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

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