Artist, I pm'ed you, I would like that article please.

Betsy, again you astound me! Either you are a VERRRY old soul, or having rsd has helped make you into a superb young woman. Either way, your parents must be so very proud to have you as their daughter... I would be! My oldest son is five months younger than you, and still single <wink hint wink>

As I said in my earlier post, rsd turns one into a more cerebral person. Occasionally, one must sit still and think in order to learn and grow. Rsd certainly makes that possible, lol.

I was a perfectly healthy teenager, with a high IQ... and it basically got me nowhere, lol. I went to a co-ed international boarding school tucked away in the mountains of Utah. I had every opportunity a person could ask for.

But that did NOT mean that I (or anyone else at this school for the highly intelligent but socially inept) had an easy time of it. I went to my jr/sr prom... but with my sociology professor! I was a gifted pianist... but with hands too small to reach a full octave. I had scholarship possibilities at several major uni's... but my father wouldn't sign the apps cuz I wouldn't pick a major he approved of.

"Teenhood" sucks for everyone, as far as I can tell, lol. Some may have a hard time getting dates... others end up heartbroken (or with a baby! ) Some may have health issues and not be able to participate in sports... and "jocks" end up getting hurt and "ending their careers" before they even got started. The list is endless.

What matters, as Betsy well knows, is what we DO with the hand we are dealt.

RSDMom, I sure wish you could get your daughter together with Betsy. Your daughter needs to see that it's not only possible to overcome rsd and move forward... it's possible to do so as Betsy has, with impressive thinking, grace and dignity!

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

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