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Not sure how much more I can take

ParkieBaby35PParkieBaby35 Posts: 3
edited 07/26/2015 - 10:27 PM in Pain Medications
I am 35. I was diagnosed with Young Onset Parkinson's Disease when I was 32. This disease comes with it's own symptoms that include pain from rigidity, the dystonic cramping (when 2 opposing muscles get a charlie horse at the same time and contorts the limb, foot, neck, torso, etc.), constantly shaking (tremors), stooped posture (which is the spine actually changing shape, not just from not sitting up straight). To add to that, I've had 4 abdominal surgeries, 3 bulging discs, sacroiliac dysfunction, and osteoarthritis in my right hip. I am in a constant state of pain.

Most of it I can tolerate. like the stiffness and even the shooting pains that literally stop me in my tracks. I breath through the pain. I alternate ice and hear. I have lost 96 lbs since December, I go to the gym 3 times a week with a personal trainer and go to physical therapy every two weeks. I wish I could go more but my insurance only allows 35 visits a year.

I take a bunch of medications for my Parkinson's, stack tylenol and advil, klonopin for the dystonic cramping, but no actual pain medications. There are a couple of days a week that I am in so much pain that I can't get out of bed or off the couch, or sleep. On these days, I wonder if suicide would be a better option. And, NO, I am not depressed, generally speaking. I am hurting just that bad. I have tried every non-narcotic under the sun and just about every anti-depressant (lyrica, cymbalta, lexapro, etc, etc, etc) ever made. The anti-depressants and I do not get along. I've had side effects from severe nausea, to uncontrollable fits of anger, to suicidal ideation (the kind where you mean it).

My previous doctors reason for not prescribing narcotic pain medication was because of my age. I fall into the "age of abuse" risk category. Whatever that means. When it comes to narcotics, I found out the hard way with my surgeries, that I am allergic to all but 2 narcotic pain medications, oxycodone and dilaudid. I am going to a pain management doctor that my doc refered me to soon to assess my medication needs. That is good, but the crap side is that I have to pay $300 up front for the first appointment and then they will take my insurance and just pay co-pays for my subsequent appointments. Every pain management place within 100 miles of me does this, I know, I called.

I feel like I am being taken advantage of because I am in pain and I need some relief. The sad thing is, is that I don't want to be prescribed a bunch of pills to take a bunch of times a day. I just want enough to get me through those super bad days when my other pain management techniques aren't working. I'm sorry for the long post, I guess that I just wanted to vent and see if anyone else has been through something similar.
Shallon A. Hardman


  • LizLiz Posts: 7,832
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    Spinal stenosis since 1995
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  • Pain management seems to be the new order of our times. I don't see that changing and it is probably going to become more prevalent. The division seems to be anything longer than 6 to 8 weeks of opiates and any dosing greater than a single 10mg Oxycodone. You should probably just role with it.

    I was skeptical of pain management myself. I had always thought of them as seedy pill factories. But if you find a professional practice I suspect that you will be pleasantly surprised to learn that they are highly educated and on the forefront of medicine. These are the guys that are turning the tide on treating chronic pain with narcotics and for extending post surgery pain treatment. My neighbor slept in a chair for six months after shoulder surgery, I slept in a chair for one day.

    I found my doctor to be extremely knowledgeable and for it to be the only place outside of a psychiatry office to take the time to listen to what I had to say. They spend far more time talking to me than any of the other doctors and still do with each visit. It might be exactly what you're looking for.

    Best wishes
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