Chronic Pain Sucks

I was on Reddit today reading through my front page links. I have several health-related subreddits on my front page including r/chronicpain and r/fibro. r/fibro more because those folks can relate to the type of chronic pain I have to deal with. Oh yeah. In case you didn't know... I have a nasty neurological disorder called Trigeminal Neuralgia.

What is this Trigeminal Neuralgia, you say? Here's a snippet from Wikipedia: 
Trigeminal neuralgia (TN), tic douloureux (also known as prosopalgia, the Suicide Disease or Fothergill's disease) is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. It has been described as among the most painful conditions known. It is estimated that 1 in 15,000 people suffer from TN, although the actual figure may be significantly higher due to frequent misdiagnosis. In a majority of cases, TN symptoms begin appearing after the age of 50, although there have been cases with patients being as young as three years of age. It is more common in females than males.

We think it might be from falling down the stairs as a kid. I've never been very graceful, and my larger than average feet played a roll in that ill-fated stair incident. Another idea is nerve damage from being in multiple vehicle accidents. I mean, I had two in one month last year. MANY MRI's (with contrast, without), neurologists (I've been seeing them my whole life), and life changes later... we still don't know what's causing it.

Surgery is available, but the success rate is not favorable enough for me to consider that option. My neurologist (who's freaking AWESOME, BTW) and GP (who's wife has this awful condition as well) both agree that treating with alternative methods are the best option.

The rotation of fun starts when I wake up. I get a few blissful minutes of no pain. I guess my brain isn't all the way awake then? I pop a 50mg Lyrica, 10/650 Vicodin (I hit the pain as soon as I wake up), and half a 25mg Promethazine (for nausea). TN is not responsive to opiates, so the Vicodin supposedly makes  me high enough to not care. I'm pretty high from the Lyrica (atypical reaction) already, and can honestly say the Vicodin DOES help the pain... even if it only brings it down from an 8 to a 7. I take Cymbalta around 5pm for my really bad anxiety and mild depression most likely associated with my A.D.D. and another one or two Vicodin throughout the day. I take another 50mg Lyrica at night. There is another tool in my arsenal, but it would get me labeled as a criminal... instead of a patient trying to relieve excruciating pain.

Every day is a struggle. I can't eat certain hard foods (kettle chips), so I stick to soft foods only. Hard foods, or even the wrong kind of crunch will set the TN off into a flare-up of epic proportions. I have to mind the way I turn my head, smile, wink, make goofy faces, talk, sit... you name it. All of this to make sure I don't inadvertently make my day miserable.

I can't find a job. I lost my job with Comcast because I was not willing to change my four ten-hour shifts to five eight-hour shifts. When you have zillions of doctors appointments, that extra day off means a lot. It's also an extra day of not talking, not being stressed out, and not worrying about outside forces setting things off. Working "tens" was a godsend for almost six years. I still don't know why it was vitally important for me to change my schedule.

So here I sit. Spilling my problems to my former customers, and new readers who wanted to see a chronic pain blog. I'm going to tag these posts as PAIN, so they'll be easily identified so folks who don't want to hear me whine can pass by these posts.

I'm lucky to have you all by my side, and am thankful for meeting each and every one of you. You make each day a little more bearable.


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