I would suggest that your daughter start new hobbies. That is what I have done. I could barely use my hands, but I made myself start new hobbies. I made myself type, work with clay (sculpey clay is a lot of fun and you can make many cool things with it!), bake, etc... It takes me a LONG time to do anything, but it is an accomplishment.

I was grooming dogs for my neighbors (had about 10 dogs I groomed regularly on my own), training/ grooming/ running with my own dog... and then my RSD got really bad and it drove me to search for a doctor who knew what was wrong with me. I haven't groomed any dogs in months, and I can no longer do that. For a while I was so sad that I could no longer do this, as it was my hobby, and I was planning on grooming/ training dogs (starting my own business), but then I was encouraged to try something new. Try doing something other that I could do to some extent. It was then I discovered sculpey clay, researching different topics and my mom has been telling me I should start trying to crochet again. I just have to find new hobbies that I CAN do, and not think about all I CANNOT do, and feel like I am sooooo limited. I am very limited, but I cannot dwell on that. I need to find things that I can do and succeed.

I would encourage your daughter to try a new hobby, or to do something with her horse. Even if it is just brushing him for a few minutes, but still being with her horse, and doing something more "normal". Encourage her to try normal activities. It might have to be slow at first, and only for a few minutes, but it is still something! She can feel that she accomplished something- even if it's small it is still something! We RSDers can feel that we accomplished something by trying something small, and though others see it as small, it is a victory for us!! Even going to the mailbox, getting in the car, walking a few feet unassisted, etc are victories!

I love this quote (I remembered it when I was writing the above sentances): "It is better to try and fail then not to try and succeed."

I hope your daughter can find something to do! Normal activities also help with feeling useful, and not shut up and depressed. I wouldn't suggest allowing her to never leave the house, because she will become really depressed and shut up from the outside world. It is a downward spiral.

I hope I have helped you in some way! Please feel free to PM me! I'd love to talk with you and your daughter!

Keep on encouraging her! A positive spirit beside me at a hard time is such a blessing! I appreciate when people praise me for something I have done and they recognize that it is a victory for me!

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.