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Thread: Another bad pain day

  1. #1
    Senior Member TD's Avatar
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    Another bad pain day

    For over six years I have suffered in relative silence on this issue and today I cannot deal with it. I am going to describe this pain and would like to know how many others feel the same way. Does the latest interview with my neurologist sound familiar? It lasted less than 15 minutes, I was billed $175.00, and nothing was resolved.

    DESCRIBE YOUR PAIN

    The next time your hand goes to sleep take a spoon and rap on your knuckles. That is how my body feels below my highest level of injury with every twitch, spasms, and heartbeat.

    WHAT MEDICATIONS ARE YOU CURRENTLY TAKING FOR YOUR PAIN?

    Neurontin 1200 mg/day and ultram 400 mg/day. I tried taking higher doses of neurontin but it made me so groggy I kept running into the wall with my power chair.

    HAVE YOU TAKEN ANYTHING THAT HAS RELIEVED YOUR PAIN?

    The neurontin helped at first but after a while it seems to have lost its effectiveness. I take the Ultram because it takes enough of the edge off the pain so I am not curled up in a ball, screaming with pain and lately even that isn't helping.

    IS THERE ANYTHING I CAN PRESCRIBE TO HELP RELIEVE YOUR PAIN?

    The only thing I have tried that seems to help, you can't prescibe. (This earned me a glaring stare. BFD!)

    WHAT ARE YOU DOING NOW TO ALLEVIATE YOUR PAIN?

    Other than taking the neurontin and ultram, I am using what I call "diversion therapy". When the pain is so bad I can't take it I watch TV, play video games, or cribbage on the computer. Anything so I don't focus on the burning, throbbing pain.

    THAT HELPS?

    Only for a little while. Eventually the pain gets so intense I crawl into bed and try to go to sleep.

    ARE YOU ABLE TO SLEEP AT NIGHT?

    I take hydrocodone and a sleep aid to get to sleep. I doubt I could get to sleep without them.

    HAVE YOU EVER TRIED?

    Yes. I could doze but I never got much rest.

    WELL, THERE ISN'T MUCH MORE I CAN DO. YOU HAVE TRIED ABOUT EVERYTHING I CAN THINK OF.

    Please let me know if you think of something. I can't function like this.

    END OF INTERVIEW. THE NEUROLOGIST HANDED ME THE BILLING FORM THEN LEFT.

    I suppose I am just having a bad day today and need to get this out. :O I have been reluctant to take any sort of narcotic because I don't want to become addicted to anything.

    "And so it begins."

  2. #2
    TD,

    I am truly sorry to hear of your suffering. Your neurologist may well be right; I wouldn't be at all aurprised if he can't do much more for you right now. I wish I had more answers, but I don't. So then what, move to somewhere that you can legally use the one thing that brings relief? That's rarely an option, though I know I might be tempted to find a way to make it happen.

    Years ago I seriously considered going to medical school. I had people strongly encouraging me, and I have a love for medicine. So what stopped me? I knew enough about the ordeal that you have to endure to survive an internship and residency that I knew that there were only slim odds that my family would survive intact. Divorce is *very* common, and many other marriages take many years to heal.

    Every few years or so I read a book about some doctor's experience with that part of his training, to reassure myself that I made the right decision. I just finished one by a man who became a neurosurgeon. He enjoyed neurosurgery, but he hated the idea of practicing neurology, because in neurosurgery you can often do something to help a patient, but a neurologist sees a lot of people that he can scarcely do a thing to help; people with MS, chronic pain, and any number of neurological conditions.

    Brain science has a long ways to go. We need to invest a lot more in research to advance this field.

    I don't have much more to offer that is of much practical use to you. I manage my PainOnline website in part to help offer a little better understanding of what's going on with people that have central pain (and I have no idea if that's what you have going on or not). I feel like we need to share knowledge about this problem if we're ever going to beat it. I also work hard to advocate for more funding for pain research.

    I do participate in a email list that is a great support network for people with central pain, so you might want to check it out. Mary Simpson, a stroke survivor, manages the list from her Central Pain Syndrome Alliance webpage. You can sign up from her page, or just send her an email and ask to join. I really don't feel qualified to offer any specific medical advice, but Mary does have a list she has compiled of treatments that have helped other people with their pain, whether it's from central pain or some other type of pain.

    Take care, I wish you well.

    David Berg

  3. #3
    Senior Member alan's Avatar
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    bad pain day

    There's such a thing as a good pain day? I've never had one. Well, that's not exactly true - after my fusion, when I was shot up with demerol, I had no pain. Also a messed up brain. That was my only good pain day since they started a month after my accident.

  4. #4
    Senior Member TD's Avatar
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    WHAT'S A GOOD PAIN DAY?

    A "good" pain day is when the pain is under control, say, a 4 or 5. "Bad" pain days register on a 9, 10, 11, and higher!!! Lately, the bad pain days are more prevalent than good ones.

    "And so it begins."

  5. #5
    Senior Member alan's Avatar
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    bad pain day

    My worst pain areas (abdomen and upper back) are now at level 10, other areas are 8, and never is there any relief. I don't cry, but I do complain.

    I don't sleep at all ( how is someone supposed to sleep when their body is on fire?), and the nights are looong. Most of my suicidal thoughts occur during those long nights when I'm lying awake wondering what I did to deserve this hell.

  6. #6
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    Another bad pain day

    TD,

    This might sound strange, but I'm sort of relieved to find I'm not the only one with such pain.

    24/7, non-stop. It's in my right arm which is paralysed as result of a motorcycle accident.

    Neurontin made me whoozy and I stopped using it as it didn't help at all.

    Now I just have to grin and bear it.

    Seems there's not much the medical fraternity can do re Spinal Cord Injury pain.

    You're welcome to contact me: apaume@mweb.co.za

    Anybody else with SCI pain problems as well.

    Danie Palm

    Disability is not inability, but a challenge

  7. #7

    Pain days and nights

    As a caregiver and a mom, I watch my daugher deal with sci pain on a daily basis, so my pain is different, I know. I was interested to read that TD didn't want to take narcotics because of addiction. Here's the flip side: my daugher takes oxycontin which is a narcotic that she is undoubtedly addicted to--physically. Her body needs the drug. But she can function, she can sleep, and she progresses a bit every day. She thinks the trade-off is worth it. This drug has been a wonder drug for her! She is gradually weaning herself off it [from 300 mg daily in June to 100 mg daily currently] so the psychological addiction is not evident or a problem for her. Just some observations, but as always...to each his own....Vick

  8. #8
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    I should be against the law for a doctor to charge you for that type of appointment.

    What if I went to a automechanic for a brake problem, and he looked at but couldn't find the problem and then charged me a $100.00! We all raise hell--yet everyday us SCI pain suffers do it. I have been so mad at these type appointment I have verged on...

    EM

  9. #9
    I agree wholeheartedly about doctors who charge such fees when they openly admit that they can't help at all. I've heard that in at least one ancient society the doctors were paid so long as the patients stayed well, and when they got sick, the pay stopped until they regained their health.

    Even worse than the type of appointment that you describe, I've heard from others who've been to a pain clinic (and I need to state up front, not all pain clinics are like this at all!!) where they are charged literally thousands of dollars and receive no help at all. In fact, sometimes the end result is that they wind up seeing a psychiatrist who tries to tell them the pain is all in their imagination. In my opinion, this is criminal. The same goes for doctors who take out their anger at patients who don't respond to the doctors favorite treatment.

    We need to be our own advocate.
    David Berg

  10. #10
    Senior Member alan's Avatar
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    The last doctor I checked with told me over the phone that he had nothing to offer. Much better than making me come in (if the pain level lets me) just to tell me that.

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