Chronic Pain Linked To Old Memories
 

Jim Broatch of the RSDSA has just forwarded a press release about a new article by Vania Apkarian, whom older redears will recall as the author of "Chronic back pain is associated with decreased prefrontal and thalamic gray matter density," J Neurosci. 2004 Nov 17;24(46):10410-5 [free full text at http://www.jneurosci.org/cgi/content...urcetype=HWCIT

In any event Dr. Apkarian's new research is as exciting as the last round was disturbing, and once again features our old "friends" the NMDA receptors:

CHRONIC PAIN LINKED TO OLD MEMORIES

Scientists have found that a key source of chronic pain appears to be an old memory trace stuck in the prefrontal cortex. With new understanding of the pain source, Vania Apkarian, professor of physiology, and of anesthesiology, at Northwestern University's Feinberg School of Medicine (USA), has identified a drug that controls persistent nerve pain by targeting the part of the brain that experiences the emotional suffering of pain. The drug is D-Cycloserine, which has been used to treat phobic behaviour over the past decade. In animal studies, D-Cycloserine appeared to significantly diminish the emotional suffering from pain as well as reduce the sensitivity of the formerly injured site. It also controlled nerve pain resulting from chemotherapy, noted Apkarian, who is a member of the Robert H. Lurie Comprehensive Cancer Center at Northwestern University. The drug has long-term benefits. Animals appeared to be pain free 30 days after the last dose of a 30-day regime of D-Cycloserine. "In some ways, you can think of chronic pain as the inability to turn off the memory of the pain," Apkarian said. "What's exciting is that we now may be relieving what has clinically been the most difficult to treat - the suffering or the emotional component of pain." Scientists have always tried to understand pain from the viewpoint of sensation, Apkarian said. "To control it, they tried to stop the sensory input to the brain. "We are saying there's a cognitive memory and emotional component in the brain that seems abnormal. Easing that may have a bigger effect on suffering." Chronic pain is not caused by a single mechanism, Apkarian noted. Sensory abnormalities in people with chronic pain probably drive this memory abnormality. One of Apkarian's studies with rats tried to separately measure their emotional suffering and their physical pain after being treated with the drug (The rats had chronic pain from a healed limb injury). The results indicated the animals' emotional suffering decreased much more than their physical pain. While the physical pain appeared to be reduced 30 per cent - their emotional suffering completely disappeared. Based on the animal results, the next step will be to test the drug in clinical trials, Apkarian said. When we do this in a clinical trial, we expect people to say I still have the pain, but it's not bothering me anymore," Apkarian said. "We think they will have a physical awareness of the pain, but its emotional consequences will have decreased." He said the drug potentially may lower the amount of standard analgesics people have to use. In Apkarian's previous study, published in late 2006, he revealed that chronic back pain appears in a different part of the brain than the discomfort of burning your finger, for example. With a functional MRI, he found that chronic back pain shows up in the prefrontal cortex. By contrast, the acute sensory pain of the burned finger appears in the sensory part of the thalamus. Apkarian also found that the longer a person has been suffering from chronic pain, the more activity in the prefrontal cortex. He was able to predict the years of their suffering from the MRI. It's cumulative memory," he explained. "I can predict with 90 per cent accuracy how many years they have been living in that pain without even asking them the question."

The study will be published online in Pain: The Journal of the International Association for the Study of Pain

This appears to be the abstract for the article in question:

Pain. 2007 Apr 19
d-Cycloserine reduces neuropathic pain behavior through limbic NMDA-mediated circuitry.Millecamps M, Centeno MV, Berra HH, Rudick CN, Lavarello S, Tkatch T, Apkarian AV.
Department of Physiology, Feinberg School of Medicine, Northwestern University, 303 E Chicago Ave., Chicago, IL 60611, United States.

Human brain imaging studies suggest that chronic neuropathic pain has a strong emotional component that is mediated by medial prefrontal cortex (mPFC) activity; in rodents, the mPFC is involved in emotional and cognitive aspects of behavior, including the extinction of Pavlovian fear conditioning. Together, these findings suggest that the cortex may modulate the memory trace of pain. As d-cycloserine (DCS), a partial agonist of the NMDA receptor, can enhance learning and potentiate the extinction of acquired fear, in the present study we tested its efficacy in neuropathic pain behavior. In rats with spared nerve injury (SNI), repeated daily oral administration of DCS reduced mechanical sensitivity of the injured limb in a dose-dependent manner; this effect continued for weeks after the cessation of DCS treatment. In addition, re-exposure to DCS further enhanced antinociceptive behavior. Repeated oral DCS administration also reduced cancer chemotherapy drug-induced neuropathic pain behavior. Infusions of DCS directly into the mPFC (especially within prelimbic cortex) or the amygdala (but not into thalamus, insula, or occipital cortex) acutely induced antinociception in SNI rats. The antinociceptive effect of intra-mPFC DCS infusions was mimicked by NMDA and glycine, and blocked by HA 966. In the mPFC of SNI rats, NR2B expression was down-regulated; however, this effect was reversed with repeated oral DCS. Lastly, infusions of DCS into mPFC reversed place avoidance behavior induced by mechanical stimulation of the injured paw in SNI rats. These findings indicate that limbic NMDA-mediated circuitry is involved in long-term reduction in neuropathic pain behavior.

PMID: 17449176

I will try and post a copy if I can get my hands on it.

Mike

I don't know about anyone else (any of the other teens and young adults on the board), but I'm not old enough to actually have "old" memories. I certainly wasn't before I got RSD at the age of 12!

Really, this doesn't sound very promising. I'd rather they actually treat the pain than the "emotional effects." Really, it's just another way of trying to make it seem like we're all just crazy people who let some pain take hold of our lives, which is not true.

So, I'm pretty much rewriting this...I reacted very badly to my first read-through because it seemed at first like the old "it's all in your head" routine. It's not quite that, but it's not particularly helpful either.

Sorry to anyone who read what I wrote first! Perhaps all those years of doctors telling me I was crazy have made me a little angrier than I like to let on.

Dear Betsy -

Not to worry. The relationship between pain and suffering is as important as it is sometimes difficult. Pain, physical and/or psychological is to an extent unavoidable in life. Suffering is not.

Essentially "suffering" - as opposed to pain - is caused by attachments to the way things used to be or aversions to the way they are. Cut those out of the picture, and the pain alone is a lot easier to tolerate. If there's now going to be a drug of all things that can help in the process, that may be terrific. In the meantime, we have the mindfulness practice of meditation and teachers like Jon Kabat-Zinn, whose Mindfulness Based Stress Reduction program has given countless pain patients, including myself, a real lifeline out of the morass of chronic pain.

My meditation teacher, Shinzen Young expresses it this way:

Suffering = Pain x Resistance

For a copy of one of his essays on the subject, "A Pain-Processing Algorithm," click here:http://shinzen.org/shinsub3/artPainP...gAlgorithm.pdf. I would urge you to give it a look. (For anyone whose interested, Shinzen's book and accompanying CD "BREAK THROUGH PAIN: A Step-by-Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain" (2005) - which a number of people in this little group have found helpful - is available either through his website or the publisher, Sounds True.)

These are concepts that have been around for a long time, and are really, if I may be forgiven, at the heart of Buddhism. "I teach suffering, its origin, cessation and path. That's all I teach", declared the Buddha 2500 years ago. For four very good audio clips on the subject, by some serious teachers, each around 13 minutes long, I would invite you to open a BBC page on Religion & Ethics - Buddhism/The Four Noble Truths. http://www.bbc.co.uk/religion/religi...letruths.shtml In particular, the pieces by Stephen Batchelor and Robert Thurman are simultaneously accessible and profound.

Enjoy!

Mike

p.s. And good luck on the move to NC.

Exciting news, indeed.

It's been around for many years and is used for other disorders as well. It sounds great for me. I'll be talking to my doc.

I just told a good friend that I seem incapable of initiating anything; that I can react, but otherwise the fires inside seem to have gone out. Well, I reacted to this press release, but before I comment about it, I would like to see what the journal article actually says. but the link didn't take me there.

I'd appreciate it if someone would let me know if it worked for them. If it did, I'll find another way to see the article, but if not: Mike, try again...Vic

Thanks, Mike. That actually explains a lot. It makes sense in my personal life as well as in general. I guess that I feel that I'm not really suffering right now. I have RSD and pain and problems using my leg in general, but this has been more than half of my life, and it's just something to try to minimize. That's not something that's come easily to me, and I think it must be even harder if someone is living an adult life and it suddenly ends. I've just had to learn to mold my life to my physical abilities, because nothing is set at the age of 12.

Off to bed now! Thanks for the article and your response!

-Betsy

Can't sleep, even with lots of oxycodone, so a couple of quick points. First to Vic, I've come up with what should be a stable link to the 2004 Apkarian article, and revised my initial post accordingly. Hopefully (1) it will work and (2) I'll be able to get a copy of the new article in short order.

Now to Betsy. I cannot begin to imagine the strength of character that's required to go through this at your age. I have two sons, the oldest is 14 and he's adapted to a lot of health problems over the years, but nothing as significant as RSD! I join Rogue in commending you on your openness and presence of mind.

I guess the good news is that while having good coping/equanimity skills can't hurt at any age, it is my understanding that young people have a much better prognosis with this disease, translating into a much higher chance for successful recoveries, either spontaneously or through medical therapies.

And while this is admittedly "off topic," I have it on good authority that - to be specific - the younger you are, the greater the probability that a trip to Germany would produce a successful outcome. If you haven't seen it, I would urge you and your parents to take a look at a short article written for people without any medical background called "Overview of Ketamine Infusion Therapy," by Philip Getson, DO which is posted on the Reflex Sympathetic Dystrophy Syndrome Assn. webpage at http://www.rsds.org/3/treatment/ketamine.html You're in my heart kid.

Mike

Rat's pain
 

Poor rats! But, I am wondering how they monitor the pain that the rats feel? And, if they can monitor that, why can't they do the same for humans? We (RSD'ers) might seem healthy on the outside, suffering on the inside. The rat's aren't able to voice their pain on a scale, or tell their Researchers that the pain has travelled, or changed from zappy pains to deep aching pains. How do the researchers know that? Or, am I just not able to understand the whole concept, and missed the point altogether....hee hee....(most likely scenario!)
Hippy

Hi Everybody,

I wish the rats could talk.:winky: Roz

Thanks for this post Mike. I hope this reply doesn't come off as negative but I just see this study as giving support to all medical professionals who see RSD as an ailment that is "all in our heads". I didn't know rats had "old memories" or that there was a way to measure their physical pain. And, how does one measure a rats emotional response to pain? I wasn't even aware that rats had much going on in the emotion department. I just see this as a bunch of medical mumbo jumbo that works against us. But,thanks. Jeannie

Jeannie -

With all respect, I must disagree. I think that a medication that could reduce the "suffering" component of the pain experience would be wonderful. I mean, people spend years seeking that kind of equanimity through meditative practice, and having attained it from time to time, I can tell you that there's much to recommend it. If it can be put in a bottle, why not?

Put it another way, if there isn't a magic potion that simply takes the pain away, isn't having the ability to work around it - not in some old fashion and nasty cognitive/behavioral model - but to really and truly do so, the next best thing?

And for what it's worth, Apkarian is the last guy to believe that pain is "all in your head" having proved that chronic pain pain actually results in the loss of gray matter over time. Which is to say, that it's organic as hell.

Mike

long post warning....
 

OK guys,

I agree, Mike.

Sooo... no need to get your knickers in a twist, everyone, as we say in the UK, lol. Let's not be so sensitive about the psychological components that we dismiss a potentially very beneficial experiment, though I'd like to know more about it, hopefully when it's fully published, I will.

People in chronic pain speak of experiences they suffer on a daily basis: anger, frustration, depression, worry, worthlessness, and hopelessness. They deal with extremely unpleasant sensory and emotional experiences, which often last a lifetime. Welcome to the limbic system. As Mike says, does it much matter how we achieve escape from these things?

So, to clear up what I think may be a few misunderstandings...

Firstly, a "memory trace" is not a scrap of memory. The first live "memory trace" was only seen as recently as mid 2004. They think that memory is made up of small pieces of transient data, some of which they can "see" now on an fMRI - that *is* a "memory trace - which exist for a short while – usually seconds, sometimes hours, but then it's gone. Then they think it gets shuttled elsewhere, but that mechanism is still a mystery. A full "memory" is made up of a zillion retrieved pieces of data. The brain is not like a computer's hard drive, with hard data being written to a central data bank. The brain stores stuff all over the place.

And no need to get all emotional ;) over the phrase “emotional brain”. The "Emotional Brain" is just another name for the Limbic System, as used by medics, just like you might use the phrases Sympathetic/Autonomic/Central/Peripheral Nervous System. We're talking a little psychology here and a large dollop of physiology, biomechanics and biochemistry.

The Limbic system, otherwise known as "The emotional brain" is a group of interconnected deep brain structures, common to all mammals, and involved in olfaction, emotion, motivation, behavior, pain and various autonomic functions.

It comprises the endocrine system and the autonomic nervous system. The limbic system is embryologically an older part of the brain and developed to manage 'fight' or 'flight' chemicals. It's an evolutionary necessity. It also influences the formation of memory by integrating emotional states with stored memories of physical sensations.

Here is a very nice extract from "The Brain Encyclopedia" by Carol Turkington.

The Limbic System

Far from being a state of consciousness divorced from the physical brain, a person's emotions are produced by chemicals exquisitely intertwined with the physiological processes of the body so that in the truest sense what affects the body affects the mind and emotions, and vice versa.

The center of emotions in the brain can be found in the limbic system where the vast panoply of emotions is regulated through the release of excitatory and inhibitory neurotransmitters: Pleasure may be linked with chemical signals produced by the release of noradrenalin, and pain is associated with many neurotransmitters. Mood appears to be linked with serotonin and dopamine.

In response to a variety of stimuli, emotions arise in the limbic system, travelling along neural pathways to the frontal lobes of the cortex, where feelings are monitored and interpreted. These two brain structures next influence the hypothalamus, which transmits the messages that trigger appropriate physical responses.

And the endocrine system, within the “emotional brain”, is one of the body’s main systems for communicating, controlling and coordinating the body’s work. It works with the nervous system, reproductive system, kidneys, gut, liver and fat to help maintain and control body energy levels, reproduction, growth and development, internal balance of body systems, called homeostasis - hormones etc, and responses to surroundings, stress, and injury.

OK, so that's the "emotional brain" and this research posted by Mike, says it is demonstrating a result with regards to that.

I think the originating Press Office at Northwestern University has "sexed it up" too much with that "Old memory" headline. That isn't what the researchers called it.

But anyway, I would like to know very much more about their experimental processes, especially about this “build-up” of memory because I have absolutely no idea what they can be meaning here, I can't find any research about it. This area of brain research - actually all brain research - is still very much in its infancy. As well as the limbic system, there are at least 25 other areas of the brain that are involved in pain, its transmission and ramifications, and further work is ongoing, so I'd like to know how they have unravelled it.

Also, an fMRI cannot show what's happening on the neuronal and micro level, so I can't see how they can categorically state what's happening in their experiment.

But anyhow, I have lots more to say about this – it’s absolutely fascinating, I think. I don't really care about the details, though - if it works, great! I'll take almost anything if it makes me feel better. lol! Though I won't hold my breath waiting, lots more work to be done there I reckon.

I'm just interested in the whole subject.....but this is faaaar to long, so enough. For now…;)

all the best!

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:D

thoughts
 

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!

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.

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

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 :)

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

sorry
 

I guess I didn't get my point across....sorry about that.

There are many things she does and can do and I never meant to say that she couldn't.

Betsy, I do think that part of what I was trying to say did come across when you talk about adjusting and planning for the future.

RSDmom

Thanks for your kind words, theoneRogue420. I wish half of them were really true!!

The truth is that I didn't move past RSD with grace and dignity, at least not as I see it. When I was a teenager, I was a flat-out mess. I looked good on paper, but I assure you that RSD (and not being believed about it) turned me into an emotional wreck. I'm still trying to recover, I'm still trying to get those experiences that I missed during that time.

I wish I had known this stuff five or six years ago! My parents always told me that high school doesn't matter in the long run, but who believes that when they're actually in high school? What teenager accepts life with no friends, of staying home on weekends while everyone else is having fun? I certainly didn't.

It's only been the past few years that I've begun to feel happy with life. It was really hard for me, but it's possible. College was a great experience. I now have close friends I can trust too, which is something I never had in high school.

It's easy to philosophize about high school now that I'm out of it. It's not so easy to see this stuff while in the situation! But I write from experience that things CAN get better. For instance, people mature...and most quickly leave the stage of being "scared" of the "sick kid." Some never get there, but most do.

I can say that I've been able to do basically what I want in the past 4 or 5 years, with some accomodations here and there. I've graduated from college. I've traveled (spent six months out of the country). Some of this is only possible because I've got my symptoms down to a somewhat manageable level. Some of it is because I've decided that sometimes it's worthwhile to endure the pain in order to do what I want to do. And it's not easy.

When all of my friends went off on the first hike and I couldn't go, I felt pretty bad. It was the first week of the program, and I thought that I would be missing an important bonding opportunity. But it turned out that they had missed me, and nobody had spent that day forgetting my existence. It reminded me that I need to have a bit more faith in people than I did when I was younger. It's evidence that people really do mature and accept that not everyone is perfectly physically able.

Wow, another long philosophical post! I'm going back to sleep now, it's only 8:15. As far as I'm concerned, there should only be one 8:15, and it should be during primetime!

-Betsy

Clarification
 

Hello to all and hope you are having a good day. I would like to clarify a comment I made a few days ago. I did not mean to sound disrespectful to Mike and certainly apologize if I did but I do stand by my feelings. RSD has long been established as a physical disorder and yet there are still doctors out there who view it as an "it's all in your head problem." I know because I have had the displeasure of going to them. They accuse us of malingering. They accuse us of working the system. They accuse us of attention seeking. They accuse us of faking our symptoms for financial gain. [ Though I'll never figure out how they figure I fake a blue ice cold limb]. Anyway, I feel that any study that even mentions the word emotion gives these medical professionals the support they are looking for. I know that the study does not hint at this point of view but I can see how some might see it differently. That's really the point I was trying to make. Thanks for listening. Jeannie

Dear Jeannie -

I fully agree with you on the "it's all in your head" doctors. My point was just that Dr. Apkarian et al are not part of that group. As I understand it, they are looking for a biological mechanism that will make the pain more managable, at the experiential level.

I hope this clarification is useful.

Mike

Hi usedtobe,

I actually had the same initial reaction as you did. After rereading the article posted, I'm not so sure my first thoughts were correct. I've had many of the same experiences you have...the "it's all in your head" and "you could get better if you want to" crap. It's terrible, almost more harmful than RSD itself, isn't it? But the others who responded explained the article differently, and if they interpreted it correctly, then it does not mean what I first believed.

I'm still not sure I like the idea it poses---of a medication that will essentially make you not care about the pain. I'd rather find something to make the pain actually go away! It seems like taking an easy way out, kind of. One would get to essentially skip all of the hardship. I personally don't think that I can benefit from this type of treatment, because after 12 years I've come to terms with this disease and have found things that it can't take away from me. But if it really works, maybe it can help someone continue on with his or her life despite having pain. In my mind, it just kind of skips that transformative time, in which I had to figure out how to function in life.

To me, the real question to ask is whether there's any benefit to the long road? To get all existential, is suffering necessary to the human experience? Does removing that from the equation mean that we will miss something that would otherwise have bettered our minds or spirits? I don't know. I believe that some suffering is necessary in life, but this kind of suffering is probably beyond the kind that can do any good.

I have to quit this philosophy crap...

-Betsy

Hey Betsy, whatever you do don't stop the philosophy crap, it's such a big part of discussion, love it.

Hey Jeanne, I'm thinking of it like this, 2 scenarios (a little tongue in cheek, but I hope you'll see what I'm getting at):

Imagine a GP who has tried all the usual pain meds on an RSD sufferer with little success. Would he be keen to give you a med that made you just "feel better", even if it doesn't touch the pain?
You bet. Because it would be a quick fix and they could get on with seeing other patients. And you *would* be feeling better. Not all better, but better.

Imagine a psychiatrist who has tried all the usual pain meds and mind tricks on an RSD sufferer with little success. Would he be keen to give you a med that made you just "feel better", even if it doesn't touch the pain?
You bet *not*. Because for a psychiatrist it would be *just* a quick fix. And if it worked he wouldn't have any patients. So you wouldn't be feeling better, any better.
;)

There's a lot of debate between the psychiatric community and the brain researchers on this subject, its validity, ethics, etc. but since all emotions do come down in big measure to the balance of chemicals....as Mike suggested, any bottled "feel better" that works is just fine by me, I'd drink old dishwater if I knew it would help.

My moods are more precarious every day, yet I need to be as upbeat as possible. Feeling better makes me want to go out, move around, be more active and (very important in my case, I can be a hermit) interactive. On the days I'm in a good mood, that's how I feel, on less good days I'm less active, on down to just not wanting to get up or answer the phone. But the pain's there on all of those days, ya know...

I doubt if this proposed new med would actually come under the heading of "mood enhancer", but it sounds like it would have a similar result by lessening the negatives. So...bring it on Dr. Apkarian et al, the sooner the better, far as I'm concerned.

all the best :)