ac.uk/researchreview/2004/1113906447
Emotional expectations of rats...
Pessimistic Rats
9 March 2004

Researchers at the Veterinary School found that whether an animal anticipates that something good or bad is going to happen can provide a clue as to the emotion it may be experiencing...

Rats housed in unpredictable conditions appear to have a more negative outlook than those housed in stable, settled conditions. Researchers at the Veterinary School found that whether an animal anticipates that something good or bad is going to happen can provide a clue as to the emotion it may be experiencing. Emma Harding, Liz Paul and Mike Mendl from the Centre for Behavioural Biology consider that the research offers a new way of measuring the emotional states of animals. It will also help scientists better understand the effects of housing conditions on animal emotion and welfare, so allowing the design of more welfare-friendly animal housing.

Previous research has shown that anxious and depressed people tend to expect bad things to happen – they see the glass as half empty rather than half full – while the opposite is true for happy people. The Bristol team have developed a new technique for investigating whether this is also the case in animals.

Rats were trained to recognise that a sound of a particular pitch predicted a good event – the arrival of food – and that another sound of a different pitch predicted a bad event – no food and a short noise. They were then presented with sounds of intermediate pitch to see whether they treated these ambiguous sounds as indicating the good or bad event. Rats kept in unpredictable housing conditions were less likely to treat these sounds as heralding the arrival of the good event than were those housed in stable environments. Their judgements show parallels with the negative outlook seen in some depressed people, suggesting that a disrupted home life also disrupts their mood.


http://news.bbc.co.uk/2/hi/programme...la/4880272.stm
Searching the brain for happiness
Tuesday, 2 May 2006
By Dr Morten L Kringelbach
Neuroscientist at the University of Oxford

In November 2005 the Dalai Lama was invited to speak at the annual meeting of the Society for Neuroscience in Washington DC.

While this event was not without controversy, his speech was generally well received and surprised many scientists with his remarkable open-mindedness, particularly concerning the validity of neuroscientific enquiry.

The Dalai Lama described a normal person's mind as "a troublemaker" and confessed that he "still feels anger and fear".

Meditation, he said, can help. But he was not adverse to other paths and volunteered himself as a patient if neuroscientists wanted to pursue easier ways to quell the "troublemakers of the mind".

The pursuit of happiness is a preoccupation for many of us and has probably been since the dawn of mankind. Yet few of us come close to achieving this state with any regularity. And even when happiness finally descends upon us, we often only realise it after the fact.

The neuroscience of happiness and well-being is still in its infancy.

So far, the focus of research has been on two related but perhaps somewhat distant cousins: pleasure and desire.

Reward would seem to be central to both of these states and so has been studied in other animals by behavioural psychologists since at least the beginning of the 20th century.

Pleasure centre

In studies during the 1950s psychologists James Olds and Peter Milner working at McGill University in Canada, found that rats would repeatedly press levers to receive tiny jolts of current injected through electrodes implanted deep within their brains.

When this brain stimulation was targeted at certain areas of the brain the rats would repeatedly press the lever - even up to 2000 times per hour.

In fact they would stop almost all other normal behaviours, including feeding, drinking and sex.

These findings seemed to suggest that Olds and Milner had discovered the pleasure centre in the brain, and it turns out that these overlap with the regions damaged in Parkinson's disease.

The main chemical aiding neural signalling in these regions is dopamine, and so it was quickly dubbed the brain's "pleasure chemical".

Additional human studies during the 1960s by Robert Heath at Tulane University in the US tried to take advantage of these findings in some ethically questionable experiments on mentally ill patients.

Infamously, they even implanted electrodes to try to cure homosexuality. This line of research was eventually stopped.

Although the researchers also found compulsive lever pressing in some patients, it is not clear from these patients' subjective reports that the electrodes did indeed cause real pleasure.

Wanting and liking

Instead, recent work by Kent Berridge, at the University of Michigan in the US, indicates that the electrodes may have been activating the anatomical regions that are involved in desire rather than pleasure.

Investigating reward systems in rats, Berridge found that they have specific facial expressions for pleasant and nasty tasting foods.

Sugary food makes them lick their lips contentedly - just as human infants do, whereas a bitter taste leads to a disgusted, lip-curling expression.

When Berridge manipulated the rats' dopamine levels, he found that their expressions remained unchanged.

Berridge is therefore proposing a distinction between desire and pleasure - wanting and liking - in terms of both the brain regions and the neurochemical substances that mediate these subjective states.

The dopamine system appears to encode desire while the opioid system, which contains our own natural morphine-like compounds, is closer to pleasure.

It is clear, however, that rats are different from humans.

Pleasure and desire are complex emotions in humans, and so there are still many interesting things to learn.

Central to current research is a brain region called the orbitofrontal cortex, a brain region that is evolutionary more recently developed in humans and has connections to both the opioid and dopamine systems.

Using neuroimaging, we have found that it contains regions that correlate with subjective reports of pleasure.

What can this research ultimately tell us about happiness, pleasure and desire?

Contentment

Could happiness be best described as pleasure without desire, a state of contentment and indifference?

Such a state is perhaps akin to the kind of bliss that buddhists actively seek through meditation.

If so, it is possible that neuroscientists may one day find ways to help induce this state.

We might then have choice of a true utilitarian society where the overall happiness can really be maximized just as the 18th century philosopher Jeremy Bentham wanted.

Although the question of whether such a society would be desirable and pleasurable still remains to be answered.

The Dalai Lama was clearly interested in the end state of happiness, rather than the means by which it is achieved.

However, he also spoke of how humans have "much conflicting emotion, much bad emotion, jealousy, anger, fear. This is our great troublemaker."

He reminded the audience of the "fundamental values of compassion and affection" that are "important to the development of body and brain".

It would seem prudent for future research on happiness, pleasure and desire not to ignore this compassionate plea for human dignity, while tinkering with the very core of what makes us human.
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Old 06-12-2007, 11:32 PM #5
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Exclamation got the article

If I may be forgiven for not responding in the moment to Artist's thoughtful musings, a friend of mine just sent me the full text of "d-Cycloserine reduces neuropathic pain behavior through limbic NMDA-mediated circuitry," Magali Millecamps, Maria V. Centeno, Hector H. Berra, Charles N. Rudick, Simona Lavarello, Tatiana Tkatch, A. Vania Apkarian, Pain (2007), doi:10.1016/j.pain.2007.03.003.

Unfortunately, the thing weighs in at 1.12 MB, making it too large to post here by more than a factor of 5. That and I just moved, so I'm stuck here in dial-up land until I can get my computer consultant out here to set up my DSL service. SO . . . if anyone with a fast connection will volunteer, I can email the pdf file to him or her, who can in turn then post a note for interested folks to drop him/her PMs with their email addresses, and the article can be disseminated thusly. A little cumbersome I grant you, but it's what I've got.

The first to send me a PM with an email address and an expression of interest gets it. Any takers?

Mike
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Old 06-12-2007, 11:37 PM #6
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Yup, I'm on.

So Mike I'll PM you my email, anyone else interested PM me with their email and I'll forward it, ok?

Thanks for this, Mike,
all the best
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Old 06-13-2007, 12:41 AM #7
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RSDmom,

I'm glad your daughter has such good treatment. But I have to comment on what you said. Do you really believe that RSD takes away all hope of doing what one wants to do? I agree that it takes away unlimited possibilities, but in reality, I have to believe that we're all limited in some ways (I think it's safe to say that I was never destined to be a mathematitician).

Back in the day (when I was in high school, 5 years ago), I guess I sort of felt like I didn't have may possibilities in life. But lately (as in, after HS), I've realized that RSD hasn't taken very many options away in reality. When you're in HS, all of the little things like not being able to participate in sports or not going to dances actually matter. After HS, they really don't. It sucks to not get that experience, which is a valuable part of development and growing up. But in the long run, I don't think I've been too negatively impacted by spending prom in the hospital. It may be painful to not have a boyfriend while in HS, but I think that you can probably agree that once you're on the other side of graduation, it isn't such a big deal.

Really, I think that although some of my options have been taken away, I still have many left. Had I never gotten RSD, I might have majored in violin performance. Instead, I'm playing at a much lower level, and I'll never have that opportunity. It does hurt, sometimes quite a lot, when I'm reminded that I'm struggling with pieces that I otherwise might have mastered during middle school. However, I've found other things that interest me, and I will someday be something of a professional musician (I hope)...but a vocalist instead of a violinist.

I really think that RSD has made me change what I must do with my life, but it certainly hasn't stopped me from having a life. I would have been much happier had this all been easy, but I think I've had to learn to be a little more flexible, which isn't necessarily a bad thing. Because I got this at a young age, I've learned my limitations and my capabilities, and I have learned to work within those boundries.

There's really no good age to get any debilitating illness. If you're young, maybe you can learn to cope and work around the disease before starting life on your own. But you miss out on childhood and so much of the great stuff of being young. I'm STILL not caught up with my "typical" peers in terms of some life experience, and I'm lightyears ahead of them in terms of others.

I'm sure that, like everything else, this is a different process for everyone. I've had RSD for more than half of my life. It's been better, it's been worse. Right now, I'm able to function fairly well. In my darkest days, I never considered the possibility that this would derail my entire future. I just needed to pick my future carefully.

So I guess what I'm trying to say is that with accomodations, careful planning and a lot of perseverance, kids with RSD can do a lot of things. Maybe not anything...I would never consider being a professional athlete or anything. We just need to figure out what we CAN do, what we WANT to do, and then try to match up some of those possibilities.

As for my comment about not being set in life, I guess it's kind of that RSD has forced me to take different paths in life. To further this metaphor, I feel that it's easier to see and turn off on those different paths if you're not already cruising on the main highway when the big construction sign comes up. To take the metaphor to a somewhat ridiculous degree, the smaller paths often take longer and are bumpy, but will hopefully eventually get us to where we want to go.

-Betsy

Last edited by betsyherm; 06-13-2007 at 01:36 AM. Reason: Clarification...I'm an editor at heart.
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