[Patti_Christmas]

Hi guys! I know I've been gone awhile, but I have been exhausted! I started physical therapy on the 29th of March, and it's been pure hell!

At first, they started with the desensitizing which was torture alone, but then they started introducing the treadmill, bike and a thing called Nu-Step. The Nu-Step isn't that bad, it's the other things are awful!

When I'm walking on the treadmill, the battery moves and pinches me inside. I can still feel the paddle and it jabs me in the back. When I'm on the bike, I can't bend my knee past a certain degree, so it absolutely kills! The first day after the equipment was introduced, I was standing up and I felt a bone pop. I spent the next day and a half in bed with it elevated being very careful going between ice and heat.

I finally saw my pain management doctor last week and was asking him about the pain I was experiencing with the phsycial therapy. His only answer was that he would have them slow down. He said that they have a 6 week goal usually, but that he will let them know that I would need at least 6 months. He didn't make any decisions about his end of the treatment plan, but said he'd see me back in 3 weeks. He isn't sure what to do next, as the blocks didn't work and the stim isn't working. He did prescribe methadone and so far, it seems to be helping but makes me extremely queasy and dizzy. It also gives me terrible headaches.

Yesterday at phsycial therapy, I told the therapist (different one each time - grrrr, this is so stupid - it should be one assigned per person!) that certain equipment was casing pain - physical pain, not pain like my RSD. She tried to tell me that RSD is what is causing it, and that the paddle isn't "hurting", it's just everything is intensified because of the RSD. This pain is different, but they just won't listen. She put me on the treadmill and was playing with the speed. Well, my knee started to buckle, I caught myself with the side rails, but she put her hand on my back. I am ashamed to say that I grabbed her right around her wrist (I don't think I hurt her too bad), and reminded her not to touch me. The one therapist I had seen two days before had never treated a patient with RSD and had not treated anyone with a spinal cord stimulator such as mine.

I have rescheduled my appointment with the Cleveland Clinic until May. I was suppose to go on Monday, but I can't do it. I am so flipping sore that it is unbelievable!! I did schedule an appointment with the surgeon that re-implanted the stim and placed in the paddle for the 13th. I had to call his office because even though the Pain Management doctor had ordered/referred me to him for this surgery, he didn't place the restrictions on me and we need to know what I can and cannot do for phsyical therapy. I don't understand why the pain management doctor couldn't figure this out, but I am glad I did call the surgeon's office. They are shocked that I still am swollen real bad. They are getting me in quickly, and the good thing is that they are coming to the hospital/clinic just a few miles from my home to see me!

The MedTronics reps haven't contacted me, nor have they checked on how things are going. I had advised them that even with the changed settings done some time ago was still causing my heart to feel weird again. I feel like they have really dropped the ball on this. I have a lot of money in my ***** and have had so many problems that you would think they would check in on me. I know I could pick up the phone and let them know again, but at this point, I feel they should want to see how I am doing. I still get my surveys through email for the MedTronics Company and I fill them out very negatively. One would think they would read the surveys they send out...

On a happier note, my daughter's goat gave birth to a boy on April Fool's Day. We have named him Christmas Acres April Fool, Fool for short. He is doing great and is quite the handsome boy! He is well loved by his mom, half-sister and "adopted" boer brothers. I have some amazing pics that I will post in the next few days.

Thank you all for being so supportive and thank you so much for checking on me! At least here, I feel loved, understood and supported.

[hurting]

Sorry to here that you are in so much pain with getting little help.

I understand what you are going through mostly except for the SCS part.

I look at the best PT as if I can preform my daily duties with reasonable amount of pain that is fine. When they are causing you more pain then necessary out of you daily comfort zone from normal everyday pain it is time to stop. PT will hurt a little for a wail after for a few hours but when it causes you a lot of pain for days after that is not PT.

It seems like everyone is a expert with what you have but you know your body better then anyone else and if your body is telling you I am not suppose to feel like this you need to listen too it and stop. What may work for one may not work for you.

I have gone through all that was asked of me from all these so called experts with no help and improvement. I now question everything that they want to do to me and ask for proof if they cannot show me proof from someone that has gone through what they are wanting me to do and I can not talk to a real person that did that task I say no.

I am no ones Ginny Pig any more. They can do their test on them selfs first. It seems that a lot of these experts are cold a h and don't really care about us. They will do the only thing they know and hope for the best and will milk us along as long as they can get away with it until we or our ins. co. say enough.

Pain is our problem and we should not have to endure more to prove to everyone that this did not work or is not working. The system is limited to what is offered to us vs people that are going to recover from there pain where we do not recover from our pain it is here to stay for ever and all we want and need is help with it as best as possible. And what works for some with what we all have RSD/CRPS still my not work for everyone as the way they treat us. We need to each be treated not all be treated the same.

Sorry for the long rambling and I hope you get the help you need.

Also keep us informed on your SCS I would like to know how you are improving or not with it. My pm doc wants to implant one in me and I don't want one.

[daniella]

I did not have good results with PT. I did it at Cleveland Clinic too. I have on my own increased my walking etc. I do lack of range of motion which the docs says is very key in getting to a better place with rsd. Unfortunatly like you stated the pain gets top high. I do feel for me slow increases of any new movement is better then too much. Also like the other stated we are all different and some pt people don't look at you as an individual. I agree you need one person to work with you and one that deals with rsd a lot. Not like 1
case. Even at Cleveland Clinic some of the PT people were really clueless.Feel better