United Brachial Plexus Network, Inc.

G'Day,

Quote," Perception is Reality "

In short the worst part of TBPI pain in the beginning is a lack of understanding as to what is happening in our body. Pain tells us we're in danger so we react in that way. The reality is TBPI pain is a direct result of a malfunction in our system caused by nerve damage. This means you are in NO danger as a result of this pain therefore it doesn't warrant fear. A key to mentally reducing your pain is to alter your perception and therefore alter your reality.

Gain a clinical understanding of the messages travelling through your system and give yourself the true perception that you are in no danger and ultimately apart from the obvious nerve damage and pain messages you are completely safe where you are.

Sadly there's no magic drug to stop your pain,

We don't have to get over it! We just have to get on with it, because it is what it is, feel free to mail me should you have further questions in relation to my theory!

Cheers and Peace

Jamie and Jack(my LTBPI)

Re the pain, I'd strongly suggest you see a pain specialist with experience in neurological pain. As you've read on these posts, there are a lot of choices out there, each with pros & cons. People react differently to these, so to a great extent it's a trial & error kind of thing to find the right combination & dosages. It was well worth doing that for my son John.

Take care,

Ellen

Your story sounds very familar. My hubby sustained TBPI due to a 25+ ft fall from a cell tower in March and the sensitivity to light touch was the same problem he had from right after the infury for about 2-3 months. We were working with an OT who actually had us doing de-sensitization routines at home and using different textures as tolerated and while it drove him crazy at the time, really helped and light touch is no longer painful.

The 2nd EMg to see if there is any improvement sounds like a good plan to start.

The Nuerontin made a difference although there is a certain level of constant pain, he didn't think it was helping and stopped taking it for about a week and the difference in pain level was obvious, now he doesn't miss a dose.

The Dr prescribed an anti-naseau med to compensate for the side effects of the Oxycodone ( Perocet) - in addition the extended release versions had less side effects. Everyone seems to have very different reactions/side effects to meds so it's unforntunately trial and error to find a cocktail that really works, for my hubby it's Nuerontin, Elavil and Oxycodone, still a level of constant pain but much more manageable.