I posted awhile back about the pain I've been having for the past year and a half or so. It goes from numbness in my pinky and ring finger, wrist pain, to forearm pain, outer elbow pain, shoulder pain (which is unrelenting and just never stops) and neck pain and spasms. I even get occipital headaches and jaw pain on really bad days.
I've had every test on in the book done and tried so many meds, I can't even remember them all. All the tests have been done on my cervical spine and/or shoulder, including multiple MRI's, Nuclear bone scan and nerve conduction testing. All came back negative although I do have mild spondylosis of the C5-C6, C6-C7 area with mild disc bulging. I've been seeing my primary care doctor about this the entire time and she's out of ideas. She just finally wrote me a presciption for oxycodone which I started in December.
I've also seen a couple of orthopedic doctors and the neurologist that did the nerve conduction testing. When they couldn't find anything they told me to find a good pain center. I went to two, and was unhappy with both of them. One of them told me to "find my happy place". That's really hard to do when your shoulder feels like it's on fire and you are having extremely painful neck spasms.
Anyhow, I started realizing that my shoulder pain seems to act up at the same time that I have wrist pain. And then I wondered if maybe the pain was coming from my wrist or arm rather than coming from my c-spine area like everyone has always assumed. I found cubital tunnel syndrome by researching online (like carpal tunnel but a different area of the hand or wrist). I was reading that people can have double crush syndrome where multiple areas of their ulnar nerve can be injured and it can lead to shoulder and neck pain.
I found a new orthopedic doctor that specializes in hands and wrists and he did a few range of motion type tests in the office and from that told me he agreed with me and now I have another neurologist appt on 6/24/11 for more nerve testing. He told me that persistance pays off and that by continuing to be my advocate and doing my home work will pay off and that physicians just telling me go to a pain center at this point in the game is ridiculous. He is the first doctor I've seen through all of this (besides my primary care doctor) who beleived me and was supportive of me...and who seemed to have a brain and know how to use it. And the best thing he said to me is that my body is the best indicator that I am having nerve problems..no matter what testing shows. He really seemed to be on my side and I sense he really wanted to help me. What a change from the other doctors!!
Anyhow, I went back to my PCP to tell her this. I was really excited. I also needed to talk to her about my meds. They've put me on oxycodone 10mg, 3X daily and klonopin. She wrote my last script for klonopin as follows: Take .5mg to 1mg (I had 1 mg pills) every 12 hours. I found out that if I take .5mg in three divided doses at the same time as the oxycodone I could get better pain relief. I told her this at my last appt and she told me no problem. She told me I still had to see her every couple of months for the written script of oxycodone but the klonopin was able to be refilled as I needed it and it was no problem.
Now, here comes the fun part. The pharmacy would only give me 30 pills at a time. If I was taking two pills per day (which was an option since the script was written this way) I would be done with the meds in 15 days. Using 1.5 pills a day like I do, gave me 20 days. I was thru those last week. I started calling my doctors medical assistant on Wednesday so there would be plenty of time to get it filled in time for the weekend. I called Thursday and Friday as well. No return calls and the pharmacy kept telling me they couldn't fill it until 6/23/11. That would mean three weeks without the pills. So that's like two weeks on and two weeks off and means my pain gets better for those two weeks and then I'm back in hell for two weeks.
This has happened before and I've ended up in the ER or urgent care. This time I decided to call my PCP's office and speak to the on call doctor. It was another doctor that took my call (not my PCP). I appologized profusely for bothering him on the weekend and explained the situation and he told me no problem, he'd fill them and to give him 20 minutes. I kept appologizing and he told me "Don't worry, this is my job". He also told me that since the medical assistant was NOT doing her job, I needed to come down there to the office in person on Monday and give them a piece of my mind. This suprised me, since this doctor works with my PCP every day.
Instead of doing that, I set up an appt for the following Tuesday with my PCP to discuss it with her and also to tell her that I may have finally found the cause of my pain (the ulnar nerve issues) and to discuss why I am having difficulty with my refills. The first thing she did was shoot down my idea of ulnar problems. She told me that since I've already had nerve conduction testing it was a waste of time to try it again. I told her my personal feeling on it was that the last neurologist was looking at the wrong area and was also a fairly new neurologist and the neurologist that will be looking at me on 6/24/11 was a different one and had been doing this for a long while and specialized in hand and wrist pain. And if I'm not mistaken aren't there such things as false negatives?
Then came the really good part. She told me I never informed her I was taking .5mg of klonopin three times a day and so I had increased my usage and basically called me an addict. I took the empty pill bottle out and showed her...she'd actually written the script for MORE than I take and I also told her that I'd been very clear with her about exactly how much i take and when I take it. (This same thing happened when I went from 5mgs to 10mgs oxycodone). She told me that one of her patients had just been sent to rehab for smoking klonopin and she knows it "feels good" but I can't just keep upping the dose. She was very short with me, told me I needed to sign a drug contract and left the room, leaving the medical assistant to prepare the document and have me sign it. I signed it, since I have nothing to hide and they wrote it up with the current amounts I am taking. I also made sure they made me a copy.
I'm just really hurt though. How do doctors get off on treating their patients like that? I waited for about 8 months in excruciating pain before I even asked for something stronger...and when I finally seemed to get the combination right and I'm starting to feel better and can get off the couch and go to work, I get treated like a drug addict.
And by the way, I did some research on why Klonopin helps and I was reading that it helps slow down the firing of your nerves and relaxes your nervous system. So I guess it makes sense that it would be so helpful in addition to pain medication when I'm having nerve related problems.
I just feel really hurt and depressed and lost about this. I guess I need to find a new PCP, but I know it's dangerous ground since I signed this drug contract. I have an appt with a naturopathic doctor on Friday who I was going to maybe start seeing as a PCP. I'm thinking if I take my pills, the drug contract and everything and tell him everything that is going on that it should be ok. I don't know. I don't expect him to prescribe for me, but it would be nice to have a PCP that listens when I talk on occasion.
I'll know more after my next round of nerve testing..but until them..I'm kinda stuck. I've also been thinking about continuing to look for a better pain center..one that might consider me a candidate for other things..like possible injections etc. And one that is more informed on medication and their usages. I feel like I kinda know more than my current PCP on a lot of these issues. If this level of pain continues and they continue to not find a cause..wouldn't it be better to be part of a pain center? One that is compassionate? I'd also really like someone to discuss with me the slow release meds vs. the quick release one's I'm taking now..possible nerve root injections or denervations/ablations. At this point, I'd also like to talk to a pain psychologist..because I'm starting to get so depressed that some days I just want to cry and cry and never stop.
Anyhow, sorry this is so long...just a lot going on. If you made it all the way through..thanks for listening to my gripes.