Welcome Dawn,

I am so sorry to hear about all you are going through. You will find solace, suggestions and companionship here. Jo*Mar made some excellent points all around. I think the TOS possibility is worth pursuing. I always harp that nerve entrapment should be explored when RSD comes up after any procedure. Dr. Lee Dellon goes so far as to say 80% of CRPS cases have an undiagnosed entrapment. The symptoms do mimick CRPS and a Nerve Conduction Study can help rule this out. It is important because treatment is totally different.

On PT, it is absolutely okay for you to advocate for yourself and it is NOT okay for her to be causing pain. I am concerned that what she is doing is making you worse. Movement and exercise is very important to recovery from CRPS but pain must be kept down. Nerves are already overactive and releasing chemical messages that get to your dorsal horn and brain and can cause changes. It is a fine balance. Many people find aquatherapy beneficial. You want range of motion without stress. If you are lifting weights over your head that can be a bad idea on multiple fronts, some just age related. Also when our nervous systems are already overloaded things go kablooey. I had radiating pain and tingling up my leg for months and thought it was spread. Turns out I was aggravating a different nerve than the injured one riding the recumbent bike. I figured it out after taking 10 days off my workout. My point is our systems our delicate and you don't want to add any stress to it. It is vital that we figure out what helps and what causes flare. Don't feel bad starting low and progressing slowly. Just keep at it!

Lastly, everyone's symptoms are different but I never had swelling of any magnitude either. I do have pain, temperature and color changes. Take a look at the Budapest Criteria and see where you fit. Keep taking care of yourself. Take what you need to manage pain but remember that there are a lot of med options. My mood went to hell on neurontin which is great for many people. Nortriptyline at bed happens to be better for me. Get your workup to be sure they didn't miss anything and DO NOT GIVE UP. Odds are in your favor to improve. Most people with CRPS get better over time. Stanton-Hicks and many other bigwigs support this.

Sending Healing Love, Littlepaw