Despite What You May Get Told---There IS Someone Who Can Help You.....

As a lot of you now know, I suffer from chronic pain and also suffer from something called Ehlers Danlos Syndrome.  It's where my tendons, ligaments and things do NOT hold my joints in very well. 

Anyway, the point of this blog is to inform anyone out there that doesn't think there is a single doctor out there to help them, well guess what, THERE IS!  DO NOT let anyone tell you there is nothing else they can do for you.  Go to the end of the rope and PULL that so you can climb higher and higher until you get the right person who is willing to help you.

I had seen my primary doctor 2 weeks after having my my arthroscopic surgery because I was still having pain.  My knee surgeon wanted NOTHING to do with it.  He said to suffer in his technical words.  I explained to her I was having a lot of pain and that it was getting rather ridiculous.  I was put on another regimen of pain meds, but those weren't what I was needing.  I've had chronic pain in my right knee for the past 11 plus years.  I'm tired of suffering.  I've had 10 knee surgeries on my right knee alone. You'd think they'd just replace it, but I'm too young.
Anyway, after returning to her a few weeks later she started me on Gabapentin for neuropathic pain.  She figured since I have had so many surgeries my nerves are what the pain is about, not my actual muscles and things.  We also discussed Complex Regional Pain Syndrom (CRPS). 

After much discussion she was going to contact my orthopedic surgeon and discuss getting me into the pain clinic for further help on my pain.  However, my surgeon did NOT see it fit to be seen in the pain clinic.  Apparently being in pain about every day of your life means absolutely nothing to him.  Anyway, we went through MANY hoops and pulled MANY strings and climbed many ropes to get as far as we did.  We finally got ahold of my genetics doctor and she was able to not only refer me to the pain clinic, but explain to my surgeon that his definition of "not needing pain clinic" was ridiculous for a patient with Ehlers Danlos.

On June 1st I went to the pain clinic for my appointment.  I was prepared for just about anything.  I had gone to the pain clinic in the past (1999) for the same issue.  The doctor came in and I explained why I was there.  She was absolutely shocked I wasn't in there sooner.  After much discussion (about an hour), they decided to go with an injection that releases medication into my nerves to help my body get back in whack basically.  The issue was my right foot was a lot cooler than my left.  My nervous system was getting confused.  I know that sounds ridiculous, but that's the truth. 

The injection is done with a long needle (about 6 inches) and they insert it.  You are numbed, but awake the whole time (not a good idea for me who tenses up easily) and then they insert contrast to view by an x-ray and then they inject the medication.  You are sent to recovery and they just watch you a little bit.  Within minutes my right foot temperature went back up to normal and I felt great.  I was a little sore from the injection, but good otherwise.

I am now 1 day past injection and I am feeling fairly well.  I'm still a smidge sore at the injection site, but other than that I feel great.  I do go back in 2 weeks for another injection and our goal is to spread them out until this is no longer an issue.
They also upped my Gabapentin medication to a total of 900 mg 3 times a day.  I will start at 300, go up 1/2 tab (600 mg tabs) every week until I hit 900.  It's supposed to be helpful so we shall see.  I just pray this all works out because for once in my life I'd like to be a normal mother, friend, wife and daughter so I'm not always missing out on fun things due to pain.

Wow, that was long, but there's an update.  Until next time my friends.........remember, Carpe Diem!!!