18 years I’ve waited for this. I finally know what’s wrong with my back.

In my previous post I talked about taking my son for his WiC appointment, then hurting my back on Friday.

Well yesterday, I went to see the doctor. My doctor has left the practice for better prospects, and so I saw the guy who’s taken on his patients. I like this guy.

For 18 years I’ve been suffering from chronic back pain, and I never knew why or what it was. No doctor that I’ve told has bothered to take me seriously. Claims of back pain are a common tactic for scoring pain killers. Up until I turned 18, I was told it was just “growing pains”. After I turned 18, people have accused me of lying to get drugs or exaggerating my symptoms and it wasn’t that bad. It turns out, it IS that bad.

Two years ago, I fell down the stairs in my old apartment. I hit all 14 steps on the way down with my back and slammed both back and butt all the way down. Within 2 weeks of that happening, I fell down 2 more times (but in each case it was only half the staircase). I went to the ER, they straight up said I was lyin, didn’t even do x-rays or nothin, sent me home with a small 2 week supply of pain meds. I followed up with a doctor a few days later, who saw it merely as a pain management issue due to my recent (at the time) injuries, and didn’t even consider that the injuries may have aggravated an older condition.

Well, my new doctor was pissed when I recounted my 18 years of agony. I explained to him that no doctor had ever taken me seriously about my back pain, and when he asked if I’d ever had an x-ray done on it… He got even more pissed when I told him nobody wanted to do one, even just to put me at ease.

Needless to say that yesterday, I got my x-rays done. He examined my back thoroughly, and asked what I’ve done job-wise in my lifetime. He asked me about my home life growing up (because this issue started long before I joined the work force, after all I was only 12 the first time my back started to give me trouble.) He asked if I’d ever been active in sports during school. What my homework loads were like back then (because of all the books i might have had to carry.) Long story short, he asked me questions, he took the time to listen to me and my case, and then he set about to helping me start dealing with it.

My diagnosis at this time is Degenerative Bone Disease, which is lumped in typically with Osteoarthritis in the Spine, or Spinal Osteoarthritis. Mine doesn’t just affect the disk, and the cartilage, but also the bone itself. After going over my family medical history as well, my doctor believes I was genetically predisposed to this due to my maternal grandmother having developed it as well. Bone density tests are looming in my future. As is an MRI, that’s for certain. This could at some point, have me confined to a wheel chair either partially or permanently depending on how this disease develops in the future. Right now, my doctor has me on pain management meds, to try and fight the inflammation enough for me to be able to function, but also to help shake loose the bits of my L5 that are pressing against my sciatic nerve and causing further damage to my knees via that as well. (This further explains the mysterious onset of my knee issues that I developed late spring 2015.) I’m only 29, and this condition is usually seen in individuals closer to 40 and 50 or older. The rapid deterioration in my L5 is a result of an untreated tailbone injury (the L5 is the last vertebra before your tailbone) 2 years ago. Had it not been for the fall, my doctor says I likely wouldn’t start showing such severe symptoms as I am now until around 35-40.

He gave me a steroid shot to help with the inflammation as well, but I’m unsure if it’ll work. I’m hoping that it does, because it means I’d need to go in and get a shot whenever I have a bad pain flare, but not have to worry about surgery or a saddle block. (Really don’t want a saddle block.)

Though plus side – this will help me with my disability case because doctor’s orders – I can’t lift anything more than 20lbs (he stressed the less weight under 20 the better, but 20 as an absolute max) pretty much the rest of my life so… that’s fun. I’m looking into back braces though, in the event that I need one at some point. It wouldn’t hurt to have one anyway for doing house work and stuff like that. Or for when I’m having to deal with the child by myself and may HAVE to lift him up (though I’ll remember to always lift from the knees!)

I’m just so glad to finally know what’s wrong with me. Finally have an answer that’s eluded me for 18 years. It sucks, knowing what it is now, and knowing what potential scenarios lie ahead both with and without the treatment, and even then the best case and worst case scenarios of each. But I feel positively vindicated now. Because I’m not delusional, it’s not all in my head. I’m not lying. It’s not psychosomatic, it’s REAL. It’s tangible. It’s got a name.

Plus side? Once I’m on disability or if I can get my doc to swing the paperwork for me, I can now finally apply for and receive a disability hangar for my car so I can get one of those fancy parking spaces at the store. And while I’m too proud to admit it, and too stubborn to accept the fact that now, I realistically can’t do much for actual working, I’ll need to finally get around to doing that disability SSI paperwork to ensure my continued financial stability. But at least I can say now that I put it off for as long as I could, and have done everything I can to try and avoid it. I want to work for my money, damn it. But, life takes funny turns sometimes.

I certainly didn’t expect to damn near cripple myself Friday just for picking up my son. And now I’m sad again. So I’ll leave on this mostly positive note.

If you or anyone you love suffer from chronic pain, and have been dismissed and rebuffed by doctors for it, you’re not alone. It’s taken me 18 years of fighting with doctors and specialists, trying to get the proof I needed to show I wasn’t lazy, and that there was truly something wrong with me. But it doesn’t have to be so long a wait. You fight for your diagnosis, and you don’t stop until a doctor finally listens to you. Don’t you dare stop fighting for it until you finally get those scans, and those tests. For some people, even with the tests and the right doctors it’s difficult to pin down and treat, especially when it’s related to the head and neck. But it doesn’t matter where your pain is, you keep pushing and pushing through the obstacles until someone finally gives in just to shut you up if that’s what it takes.

But never, ever stop fighting for your diagnosis. The earlier that you can get it, the easier it will be to treat your condition, or even prevent complications later down the line. I can’t say that I was that lucky, but I’ve just spent the majority of my life, not just my adult life, but my entire life, suffering from a condition I didn’t even know for sure I had until yesterday.

It doesn’t have to be this way for you.

Keep fighting!

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3 responses to “18 years I’ve waited for this. I finally know what’s wrong with my back.

    • Thanks. I’m just relieved to finally have a name to put to my back problems. And know there’s more to it than just muscle spasms or a strained muscle.

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  1. Pingback: Atlanta Vacation: Day 2 | Ravings of a Madman

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