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scottm

The undeserved stigma that can come with CPS

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I have found as time has marched on its merry way that I have become more and more unwilling to discuss my Central pain outside a small circle such as we have here.

 

There is a very real stigma tied to pain, in particular that pain which does not have an apparent physical cause. Because we fall into a chronic pain
category and when anyone hears about our pain we often get lumped into the opioid group even when we explain we don't take those. I rely on an
antidepressant called duluxatine aka Cymbalta. It alters my brain chemistry to suppress but not eliminate the pain. However it seems most people including a
lot of doctors don't understand that central pain is a different beast and in many cases opioid medicine is maybe a 3rd or 4th line treatment because it does not
work well for us as a rule.

 

Some of my friends think I take 'pain pills' although I've explained it a number of times, however the media has stigmatized pain treatment to the point that
they hear pain and think opioid. They have told me how I'll get addicted. We've had this discussion several times but the differences in treatment are too
subtle (they're both pills) and besides if you take Cymbalta that is for depression so you must be confused. Better to just be quiet about it.

 

I've seen a few doctors that the moment you mention pain the discussion is over, they shut down and at best redirect the conversation, some are less
subtle about thinking you are a drug seeker and are completely uninterested in central vs 'tissue damage' pain. That foot you drag or arm that hangs limp
at your side can't be hurting because there is no injury. They have no experience with brain injury or the effects beyond the external ones, what happens
your head is all in your head. If you are looking for relief you are out of luck, move along.

 

So I live with it. I have a good neuro but even he I don't tell the true magnitude of the pain. If it is a 7 I say 4-5 maybe so he doesn't do the doctor thing
of thinking I'm exaggerating. If someone asks what is wrong I just say I cold, which is true even though the cold is an ice-fire sensatio

n.

I choose to avoid the stigma that comes with this package and by extension keep my family free of it as much as possible. It's not like we don't have
enough issues to keep us from getting bored...

 

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Sooooo well said.

 

I just got RFA spinal block and I can walk around again, sleep,eat, think.

 

I now respond to the pain scale question as......hmmmm.....let me think, oh ah 10!!! 

 

they do not take it seriously...or do they wait for me to say 1????

 

I am mmore than chronic. it is existence.

dull my existence and dull my pain vise versa.

 

oh and I say I do not fear addiction, I fear losing my right to medication. quality of life for me is pam not screaming vs pam someone between breaths between screams.

 

yea, i am rare severe broken so i will do electrode soon. nothing helps but the spinal stuff.

 

thank you scott for allowing me to listen to kindred spirit, and speak.

 

we have a reward waiting for our martyrdom.

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I can empathize with you guys but just a little though.  I feel guilty listening to you talk about your pain.  As you know I have an ITB Pump.  What is nice about it is that as long as I'm not moving I feel absolutely no pain.  Lucky for me I am quadriplegic.  Without the pump I would constantly feel like I'm on fire.  The only time it actually DOES hurt is when my wife has to bend my knee, then it becomes a 7.

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That is wonderful for you Steve.

I recently asked my doc about the pump, he roots for the electrode. I not decided, but I am exploring.

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