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Thread: Neuropathic pains, Medication advice.

  1. #1
    Senior Member SuprSi's Avatar
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    Neuropathic pains, Medication advice.

    Hi there,

    Where I'm at now: My injury is pretty recent, about 6 months ago now, just got out of rehab before christmas! Doing pretty well so far, getting a car sorted and just ordered my new wheelchair to replace this NHS tank! Going back to college and work soon and looking forward to a bit of normality!

    Ok, so I started getting these pains about a few months into rehab, the best way of describing it is like a really intense pins and needles, or sometimes a stabbing or cramping type pain. It seems worst in the evenings when I'm starting to wind down. It's worse some days than others. What should I expect from these pains? I guess everyone's different, but are they likely to get better/worse? At the moment I can just about push it to the back of my mind, but if it's the fast stabbing type pain I can't hide it and I don't like letting my family/friends see I'm hurting.

    Currently I'm on:
    Pregabalin aka Lyrica 75mg x2 (I understand this is a fairly low dose?)
    Amitriptyline 25mg at night (again fairly low)

    Any thoughts on these? I've seen people have had some problems with the higher dosages of Lyrica so I'm reluctant to put that up too high, and Amitriptyline is a anti-depressant (side effect is calming nerves) so I don't want that messing with my emotions if the dosage is increased by much.

    Since the pain seems to have got steadily worse it's hard to tell if the drugs are actually doing anything, so I might try stopping them for a couple of weeks and see how intense the pain is then to get a benchmark.

    Anyway, any thoughts or ideas will be much appreciated. Cheers!
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

  2. #2
    For the stabbing pains good old opiods are very effective. Oxycodone, methadone are your friends. Welcome to care cure, btw!

  3. #3
    Senior Member SuprSi's Avatar
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    Thanks for the advice and welcome! Are they just to take when it's bad or would I need to take it daily? Have been taking paracetamol when it's been bad but it hasn't helped much if at all.

    Cheers, Si.
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

  4. #4
    Senior Member ~Lin's Avatar
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    I would ask about a narcotic (oxy) when things are bad. You don't have to take those regularly if you don't need them. The lyrica dose is still pretty low if you wanted to increase. You can always go back down if you get side effects.

    I wouldn't keep taking paracetamol if it's not working. While not a strong med, if taken to frequently or too high of a dose it's quite bad for your liver. I only take it for headaches, it doesn't work for any other pain. But even for headaches I like to keep it at a minimim. If you are prescribed a narcotic for breakthrough it might have some paracetamol in it so make sure if it does you aren't taking more on top.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  5. #5
    Quote Originally Posted by SuprSi View Post
    Thanks for the advice and welcome! Are they just to take when it's bad or would I need to take it daily? Have been taking paracetamol when it's been bad but it hasn't helped much if at all.

    Cheers, Si.
    Yeah, tylenol (as we call it here) won't do much at all. As for narcotics you should take as little as necessary, they have unpleasant side effects and everyone is different as to how much and when to take them. I take methadone daily and oxycodone as needed. Pain is a huge variable for people with SCI, I am three years post and still struggling to find a good regimen to control mine.

  6. #6
    Some good news is that there are very nice knowledgable people around here struggling with post SCI neuropathic pain and have a lot of empirical data and personal experiences with different regimes that can help you.

    Some bad news is that the pain won't likely go away. It can get very bad where it is a challenge to get through the day and not get depressed, isolated, resentful, and exasperated from this daily problem.

    I have had this problem for 10 years since my SCI. I took 25 of amitriptyline at night, and Lyrica 75 3 times a day and at one time, up to 150mg 3 times a day as well as oxycodone for breakthrough pain which was on a daily basis. Many people believe Lyrica should be taken 3 times a day due a short half life of 6 hours and it can wear off. I would move to 75 3 times a day to start with. I also use ambien to fall asleep as the burning is intolerable as I lay down and prevents me from sleeping unless I have a medication for sleep.

    I recommend getting sufficient sleep and keep stress down. I would start a meditation practice if you can. There is evidence that this helps. I would use distraction as the main way you can get relief. Including working, music, TV, getting outdoors and doing sports, exercise, driving fast cars, anything to get your mind off the unrelenting burning. I am finding work to be a great distraction.

    I would warn you about the isolation you will feel having an invisible problem that no one without neuropathic pain, including doctors really understands how severe and time occupying this problem really is. It is very isolating and as you said already, you don't want your friends and family to have to hear about it a lot. In a few years, they will tire of it and won't want to hear about it anyway, they will be frustrated at their inability to help you.

    Despite this, neuropathic pain has defined 75% of my waking moments, affected how I see everything. Only in the last 6 months, have I felt marginally well enough to begin a Trial Work Period as a medical consultant for SSDI and I need to be sharp.

    I don't want to sound like a 'Debbie Downer', but do want to be realistic.
    My advice would be not to be stoic, take meds that you have to in order to have a semblance of a life, no one will give you a badge of honor for not taking meds and toughing it out. Also, if this problem persists, day after day, even the strongest of us will get worn down.

    Like t8burst said, he is still trying to come up with a good regimen after 3 years, and I am still trying at 10 years to tweak what I take to avoid side effects and get better relief. I still suffer ever day, if I tried to avoid that, I would be taking meds and be a zombie and not think well.

  7. #7
    Senior Member SuprSi's Avatar
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    Thanks for the replies everyone, it's really helpful to hear from others sharing the same experience. You're definatly not being a debbie downer arndog, that's exactly what I needed to hear. Some great advice in there!

    Looks like I've got a long road ahead of me then, I'll start of with changing the Lyrica to 3x daily and I'll look into meditation. I'll talk to my GP about oxycodone, that sounds pretty helpful if i'm having a bad day, and it looks like I need to get to bed a bit earlier!

    I'll post back soon with how it's going.

    Thanks again,
    Si
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

  8. #8
    Wow Arndog your post says it all for me. Thanks for putting into words exactly what I have been feeling and experaincing the past 5 years.

    I read this forum but do not post very often. Also I am from UK and the whole health system and access to pain management seems very different to how things are organised in the USA. I am not very good at using forums, I never feel have much to contribute, but your post was so resonate of my experience with central NP I just had log on to post my thanks. I am sure that I am not alone in finding your sharing so spot on!


    I so agree about splitting the Lyrica dose, my pain management consultant has at last listened to me about this, she used in insist on 300mg in am and pm rather than dividing it over 3 doses which I find much better. I also take oxycontin extended and oxynorm immediate release for breakthrough. I take 25mg Amitriptyline at night but take “holidays” from it as it makes my already loud intrusive tinnitus even louder!


    I wouldn’t wish this nightmare on anyone, but that said I still try and squeeze ever bit of enjoyment I can out of every day.


    Hi SuprSi, you have been given great advice, without the mix of opiods/narcotic pain medication and the Pregabalin (Lyrica) and Amitriptyline my pain would be unmanageable, for me it is the mix of the three different types of meds that work. I used to take Tramadol (both extend and immediate release types) but now use oxys. The Tramadol was a great mix with the Pregabalin (Lyrica) but it is not a good idea to take it with Amitriptyline (possible serotonin syndrome problems). Keep on asking to try different combinations of medications until you find the one that works for you. We are all different. All the best.
    Lu

  9. #9
    Senior Member SuprSi's Avatar
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    Thanks Lu, glad you got something out of the thread too. I totally agree with trying to get the best out of each day! It seems to be very 'trial and error' from the doctors point of view, so posting what works for you is very helpful to get a starting point.

    Cheers, Si.
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

  10. #10
    Senior Member Van Quad's Avatar
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    Great post arndog. Old school quadriplegic here from the days when there didn't seem to be much neuropathic pain. More complete injuries were probably the reason. I went from no pain to excruciating neuropathic pain in my shoulder from a syrinx. Lyrica seems useless so I'm going onto gabapentin. My solution right now is oxycocet with medicinal marijuana brownies. Very effective, and the only side effect is a big smile.

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