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