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Thread: what do you do when the pain is too much

  1. #1

    what do you do when the pain is too much

    i can't take much more. tried the meds, sympathetic nerve block. i don't think i can work, even from home. do you guys take vicodin? just to get thru the day? i am struggling. 21 yrs of 24/7 pain with huge escalation past 2 yrs is doing me in. been to pain management clinic, had the latest drugs. no relief.

  2. #2
    Quote Originally Posted by cass
    i can't take much more. tried the meds, sympathetic nerve block. i don't think i can work, even from home. do you guys take vicodin? just to get thru the day? i am struggling. 21 yrs of 24/7 pain with huge escalation past 2 yrs is doing me in. been to pain management clinic, had the latest drugs. no relief.
    Oh, Cass. I am so sorry. I assume that you have tried all the options. Have you had epidural spinal cord stimulation? I wish that there was something that I could suggest.

    wise.

  3. #3
    {{{Bette!!!}}}

    no advice, just a hug and a zillion prayers!

    Take care, because I care...

    Teena

  4. #4
    Banned adi chicago's Avatar
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    Quote Originally Posted by Wise Young
    Oh, Cass. I am so sorry. I assume that you have tried all the options. Have you had epidural spinal cord stimulation? I wish that there was something that I could suggest.

    wise.
    sir can you give us some more info regarding epidural cord stimulation?
    thank you
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  5. #5
    Senior Member CapnGimp's Avatar
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    Hey Adrian,
    I googled it and the first page of hits was so-so, got this from the second page. Mind you I only spent a minute at it. Try googling it yourself and go through some of the hits...

    http://www.anesthesia-analgesia.org/...tract/77/1/110

  6. #6
    medtronics also has a ton of info on it.i looked this up right after my spinal cord surgery as an option for my central.this was the first thing mentioned by my NS.once i read that it should be considerd a 'last' resort' after trying many other modalities(medtronics lists the criteria you should meet before trying this),i decided against it for alot of reasons,mostly becasue i hadn't attepted any real pain management yet.NSs are like that tho.but you Cass,are the type of person this was made for.it would appear after all this time that you have most likely ran the gamet of modalities?all though,is vicodin the only narcotic you have tried ?i am only asking because of the way you stated it in your post.i just got the impression as tho you were trying to see if taking a narcotic for our type of pain was okay,you know what i mean?whatever actually works,go for it.different meds work for each individual in different ways.many people have a couple different 'types" of pain.some neuropathic and some more structural mechanical type,this is what mine is so narcotics(oxycontin) do work on at least some of mine and it does lessen the intensity to a certain degree with some of the others.i would give just about anything a try at this point.

    you mentioned a sympathetic block,does this mean you actually have sympathetically generated pain like with RSD?unfortunetly those types of blocks will only realistically work with SNS generated pain.they worked for my knee and lower leg which is in part,affected by RSD but didn't do squat for my upper torso which has been determined to be strictly central pain in the area where we were trying to achieve at least some relief.

    have you tried more than one pain doc in all the years you have been trying to find some relief?just where is your pain and what type is it?or i guess a better question would be what does your particular hell feel like?i would at least look into the SCS.they will do a trial run with this to see if it even would help at all before they would do any actual implantation.you could try a TENS(if you haven't already)to see just how that would work.whether you actually respond in any way to electrical stim before even doing a trial run with the SCS.just some thoughts.i wish you lots of luck and hope you can finally find some level of relief.thats a hell of a long time to have to suffer.Marcia

  7. #7
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    Hi Cass,
    I have severe pain, too. I don't know what sort you are referring to when you refer to your pain but the advice I use for my 2-tier pain prong: neuro and bone. Neuro is hard to deal with, with me it's the main catalyst for the bone pain but they hardly are mutually exclusive. I've been taking Elavil 50 mgs 1x/day, Actiq 800mcg 3-4x/day, Duragesic 100 mcg patch. I'd like to get off these poisons but I tried last weekend and ending up sweating, thrashing around like a lunatic (segue, as always)...
    This next bit is how I cope when it's unbearable: put in a movie or tv show you really love (I love Sex and the City), put an Actiq 800 lozenge in my mouth and try to ease y mind. Sometimes, I put a lidoderm patch on my bum, but it's not very useful.
    M.

  8. #8
    Senior Member mike's Avatar
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    Hi Cass,

    Sorry to hear about your problem. I also have severe CP and have run out of options to keep it under control.

    I had spinal cord stimulation about three years ago and although it helped the pain a bit but I found that it caused a pins an needle effect in my feet making it more difficult to walk, so I removed it. Now my pain is bad enough so I might not think the side effects are so bad.

    I was also up to Craig Hospital a couple of years ago. Dr Falci does untethering surgery there and has found that pain is relieved in about 50% of the cases. At the time I was not ready to submit to that kind of surgery, so I decided to look for other options. Going to Craig or reading from their website might be helpful.

    I assume that you have had MRI's to check for problems such as a syrinx that might be responsible for your pain. Hopefully that is not the cause.

    In any case I wish you the best in trying to find a solution that will work for you.
    mike

  9. #9
    ty all. tens is no use, anti-depressant/seizure drugs no use (in fact, make me sick), haven't actually tried narcotics yet cause i figure i won't be able to function on those.

    wise, i will ask dr. chaball at the pain management clinic about the epidural. he is an anesthesiologist who worked 20 yrs (?) at UW. thanks.

    right now i am really struggling with trying to keep working. it is hard to admit i may not be able to and i am letting co-workers down by trying to work yet finding so many days i just can't.

  10. #10
    21 years of this hell and you have not tried any real narcotic types of relief?who has been managing your pain?i would reccomend trying some of the longer acting meds like oxycontin,really.this drug gave me at least some of my life back.being opiate niave tho,you should be started on a much lower dose ,then titrated up a bit til you find at least some level of relief.narcotics DO help with some of the types of pain we feel.unfortunetly not all but in the majority of cases,it can lessen the overall intensity.these should at least be tried befroe going to the SCS.it IS a pretty big surgical type step when you have not even gone the narcotic route yet.the longer acting slow release (like oxy)really don't give you that wiped out feeling and you would still be able to function thru your day.in your case,it may take a bit more time to get used to but most people do accomodate well on them.being on a long acting med may allow you to continue to work and function even better than you currently are.like i said,it just may take a bit to get used to if you are not used to being on any narcotics,but most people do accomodate well and do become much more functional with them vs without them.my pain clinic,the other modalities and the narcotics have allowed me some of my life back.

    i have tried alot of the anti S meds as well and after trying lyrica,things have gotten really ugly with every other one i have tried since.they make me sick now too.my eyes,my gait(the lovely kidney swelling) and just that wonderful overall stupid feeling they give you,well,i decided i am just going to try and rely more on the outside methods more now.my tens and the lido and this wonderful cream called doxpipin?all help me much much more without the ugly side effects that i keep getting from the anti S meds.the thing is cass,you do have some options to try that you have never tried yet.i would give them a serious shot and see how things go for you.you shouldn't have to live with the full impact of your pain,espescially for as long as you have without even trying any form of narcotic relief.all we can do is try and see what happens ya know?i wish you lots of luck with this.please keep us posted as to how you are doing.marcia

    were narcotics ever brought up to you by whoever manages your pain or was not trying them simply your idea?just what does your pain feel liike and where is it located?

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