On Pain Management

Well, I went to the pain management doctor yesterday. It was an interesting experience. First one doctor comes in, a "Fellow" in pain management and takes my history. He knew what EDS was and knew that it caused disc degeneration, but was surprised that I had so much disc degeneration without sustaining any falls or accidents. I'm surprised that he's surprised; or should I be alarmed? concerned? surprised that I have progressed or degenerated that quickly? He begins asking me about meds I have or have not tried. I was ready! I had made a list of EVERYTHING that I had EVER tried just so they knew that I had exhausted every possible means of therapy before pursuing this path. Again, he was surprised, but also glad that I was so prepared and knowledgeable of my medical history. It really does make it a lot easier for both them and me because it cuts down on redundancy and they see you me different eyes. They see me as a knowledgeable person who is in control of my medical condition, or at least as an active participant in its management. I would recommend this to anyone who needs to seek a second opinion on a particular situation: write down any medications you have tried, if you experienced side effects, if it was helpful or not, and any complimentary treatment you have received and if it was helpful or not; also think of anything that makes your condition better or worse. This will cut down on time and, again, the doctor's will look at you in a different light; you will have the upper hand.

Anyhow, the doctor came back with reinforcements, the treating physician, after all they are usually dealing with narcotics and this is the doctor that signs away his license, and another "Fellow". Not a good sign. The treating physician was knowledgeable in EDS and explained that they generally do not like to use narcotics in EDS because pain is generally chronic and tends to increase necessitating the need for a increase in medication. Furthermore, my history to sensitivity to opioids made it hard to treat and indicated that what LITTLE options were available should be reserved for the event of a serious injury or future surgeries when they would really be needed (i.e. Dilaudid and Fentanyl). He knew that I had exhausted non-narcotic treatment options such as Neurontin, Cymbalta, Lyrica and could not take Naproxen and anther NSAID's. It boiled right down to: THERE ARE NO MEDS WE CAN GIVE YOU. My heart sank...I would have to live with this every single day...on a good day a pain level of 5...on a bad day 8...and on a really bad day wanting to go to the hospital. Bear in mind I'm not talking about migraines, this is just EDS pain.

 However, he suggested that I use of a TENS unit, and explained that the electrical stimulation offered the same pain relief as an Oxycodone. I could use it as much as I needed and anywhere I needed. He also stated that they could do trigger point injections on an as needed basis. He offered to do them that day because he could feel how tense the muscle was. I told him, that was at a pain level of 5 so it was pretty bearable at that point. Since they can only do these injections about every 3 months, and for me, they only last about 1 week, I would wait until an 8 or above (i.e. hospital level).

Yesterday I also had an upper GI with barium and confirmed that I do have a hiatal hernia and reflux. I knew about the reflux, no surprise there. But the hernia was confirmed. Well, besides the Prednisone weight, which thankfully is slowly starting to come off, the hernia explains the bloating in my upper stomach. Anything I eat or drink gets stuck in the esophagus and is slow to pass through into the stomach. Plus it is refluxed and well....you have a perfect bloat! As I was doing the test the Radiologist Doctor said the little bits of barium the had me drink were being refluxed immediately. I wasn't even feeling that, but he could see it! YUCK!

Well, yesterday was a day of conflicting emotions. I was happy the hernia was confirmed. It's and easy fix that's taken care of in the same acid reflux surgery. I was also happy that there was an explanation for this bloating and stomach distention! I knew it wasn't my eating, any little thing I ate or drank, made me puff up and I could hardly breathe, so I knew it had to be something else. I felt relieved that once I have the surgery I'd be able to breathe normally after drinking a cup of water and the bloat would fix itself.

Then, after the pain management visit, I was left almost numb becuase I didn't want to consider all the implications of what they had just told me. But, once I processed them, I'm left worried and disappointed, but I guess I got something out of it. I'm worried about what I'll be able to take for the pain after the surgery. It's not spine surgery, but it's going to be uncomfortable (to say the least) and Tylenol just isn't going to cut it. The TENS unit is great, so it made the visit worth it. But, I just don't feel comfort that there isn't really a medicine out there for me if there is more severe and generalized degeneration; was that doctor surprised about my degeneration so far? The Rheumy is going to have me start Celebrex for inflammation after I'm healed from the surgery, but it takes a month or so to kick in. He's also thinking that prednisone will be the only option for me. I guess in a way that constitutes pain management....does it? should it be something to pursue this early, or when I'm in a constant level 8 pain?

As always in faith...I'm listening for answers to my questions, to being led to right decision for me. Sometimes answers come in the form of feeling at peace with the decision we make.