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Always_Believe · 01-30-2016, 07:56 PM

Quote:

Originally Posted by Inspiretoday

I'm so sorry to hear you are in so much pain. I was also involved in a push through the pain program, it ended up making my pain worse and the CRPS spread. To me they just don't have validity and are run by people who must think CRPS is primarily in your head. It also produced a lot of "I'm failing" feelings for me. When I started working with a PT that got it, we only pushed to the "hurts a lot" and then backed off, brought the pain down and then tried again. This worked tremendously for me.

I also believe being on the right meds is important. LDN was a game changer for me as well and Ketamine Infusions. I know this is easier said than done, especially when there are issues with insurance.

Good luck and many healing vibes sent your way

I am getting the feeling this program runs on the basis of 're-training' ones sympathetic nervous system and that is the "cure". I think the OT there is the only one who really gets it.

Ahhhh...the meds...there is so much I have to say on this point which, sadly, continues to fall on deaf ears. PCP, ortho #3, neuro, PM #1 and now the current PM seem to all be focused on anything that is mainly used for long-term solutions (gabapentin, cymbalta, lyrica, amitriptyline, etc). I agree there are several medications that may achieve a much lower pain level on the long term. I am struggling with the short-term that is becoming long-term because no one is managing this properly. Insurance has only been an issue with who I can see. Unfortunately, those I can see don't want to do anything other than what I have already tried that hasn't worked (with the exception of the ONE med that HAS brought some level of relief, hydrocodone...not even a 'big bad' but they are all scared of it apparently) and absolutely nothing that's primary use is for pain...or a muscle relaxant...or anything really.

On the F-I-L front...he passed without pain this evening with his wife, children and almost all of his grandchildren at his side...2 of his grandchildren were already there to meet him.