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. She has an amazing pediatric pain management doc at Children's Hospital in Dallas but it is so far to drive when she is in such pain. We are going down tomorrow to try to get her some immediate help but we will need someone in-state soon.

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. It just worries me to stick those leads on her right where she hurts so bad.

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

Hi
A TENS unit helps some but aggravates others,,in my case It Aggravates[I have RSD II-Causalgia] if that part matters or not, That I do not know,,You can try the unit and see what happens,,in the case that it does aggravate,it ussually takes a few hrs after its use[after its been shut off] thats when most times that the flares will appear,,good luck to you,and everything is worth a try,,,as for where to put the leads,everyone is different,,my Dr had me put them on boths side surrounding the area where the nerve entrpment was,,,,I dont know of a dr in that area,But when me and my wife travel a great distant to see dr;s,,we use a small_5ft in lenght, air matress that we fold the seats down and it fits in the back of the car,we put a comforter on it witha few pillows for me to maunuver around for comfort and down the road we go,,we get alot of stares,but it eases my pain to lye down instead of being in a seated postion for hours at a time,,I just keep passing up the snacks and drinks to my wife,,,,just an idea,, bobber

Hi Mom and Daughter, I'm so sorry you are dealing with this. I was misdiagnosed for 4 years and flew a couple states away to a sports injury ortho group. 1 min. later diagnosed as rsd. He ordered a Tens unit and started my on physical therapy.
Since you are seeing the Dr. tomorrow, how about taking your tens unit with you and asking about using it on your daughter, and where to put the leads. Also this good Dr. may have the name of a Doc in Oklahoma.
I have a friend in Oklahoma with RSD and I'll ask her who she is seeing. She is a Workmans's Comp patient, so maybe not the best leads for Dr.
Younger people have the best change of remission. And the sooner from the accident, injury, or surgery the better chance for remission.
I have had this 15 years, I'm 61 years and it's full body. There was a 4 year delay from the surgery that caused the RSD and finding a Dr. who diagnosed me. They often know other rsd drs. Also go to RSDSA it's the national organization for rsd and put in your zip code and it will give you names of local Dr. Jim Broatch also knows names of rsd Drs. Also, you can find out if there is a support group near by. That would be wonderful.
If I can get a hold of my friend in Oklahoma and get a name, I'll private message you the name , town, and phone number.
For me, I also did massage therapy and water therapy and all together they have kept me mobile. I only have one hand partially incapacitated.
I'll get back with you, loretta with soft hugs

Hello, Mom/Daughter, I too am sorry you are going through a flare up. I have had RSD/Causalgia, five years. I also have the TENS Unit and wouldn’t leave home without it. I have to be careful where I put the leads, I had open fractures and multiple surgeries, so I do stay away from the scar tissue. I usually find comfort on a low pulsating level and I put the leads near the attaching muscles. A warm bath is great comfort for the pain and the tension that it produces. Also, you mentioned that you just moved, I am sure you are both going through some adjustments and unfortunately, for RSDer’s this can provoke our pain. I will keep you both in my prayers, maybe try a warm bath for yourself too and know that you are okay, this will pass. God Bless

Jeanie

Hi mom,

I am also a mom with a daughter with RSD, she is 16 years old now...She has had RSD for many years but was misdiagnosed for many. Have you tried any of the Childrens pain rehab programs. Like the ones at the Cleveland Clinic, or the Childrens hospital of philadelphia, or the one at Bostons' childrens hospital? They are great programs that teach children how to manage pain in a holistic approach. My daughter went to the Cleveland clinic two times. I highly recommend these programs before you try any surgeries.

Also, I am with Loretta, do not use anything on your child without a doctors recommendation. Take the tens unit with you to your visit. If you do it wrong you could cause her so much more pain. Good luck with your visit and I wish you much luck, my prayers are with you.

Sandy

Thanks for your kind words. We have been through a pain management program silimar to the others that is in Dallas. They brought in a doc to start the program the month my daughter was injured. She was their first patient. It is a great program and we have done the inpatient aspect 4 times now.
Tomorrow she is geting an IV with ketamine to hopefully dull the pain she is feeling. In the past she has had epidurals with ketamine so it only affects her legs. They require general anesthesia to place and hospitalization whil in so we are trying the IV to see if it will do the same thing. Let's hope so!

Hi My daughter has also done Ketamine Infusions with Dr Kirkpatrick in Tampa...I have seen some changes, unfortunately, she has bad days still. I was in hopes that this would be the answer, but like everyone else here, we know that this horrible disease doesn't go away. They are wonderful here, so listen to them. They know what they are talking about and have helped me through some really tough times. And have also rejoiced with me during good times. I have been on here for over a year now. Life isn't much better, but it sure helps to have all of these absolutely WONDERFUL, loving people, help me through my day and that I am proud to call family.


Sandy

Hey there!

This could have been me- I was a crazy gymnast and was injured when I was 11/12 yrs old. One icky knee surgery later on my left knee, and I've been dealing with this for a while.

I personally was not offended at all by the suggestion of using a TENS unit and think that it is a great idea. It is not like sharing medications, and you really can't have side effects from it. If you start at a level of low stimulation and increase it slowly, there isn't much that can go wrong. Some people don't like it, true, but it won't injure you. You can get a brief bit of random muscle twitching if you have it up to high, but I think that it can definitely do more good than harm. I started using one when I was 13 I think, and I know that it is not contraindicated for someone this age. One of the beauties of a TENS is that you can play around with lead placement and stimulation level to figure out what works and feels good- it's not as fixed as a SCS. And wetting the sticky leads a bit (after they are disconnected!) helps to take them off of sensitive skin a bit easier.

It's also kind of implied that something that works for one person may not work for another- this is all about advice and support, and we need to make newer people feel welcome. I used to stop coming to this site at times because I felt looked down on or attacked sometimes, and I really don't want anyone else to feel that way.

And heat pad! That's one of my favorite things ever, and I totally agree with learning how to meditate by listening to CDs. Mindfulness helps with the stress of this and I wish I found it earlier. Especially while dealing with RSD and puberty at the same time!

Lynn

This is good advice, Sandy, but I wouldn't apply it to just children or young adults. No one should self-treat whan it comes to this stuff. This is just like "sharing" medications. If it works for me - that doesn't mean it will work for you. Or that you and I will have the same dosage of meds. Or (in the case of the TENS) be applied in the same spot for the same duration at the same intensity, etc.

Mom: By all means, take your TENS unit with you on your next visit. If you already own a perfectly good functioning device, you could save $$ by using it instead of buying one. Most of the time, doctors, clinics and hospitals simply issue new equipment without asking if there is the possibility you already own something. (Makes sense, most people don't have a TENS in their closet, after all.) But we can help keep down costs by volunteering when there is a chance that something we already own will work. when I had foot surgery in 2000, I used some old wooden crutches from the 1960's. They still worked, saving me and my insurance company the cost of new ones.

Good luck to you and your daughter and welcome to our forum. Do not hesitate to bring up any subject at all.

Mike

Try looking at this one link and the name of a treatment center. I recall reading somewhere a well known RSD doctor working in Oklahoma but can not recall the doctors name.

http://www.tulsapain.com/

Pain Evaluation and Treatment Center in Tulsa, Oklahoma