Hey. I was also dx with rsd at age 14 (im 15 now) so I know how your daughter feels. It almost seems as if you are describing me and how I felt after being diagnosed. I felt the same way when first got rsd in June of 2006 and was finally dx in September of the same year. I was always sad and I felt withdrawn from everyone because they didn't understand and I was just always frustrated that nobody could help and relieve any of the pain and also being a freshman in highschool, it was harder on me. I was on crutches for 7 months and in a wheelchair for 2 months before they actually started treating me. But if you want to give your daughter my email address:

nikkijo@sc.rr.com

I would be happy to email back and forth to her.

Anyways, I know how your daughter feels and I know how you feel as well. I know it is very hard for a parent to see their child go through this. It was hard for me to see my mom going through it.

For me, the things I found to help best was to try and make things seem as normal as possible. I am not one to accept change very well and I didn't like going from being normal to having everyone stare at me and treat me different and doing everything for me because I was an independent person. I was also a high level competitive gymnast before my injury leading to rsd so I pretty much lived in the gym. I thourouly enjoyed going to visit atleast once a week and I was able to do things w/o my foot (before spreading to all 4 limbs and back/head/neck area). But try taking her to see the horses atleast once a week even if she says she doesn't want to go. It will help greatly. And have her help with the grooming and brushing.

But some other things that helped me were finding an adult (not family or any really close family friends) and just talking with them. Before, I felt that just not saying anything about it to anybody was the best solution but then I started talking to my science and health teachers because they were very understanding and concerned and I never realized how much that helped. And now at my rehab place I am going to for therapy, I am in a daytreatment program with some of the nicest people you could ever meet. We all have different injuries (stroke, paralyzation, brain injuries, etc) and although we can't fully relate to how the pain feels, we all can relate to the different emotions we feel with it all (frustration, jelousy, sadness, etc).

But just have her talk with someone. She doesn't even have to bring up the rsd. Just talking to someone helps. Then after the conversations are just natural, the rsd and everything dealing with it will just come out.

I hope this helps out. Best of luck to you and your daughter.

Nikki

Hey girl, I wanted to suggest something. It's obvious from your post that you love dogs, and miss working with them.

I was a member of the Humane Society for many years, and they desperately need people like you! I don't know what level of work you can do, but there are many things they need help with. Adoption booths in malls, where they need people to talk to prospective owners, or fill out paperwork, whatever. They need people to answer phones, emails, etc. They need folks who can work at socializing animals... not much hard activity needed, just time and patience (which as an rsd'er you have, lol).

Arrange to meet with someone from the Humane Society, please. It would do both you and the dogs a world of good

I'm sorry for both you and your daughter. I have only recently be dx with RSD, but I also have horses. I haven't ridden in over 3 years, yet I still spend time with them. I had to get them used to the crutches, then wheelchairs, then pumps going on and off. On my worse days, (I had a lot), hubby would gather all the equipment I was attached to, carry me to my wheelchair, take me outside the door, then he would bring one of the horses to me so I could smell and pet him. It wasn't much, but in all honestly, if I didn't have my horses, dogs, and cats, I don't think I would have a reason to get out of bed. Kids are grown, and hubby can take care of himself. If the horses bring her joy, try to get her close to one, even just to do a light brushing. Just to get a horsey/doggy kiss is worth it's weight in gold. If she wants to talk to another horse lover/owner, I'd love to talk to her. It doesn't matter the age, losing the ability to do what you love hurts, sometimes more than the RSD>
Mary

Yes, I miss working with dogs a LOT!! I just adore dogs, and when my RSD got real bad it was upsetting to lose the hobby/ job I loved so much.

I still have my pup, and I do try and brush him at times and I pet him (good desensitization!) all the time. He is my baby, and has comforted me through some pretty rough days. I love him to pieces (hey, I put a pic of him in the photo thread... if you want to see my baby)!

Thanks for the idea, that might be something worth looking into! I doubt that I will ever be able to groom or train dogs again (I am not losing hope though, because it might happen!), but I want to find some job I can do that includes dogs (preferrably at home, and I can choose my own hours) some way!

Thanks again, Rogue! Tell me if you have any more ideas on the subject!

Heather,

I know I posted and told you what I think you SHOULD NOT do regarding what doctor to see and what hospital to work with.

I am telling you all this because it is what I SO WISH someone could have told me, when I was first diagnosed with RSD! I had a bad experience, and so did a friend of mine with the children's hospitals! For some reason, when children/ teenagers get diagnosed with RSD the doctors assume that the child/ teenager has psychological problems that caused it! No matter if you say "But it started with an injury! She doesn't have psychological problems"... some will give you this reply, "In 80% of children there is psychological stress and we cannot find an identifying injury". Just because the child cannot remember the injury that started it doesn't mean there isn't an injury starting it! (I mean, the child wouldn't remember every bump and bruise, and the RSDSA says that even a deep bruise can cause RSD!), and yes, 80% of children/ teenagers do have psychological stress!! All teens have life stresses- think about teens breaking up, having relationships and additudes, etc! But that does not mean that it causes RSD! An injury starts the cycle of the body going haywire.

Why do doctors who work with children/ RSD say that it is psychological, but doctors who work with adults/ RSD don't say that? (for the most part!)

Dr. Robert J. Schwartzman states "it's never, ever psychiatric. When you have severe pain that totally wrecks your life, you're depressed."

In contrast, doctors from Children's Hospital feel it IS psychiatric! So, I am just begging you, unless you feel your daughter has a psychological problem, PLEASE don't fall into their hands. They will put things into your daughter's medical records that you DON'T want!! They always slant things their way, and they see you and your daughter as psychological nut cases. That is really the way it is.

Now, what SHOULD you do? I would suggest looking for a pain management doctor who works with children/ teenagers. It'll be hard (and the pain management doctors from the children's hospitals won't work), as a lot won't work with children... only adults. I'd suggest finding some, calling and seeing if they work with teenagers and RSD. A neurologist or rheumatologist would also work well! Just make sure they deal with RSD and teens. That is what I had to do. It was hard finding one, and waiting some time to see him, but it is the best that can be done under the circumstances.

A good doctor can start your daughter on medications, injections, therapies, etc. and hopefully things will make a good turn around for your daughter!

I really hope things work out! Take care!


P.S. I know you must feel so bad for your daughter... I know how my parents feel so bad that I am going through all this, and they feel so bad that they are so helpless. Even with medications I live in severe pain (nearly full body RSD), and there isn't anything my parents can do for me. The only thing they can do is lend me a listening ear sometimes and encourage/ comfort me.

Here is a thread on the topic of hobbies you CAN do with RSD: http://neurotalk.psychcentral.com/sh...ad.php?t=13626

What IHH said above is completely correct. I just want to add a bit, as after 14 years of research, I've discovered a few things.

Why do peds pain management docs think RSD is psychological in kids? It's idiotic, but there's sort of a reason. Basically, kids respond well to the treatments they do. That's because these pediatric docs use very basic, conservative and conventional treatments to treat RSD. They prescribe intensive physical therapy, and maybe some Neurontin and Elavil or a TENS unit. And it works for a lot of kids, and it works well with no invasive procedures.

So I've established that their treatment works. It works generally for kids and not for adults. And the reason is that kids have something adults don't have, which really works in their favor: neuroplasticity.

Basically, a younger nervous system is more able to rewire and retrain itself than an older one. Some of this ability lasts into young adulthood (mid- to late 20s). It means that the malfunctioning nervous system is more readily responsive to therapies that will retrain it. After the age of 30, things are much harder.

So, really this is a complex problem. These doctors are terrible and demeaning, but they get real results. That's because in addition to being demeaning, they use real treatments. It would make things so much simpler if they were either all bad or all good, but that's life, I guess.

I do have to say that despite my mostly in-tact sanity, being treated at a Children's Hospital did wonders for my RSD and horrors to my emotional state. I eventually recovered from the emotional part. The question is whether the sacrifice was worthwhile, and that's something each individual must answer for his or herself. Six years later, I'm still not sure.

Hi Heather...

I have sent you a PM so I hope you get it.

I must tell you I have visited so many sites, including parent only sites, and have found this to be the most valuable, uplifting, caring spot to read and post. This group of people have given me hope, confidence and knowledge. I hope you find this too.

The most difficult thing as a parent for me, is that everything I have ever done for my child was to make things not hurt--a bandaid, a kiss, an ice pack, a hug. Most of the time this made it all better....with RSD, you can't do those things as easily and they don't make it better for the pain. That is hard. There are other things we CAN do to make it better, we just have to help each other find those things. The people here do that. They share ideas and thoughts on what to try next and maybe what not to try. They do give hope. They also rant and vent and express so many feelings that I have that I have no one else to say it to and by sharing feelings of grief and sadness, relieve my anxiety and give me stability. I know that sounds a bit odd, but for me there is comfort in knowing I am not the only stressed, worried and upset person because of RSD.

Life has changed for you and we are here to help and we know through your process, you will help us.

I look forward to talking to you-
Katherine

Heather,

Don't think of your daughter's situation as a battle that you can win or lose. Instead, think of it as a marathon that must be run one step at a time. She will need to draw from your strength and resolve. Therefore it is important that you remain hopeful. RSD is a condition that come with ups and downs; highs and lows; good days and bad days.

All of the comments posted should give you a good sense of what a loving and caring place this forum is. There is a wealth of knowledge and information here - please draw from it.

Above all it is of the utmost importance that you get her competent treatment by physicians experienced with RSD patients. Trust but verify.

I will remember you all in prayer.

EJ

RSDmom, I sent you a PM. I've never sent one before, so I hope it went through!