Pre-surgical help needed please - Restless Legs Syn...

Restless Legs Syndrome

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Pre-surgical help needed please

Bganim1947 profile image
8 Replies

I’m a long-time member here and need some medication guidance. I had a severe case of RLS that needed to be kept under control by staying on my combination of Tramadol (100 mgs x3X/day) and Pregabalin/Lyrica (100 mgs x3X/day). My surgeon said I could stay on Pregabalin, but not the Tramadol as it wasn’t strong enough to quell the post surgical pain. Instead, he wanted me on Oxycodone, 10 mgs every 4 hrs. He said it would do the same job for my RLS as the Tramadol. It didn’t.

The next day my RLS was back full force making the surgical knee feel much worse, because I couldn’t stop moving my leg.

As the next 3 weeks passed, I was beside myself with pain made much worse by my RLS in both knees—triggered by the swelling in the surgical knee and the other knee was swollen too because it was over worked trying to support the new knee. It got so bad that I had to take diazepam a few times to calm myself down.

My nurse practitioner told me oxycodone could not control my RLS, because it does not connect to the same brain receptors as Tramadol.

Meanwhile, I was off my Tramadol for 17 days — made even worse because I was also going through Tramadol withdrawal.

I am about to face this surgery again for my other knee. Does anyone know if there is another kind of strong pain reliever other than oxycodone that I could take and still be able to stay on Tramadol? I’m feeling desperate—I don’t want to go through that pain plus suffer from RLS again.

Recommendations please.

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8 Replies
LotteM profile image
LotteM

I am sorry to read this, B. Your doctor was right though, and incidentally the nurse practitioner was wrong re oxycodon for RLS. Although she was largely right about the different receptors. Most often tramadol can be swapped for oxycodone. But apparently not for you. Or the oxy dose was too low to do both jobs.

Have you asked why it couldn't be combined, the tramadol and oxycodone?

Please do relate to your doctor what happened post first knee surgery. Be adamant that it didn't work for you that very likely the surgery made the RLS worse. S/he should have been in touch for follow up after the surgery.

Meanwhile, I hope both the post-op pain and the increased or less controlled RLS will settle a bit soon. Do you have the pills available (both tramadol and oxycodon) to take one or two extra pils to see if that works?

Bganim1947 profile image
Bganim1947 in reply to LotteM

Thank you LotteM, good advice. I do know the oxy dose was too low, because the visiting nurse had to call him the surgeon the next day post-surgery to let him know that the dose was too low – initially 5 mg.He did increase the dosage to 10 Mgs. I did feel a little bit better pain wise, but it didn’t help my RLS. It came on immediately post surgery. I think you’re absolutely right the dosage was too low to cover both pain and RLS. Thank you for that. I see the surgeon Monday, I will talk with him about the possibility of increasing the dose or doing something else. I’m not going through another surgery to face three weeks misery. Thank you so much for your help and advice.

TEAH35 profile image
TEAH35

Like you Tramadol helps me, altho I know not everyone. Bad break with the Oxycodone, I've only had to use a couple of times, but was ok. So sorry for you. I have just posted a question pertaining to this very topic.

Nikos64 profile image
Nikos64

So sorry you went thru this. I am also on 100mg Tramadol for RLS. Recently, I sustained a herniated disc. I was given hydrocodone for pain and advised to take it instead of Tramadol.

Big mistake. The hydrocodone despite being a more potent narcotic than Tramadol was way less effective for the RLS.

Jumpey profile image
Jumpey

Hi ,I'm wondering whether your RLS was made worse following surgery in part because of anti- nausea meds that are routinely given. They trigger RLS symptoms. I had surgery recently and asked for Zofran which is kind to RLS and I had no problems. I was also given Fentanyl for pain and it also helped my RLS symptoms. Huge good luck. X

Tanker1 profile image
Tanker1 in reply to Jumpey

I'm sorry you are going through this. I had knee surgery in late January and my RLS/PLM got much worse. I kept taking my 1800 mg of gabapentin per evening along with 5 mg of oxy every 6 hours. This helped at first but after a couple of days my leg twitching (PLM) and spasms became quite unpleasant. I worried that I was going to damage the repair but the doc assured me I would not damage it (he was right). My leg was locked out in a brace which was borderline unbearable. More oxy and an occasional ropinerole helped me to get some sleep. The bit of hope I can offer is that my symptoms subsided after about a month and now actually seem better than before surgery.

The list of meds I was given for surgery is rather long so I don't know which drugs were the problem. I'm annoyed with myself because I didn't think to discuss this with the anesthesiologist.

TajarTales profile image
TajarTales

I have severe RLS and had both hips replaced in 2019 (5 months apart). My surgeon kept me on gabapentin, and also gave me tramadol for the pain. It worked very well, and I was able to walk shortly after surgery. I have heard that the knee surgery is worse, though. I hope you can convince your doctor to do something differently so you have fewer problems next time.

ircam2112 profile image
ircam2112

I’ve been thinking and researching a bit on your questions and concerns and I basically find it a tough one to figure out. In the US, according to drugsdotcom 300mg Tramadol is the maximum daily dose and there is considerable risk in adding an additional opioid on top of that, which is probably why your surgeon did what he did…not that it makes it any easier. My only suggestion is, as you’ve likely built some tolerance to Tramadol, maybe you could ask about temporarily taking an additional 50 mg as needed for pain up to a max you can agree on.Not sure when you had your surgery but I’d be concerned that if things go like last time, that will put a lot of pressure on the knee you had surgery on already, so I hope it’s been a while and you’re feeling strong on it. Also, I was wondering if your surgeon had you go cold turkey with the tramadol? If so, that is really awful and dangerous. I’m really sad you had to go through that. I would want to take probably 2-3 months to dc it if I’d been on it a awhile. Withdrawal symptoms are no laughing matter and I’ve ended up in Urgent Care X2 because of doctors who thought it was no big deal to discontinue chronic use over a week or two. Aug.

Another thought is to begin to slowly taper down on tramadol 3-4 weeks before your surgery (say 75mg/week) with the idea that you’ll discontinue it completely 2-3 days prior to surgery. As you do that process (maybe when you’re down to 150mg Tramadol), is to slowly add a longer-acting opiate like Oxycotin + low dose Requip to help provide some RLS relief - I think a combo is more likely to be effective and maybe it’ll be better than Oxycodone. Then, post-surgery, you could continue to take the Oxycotin (8-12 hr half life…better for nighttime pain) as you recover and, it leaves room to get some benefit from adding a short-acting opioid like Oxycodone 10-20 mg post-surgery, as needed for acute flare-ups. Then as your pain decreases post-surgery, you’d do the exact opposite process i.e.) taper off the Oxycodone slowly (10 days >14 days, depending on how long you stay on it), begin tapering slowly off of the Oxycotin (2-3 weeks as you’ll have been on it longer) and as you do that, towards the middle of the Oxycotin reduction, begin scaling up on the Tramadol again to your pre-surgery amount hopefully taking the last Oxycotin when you’re at around 150-200mg Tramadol. I would continue to take Requip through this process, again with slow tapering up and down. Taking extra-strength Tylenol through the entire process can help too. I’ve found 2, 650mg, 8hr Tylenol Arthritis Pain at bedtime to be really helpful with my back pain and definitely sleep beter. The better your sleep, the less pain you will have….so I would take it nightly. With a 3000mg/day Tylenol max, that would leave you 1700mg to take during the day and when taken with the short-acting opiates, is more effective than the opiate alone.

If it were me, this is what I would propose to your surgeon and also would propose delaying the surgery if needed to institute it properly. I think it’s a pretty good balance between managing all the various factors - the withdrawal symptoms, the RLS, the acute post-surgical pain and minimizing safety concerns as it seems to me that you’d never be at a point where you’d be taking more risks that adding an opiate to your current dose of Tramadol. I’m sure you’re aware, but “staying ahead on the pain” is really, really important

I hope you continue to have Valium. If not, I’d ask for a limited supply.

Not sure of course if the doctor would allow you to try this but maybe worth an ask and to have them justify their concerns, if any. I hope the best for you. Let us know how it goes in this thread if you would and please PM me or here if you’d like more input.

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