Nerve Damage

Hi everyone,

I have been concerned about a recent post from a fellow sufferer who has sustained serious nerve damage from long term use of opiods. I have started to use codeine over recent months. The idea of causing myself severe neurological pain in the future if I continue to use this drug has caused me some anxiety. I know that lots of people on here take opiods and wondered if anyone else who has taken them for a long time has experienced any nerve damage or pain. Sending love to all who struggle with this challenging disease. x

39 Replies

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  • I would have the same concern. I'm on Oxycontin (15mg pd) for the last five months and would hope to remain on it forever - unless a better alternative appears.

    In all my extensive research on opiates for rls , I've not come across nerve damage from low dose (under 30mg pd) Dr Buchfuerer has patients on this regime for 20 years without problems.

    If you have real concern , I'd be inclined to write him (email)--- look him up on -- rlshelp.org . There is a tiny button somewhere on the LHS that lets you do this. He generally replies within 48 hrs and its free.

    I'll be very interested in his reply , so would appreciate if you shared that with us. Thank you for bringing this up.

    Good luck.

  • Madleg, i am going to put Dr. B's link to his website on again, as yours is not showing the highlighting to click on it. rlshelp.org

  • Cheers for this. I am already in the process of contacting him. I can't find his email address on the website so have asked for it to be sent to me. I will share when I've managed to get an answer.x

  • Just write in that email box.

  • I'm not sure where you mean?

  • Ah I get you now! I had/have tried numerous times but it won't let me in for some reason.

  • I'm getting in ok! mjb is who its addressed to. That's correct.

    Maybe try again

  • Hi Madlegs this is what Dr. B. replied to me:

    ""There are very rare issues only associated with the long term use of opioids for RLS. In fact, several of us experts are currently writing a paper regarding the safety of opioids for RLS used in the long term.

    I have never heard of anyone sustaining nerve damage/pain from taking opioids, but of course anything is possible.

    Alternating drugs as you are doing further reduces the risk of tolerance/dependence (and other problems) from occurring so that it is a reasonable plan. However, you probably would do just as well taking codeine 30mg daily without any interuption."

    I find this reassuring given his long experience in this field.x

  • Oh! That's so reassuring. Interesting - his comment re codeine. I'll bring it up with my own doctor. Or maybe wait until that paper comes out. I presume it will be published on his site?!

    Well done for persevering with contacting him and thanks for sharing his reply.

    That's what makes this site such a powerful tool - like an ant colony- everyone working away and sharing.🐜🐜🐜🐜🐜🐉

    I hope you are reassured and happy to continue in your progress to containing the restlessness.

    If I may ask- what dose of codeine are you on and what alternating do you practise.?

    Someone else on this site also does that but never answered when I asked 😢

    Cheers.

  • You're welcome! I found it comforting too! He didn't say where the paper will be published-the above is the full extent of his reply. I take 30mg of codeine nightly for 5 nights a week( with 2 days off) for a month. The following month I take 10mg of diazepam nightly for 5 days a week with the same 2 nights off. I have found that this regime keeps both drugs effective and minimises tolerance.x

  • Great to know you emailed Dr. B and as always he replied and you got the best information back. I would trust what he says above any doctor. :)

  • May I suggest that Dr. Buchfuerer simply post his professional opinion on long term opioid use and its neurological side effects here, and have that post be easily accessible for all, given that so many readers have used, are using or will be using these drugs for symptom relief.

    Personally, I have voiced my concerns/complaints about the side effects that are known to me, as well as the short and long term effects that I need to know about to my physician every month for the last year ( I must personally see him in order to get a refill Rx for methadone), and they have fallen on deaf ears.

  • Hi Arksoto. You may like to contact him to suggest that but my guess is that would be unlikely-although I may be wrong. That's really bad that your doctor won't take your concerns seriously. I have found this with some doctors too-they simply say that all drugs have side effects. You may get more help from a sympathic pharmacist.x

  • ARKSOTO Dr. B is not a member of this forum and probably doesnt know it exists. He has is own website and support group and if you need to then email him yourself and get his answer to you personally. rlshelp.org

  • Please try not to worry too much. I was on various opiates for over 20 years and I've had no damage(dependence yes) yet nothing that you mentioned. I suggest it may be down to something else rather than opiates. If in doubt....ask your doctor as I'm no professional. Hope that helps a little anyway. J

  • Thank you so much for the reassurance. Can I ask what you took and in what doseage?x

  • Of course. I was on dihydrocodeine 30mg. Tramadol and zomorph. I also had oramorph for breakthrough pain once I took myself off the dhc's and tramadol. Dhc's and Co proxomol I had initially then co prox was taken off the market due to accidental overdoses. It was replaced with tramadol. Coming off everything was a living nightmare and that's the only problems I suffered with opiates. Sorry....constipation, everyone's different aren't they? So I'd chat to your gp if you are still worried. J

  • Thanks for this. I appreciate it.x

  • Hi I use oxcodone , but I have server RLS and I'm scared

    I have liver test and all ok , but took 40 mg ever four hours but nothing's help today

    Jumpey

  • What other medicines are you taking? That dose rate is way too high for just restless legs. Also if you are on oxycodone long term then you should be on slow release ( Oxycontin ).

    Go back to your Dr and get that sorted. Do you suffer from any other ailment?

    Cheers.

  • Hi I take 20mg or 30 but I have bad back and cluster headaches, but they have given me clamazapain for RLS . It runs in the family , dad who I lost when I was 21 ... My brother and me, my four other sister got away with it thank god

    Sorry to here about you x

  • I take OxyContin ATM 60 mg per day along with Madopar250mg X 2 per day for severe restless legs. I have tried every drug ever made over about 20 years, and although some worked for a while, everything I take looses effectiveness. I've been taking the OxyContin now for about 2 years & the biggest problem for me is that I have to keep increasing the dosage , obviously my Dr supports me in this but is starting to worry now as we are getting a bit high in dose. Does anyone else take it in this sort of dose ? I'm grateful for any advice, this condition has ruled my life for a big part of it. It gets me to a point where I have serious depression due to sleep deprivation & feeling like I can't enjoy life , things like movies,drives,meals out or even being able to sit or lay down for a rest are all impossible for me. Thanks for any help.

  • Hi. In order to tackle -.tolerance I take codeine-30mg -nightly 5 times a week with 2 days off for 1 month. The next month I take 10mg of diazapam nightly for 5 days with 2 days off. I then return to codeine and alternate monthly. At the moment this is working. Hope this gives you some ideas which will suit you.x

  • Jumpy I like your theory as a way to avoid tolerance. May I ask how you cope on the 2 nights per week with nothing ? I'm sure I'd be climbing the walls.

  • Well I'm retired so I'm lucky enough to be able to choose nights I'm not doing anything early the next day. I take iron and mag and just cope with what comes. This would be so much harder if I worked.x

  • Madopar is a levadopa drug (sifrol) so I suspect it is that that is causing augmentation - not the Oxycontin.

    You could write to Dr B as advised above describing in detail your dosages and see what he thinks.

    My view would be to get off the Madopar and see if you can lower the Oxycontin after that.

    Good luck. Are you in Oz? There are some good competent rls Drs out there!

  • Really ? I am in oz & can hardly find a Dr that knows anything about it.could you give me some contact details. Thank you

  • If you pm Pippins- she has a list of rls griendly drs. There was a poster here a while back looking for such in OZ and got three recommendations. I was very impressed.

    Goodluck.

  • Also try -- patsy11011 -- he/she posted three years ago about a top rls specialist in OZ - although I know its a big country and may not be convenient.

    I looked for another post that got three referrals , but can't locate it.

    Good luck.

  • Thank you

  • Jumpey I have been on 10 mg of Zomorph (slow release Morphine ) twice a day for several years for back pain. I increase this to 40 mg for a 2 week period 3x a year to get me through my drug holiday from the Neupro patch. Prior to Zomorph I took Tramadol and years ago Dihydrocodeine. I have not experienced any nerve damage from the opiates. .Pipps x

  • Thanks for this info Pippins. That's reassuring.x

  • I haven't mine is so server as well as back pain from horse fall but I can take 40 mg for both pain and not touching it some days just wish , well I don't want to get older then 35 with this x

  • I take TRAMADOL which is considered NOW an opioid, it wasn't before a couple of years ago because it's synthetic. I've been on it for six years for the RLS with great results for me. I take 2, 50 mg pills starting with one at 5:30 pm and the other at 11:30 pm. I have not had any nerve pain, I hope it won't happen, and so far I haven't heard of anyone with the pain either. Maybe the person that posted has another problem such as neuropathy which is caused many times by diabetes and other ailments. I'm sure you will get many responses with this question. For the time being stop worrying yourself if you haven't experienced anything. I used to take codeine for migraines many years ago , but it affects my stomach. Worrying will only make you develop a nervous breakdown for something you don't even have. I'm curious to see other answered since there are so many here with a lot of knowledge that I don't have.

  • Thanks so much for the feedback and advice. I have a concern- I'm not having a breakdown-lol.x

  • Hahaha, that's good to know. I guess when we have a problem everything is a concern, just sayin. I pay attention to what others have to say because you never know what's goung to hit you one day.

  • Thanks for your kind concern.x

  • Hi Jumpy. I don't know what happened to this fellow. How much was he taking? Well, I've been on a pretty hefty dose of a codeine compound for twelve years. No side effects. But, ask your doctor.

  • I don't know the dose. Thank you for that feedback. I hope that continues for you.x

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