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Neuropathic pains, Medication advice.

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    #31
    Its scary to be dependent on meds. A very real concern for emergencies and possibly being without. Chronic pain is a medical condition. A diabetic is dependent on their insulin, and thats scary too. Its the same thing for a chronic pain patient and very different from addiction. I'm dependent on many medications, and I absolutely hate it! I have a couple days worth of all of my medications in a vitamin box that I take everywhere with me. That way in an emergency I'm covered! It also helps me remember to refill my meds on time. I always make sure to also have a couple days worth in the bottles. So when I go and move the last couple days from bottle to case, I know they need to be refilled within the next couple days.

    Here is my box. I'm actually on more meds than the number of spaces, but I have multiple meds in some of the spaces. For example my thyroid pills are tiny, and only one a day so they don't take up much room! And of course there are smaller boxes for people on less meds.

    Meds definitely work better when taken on a schedule. Especially pain control, because you get much better control when the pain is staying managed and you're not waiting until its unbearable to take your next dose. I have med alarms set on my cell phone to go off so I take everything at the same time every day. For someone who can't set up custom alarms like that on their phone, there are various websites that you can set up to get med reminder texts to your cell phone.
    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.

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      #32
      Hi I started a threat about this awhile ago. https://www.carecure.net/forum/showthread.php?t=158202
      Someone said that they had 3 inches of there SC removed, and they still had the burning pain. Go figure. Some doctor guy on this site, theorized that the pain was traveling up the guys veins. Good luck with the various meds.
      T12L1 Incomplete Still here This is the place to be 58 years old

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        #33
        withdrawals

        i attempted to come off Cymbalta cold turkey. I have never experienced withdrawals until then. Pretty horrific. I'm back on them, plus they have upped the dose. (i made it one horrible week)
        Going back to specialist to talk about neurostimulation. No body here had anything good to say about it.
        Pain specialist wants me to go off Neurontin, i'm going off slowly.
        I'm now on Percocet, went off the Norco. So am now taking, zanax,
        percocet, cymbalta, 90mg and slowly going off neurontin. I have to take macro bid daily for UTI's.
        Can someone tell me if Tramadol is something i should try? I have cauda equine, along with CP. Major butt burning, feet.
        Any suggestions, this is getting worse when i honestly thought it couldn't.
        If i'm super active i suffer big time.
        Taking milk thistle to help my liver.
        nap time, i'm sleeping more than ever.

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          #34
          Originally posted by springville girl View Post
          i attempted to come off Cymbalta cold turkey. I have never experienced withdrawals until then. Pretty horrific. I'm back on them, plus they have upped the dose. (i made it one horrible week)
          Going back to specialist to talk about neurostimulation. No body here had anything good to say about it.
          Pain specialist wants me to go off Neurontin, i'm going off slowly.
          I'm now on Percocet, went off the Norco. So am now taking, zanax,
          percocet, cymbalta, 90mg and slowly going off neurontin. I have to take macro bid daily for UTI's.
          Can someone tell me if Tramadol is something i should try? I have cauda equine, along with CP. Major butt burning, feet.
          Any suggestions, this is getting worse when i honestly thought it couldn't.
          If i'm super active i suffer big time.
          Taking milk thistle to help my liver.
          nap time, i'm sleeping more than ever.
          I don't know what level you are are but you are describing similar to mine.

          I weened off of Cymbalta cold turkey in December. It was horrific but I had been on it since 2002ish and it had stopped working and actually changed my whole personality. I don't know if it had built up in my system or what happened. It took about 6 weeks for the dizziness and brain zaps to go away.

          I take Tramadol ER (extended release) 200mg once a day and it does help me. I also take Topamax 75mg 4 times a day and slowly upping the dose as it wears off.

          My burning is below the knees and in my left hip. Exercise has helped more than anything recently. Last year was the worst year in all 24 that I have been injured. Something happened with the nerves.

          There is alot of pain experience in the pain forum here and you will find that you have to find what works for you. There are no two injuries alike.
          One drug will work for one person and do nothing for another. Cymbalta allowed me to work and live a full life for a number of years but I would not relive last years horror story for no amount of money. A good pain physician is hard to find.
          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

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            #35
            I'm sorry about your cymbalta withdrawal! I consider myself very lucky that I never experienced any issues coming off cymbalta. I don't remember any withdrawal symptoms at ALL. However, coming off effexor (very similar drug) was the worst med withdrawal I've ever experienced. Another anecdote that everyone is different!

            Tramadol/ultram is definitely something to give a shot too. Its considered non narcotic so not as strong as percocet for example but everyone reacts to meds differently. I can't take hydrocodone (vicodin) and 100-150 mg ultram works much better for me than a percocet for breakthrough. Ultram is also pretty easily combined with many meds so your doctor may decide it is a really good idea. I took it for 11-12 years everyday, and have just recently stopped it daily as I've reached a good level with my other meds. I still have it prescribed for when I need it, and add it in on days when I do more or hurt more. Just watch your tylenol consumption if you're prescribed ultracet which is ultram with tylenol, since you're already taking tylenol in your percocet. Personally I do not like to take any of the tylenol combinations, tylenol is the only med that works for my headaches so I prefer to have that option when needed and not already be taking it.
            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.

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              #36
              I take gabapentien and 4 mg hydromorphone 3 times a day and it just lessons the intensity of the pain. I tried working for a year part time but had to quite as I just couldn't handle work, home life and this unrelenting pain. Now that I am not working I can do stuff around the house and be part of my family. I still struggle through everyday and over did it today and now cannot get to sleep. Is lyrica better than gabapentien as I want to try different things so I can get my life back. I take a apo- lopermide for my bowels just so i don't have diareahea all the time. I can concentrate on things now and actually watch TV. I still have to lay in bed in pain for hours before I fall asleep. I take allergy pills help me get to sleep faster sometimes. I am scheduled to go to a pain clinic are they worth attending or is just a waste of time. I find being in this much pain all the time is a form of insanity. It makes you appreciate little things because big things seem over whelming like a two hour car ride or sitting in a boat for an hour. Isn't this shit fun.

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                #37
                My 2 cents - the pain center is valuable. Get some sleeper med so you don't have to lie there trying to go to sleep. Lunesta, Ambien. something to make falling asleep easier. Try Lyrica, it works better than Gabapentin FOR SOME PEOPLE, if you try it really give it a go for 6 weeks and get up to 600 mg a day before throwing in the towel and going back to Gabapentin. Consider taking Elavil at 25 mg before bed. It helps with this pain and has a good side effect of sleepiness to help going to sleep. Good luck.

                They may offer you cymbalta, if so try it. Develop a good relationship with them. I think they will be our allies as or if the pendulum swings to non prescribing general practitioners.

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                  #38
                  I agree with Arndog. I think it's worth it to try both gabapentin and Lyrica. Both good meds, but not always the same results for all. I take Gabapentin....at the high end of dosage, and it works okay. I once tried Lyrica, and it would have been great, but I had allergic reactions to it. Too bad. Some are able to tolerate either, and that's a good thing. Especially since we never know what our insurance is going to cover. Gives you a back up, of sorts. And the Lyrica can cost more, which sometimes makes our choice.

                  Going to a pain clinic....a good clinic....is the way to go. Too many GP's do not give out pain meds anymore, and the clinic usually has a better grasp on what you are going through. Mine understood that a pain med for break through pain was also needed, and the gp did'nt have a clue......

                  And yeah.....this crap is a ball! lol

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                    #39
                    Thanks arndog. It is good to learn things instead of just struggling along. I feel better now that I am not working because I can try to recover and set my own pace. I love working but it was to tough of job and they wanted me to work long hours somedays. I am going to the doctors tomorrow and will ask for Lyrica and the Elavil. I know how you say about being isolated or alone. I am married and have kids so I have to keep my sh t together which seems to be what this is all about. I have zillions of things I want to do and try to keep busy just looking after house, yard, pets, cars and cooking. Thanks again for the advice. Earlier on I couldn't even lay down because I was in so much pain. Now I am at least able to lay down and not squirm around for hours on end.

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                      #40
                      Thanks smokymtn memories I will try the pain clinic when I finally get in.

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                        #41
                        On an update to my first post, I've now reduced the oxycocet to a minimal level. But I found that Gabapentin and a small amount of edibles eradicates the neuro pain.
                        Again, good luck

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