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Thread: Neuropathic pains, Medication advice.

  1. #21
    ~Lin - I agree that it is always valuable to drive home the difference between tolerance and addiction. But there even is a down side to tolerance. What if there was a crisis with the supply of medications to your pharmacy if there was a major disruption in infrastructure and pharmacies could not get medication. Like a Katrina or a terrorist act. Then it is good to have a back up supply for meds that one has a tolerance to just in case there is a temporary supply chain issue. No, I don't spend all my time thinking up these things but it does cross my mind. For me, this would include opiates and Lyrica, possibly ambien too...

  2. #22
    Senior Member ~Lin's Avatar
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    Definitely! And Hipcrip is a perfect example, she recently had a thread where she had to ration out her meds while waiting for the refill. I keep a small back-up on my own. There are always times where you skip a dose because you didn't need it or slept through it. I always refill my meds exactly on time so that I can collect and keep these missed doses incase of an emergency where I could not refill on time. The good thing about narcotics is how easily interchangeable they are. Everyone reacts differently to meds and so changing won't necessarily cover your pain, but you can keep withdrawal away by taking a different one. Its harder with other meds such as Lyrica. I was lucky and didn't experience any withdrawal to Lyrica, Cymbalta or Neurontin but I know some have gone through nasty withdrawal from those.
    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.

  3. #23
    Senior Member SuprSi's Avatar
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    Well, just got my first cold since my injury and it appears that the pains are 10 fold when I'm under the weather. I've never experienced pain even close to the nerve pains in my hips and legs at the moment. I never cry, but I found myself in tears about half an hour ago. I've taken double my usual dose of lyrica (150mg), and some paracetamol, just waiting for it to kick in.... I wish it would stop!! I'm hoping I'll get over the cold soon and back to the usual level of pain. Dosing up on multi-vits and orange juice.

    I have serious respect and sympathy for everyone else experiencing this or worse.

    Fcuk karma, fcuk religeon... it's all bullshit, what did we do to deserve this?!
    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. #24
    SuperSi - can you just crawl in bed and fall asleep? Maybe 8 hours from now you will feel better. I like your quote about insanity. Hang in there , brother.

  5. #25
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    Quote Originally Posted by SuprSi View Post
    Well, just got my first cold since my injury and it appears that the pains are 10 fold when I'm under the weather. I've never experienced pain even close to the nerve pains in my hips and legs at the moment. I never cry, but I found myself in tears about half an hour ago. I've taken double my usual dose of lyrica (150mg), and some paracetamol, just waiting for it to kick in.... I wish it would stop!! I'm hoping I'll get over the cold soon and back to the usual level of pain. Dosing up on multi-vits and orange juice.

    I have serious respect and sympathy for everyone else experiencing this or worse.

    Fcuk karma, fcuk religeon... it's all bullshit, what did we do to deserve this?!
    I agree with Arn...crawl in bed and pass out.

    Everything is amplified when you are sick. I am so sorry. I understand and feel your pain.

    Feel better soon. (((hugs))) hang in there.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

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  6. #26
    Senior Member SuprSi's Avatar
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    Thanks guys, did what you said, curled up in bed listening to ipod for a bit and finally fell asleep. The next day was better, slept a lot, got over the cold more or less and back to normal, or at least this 'new' normal!

    It's amazing how much you have to re-learn about your body after SCI... a mild cold completely knocking me on my ass like that was a tad unexpected!

    Thanks again for the support.
    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!!

  7. #27
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    Quote Originally Posted by SuprSi View Post
    Thanks guys, did what you said, curled up in bed listening to ipod for a bit and finally fell asleep. The next day was better, slept a lot, got over the cold more or less and back to normal, or at least this 'new' normal!

    It's amazing how much you have to re-learn about your body after SCI... a mild cold completely knocking me on my ass like that was a tad unexpected!

    Thanks again for the support.
    When you feel it coming on the next time, start taking Vitamin C and fighting it off before it gets bad.

    Glad you are feeling better.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #28
    Si - I know what you mean . With all the pain I have experienced in 10 years and 3 weeks with SCI, part of me is tough but the other feels like I am on the edge and a cold or a GI flu would be the straw that breaks the camel's back - (what an appropriate analogy ! )

    I think it would be all I can manage to have "one more thing" go wrong. Glad my advice of pulling the sheets over your head plus music helped. The music thing is huge for me too to get me through hard times. I am a classical music fan, usually Barber's violin concerto can help the very bad pain as a distraction.......

  9. #29
    I can only talk about my own experience which I have a lot with pain.
    Pre accident I have had many painful experiences and rarely needed any painkillers.
    After my spinal .......This stage I got pain which told me that I have to go to toilet and do number two, so taking painkillers for that pain would have caused a bowel accident!
    .... So what I was saying that after my spinal injury, in the hospital I got given pain killers like morphine and panadol. I gave using painkillers 3 weeks after my accident and I started to get better faster at the same time. Coincidence perhaps?

    Now after 15 years I have more pain every second day almost like clockwork and I can plan my activities accordingly. Sometimes I miss a pain day but I have not been able to figure why. Perhaps I should write everything down I do and that might give me answers why I feel better and why I feel worse on some days?

    On my pain days I try not to do anything what requires big financial decisions and try to put those decisions to less painful days.

    I take the neuropathic pain, pins and needles on my feet and buttocks as a good sign as it precedes nerve recovery. My left quad had pain first in the hospital and that is fully recovered.
    Now the pain has migrated to my feet and eft lower calf which are weaker. After all these years I am still getting recovery!

    Ways I deal with my pain are mainly rest and keeping my feet warm. In winter keeping warm is much harder so I get more pain. Going for a holiday to a tropical island helps.
    Another way to deal with pain is a swim in salt water. Even it is cold and I manage to go and have a swim in the sea and then get back to my van which is warm, that helps for about couple hours until the effects of a swim wears off. Possibly the minerals on the sea water have a therapeutic effect as you can get minerals through your skin by osmosis.

    So I think that by not using painkillers, my pain tolerance has gone up and body produces its own pain killers?

    Sometimes I do acupressure massage on my back and legs to relieve the pain. Just have to find the spots which remove the pain.
    I had acupuncture on the early days of my accident and it did help for a few hours afterwards.

    Now my pain is making me drowsy and thinking becomes harder so I better stop typing...

  10. #30
    Quote Originally Posted by arndog View Post
    ~Lin - I agree that it is always valuable to drive home the difference between tolerance and addiction. But there even is a down side to tolerance. What if there was a crisis with the supply of medications to your pharmacy if there was a major disruption in infrastructure and pharmacies could not get medication. Like a Katrina or a terrorist act. Then it is good to have a back up supply for meds that one has a tolerance to just in case there is a temporary supply chain issue. No, I don't spend all my time thinking up these things but it does cross my mind. For me, this would include opiates and Lyrica, possibly ambien too...
    Thank you for this comment. It's one of my greatest fears sometimes since I feel so dependent on painkillers. I hate that these pills have such importance in my life! Ive noticed that if I manage my pain pills very precisely, it helps significantly.
    I take one Amitriptyline at bedtime, and I sleep like a baby. I'm at the max dosage of Gabapentin, so I also take Lyrica. Both of these seem to work much better when taken regularly and so I talke the Gaba at 9 am, 3 pm, 9 pm, and 3 am, and the Lyrica at 9 am and 9pm. At 3 each morning, I wake up to an alarm, take the pills with water - on my nightstand - and immediately go back to sleep. Crazy, but it helps and I've gotten used to this schedule.
    Each person is different, but I have found that things which are calming to me help reduce the pain. For me, it's warmth, plently of sleep, quiet, and repetitive actions. Warmth comes from hot epsom salt baths, those great little microwaveable heating pads that you can strap onto your body, and even running very hot water over my left hand. (I do a lot of dishes by hand now. ) Each person needs to experiment to find little things that help mitigate pain for them and use these along with the meds during the worst times.
    I also wonder about the term "addiction". I don't feel like I am addicted to any of my meds, but I would be in total misery without them, because of the pain. I'm not totally pain-free, but can function and, when distracted, don't notice it. If someone was burning you with a hot poker every 8 seconds, stopped for a few days, and then started again, would one say that you were "addicted" to those times of respite? Of course not, but you would sure be a lot happier on those days!

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