Help from those taking Methadone - Restless Legs Syn...

Restless Legs Syndrome

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Help from those taking Methadone

Merny5 profile image
19 Replies

I need a shoulder replacement and is scheduled soon. I have been taking methadone to control my RLS. When I told my surgeon that I was taking methadone, he told me that he could not manage my pain. He said that anything that he gave me wouldn’t control my pain. He suggested to ask my neurologist or go to a pain clinic. My neurologist said that she couldn’t help me. So I’m looking for a pain clinic. My understanding is that if you take methadone other opioids won’t work for pain. Is this correct?? If that is true, if I go back to oxycodone for RLS wouldn’t that solve the problem? I just don’t know. I have to have something for pain after this procedure.

I’m sure I’m not the first to experience this issue, so I’m looking for the group for answers.

Much appreciated!

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Merny5
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19 Replies
ChrisColumbus profile image
ChrisColumbus

Sorry you haven't had a reply yet (and I regret that I have no knowledge - let alone expertise - in this area).

I did see this (Scottish) link, although it refers to long term users of methadone (I guess for opioid dependency) - while I think you've only used it for RLS for c 6 months. And these guidelines are currently under review:

handbook.ggcmedicines.org.u...

So this may not be relevant or of any use in your situation - but perhaps it might bump your question up a bit so that you might still get advice from someone who knows. Good luck!

ChrisColumbus profile image
ChrisColumbus in reply to ChrisColumbus

I also saw references to taking Oxycodone *alongside* Methadone: most cautioned against it because of the likelihood of respiratory depression, some said you could but there was no point, but a few said it was possible if doses were kept low. There were also some suggestions that a higher dose of methadone could help pain relief. But these routes would only be possible if your doctor/neurologist approved, and from what you've written that sounds unlikely.

Merny5 profile image
Merny5 in reply to ChrisColumbus

Thank you for your response, well wishes and the link to these guideline. It was helpful and a bit alarming. I’m still looking for a Dr. to handle my pain after surgery so we will see what is suggested. I’m thankful to have this information prior to an appointment.

Joolsg profile image
Joolsg

Hi Merny,

Methadone will cause you to be opioid tolerant so the opioids given during surgery and after will need to be adjusted. To say you can't have the shoulder operation while on methadone isn't correct. The pain meds will need to be adjusted to counter the methadone but you shouldn't have to stop methadone.

You maybe should get a second opinion.

Just search Methadone and Surgery and many articles come up. Maybe you could print them off and show to your surgeon.

Maybe he has never operated on anyone taking methadone and is wary.

Also contact rls.org as they will be able to help.

Merny5 profile image
Merny5

oh Joolsg, thank you so much! I never thought of contacting the RLS foundation. Great idea!

Nightmover profile image
Nightmover

I am hoping my experience helps alleviate some of your fears.

I recently had a hip replacement whilst on Methadone . I’m female ages 66 and had RLS until on Methadone .

I too was dreading the surgery due to the fear of post op pain and the stories I’d heard of not being given pain killing meds whilst on methadone. No doctor had actually told me these horror stories and I never asked thethis as in you case it’s just what I’d heard.

I did not ask the surgeon or doctor anything about post op Pauli was in hospital 5 days and given exactly the same pain killers post op as my female room mate who had a knee replacement (the same day as my hip surgery) but NOT on Methadone.

We were both given Endone, Palexia, oeste panadeine, anti- inflammatories, an injection to stop blood clotting injection and IV antibiotics/then tablets. I only had to ask for extra once during the night otherwise it was routine.

I am in Australia and Methadone does have a stigma here but in hospital I was treated the same as the Non methadone patient.

Hope this helps x

Merny5 profile image
Merny5 in reply to Nightmover

Nightmover, how much methadone do you take?

Merny5 profile image
Merny5

thank you nightmover. Reading about your experience helps ease some of my fears.

Nightmover profile image
Nightmover

I take 20mgs Methadone .. Which is a pain killer in itself. The other meds for pain post op (which I mentioned previously) work differently to opioids but they did give me Endone too which is an opioid. How much Methadone are you on?

Merny5 profile image
Merny5

yes, I looked up those medications. It appears that endone is similar to oxycodone. I take 5 mg of methadone. I have only been on it for 6 months. I also have severe arthritis and unfortunately 5 mg does nothing for the pain. The low dose doesn’t work perfectly for my RLS symptoms but it is ok for now. Thank you for your help. By the way,How is your hip doing?

Jetto profile image
Jetto

methadone works the best of all opioids for RLS pain

It is best to try all other meds first. The side effects of opioids is horrible, plus if you ever have to take prednisone, it destroys opioids and your dose will need to increase to stay effective, which sucks.

And as you found out once you are on an opiod pain most pain killers no longer work

Merny5 profile image
Merny5

thank you jetto. I think I have tried all medication, all homeopathic remedies and insanely ridiculous “tricks” to alleviate RLS symptoms. I wasn't aware of opioids destroying the effects of steroids, interesting.

Greenleaf360 profile image
Greenleaf360

I'm going to ask my doctor. Itll be next week before i get an answer.

Chrs

Merny5 profile image
Merny5 in reply to Greenleaf360

thank you greenleaf360!

Cedarish profile image
Cedarish

I am 79, also had two hip replacements within last year here in Canada, last one in May. I’m currently on methadone 10 ml daily for years. (See my other post tonight, under question about methadone and weight gain, for a longer history.) Both anesthetists were very attentive and willing to consult their colleagues and discuss pain management at length with me. I had spinal vs general anesthesia, which my surgeon feels also helps with the pain. Bottom line: methadone for RLS is usually, like mine, at so small a dose, they felt they would simply treat me the same as any other patient, using regular opioids and other analgesics and adjusting according to my pain level. They did so and I had no problem. I walked out of the hospital with minimal discomfort on both occasions, less than 24 hours after going in. I am now walking an hour a day, up hills, too - doing recommended exercise faithfully is, I think, so important. Best of luck, I feel sure you will be fine! ( I still have most of the pain meds I was sent home with.)

Merny5 profile image
Merny5

wow, that is an amazing story and encouraging. My surgeon never did ask me how much methadone I was taking. So perhaps they can treat my pain like they did yours. Thanks again!

WelbyB profile image
WelbyB

I am a severe RLS patient who had replacement knee surgery two weeks ago. The plan was to switch from 15mg Methadone to 10mg Oxycodone q4h after surgery. I don’t think it worked to manage leg pain. However, for some reason, the RLS was not bad during the first 10 days. But now that the knee pain is better, the RLS has returned. I think Methadone is better for RLS, but still not that great. I am not taking any other medications now except Oxycodone during the day and Methadone at night

This thread poses some interesting questions. Does chronic Methadone use cause Oxycodone to be less effective? Does another type of pain trump RLS pain?

Merny5 profile image
Merny5 in reply to WelbyB

WelbyB, so you only had 10 mg of oxycodone for pain???

I do think that methadone use causes Oxy to be less effective, I don’t know for sure. When I told the surgeon that I was taking methadone, his response was “ whatever I give you, it won’t help your pain” He then told me that I need to see a doc from a pain clinic.

Good luck with the new knee!

WelbyB profile image
WelbyB in reply to Merny5

Thank you. It helps just to know that someone else understands the pain and frustration. I think just taking more methadone rather than Oxy for the knee pain may have been a better plan. I experimented with more Oxy and acetaminophen, but it didn't help. I have a very good RLS specialist who will help me get thru it.

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