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Thread: Horrible pain

  1. #1

    Horrible pain

    hi there guys ,

    im a T9-10 complete , 2 years post already , i didn't experience neuropathic pain after my injury , not until 6 months after my injury it started out really slowly , up until now i have been trying to ignore it and not knowing really what to do with it , it got to me now , its really horrible , irritating , hot tingling kind of pain .. its getting really unbearable .. its torturing to shower , wear my clothes , i cant stand the feeling of shirts rubbing on my sensitive area ( just below the rib cage ).

    the deal is i tried nurontin , 300mg two times a day .. im not sure about the dosage , should i increase it , i absolutely feel no improvement at all after neurontin , we have absolutely 0 doctors that know what they are doing here.

    its hard enough living with SCI , it has been even harder living with this pain , i cant get out much , i cant do shit !

    is there places or doctors that i consult online ? drugs i could buy online ? something to tell the doctors here ? when i described my pain to a doctor once he thought its a skin problem and kept rubbing the area i cant touch. ! WTF.

    sorry for the long post , i really need help ..
    Last edited by Neo; 04-17-2006 at 10:32 PM.

  2. #2
    My max dose when I was first injured was 3600mg. 600mg six times a day. I did not feel good at that level. I finally learned that i could not control all the pain. I continue to try other medicines. My legs experience the most pain. I wear preasure stockings to help. Can you try an tight fitting t-shirt. I will ask some of the Docs I know if there is anything else to try.

  3. #3
    I guess ill ask about increasing the dosage , about t-shirts , i find that tighter t-shirts cause more irritation and worsen my pain , i try to wear bigger shirts now , it helps but not that much .. i appreciate your efforts man , thanx alot.

  4. #4
    Hi, Max. I'm sure one of the nurses will respond to you.

    I'm sorry you're having such pain. Neuropathic pain is true hell.

    If the doctor increases your Neurontin/gabapentin and it doesn't help, there is another medication called Lyrica. It helps provide some relief for some people.

    I take Neurontin/gabapentin and it helps. However, I'm on a higher dose than you are. My doctor gradually worked up my dosage from where it started. I think it's about to go up again because I'm having more trouble with the stinging/burning/electric buzzing.

    I hope you get some help with your pain soon.

  5. #5
    Hi Max,

    I'm T-10/T-11 complete, just over 13 months now, and I have had nerve pain almost since the beginning. While I was in the hospital I initially had a lot of pain right at the level of paralysis, but also had the tingling, pins and needles, buzzing type...whatever you name it.

    They started me on Nuerontin and I eventually worked up to 800mg 4xday. At one point that seemed not to be enough. My regular doctor said she could up my dose if necessary, I wasn't interested. My rehab doctor then prescribed gabitril and that seemed to help, without all the side effects of nuerontin. I must say after I stopped the nuerontin completely after I while I began to notice more nerve pain. I had no desire to go back on Nuerontin. I then tried lyrica for a week...there was some improvement but not enough for me to want to pay for it. My doctor did say that if it didn't help within 7 days, you weren't going to see any more improvement, so it would at least be worth a try I would think. It works for some and not others, just like all the other meds of course.

    Since I've adjusted the amount of gabitril. I was on 4mg 4xday, and you can go up to 32mg a day according to my doctor. I still have some nerve pain, but its bearable now at least.

    I was also told that cyclobenzaprine is sometimes prescribed to help with nerve pain, its a muscle relaxer...I took it for a while but I didn't like how it made me feel.

    I hope this helps...at least gives you some ideas of other medications out there.

    Jennifer

  6. #6
    You're receiving lots of good advice already. I just want to point out that 6 months is practically textbook as far as how long it takes neuropathic pain to kick in after an SCI. I wish you the best, and if you haven't found it yet, you might find some useful information about central pain sysdrome on my website: http://www.painonline.org Also check out http://www.centralpain.org
    Last edited by David Berg; 04-18-2006 at 11:22 AM.

  7. #7
    Believe me max,we all know what you are going thru.no one knows what this crap really feels like til they have actually experienced it for themselves.you just cannot relate how freaky this stuff is to someone to a level they can actually comprehend.i do feel for ya,really.

    you are on the right track as far as the type of meds that have been proven to be the most effective type of meds for this hidious pain.the anti siezures are usually(with neurontin being the (usually) first to be tried)the first meds tried for treating this type of pain.I was on neurontin for over two years and never really felt any real relief from it despite the constnt raises in my dosages.never had any side effects either til I hit the 3600 dose,then my vision blurred an I started feeling kinda 'outside myself"?freaky stuff there.when I started with my new pain doc,he took me off the neurontin and placed me on the gabitril.this stuff actually affected my pain for once but the downside was extreme,and I mean all i wanted to do was go to sleep fatigue.so I started taking the majority of my dose at night.this is a wonderful sleep aid by the way,at least for me.everyone responds very differently to any given med.while I never ever felt any real side effects with the neurontin,I konw lots of people who have tons of actual big side effects from it.it just varies.the big thing here is if your pain feels any relief at all with any med,it should be stayed on and just titrated up to see if the relief gets even better.just getting ANY med to even touch this type of pain is an amazing feat in itself,but when you actually start to feel a difference at all,it IS definitely worth titrating up on it to see just how really well this may work.

    unfortunetly this all takes alot of time and adjustments but it really IS worth the effort when you consider the type of pain and the ungodly intensity of the pain you are trying to treat,ya know?It is a really "outside of the box" type of pain that requires alot of 'outside of the box" types of meds and therepys to treat it.if you are not already being treated by an actual pain doc,i would very highly reccomend you see one.they just have so many different modalities to try and treat our type of pain that no regular doc can offer.

    i am really sorry that you are also having to deal with this crap.it really makes a bad situation much much worse(like living with the actual results of the injury isn't bad enough already?) just trying to deal with it on a 24/7 basis,and get any real relief from it.but you did come to the right place for support and some answers.i hope something will work for you soon,hang in there,Marcia

  8. #8
    LaMemChose , thank you very much for your help , actually i gave up on the nurses already and ill talk to my doc about increasing , i think well just have to wait and see ,

    Bonita , im sorry that you had to experience this pain from day 1 , i will write down the names of the medication that you got , ill make sure to show them to my doc , maybe he'll have a clue ..

    David Berg , thanks for the websites , ill check them out ..

    firesmurf , thanks for sharing your experience , i guess we're all in this together , the most irritating thing about this are the doctors , you are really lucky to have them in the USA , all we have here is a bunch of clowns (literally)

    i really appreciate the advice guys , and i wish you a pain-free life ..

    max

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