I have to type quickly because I have to go to PT. So here is the short and dirty of today's rant.

Yestereday I had really bad burning in my neck, today too. I can't put up my hair because it pulls on my scalp and it burns too bad to continue having my hair up. I went to my PT, who knows it all, and said do you know what I can do to help calm any of this down? No but you do. Excuse me? She said well if it hurts you hurt it back. Great, thanks! @$#%! She said, honestly I have never seen anything like your case before and I don't know what to do for you. Excellent! Now what?...I emailed my CM at WC to tell her that....hehehehe...we'll see.

Anyway. So, the other things that happened yesterday were after speaking to a number of people we all seem to be doing many of the same exercises, all have to be there the same amount of time every week. Two of them said they are now worse than before, one has a back injury and the other has an elbow injury. Also the one with the elbow injury said that she heard from other people that the clinic we are at has a bad reputation from people who have been there before. Oh, and the last thing was that there was a guy I sat next to in my educational session that has a soft bristle brush to work over his hand that has nerve damage. I ask who, what, how? He said because his doctor ordered desensitization despite the fact that his own doctor doesn't even believe that it will be successful for him.

Okay so maybe I need a doctor to order it for me. I also think that because I didn't have so many of the symptoms since my original visit to the doctor that diagnosed me they are ignoring everything in between and working strictly off that original diagnosis, over a month ago when I was capable of doing a LOT more. I have only gotten worse since then and no one that can do anything about it, other than my CM at WC, is doing anything about it.

Thanks guys for all your insite, stories and support. I really didn't want to be this person with PT because everyone goes on about their horrible PT stories and then they talk about their success stories with it. So I thought I won't have such a bad outlook and stay positive. My husband is even wondering what they have done to his wife, I am sure.
Hugs everyone...Have a positive day! J

I agree with Jo on the TOS. It may be in the mix of what you have. I thought of that but didn't say it for some reason in my last post to you. It sounds like you might have a mix of things going on.

As far as PT, again, I believe it has to be good PT'ers that know a lot about RSD. I wouldn't do the PT they are making you do, it is just too much for people with RSD. But a gentler kind of PT will help you a lot. It's been about 3 years since I had any PT and now they have more ways of helping RSD patients as Tayla is talking about.

When you talk about not being able to pull your hair up that sounds like what I went through. One of my Physical Therapist wanted me to get it cut. I said no but went and got it thinned. I still do that. This makes me think TOS. A lot of the people that have TOS say the same thing about their hair. A good TOS Dr. would be someone you might want to see to rule it out or in.

I had 2 Drs. ordering my therapy. My TOS Dr. and my PCP and my PCP kept up with if it was making me better or worse. It's important to have Drs. that know what they are doing for you.

I hope that you start getting the help you need with this soon.

Ada