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  • It is very hard for me to accept. This Pain, is....well PAINFUL :))(
    I do think I have nerve damage/pain. My Dr did mention the nerve meds. I was on neurontin for a while but got bad headaches, chestpain and blurry vision. I have been reading alot about Topamax. I may ask my Dr about that next Tuesdy when I see him again. Ive also read about Lyrica but I do NOT want to gain any more weight.
  • Hi Dmoon,
    Thanks for your reply. I apologize for not responding. I've been having a rough few days myself. :|
    Anyway, one of the side effects of oxycodone is the sweating. I know because I have dealt with it myself and I hated it. If I was close to my next dose, you could bank on the sweating starting and while I thought that it was the pain levels, it was truly the oxycodone. :| If you are taking it at 5 am, I am guessing that you are taking it also at 5 pm for the 12 hour dosing? You might try taking it a bit later in the evening, so that you have some time left on the 12 hour dosing schedule so that you can get up with less pain, instead of having to wait to get up an hour in the morning.
    As I said in my previous post, taking the breakthrough meds regularly, or close to regularly, will result in them not working for you, as well , when you need them to. Like in the a.m. when you are getting up. It might work better for you to change the timing of your long acting and have you take a short acting (breakthrough) med to help you get up and moving around faster in the morning.
    I also have breakthrough meds and I try to stay away from them until the pain levels are really up there, otherwise, taking them when the pain is escalating but not truly debilitating, does nothing for me when they are debilitating. If that makes sense to you?
    Some other things that you can do to help ease some of the pain is to take a sock ( tube type) and fill it with instant rice.....heat it in the microwave for 2 minutes and use it in the areas that hurt....you'd be surprised at the relief a little heat can bring. Then a hot shower in the morning helps further. Or ice if that works better for you..
    What about using a TENS unit? Your PM can prescribe one for you. It might help to bring the pain levels in check some. It works similar to how a scs works but it is external. Some get a lot of relief from that.
    Motrin or aleve also works wonders for some of us. For some reason, adding those meds to our narcotic meds seems to bring some boosted relief. Especially during the really busy times of the days.
    You may not be ready for PT yet, but you do have to do something to keep the muscles as strong as they can be. :)
    Believe me, I do know how painful this is, and how hard it is to keep going. I have 4 children myself, two of them are young boys, and are a handful.
    It may be that you do need another adjustment in your meds, I am not a doctor and don't know the specifics of your condition nor the severity of it. But I do know that we also have to come to a point where there is a certain level of pain that we can function ( not at 100% by any means) with, and that our bodies learn to accept. :S The rest of it can be kept in check with pain meds if they are needed, but we can not rely on pain meds to kill all of the pain, so that we can function as we did before our problems began.
    Pain medication isn't designed to take away all of the pain that we experience. Some of it is a good thing to have, it lets us know if we are pushing too far or too hard, and our bbodies are in danger of being hurt if we continue, but there is a certain amount that we can tolerate and still function fairly well with as well.....and we have to learn to balance those two in order to live our lives as best we can. If any of that makes sense to you.
    I am concerned because I read you going from one med to another in search of being pain free, and then none of the new meds seems to be the ticket/answer, so you are looking at new ideas and methods to find pain free...I am not telling you to give up by any means, but what I am trying to convey to you and anyone else who is suffering is that you have to balance the relief that you get from the meds, with understanding that you may not ever be completely free from pain , so you have to use as many other non medication routes as possible to help keep the pain in check and to always be wary of relying too much on the meds themselves.
    The ESI's that you are getting, you also need to be careful of. They can cause problems for some . You should only be getting three injections during the course of one year I believe is the practice. I never got any relief from them, so I don't do them anymore.
    I hope that this new surgeon that you are seeing is going to be able to help you. What levels are these problems at? Mine were from L3 down, so I am curious. I had pretty severe stenosis at all three levels L3-4, L4-5, L5-S1 and DDD with vaccuum phenonema at L4-5,but the DDD is at all levels, and spondylolysthesis at L4-5, facet problems, arthritis throughout all of that too.....so I am curious who said that they would paralyze you if they did operate?
    Seems to me that if the stenosis is that severe that you run more risk of paralysis by not doing anything? Mine was pinching off the spinal nerves at three levels when they did the myelogram...
    Anyway, take care and just be careful....
    Sandi
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  • Hi again Dmoon,
    I agree with the poster who mentioned nerve pain. If you have stenosis, then there is a good chance there is nerve compression, at the least. Lyrica, Topamax, Neurontin, etc all work well to help that. So do some of the older, tricyclic anti depressants.
    You may find that being on Lyrica does a wonderful job of handling neuropathic pain. I understand not wanting to gain any weight on it, but I know that for me, I was on it after my first surgery, and felt after some time that it wasn't working so well anymore , so I went off it....I found out very shortly after trying a couple of other meds that it worked far better than I thought it did. I also gained some weight, but it is well worth the relief it gives from the neuro pain.
    I am also at the maximum daily dosage of it, so my weight gain seems to coincide with the dosage. When I was at lower doses, I didn't gain weight at all. And many people find that even if they do gain, they level off once they are on a stable dose.
    If you do try Topamax, please be very, very careful with it. It can cause a loss of appetite, which in itself is a problem. No one should loose their appetite completely, which is what happened to me and I lost 40 pounds ( mostly water gain from Lyrica ) in less than a month. It needs to be tapered, very, very slowly. Starting doses are around 25 mg, and increased in small amounts over several weeks to see if there are going to be any side effects.
    You were on a low dose of Neurontin, and so maybe that is not one that you can take, but there are several others that might help, much better than any of the narcotic drugs that you are currently trying.
    Give them a shot, after discussing them with your PM DMoon.....you might just find , like many of us have that neuro pain isn't controlled at all by narcotics, so between the narcotic meds for the mechanical pain and neuro meds for the nerve pain, you finally are getting better pain control....
    Sandi
  • Hi D'Moon. I don't think your doc would appreciate your demanding certain drugs. He or she is, after all, the expert BUT I was recently given a drug for nerve pain called Zonisamide that I believe is an anti-seizure drug, that is, in the same family as Neurontin and Lyrica and one of the side effects is weight loss. In fact, on the package insert, it said this drug is also used for obesity. Now, I am within the normal weight range for my height though on the high side of normal but I really appreciated my doc taking the weight gain thing into account. All of us who suffer from chronic pain have reduced our activity and have gained weight. I sometimes thought "What is wrong with you. (I talk to myself) "You have this horrible pain and you're worried about gaining weight???" But I guess we all do. Its one of the losses we experience and grieve as a result of our injuries. Hang in there, girl. You'll figure it out. Susan.
  • dilaurodilauro ConnecticutPosts: 12,401
    Being a 32+ year person suffering with Chronic Pain, I can tell you first hand there will not be a type of pain medication that is going to 'take care' of your pain. Also over a period of time, you body will start to adjust to the levels of pain medications. Lets say Week #1 you take 2 vicodin a day to manage your problem, by Week #7, you may have to start taking 8 vicodin's a day to achieve that same level of pain relief

    I am a believer in using pain medications to help with chronic pain, but I am also more of a believer in that you need the correct 'blend' of medications and treatments to really manage chronic pain... And even then, the pain will not disappear.
    Besides the Pain medications, these could also be used to control a situation:
    - Nerve Pain medication such as Neurontin or Lyrica
    - Muscle relaxers such as Zanaflex, Soma, or Rhobaxin
    - Sleep Aids such as ambien or lunesta
    - Physical and Aqua Therapy
    - Massage Therapy
    - Passive Traction
    - Acunpuncture
    - Ultrasound and/or Home Tens units

    When you put all of this together, you will know that you have examined each area and are doing all the things that you need to to control and manage your pain.
    Increasing Narcotic Pain medications should not be the only route considered. Doctors will know based on medical tests and clinical observation if higher dosages would be justified.

    I have read so many times on these posts that 'Surgery is not an option' When I hear that, I want to know more, the details behind this and exactly why surgery is not being considered. There are doctors that select surgery as a last resort, while there are others that would operate after you first visit to them. There are not that many spinal situations that surgery is not an option.

    I would go for many different opinions to make sure there is total agreement. Realize that there are some doctors that are not comfortable with a given procedure, so they would say surgery is not an option

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • Well said RON!! Have you only seen spinal surgeons or specialist or have you also seen Neurosurgeons? My NS is wonderful. He did my fusion and doesn't want to do another surgery yet he thinks I need another plate through my back. My first surgery was through my belly. So by the first of the year I should have an answer. Keep trying and eventually you will find a doctor that you feel is doing something for you!!!! Just like RON said " Realize that there are some doctors that are not comfortable with a given procedure, so they would say surgery is not an option".
    Also you will build a tolerance to medications so it does take a cocktail of meds sometimes. Not EVERYONE gains weight from nerve meds. It is a possible side effect but I know when I was on Lyrica or Neurontin I DID NOT gain weight at all. I thnk I seemed to be hungry more often but I would snack on fruits and vegis.
    Be careful when asking about your meds. If you ask for an increase or a change to a stronger med too often it will put up a red flag and quite possibly your doc will only give you a non narctic like Ultram, which does work for a lot of ppl.
    For me Methadone worked a heck of a lot better for me than the Oxycotin plus it was a lot cheaper. A lot of docs wont increase the dosage of Oxycotin due to the high abuse rate. Meds are a very touchy subject so be careful or like I said it MAY send up a red flag! Good luck and I hope you find the proper cocktail of meds that will work. IF you have nerve pain you need a nerve pain med to aleviate it. Oxy never took away my nerve pain. My daily pain lvl is about 6-7 around a 10 in the morning and evening. so if I hit a lvl 5 on the pain scale I feel very fortunate!! Good luck and keep us posted. MJ
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