[momw/rsdchild]

Hello!

My 15 year old daughter has RSD/CRPS. She was diagnosed 3 years ago at the age of 12. It is in her left leg. She is in a bad flare up right now. We just moved to Oklahoma from Texas and I am wondering if anyone has a good doc they can recommend in OK. TX is so far to go when she is in such intense pain.

I have also read that some people have had good results with TENS units. I have one that I use for pelvic pain issues that I thought I could try with her if I knew where to put the leads. I don't know if I should put them on her leg where the pain is or on her low back where those nerves begin. Anyone with info or experience on this - your advice would be appreciated.

Just hoping to get some support for her and myself as her mom.

[firefly.10]

I don't know any doctors in OK but I tried the TENS unit before I got the neurostimulator. The TENS unit is a 50/50 shot as to whether it will help but you place it on the area that is affected. I have RSD/CRPS in my leg, foot and hip and I would put it directly on my hip in a square about 4" X 4" with the wires X patterned. Also my doctor gave me lidocaine cream which I would rub on the affected area which also helped a bit especially with the insane itchy sensation. Thought I was going to itch my skin clean off! Hope this helps.

[keep smilin]

Originally Posted by momw/rsdchild

Hello!

My 15 year old daughter has RSD/CRPS. She was diagnosed 3 years ago at the age of 12. It is in her left leg. She is in a bad flare up right now. We just moved to Oklahoma from Texas and I am wondering if anyone has a good doc they can recommend in OK. TX is so far to go when she is in such intense pain.

I have also read that some people have had good results with TENS units. I have one that I use for pelvic pain issues that I thought I could try with her if I knew where to put the leads. I don't know if I should put them on her leg where the pain is or on her low back where those nerves begin. Anyone with info or experience on this - your advice would be appreciated.

Just hoping to get some support for her and myself as her mom.

Dear momw/rsdchild,

Rsd is such an ugly aniimal...I am sorry for your daughter and also for you having to endure watching her have to go thru this... As a Mom, I always said I am happy that it is me not one of my kids nor my husband suffering... As far as the tens, if she can tolerate having it on her directly at the most severe RSD spot..that might be the best place but what I really want to say is please find and treat with a good knowledgeable RSD Dr...right away get their recommendtion and act early ie.. tens unit and more..... As your daughter is young and the sooner you act on pain intervention the better she may respond to lowering her pain levels and having possible spread.

Heres wishing you a really great day and her a low pain level day...You've come to the right spot in finding very caring wonderful people!!

Keep smilin...

[(Broken Wings)]

Welcome to NT

So sorry you and your daughter are going through so much with RSD. It's not easy to live with.

I hope she gets relief with the TENS unit.

[momw/rsdchild]

Thanks for the kind words. I have not tried the TENS yet because she is just in so much pain right now. She has an amazing pediatric pain management specialist at Children's Hospital in Dallas so we are going down there tomorrow. Since we moved a couple of months ago to OK it is now a 5 hour drive to get there instead of 30 minutes. That is why I am looking for someone here in OK who can take over her care. Tomorrow they are going to do a ketamine IV infusion to see if that will help her. She has had 4 month long stays in the children's hospital to get indwelling epidurals with ketamine. They work wonders and the last one she had was March 2009 and this is her first pain flare up since then. If the IV doesn't work they will admit and do the epidural. It will be much harder not being local right now though. I am going to ask about the lidocaine cream too because she had the Lidoderm patches that work some but when she pulls them off it just stirs it all up again so it isn't really worth it.

Thanks again and if anyone hears of anyone in OK who treats this please let me know.

[keep smilin]

Originally Posted by momw/rsdchild

Thanks for the kind words. I have not tried the TENS yet because she is just in so much pain right now. She has an amazing pediatric pain management specialist at Children's Hospital in Dallas so we are going down there tomorrow. Since we moved a couple of months ago to OK it is now a 5 hour drive to get there instead of 30 minutes. That is why I am looking for someone here in OK who can take over her care. Tomorrow they are going to do a ketamine IV infusion to see if that will help her. She has had 4 month long stays in the children's hospital to get indwelling epidurals with ketamine. They work wonders and the last one she had was March 2009 and this is her first pain flare up since then. If the IV doesn't work they will admit and do the epidural. It will be much harder not being local right now though. I am going to ask about the lidocaine cream too because she had the Lidoderm patches that work some but when she pulls them off it just stirs it all up again so it isn't really worth it.

Thanks again and if anyone hears of anyone in OK who treats this please let me know.

Dear Momw/rsdchild...


Best wishes for an informative , productive appt. today!! I can relate to the patches as I have tryed them but can't get them off without tears of pain.... Continue to learn all you can about RSD...be your daughter's best advocate and most of all...spill on us here!!

KS

[Bossle]

Originally Posted by momw/rsdchild

Hello!

My 15 year old daughter has RSD/CRPS. She was diagnosed 3 years ago at the age of 12. It is in her left leg. She is in a bad flare up right now. We just moved to Oklahoma from Texas and I am wondering if anyone has a good doc they can recommend in OK. TX is so far to go when she is in such intense pain.

I have also read that some people have had good results with TENS units. I have one that I use for pelvic pain issues that I thought I could try with her if I knew where to put the leads. I don't know if I should put them on her leg where the pain is or on her low back where those nerves begin. Anyone with info or experience on this - your advice would be appreciated.

Just hoping to get some support for her and myself as her mom.

I use my TENS unit almost everyday. Somedays it just hurts too much to put the pads on and take them off. My PT has had RSD twice and it had been in remission twice now. She puts the pads over the affected area and just turns it up good enough for me to feel it. She also criss-crosses the leads sometimes in an X pattern. I don't think there is really a perfect science for it. They keep tellling me to work through the pain, but it is easier said than done sometimes. Experiment a little. See what seems to offer the most releif if any. I am not having much luck with my TENS unit at all.
I wish you and your daughter the best of luck.