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  • 4th Day off 10 years of methadone - Nerve pain!



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    Old 09-03-2005, 10:29 PM   #1
    HelpInSeattle
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    4th Day off 10 years of methadone - Nerve pain!

    I have been on methadone for literally 10 years. I was on 105 for many years. About 2 years ago I started detoxing. I started going down 3 mil. every other week and kept uping it until I was coming down 5 mil. every other week. It was fine. I had a few bad nights - but when I hit 5 mil. I never stablized again and today today is my 4th day without taking any.

    My mental state is remarkably strong - I want OFF this stuff (everytime I mention a symptom to my clinic their advice is 'come back and go up'). I work full time - 6 years at the same job and I have good friends (NO ONE KNOWS about this so I have no one to talk to about it - my boyfriend of many years passed away on Aug. 12th with end stage liver failure - he was in a nursing home for 2 years before that).

    I am having weird nerve problems. My nerves are sending electric shocks through my legs, feet and face and when I lie down at night it's awful. My ankles cramp, my feet hurt so bad that I have to get up and walk around - and then the pain subsides. My entire face is tingling and little electric shocks are running through my lips and tongue! I don't seem to be in classic withdrawal - it's the feet/leg/face nerve pain (of all things!).

    Can you just tell me if this is something I'm going to have to knuckle through? I told my clinic about it and they're suggestion was to stay there longer - and I'm never going back there. If this is a symptom of the withdrawal - I'll deal with it - but I'm scared about the next few days. I'm REALLY afraid that the methadone was covering up some kind of nerve damage. But I've had it since I dropped below 30 milligrams. June 21st was the day it started and although it's never gone away - it did lesson as I stabilized on each new dose.

    I am off until Thursday - and I don't know what I'm going to do if this doesn't pass by then.

    Have you ever heard of the nerve pain? I just need some support. I search for "nerve pain" + "methadone withdrawal" and nothing comes up. My clinic says they've never heard of it. I'm kind of freaked out.

     
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    Old 09-04-2005, 07:52 AM   #2
    cowtale
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    First off, yay for you! I don't really have advice on the nerve issues, I just wanted to tell you to hang in there. It gets better.
    I was on methadone for 4 years, 2 of which was detoxing. I went down about 3 mg a week, but I skipped my take homes and just took it everyother day. The clinic is making money off of you, thats is why they encourage you to stay on.
    I had a few problems that methadone covered up. My teeth were in such bad shape from methadone. I ended up getting 7 cut out last year. ( Been off methadone for 4 years, just scared of the dentist. ) Maybe you could see a doctor not affiliated with your clinic and get checked out. I have never heard of that, but everyones body handle things differently.
    Anyhow, sorry I didn't have the answer. I did want to tell you to hang in there. My body wasn't completely normal for a couple months, but I was able to handle day to day life. I could just tell I wasn't right yet. Hang in there!

     
    Old 09-04-2005, 08:25 AM   #3
    HelpInSeattle
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    Thanks Cowtale

    Thanks Cowtale. I'm so frustrated because I am having withdrawal symptoms - but the #1 problem is my stinging feet and legs and face. I am beginning to think that the methadone was covering this up. But I know if I go to a Dr. before I'm through the withdrawal (first of all - I couldn't) they'll chaulk it up to that and won't listen.

    I started walking again in April. The nerve pain started pretty badly on June 21st. I remember the day. I thought it was the withdrawal - but I have been a user since I was 17 and have never felt this pain. I'm actually worried that I've damaged nerves permanently from walking. I've dropped a ton of weight and 4 sizes, and this is the BEST I should feel in the last 10 years - not the worst! :*(

    If my feet weren't stinging and my arms weren't stinging and my face wasn't having little electric shocks running through it - I think I might be OK, but I'm really having trouble.

    I don't want to sound melodramatic - but I'm not sure if I can do this today. I will do it - I'm done - but it's really messing with me. I look on the Internet and everyone says a different thing about neuropathy and it's very frustrating. I guess all I can do is get through the withdrawal, wait a few weeks and see what happens. Time is moving VERY slowly.

    Quote:
    Originally Posted by cowtale
    First off, yay for you! I don't really have advice on the nerve issues, I just wanted to tell you to hang in there. It gets better.
    I was on methadone for 4 years, 2 of which was detoxing. I went down about 3 mg a week, but I skipped my take homes and just took it everyother day. The clinic is making money off of you, thats is why they encourage you to stay on.
    I had a few problems that methadone covered up. My teeth were in such bad shape from methadone. I ended up getting 7 cut out last year. ( Been off methadone for 4 years, just scared of the dentist. ) Maybe you could see a doctor not affiliated with your clinic and get checked out. I have never heard of that, but everyones body handle things differently.
    Anyhow, sorry I didn't have the answer. I did want to tell you to hang in there. My body wasn't completely normal for a couple months, but I was able to handle day to day life. I could just tell I wasn't right yet. Hang in there!

     
    Old 09-04-2005, 08:41 AM   #4
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    Is the stinging you are feeling similar to your feet waking up from being asleep? I do think you are right about the doctor though, you tell him you have been on methadone and he'll not take anything you say seriously. I would just give it a little time, I know its easier said than done, but you have came too far to turn back now.
    I'll be thinking of you and hope that your day gets better. I would just keep researching on the internet, something is bound to come up. Maybe do something to keep your mind off of whats going on with you, it might make you feel better.
    Methadone is a beast, give yourself a big pat on the back, you will beat it.

     
    Old 09-04-2005, 08:57 AM   #5
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    I think if I were you, I would go and see a compeltely different MD, if you can
    find a really good one. Maybe you could have some tests run?
    The people at the methadone clinic don't seem to have a clue what to tell you.

    I am sorry to hear about your boyfriend.

    You sound like a real strong person.
    I am sorry about the pain you are in, and like I suggested,
    I would REALLY think about going to an MD.
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    Old 09-04-2005, 10:05 AM   #6
    HelpInSeattle
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    First off - THANK YOU for responding to me. I have no one in my life that knows about this and no one to 'talk' to. Just knowing someone is out there helps so much.

    Maybe this is just my body waking up after so long? I FINALLY get off the program, loose a ton of weight and THIS is how I feel? It's VERY demoralizing.

    I've been having this neuropathy since June 21st. I remember the day it started and when I first started Googling it - I saw tons of scary stuff - and I actually went to a walk-in clinic (I never get sick so I don't have a regular Dr.). They took blood and everything was OK (no diabetes, my kidneys are fine, my liver levels are fine!, cholesterol, blood sugars - EVERYTHING was fine). There's no color changes, and no swelling in my feet or hands or face.

    It's a constant stinging - way worse then feeling like they're waking up and the three smallest toes on each foot are kind of numb - but I walk fine. When I lie down it's the worst. I wrap my feet really tightly in a small blanket and kind of meditate through the pain to go to sleep. When I sit up it's better and when I walk it's the best - but it's there 24/7.

    I think that combined with the fact that I'm just not myself - my arms are tingly, diarhea and I live very close to the Seattle Center and Bumbershoot is going on and I feel very isolated. Setting aside the nerve pain for a second - I was FINE until I came down to 5 mg. Then it all changed. I took almost 2 years to detox.

    How long is it going to take to feel right mentally? Even if I wanted to I couldn't go to a Dr. today. No way.

    Quote:
    Originally Posted by cowtale
    Is the stinging you are feeling similar to your feet waking up from being asleep? I do think you are right about the doctor though, you tell him you have been on methadone and he'll not take anything you say seriously. I would just give it a little time, I know its easier said than done, but you have came too far to turn back now.
    I'll be thinking of you and hope that your day gets better. I would just keep researching on the internet, something is bound to come up. Maybe do something to keep your mind off of whats going on with you, it might make you feel better.
    Methadone is a beast, give yourself a big pat on the back, you will beat it.

     
    Old 09-04-2005, 10:07 AM   #7
    HelpInSeattle
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    Thank you for the support - it does me a world of good. It's so frustrating to know that if I wasn't having this nerve pain things would be going fairly well. But maybe the nerve pain is keeping me focused on it instead of all the other things.

    I'm so frustrated. I'll stop complaining.

    Quote:
    Originally Posted by bluejulie5
    I think if I were you, I would go and see a compeltely different MD, if you can
    find a really good one. Maybe you could have some tests run?
    The people at the methadone clinic don't seem to have a clue what to tell you.

    I am sorry to hear about your boyfriend.

    You sound like a real strong person.
    I am sorry about the pain you are in, and like I suggested,
    I would REALLY think about going to an MD.

     
    Old 09-04-2005, 12:56 PM   #8
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    Hi Helpinseattle,

    your recovery so far, is awesome!!!!, keep going, it's going to get better....

    Both myself and my husband have Neuropathy, his due to severe brittle diabetis and mine due to nerve damage in my legs and left side.

    we are both takeing nurontin, at first, it did absolutely nothing and the tingly feeling and pain, almost drove me mad, but after about 6 weeks, I awoke one morning to NO PAIN AT ALL!!!!, it was, for me a miracle....my Dr said, most people don't stay on it long enough to allow it to fully work, because of the pain associated with nuropathy, boy can we relate to that one or what?

    Ask your Dr about this, it is not a narcotic and it does work, if you give it time....

    Angel
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    Old 09-04-2005, 02:57 PM   #9
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    Hello-

    I was having problem with electrical type jolts in my head also. I went to nerologist...I think that is the best type of Dr to address this type of thing. After many tests it turned out that I had a herniated disc is my neck and the herniation would cause the electrical jolt feeling when it was acting up or imflamed. I think my opiate use hid this issue for a while and it wasn't until I stopped that I felt the pain and other symptoms. I found the neurologist very thorough and what a relief to know what is going on!

    Good Luck. PS. I used to live in the San Juan islands...beautiful part of the country.

    Susan

     
    Old 09-05-2005, 12:54 PM   #10
    HelpInSeattle
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    5th Day off 10 years of methadone - Thanks for support!

    I'm on day 5. I don't know how to post this without sounding like a total complainer - but I'm not a happy girl (thanks to this board for at least letting me get these feelings out - it's amazing how much it helps). I thought I did this the right way and was so focused and happy until I got down to 5 mg! How can I be having this much trouble coming off FIVE milligrams? I know I was on it a decade, but I detoxed over 2 years, went down so slow and didn't use any of that time. I'm angry - but I've come way too far now.

    I've had bad diarhea for 3 days. I can't eat and emotionally I'm a basket case. Bumbershoot is going on at the Seattle Center and I feel very alone hearing people laughing and music. My boyfriend of 10 years died on August 12th and he was the only one who knew everything about me and I wanted him to know I was off this stuff. That's hitting me hard today too. I know this will pass - but I'm scared I'm not over the worst yet - but I don't want to trip on that either.

    Mentally I know it's GOT to get better. It's just a matter of time - I'm supposed to go back to work on Thursday and Friday - that's freaking me out.

    I'm trying to distract myself - but can't seem to concentrate and my feet are hurting really bad. I found a web site last night that recommends hops (with the pollen in them) as a help with neuropathy (you put them by your pillow or in your pillow and breath them - I hate beer though LOL) and I found a Dr. to do a phone consult that says that if the nerves are stinging and hurting - they're awakening. But it's not helping much to know that.

    Anyway - still here - haven't done anything stupid. I'm so glad I took the time off this week. Oh - my birthday is Wednesday - I thought this would be the best birthday present I could give myself - I keep focusing on the fact that NEXT year at this time - things will be 1000% better.

    Quote:
    Originally Posted by bent_halo
    Hi Helpinseattle,

    your recovery so far, is awesome!!!!, keep going, it's going to get better....

    Both myself and my husband have Neuropathy, his due to severe brittle diabetis and mine due to nerve damage in my legs and left side.

    we are both takeing nurontin, at first, it did absolutely nothing and the tingly feeling and pain, almost drove me mad, but after about 6 weeks, I awoke one morning to NO PAIN AT ALL!!!!, it was, for me a miracle....my Dr said, most people don't stay on it long enough to allow it to fully work, because of the pain associated with nuropathy, boy can we relate to that one or what?

    Ask your Dr about this, it is not a narcotic and it does work, if you give it time....

    Angel

     
    Old 09-05-2005, 07:26 PM   #11
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    Re: 4th Day off 10 years of methadone - Nerve pain!

    Still thinking of you! I do hope your day has gotten better. I'm sure tomorrow will be even better. You are doing a great job, hang in there.

     
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