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Thread: Burning, Pins and Needles even with using Neurontin, Oxycodone, Methadone

  1. #1
    Member derek's Avatar
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    Burning, Pins and Needles even with using Neurontin, Oxycodone, Methadone

    Hi. I am a paraplegic T6/7 since Nov of 2007 with no movement or sensation below the waist.

    I currently use the following pain medicines at these times:

    Neurontin at 8am (800mg), 12pm (800mg) and 8pm (800mg)
    Oxycodone at 10am (10mg), 3pm (15mg) and 6pm (10mg)
    Methadone at 2am (7.5mg), 8am (5mg), 2pm (7.5mg) and 8pm (5mg)

    I've been using these 3 medicines for about 1 year now. They worked great for pain relief early on but have slowly lost effectiveness to where they don't do too much right now. My pain doctors are currently changing the dosage amounts and dosage times a little at a time to try and figure out what works best.

    Here is the pain I feel. When I wake up in the middle of the night and during the first hour after waking up in the morning, as soon as I move my legs I start to have burning pain (level 8 or 9). Throughout the day I have episodes of very bad pins and needles and some burning mostly when I sit for long periods of time. Lying down alleviates this to some degree. From about dinner time to bedtime, the pins and needles and burning increases gradually until I go to bed. At that time its probably a 6 or 7. It doesn't affect my sleep, only if I wake up.

    Does any one experience this type of pain at these times of day? Any idea on what pain medicine changes might work better? My doctors are thinking about trying Elavil soon. And then there is the pain pump if things continue to get bad.

    Thanks for any help.

    Derek

  2. #2
    Hi Derek,
    Sorry you are going through all this. I can share with you some of my thoughts on the matter as I have struggled with neuropathic burning and stabbing pain for the past 7 years. I am a burst L1 fracture, with a cauda equina injury and I am incomplete. Pain management has been the biggest hurdle for me over this time period.
    Here is a few things that come to mind:
    1. You have room to increase your neurontin dose. You are taking 2400mg daily and I know that you can go up on that med as long as you are managing the side effects. Your post didn't mention side effects from any of the 3 agents you are on.
    2. You could have the pain specialist see if Lyrica works better than Neurontin. It did for me and I could handle the side effects better too. After 2 weeks on it , I didn't have the 'spacey-ness' feeling.
    3. From everything I have read and experienced, Elavil is a 'no brainer', proven aid to decrease the firing of the neuropathic pain fibers. It works in conjunction with Neurontin or Lyrica and at low doses like 25 mg at bedtime is well tolerated by most ( not by all, of course). I take Elavil 25 mg at 9pm. One beneficial side effect is sleepiness so a nighttime dose works well.
    4. There is a odd paradoxical effect of taking narcotics long term where the pain experience is actually increased. This happened to me while on Methadone and it has been discussed a bit on this forum. I got off the narcs and to my surprise, the pain got somewhat better. Amazing and confounding, I know. Should I increase narcs or decrease narcs? Not always an easy question to answer.
    5. If you have committed to long acting narcotics like Methadone, I don't see the logic of taking oxycodone on a routine basis. Why not increase the methadone and just use the oxycodone for 'break through' pain occasionally. The concept of long acting narcotic use is to take the pill just like you would take a vitamin, without the emotion of thinking about pain all day.
    6. I would start reading about chronic pain management including all the non-drug management techniques. Meditation, relaxation, distraction techniques, massage, psychotherapy, etc. You know, you may be in this struggle for many years to come. The more you know about it, the better you can manage it.
    7. Antidepressants - It is depressing to have chronic pain, are you addressing this? How are you holding up? Psychotherapy (counseling) and / or antidepressants can possibly be of help. Cymbalta is an antidepressant that has some specificity for neuropathic pain.
    8. I have to add that when I was most exasperated by the whole thing, I found a biofeedback practitioner who had experience with chronic pain. I benefitted tremendously from my sessions with him. Part of the benefit was the realization that the suffering is partly under one's cognitive control. It demonstrated how the brain's response to pain was what was causing the distress and this can be partially controlled through education, biofeedback, relaxation.
    9. Don't give up, try different regimes. Keep a pain diary. Figure out what activities worsen the burning and what helps.
    10. Get 8 hours of sleep... it seems to help.
    I guess that is enough rambling for now. Good luck !

  3. #3
    Good advice Arndog. I've had to try different meds to get to the right comination. They finally have me on 600mg of gabapentin 4x's a day, plus 60mg of cymbalta 1x' a day, and tramadol 50mg 3x's a day.

    I can't say it's solved all the problems, but at least it's better, and he might change dosage when I see the new neurologist for the second time.

  4. #4
    Derek,
    I forgot to add #11 which was very important for me.
    11. Aerobic exercise. Pre-SCI I was a climber, skier, cyclist, ski mountaineer and I found that I needed to exercise to increase my own natural endorphins which help with pain control. One struggle was that sometimes the exercise would exacerbate the pain and it was a bit of a catch 22. But I NEED to exercise for pain control.
    I can relate also to the fact the pain crescendos as the day wears on. Often by 6pm, I was cooked, and had to retreat to bed. Maybe that would be a good time to take breakthrough oxycodone.

  5. #5
    Member derek's Avatar
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    What I am getting out of all of this is basically the following:

    1) work with my pain doctors to find the right medicine combination to
    alleviate the pain the best they can.

    2) once it has been alleviated to tolerable levels (like 2 or 3), learn how to
    manage my pain in order to continue with life the best I can.

    Right?

    The pain for me right now is just so unbearable at times, levels betwen 2 and
    8 or 9, that it's difficult to make it through the days. I only hope the doctors
    and I can come up with something soon to alleviate this.

    Thank you for all your input.

    Derek

  6. #6
    Derek - Your summary sounds right. It is very difficult. I found the difficult part to be the exhaustion of dealing with pain every day and also the isolation that I experienced from my friends and families as I 'battled' this thing - chronic pain that took residence in my mind. It robs you of your time and you become very familiar with your bedroom ceiling as you stare at it.
    Good luck and please let us know what you find is helpful - sharing what works helps us all and was the main reason I like this forum.

  7. #7
    Member derek's Avatar
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    Thank you arndog for your responses. I certainly will post anything that helps me through this. Thank you to all for your support!

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