I Had to Leave Pain Management to get Pain Management

If you have Ehlers Danlos, you know that sometime the pain can be relentless.  That is what led me to see a pain specialist.  At first it was working out real nice.  He got the pain down to a tolerable level.  It was after that, that the trouble began.  Pain Management's theory is that if someone has chronic pain you put them on a long acting opiate and prescribe short acting opiate for break-through pain.  Sounds good in theory, but it doesn't work that way in real life.  They also like to put you on an antidepressant even though you're not depressed.  They claim it heps with pain - never did for me.  Anyway,  I was on the fentanyl patch for my long-acting opiate.  I had to go up to 100mcg/hr every three days before my pain came down - not gone.  So if I'm still having pain while on the fentanyl patch, what is break-through pain?  If break-through pain is constant, then it's not break-through pain.  To me it's undertreated pain. 

However,  I couldn't function on the patch, I was sleeping all the time.  The cymbalta also gave me weird side affects (weird dreams, brain zaps).  When I discussed this with the doctor he said he would not let me take a short acting opiate without a long acting one and that we will treat excessive pain with injections. (they don't help and they're very expensive)

I also very much disliked that I was made to come in every month and justify why I should continue to receive pain medication. (that's what it felt like).  Not to mention that they hold your prescriptions hostage until you give them a urine screen.  It felt very humiliating.  I understand the laws that these doctors operate under, but it doesn't mean I have to like it - or put up with it.  So I chose not to do it anymore.

I visited my primary care doctor who knows me and my family quite well.  I explained to him why I didn't want to go to pain management anymore - he understood.  I also wanted off the fentanyl and cymbalta.  We agreed to do a trial of Norco for daily pain and Soma for muscle spasms and he gave me a small prescription for percocet for out of control pain.  I have to say that I have never felt better.  I don't have the groggy feeling that came with the fentanyl.  I feel like I have more control over how I manage my pain.  And the best thing of all, he gives me refills so I don't have to go in every month.

This is working for now.  I know EDS changes over time, I may someday have to go back to pain management.  But for now, I love having more control in this area of my life.