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help?!! severe nerve pain mainly in righr buttock but also down back of right thigh sometimes too

im 19 have spina bifidia myelomeningocele and the past couple months ive been having severe nerve pain there and was on neurotin (gabapentin) 900mg in morning,1,200mg in afternoon,900mg evening,methadone 15mg every 6hrs,baclofen 10mg 3x day,flexeril 10mg 1-2x day,and hydrocodone/apap 5-325mg 1-2tablets every 6-8hrs as needed and now ever since the friday before this last one ive been on lyrica 25mg 3x day and morphine sulfate extended release 30mg 2 xday instead of neurotin methadone and hydrocodone.first meds helped slightly but these meds aint at all besides for muscle/bone pain which wasnt real before anyways.im thinking about calling pain management monday to see what can be done but am afraid of seeming like a drug seeker and am afraid of there not being anything else i can do cuz ive switched med dosages several times but not really with meds as for nerves ive only been on lyrica and neurotin but at abunch of different dosages anyways please help thanks have a great evening! :-) <3
im miranda,im 19,have spina bifida,have severe chronic low back pain,hydrocephelus w/ vp shunt,and have to be always in a wheelchair because i cant walk more than like 5 seconds at one time.


  • You were certainly on a lot of medication for someone so young. I am going to include a link to a post called Getting treatment for chronic pain step by step........you really should read that and read it again.
    Have you had surgery for the spina bifida? I assume that you have.
    It sounds like you may have a flare up of sciatica at the moment. It usually resolves itself over several days, or weeks, sometimes can last as long as a few months, but eventually, in most cases it disappears as quickly as it came. Have you seen your doctor for this recent onset? If not, it might be worth a visit.
    As far as your medications go, why did your doctor change your meds if they were working? How often were you taking the breakthrough meds? How long were you on the previous medications and those dosages?
    As far as the switch to the morphine ER and the lyrica goes, you really need to give it time- most pm doctors want a patient to give a new medication at least two weeks and prefer a month before the patient complains that a medication ' doesn't work'. Opiates work on the pain receptors in the brain, so while you may not feel the meds kick in, I assure you that they are giving you some pain relief. Opiates do NOT work well for neuropathic pain but the Lyrica that he changed you over to, needs a week to build up to a level in your body, and I'm pretty sure that he ( your doctor) is going to have to adjust the dosage at least once for the Lyrica. The normal dose range for Lyrica is around 300 mg for neuropathic pain.
    Immediate release medications such as hydrocodone release their medication within an hour after you take them, extended release medications are made to release a steady dose of medication over a specific time frame- so there is no onset that you feel when you are taking the extended release meds which may be why you think that they aren't working. Give it a bit of time, and then if they are still not helping in two weeks or so, contact your doctor and ask him what else you can do.
    You should be using ice, heat, heating pads or the heat patches over the counter that are available in the pharmacies to help manage the pain, as well as the creams, ointments that are also available over the counter. Are you in physical therapy or use a TENS unit? Swimming and excercise are all part of a good pain management program, as well as simply walking and stretching.
  • mirandammiranda Posts: 9
    edited 09/08/2013 - 11:42 AM
    yes ive had surgery for the spina bifida but neuro said he wasnt going to do another one till i absolutely need it cuz i have trouble healing sometimes.and yes i have thats what we talked about during last visit when she switched meds.i have no idea i think she just wanted to try to see if these would work any better cuz i was just getting slight improvement with other meds.i was taking the breakthrough meds quite often like pretty much every chance i could.i was on other meds for about a year or two but she kept messing with doses like every two months or so.and ok ill try to give it more time.i use heating pads and hot baths but as soon as im done with either one pain comes right back again.and im in physical therapy already for another 5weeks which will be 8 weeks total but theyre all on stationairy bike and stretches they dont want me in pool till 8weeks is over and i am able to join a ca for some reason whats a tens unit? no matter what it is i dont think they have it though :-\ thanks so much for your help! have a great day! :-)
    im miranda,im 19,have spina bifida,have severe chronic low back pain,hydrocephelus w/ vp shunt,and have to be always in a wheelchair because i cant walk more than like 5 seconds at one time.
  • Transcutaneous electrical stimulation- it is used to reduce pain and can be worn at home, and for some people it really does help relieve the pain.
    One word of caution about the use of breakthrough medications. I know that you don't have them now, but they are not meant to be used all of the time. In fact, they should only be used when you have tried every other tool, ie.....ice, heat, hot showers, over the counter creams and ointments, stretching, resting, before you reach for the breakthrough meds bottle. Taking it regularly leaves you with nothing to help when the pain is out of control. If you take it as little as once a day, but at the same time every day, then your body quickly adjusts to that extra bit of meds and will try to convince you, even if you have done nothing to cause the pain to flare, that the pain is there and you need the extra meds.
    The idea behind using extended release medications is that you will build up a steady level of meds in your blood stream, and thereby have better overall pain control and won't need to use breakthrough meds nearly as often.
  • ok ill ask to see what my pain managent doc thinks about that.and yeah i think that may be one reason she switched me but bad thing is that now nothing helps at all! :-\
    im miranda,im 19,have spina bifida,have severe chronic low back pain,hydrocephelus w/ vp shunt,and have to be always in a wheelchair because i cant walk more than like 5 seconds at one time.
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