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[Goose1955]

Good morning all

I have recently had two total knee replacements, June 2017 and February 2018. The first TKR was a nightmare, the pain was horrendous., the second not as bad. Consequently I was on high doses of morphine for about 20 months. Coming of morphine wasn’t easily and this is when I started having bouts of RLS during the day when I relaxed but mainly at night.

I thought my RLS was part of the withdrawal symptoms however I have been told this is not the case. I also suffer from muscle cramps and muscle pain in my legs. Add to this a burning scolding sensation around my feet and ankles makes life pretty miserable.

I take 200 mg of Quinine Sulphate, 2mg Rotigotine patches and 210 mg of Fumarate daily which helps a bit.

Having watched the TV program the other night I feel very lucky my symptoms aren’t as bad as the unfortunate people on the program.

Anyway I suppose by joining the group I am looking forward any advice and help that is available.

Many thanks

[Madlegs1]

I don't know who told you that rls is not part of opiate withdrawal.

It is actually the main effect.

I firmly believe that most people who "get" rls after a major operation, actually are suffering classic withdrawal symptoms. ( That was my own experience- I always suffered mild rls, which could be managed by avoiding triggers, but after major spinal surgery, and 18 months of Fentanyl, I experienced devastating rls, and quickly got back on Opiates)

I don't have the guts to try to get back to my original rls situation. Maybe I wouldn't anyway, but at 72 I'm happy where I am.😆

I can't comment on whether your medications are causing your rls-- I'm sure someone will contribute.

All the best.

[Goose1955 in reply to Madlegs1]

Thank you for your very interesting reply.

[Joolsg]

RLS is a classic symptom of withdrawal from opiates so I have no idea why your doctor said it isn’t. It’s supposedly the main reason heroin addicts relapse- they’d rather keep taking the drug than suffer the withdrawal RLS.

Did you have RLS before the operation?

The only way you will know for certain would be to withdraw ( slowly and under medical supervision) from all the drugs you are taking.

[Goose1955 in reply to Joolsg]

I had RLS occasionally before my operation mainly Sunday nights if I fell asleep in the afternoon after my Sunday lunch.

[Hidden in reply to Goose1955]

Even if you did have RLS before, it sounds a lot worse now. So it could be that you have RLS to the same degree as before PLUS the effect of Opiate withdrawal on top.

Ideally, if the RLS before surgery was mild, then you could aim to get back to that and avoid having to take any medication.

Opiates do increase dopamine levels in the brain and the brain gets used to this. If you like you could say the brain gets lazy at producing dopamine for itself. Take away the opiates and you're left with not enough dopamine, which, amongst other things, can cause RLS.

If you went "cold turkey" i.e. just stopped taking the morphine or withdraw too fast then it's more likely to be contributing to your current problem. This is also worse the longer you were taking the morphine.

You also now have the additional problem of taking a dopamine agonist (Rotigotine). You can't just go cold turkey with that either.

It's not within my knowledge or experience to advise you how to deal with this.

I imagine some might say you need to go back on an opiate, (not morphine), withdraw from the Rotigotine, then withdraw from the opiate. Or vice versa. Not both at once.

I've had my own experience of being told by a doctor that I'm not suffering withdrawal symptoms. Which is rather ignorant of them. You can't however, expect a "General" practitioner to know everything.

I suggest you get as much information as you can about opiate withdrawal and RLS and take it when you go and see a GP.

If you get a negative response, see another one.

I hope this helps

[Goose1955 in reply to Hidden]

Thank you for the advice

[Hidden in reply to Goose1955]

No problem.

Hope you get sorted.

[rls_optimist in reply to Joolsg]

That's interesting. I hadn't heard that RLS is a classic effect of opioid withdrawal. Do you know why that is? Is it a temporary effect that resolves after withdrawal, or does it persist? Could it be that the opioid was masking pre-existing RLS and then it re-emerges after stopping the opioid?

[Pippins2 in reply to rls_optimist]

rls optimist if you Google rls following opiate withdrawal there'squite a bit of info /studies etc cited and discussion as to whether this is a separate condition to "normal " rls. It also goes into why this may occur. The same applies sometimes when withdrawing from illegal drugs and alcohol. Some interesting information but sorry being a techno phobe I can't do links! Seems that the term "kicking the habit " comes from this. My hubby has never had RLS in his life (he is aged 67 ) but 2 years ago he was on Oxycodone for several months for back pain. He stopped them abruptly (against my advice! ) and got RLS for 3 nights. It was quite mild RLS and it went away completely after 3 nights but it is an example I know of personally x

[rls_optimist in reply to Pippins2]

Thanks, Pippins. I did the gabapentin google search, and found that nearly all of the studies I read dealt with short-term RLS that resolved after withdrawal (like your husband, blessedly). There was one (the link that Jools provided) that discussed three cases where the withdrawal-induced RLS persisted somewhat longer. But even there, it resolved in about 6 weeks.

[Joolsg in reply to rls_optimist]

ncbi.nlm.nih.gov/pmc/articl...

It normally stops once through withdrawal but there are a few cases where it persists.

Article above mentions it.

I suspect similar things happen during pregnancy. So many of us had RLS during pregnancy which never goes away. Maybe dopamine receptors are permanently damaged or affected in some way?

No idea why opioid withdrawal causes RLS but pretty sure it will have something to do with dopamine receptors.

[rls_optimist in reply to Joolsg]

Thanks, Jools. Interesting. They do mention that both endogenous dopamine and endogenous opiates are reduced in opioid addicts. So it would make sense that RLS could kick in after eliminating the external opioids.

The authors use the fact that administering ropinerole alleviated the RLS symptoms in all 3 subjects. However, they gradually eliminated the ropinerole after 6 weeks or so "uneventfully". I took that to mean that the RLS had resolved in all 3 subjects. So, yes, RLS did arise and persisted when withdrawing from opioids, but not indefinitely.

[rls_optimist in reply to Joolsg]

RLS taking up residence following pregnancy is puzzling. It would be great to see some research done on that.

[Joolsg in reply to rls_optimist]

I agree. I’m convinced it has something to do with anaemia during pregnancy, which then triggers RLS. Why it doesn’t resolve after pregnancy and when iron / ferritin levels return to ‘normal’ is worthy of study.

I’m seeing a haematologist in June to try to get an IV iron infusion. I’m trying to raise my serum ferritin above 250/300 by taking oral supplements and skin patches but want to try the IV route. Research is being done in the USA on iron and RLS but I agree that more research is needed.

[rls_optimist in reply to Joolsg]

Good luck, Jools, I hope you're able to get an IV iron infusion. There is one iron formulation, ferrous carboxymaltose (InjectaFer here in the USA, maybe there, too), that has the best evidence for both safety and efficacy. This is according to the year-old current gold-standard paper on evidence-based and clinical practice guidelines on iron treatment for RLS, by many of the RLS experts:

sciencedirect.com/science/a...!

They recommend 1000 mg, either all at once or split into 2 doses a week apart. I've now had two infusions (one last Summer, one in December). It took both infusions to get my ferritin level to stay over 300 without dropping back (as it did after the first, to 150]. The infusions have made a major difference for me, as measured by the significant reduction in meds I need, and in the blessed ability to live life without DAs of any kind.

I will post a full report soon on the specifics, once I've reached a stable level for my remaining meds. I should get there within a week or two. Good luck!

[Joolsg in reply to rls_optimist]

Thanks so much. I have the info on iron infusions from the USA foundation. Injectafer is Ferinject here in Europe( no idea why they reverse the name!).

I’m really pleased to hear it’s working so well for you and I hope that the haematologist I will be seeing is ‘open to persuasion’ and science. I intend to print off the articles from Johns Hopkins and Mayo clinics and RLS foundation.

Neurologists here refuse to believe iron infusions will help- I think we’re decades behind the top US RLS experts, but I remain hopeful.

I can get an IV infusion from a private clinic but not the formulae that are helpful.

[rls_optimist in reply to Joolsg]

Even if you can't get Ferrinject at a private clinic, whatever they do have may very well be better than nothing.

[Sara_2611]

Sorry to hear that . Welcome to the group Youre in excellent company

[Hidden]

Just like rls_optimist, I also never knew that about RLS being a symptom of opiate withdrawal. This might be something worth bring up to my mom, who recently had her second knee replaced and is now having no choice but to struggle through another opioid withdrawal. Unfortunately, she’s on an opiate for a longer period this time around since she suffered a complication....

Thanks for the info. guys!

Welcome goose!

[rls_optimist in reply to Hidden]

If she withdraws slowly and gradually, it might help stave off and maybe prevent any resulting RLS. Good luck to her!

[Hidden in reply to rls_optimist]

Thank you and thank you for this advice!

I sure hope her pain subdisides soon! I’m assuming that the longer she’s on it, the greater the chance....

[Goose1955]

I came off morphine gradually over a period of about 6 months. I was taking 80mg of Zomorph a day reducing by 5mg at a time. I’ve been totally off it for about 8 months now.

Thank you all for your comments, lots off interesting information to digest.