Can a neurologist help an RLS patient post -op from a total knee replacement surgery? Anesthesia and the leg trauma aggravated RLS 5 weeks! Now I need a revision knee surgery and dread the sleepless nights while it's supposed to be critical rest and healing time. I am using 600 mg Gabapentin along with .5 mg Clonazepam and 5 mg melatonin plus iron/C and magnesium nightly. That's a lot, and not enough to control RLS post op. Same thing happened a year ago for my hip replacement surgery. Help please!
My neurologist is very good, but am not sure how much experience this dr. has with my concerns.
The anti nausea drug given after surgery is usually the problem so discuss with the anaesthetist and surgeon. Zofran is a safe alternative.
Hope it goes well.
Hi, I don't know how it is with your neurologist. It's only a guess, but judging by the use of the personal pronoun, "my" neurologist, you're in the US. The significance of this is that in the UK we don't possess neurologists we have to be referred to them and unless you're able to pay them privately or pay private health insurance on top of the taxes we already pay for health care you don't get to see them for months.
So, if if I'm wrong and you do live in the UK, unless you can pay upfront somehow, by the time you get to see a neurologist, it might be too late to help.
That's assuming of course that they can help when you do see them.
Sorry about the negativity, it's really annoying that RLS is not a priority for doctors in the UK and that includes neurologists.
I wonder how long the exacerbation of your RLS symptoms lasts after surgery. Psychologically it would be terrible to think it would last indefinitely, it must be terrifying enough as it is.
I suggest you might look into the possibilities before attempting to see a neurologist even if you can do that relatively quickly, not every neurologist is an RLS specialist.
You could contact someone who is a very reputed RLS specialist Dr M Buchfuhrer. You can contact him through this web site. Click the yellow button on the left hand side to email.
I am NOT an expert, but I'm guessing he might suggest the use if an opiate. Maybe not. That would be a choice you'd have to make and a prescription might be difficult to get, but it's well worth making an inquiry.
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Thank you Manerva. Yes I am in the US -it was private insurance and can get in for an appt within a month. The dr is an expert in RLS that is why I looked her up a couple of years ago and got very good care. The tricky part is the surgery issues. Last post op RLS lasted 5 weeks with leg jerking much of the night. Here surgeons give about 2 weeks of prescription narcotic pain meds for surgical pain upon discharge from hospital. Thereafter pain is managed with over the counter Acetametphin and Ibuprophen. That was my experience and what other joint replacement patients have told me.I have a new surgeon now and am waiting almost 2 and a half months for the next appt as this guyis extremely busy.Will discuss the RLS.
I had a primary care doctor who once told me that she had not ever heard of RLS and that in her country of origin the people dont suffer from RLS! I was unable to believe that statement.
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Hopefully, if agreeable your neurologist can prescribe you opiates for longer than 2 weeks.
I'm sure there will be people with RLS in your primary care doctor's country, just that she is clueless about it as, probably, so are the poor people suffering from it.
I hope all goes well.
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Thank you for the website based in southern CA. It was enlightening to read the many pages and sections. The MD from the website is not a neurologist, and that fact is puzzling. I had the mistaken impression that doctors treating RLS are neurologists!
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RLS is a nervous system condition and sometimes is described as a "movement disorder" so it can be considered to lie within the field of "neurology". Sometimes it's described as a sleep disorder which lies in the field of "somnology".
Both fields include many things that aren't related to RLS. Additionally there are specialities within the speciality e.g. an epilepsy specialist, a dementia specialist and so on.
Just because someone's a neurologist it doesn't necessarily mean they know anything about RLS. Similarly, being a somnologist doesn't mean someone knows nothing about RLS.
The best person for dealing with RLS is someone who's an "expert" in RLS. So whether they're identified as a neurologist, somnologist or whatever is largely irrelevant as long as they are medically qualified.
If the MD you're referring to is Dr Buchfuhrer, he has a huge reputation for being both very knowledgeable about and having lots of experience with dealing with RLS. The combination of knowledge and experience makes him an "expert". There appear to be very few well recognised experts in RLS globally. Judging by my experience of neurologists hardly any neurologists are RLS experts. It doesn't mean they aren't, it doesn't guarantee they are.
I tried Dr. Mark Buchfuhrer last year with Methadone, all the opiates. Unfortunately it didnt help my RLS much. I was so disappointed. Did he help anyone else out there who had a positive experience??
I'm so sorry that opiates didn't work for, it must have been, as you say, very disappointing.
The reason I mentioned Dr B is because so many people on this site have praised him and by all accounts he has all the hallmarks of an "expert".
I can't say for myself that I've personally had a positive experience of him in relation to opiates for RLS.
I did go on the web site and sent an email about my case. I received a response back within 24 hours with some advice and references to some evidence to support the advice. I viewed that as a positive experience although I've never taken an opiate for my RLS.
Although I can't actually give you references for it, there does seem to be evidence to support the successful use of opiates for "refractory" RLS. This means RLS that hadn't responded to all other treatments.
Personally then, I would only consider using an opiate if all other treatments have failed. As yet, I haven't reached that point.
One thing I can suggest is IF you haven't tried all other treatments first, then you do try them.
Another is that you explore the possibilities that either it isn't actually RLS you have, but something which mimics it. OR that you have secondary RLS caused by something else.
Medicines are sometimes used diagnostically. This means that when a particular disease is suspected then as part of diagnosing it a medicine which is known to work is given. If the medicine works, it confirms the suspected diagnosis. If the medicine doesn't work, then the diagnosis may be wrong.
No he did not help. He did answer my email but said he couldn’t think of anything that might help. I had severe RLS . I was very disappointed. This forum and the wonderful Madlegs, hooks and Sue Johnson are better than any so-called medical expert When I became suicidal some years ago , a wonderful Iranian Gp found me a sleep specialist who gave me Methadone which was helpful for 3 years. It is no longer working. I am transitioning to buprenorphine. So far it’s not useful but one has to hope
I am 88 and live in Australia. I wish everyone quiet legs and good nights sleep.Wairoa/ Mahia36
Hi, I have RLS. I take Requip at nite. But, I, also, am aware of nightshades veggies. They cause RLS. The closer to evening you eat them the more trouble you have. So, I try not to eat anything with nightshades veggies past 5 or 6 pm. Heating pad will also help on your legs.
The problem with Ropinirole is that like other dopamine agonists, there is a risk of augmentation and impulsive behaviour disorder. Many doctors now, I believe because of this, prescribe Gabapentin or Pregabalin as first line treatment for RLS.
Since joanrls is already on Gabapentin, which isn't sufficient after her surgery it seems to suggest she needs something else for the post operative period. It also suggests that a dopamine agonist wouldn't really help either. It could make things worse.
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You are right. I had Ropinerole for a couple of years and was glad to get taken off that gradually.It was not appropriate for my case.
In view of your history, you will need an opiate, preferably methadone which is long-acting (24 to 28 hours), non-euphoric and highly unlikely to cause addiction.
This is a link to the RLS Foundation in the USA. (I should not share this paper as it is for members, so I advise you to become a member - it is money very well spent).
Many of the best experts on the planet are associated with this Foundation, and they use research funds granted by it. Your neurologists should be assured by the names, such as Drs Christopher Early, Mark Buchfuhrer, John Winkelman, Garcia-Borreguera, and many more.
It's not appropriate for patients to tell other patients that they will need to use opiates. Highly addictive , epidemic issues going on, and every patient will respond differently to any medicine.There are enough problems in the world of RLS without starting patients thinking they need to ask for opiate drugs.
Opiates can be taken very safely when done correctly and with your doctor. If not for those, I would have offed myself, instead I have been managing support groups for RLS for 30 yrs, on and off line,. These are suggestions, since you asked. No one is telling you that you HAVE to take any meds, these are suggestions that we know help US, Of course, we do not know your entire history, for sure. We know some people cannot take opiates for various reasons, but as always, we say what we have learned over the decades, and for me that is 3 decades of studying and suffering from RLS. One of the best things you can do for yourself is to get the book "Clinical Treatment for Restless Legs Syndrome" 2nd edition. Written by Dr, Mark Buchfuhrer and 3 other RLS experts, plus a section written by a nurse for treating kids with RLS. Amazon has it. If you buy no other book for RLS, this one is a must. We are just trying to help, as we do with all new people.
I'm with you. Today's harmful substances are tomorrow's healthful substances. Anyone ever heard of Prohibition? Now moderate alcohol consumption is all the rage as part of a healthy well-balanced lifestyle. I believe that someday the same will be true of what I call "micro" doses of benzos such as .5 clonazepam which is equivalent to a few ounces of alcohol and works via the same neural pathways to relax you. Some used to think coffee would do you in. Now it's touted as a world class antioxidant. Marijuana was the devil's playground. Now they're finding that parts of the plant might be anti-cancerous. Like marijuana, I truly believe that one day they will find that opiates, especially in small amounts, aren't ALL bad. And it's really the chemical alteration of the pure substance (opium) into things like heroin, that make it so problematic for society.
Even nicotine is supposed to ease Crohn's disease and nicotinic acid has numerous health benefits. Human beings are a strange species - we just can't relax, and doctors are finding that nothing will do you in quicker than constant stress, pain and suffering. I think there should be a Prohibition on that
Excellent! As in marijuana........my GP says her husband and her mother are medical MJ patients, and she is all for it. NEVER in my life did I think I would "indulge" in pot in front of my mother, who is 91. LOL Now it is the most normal thing, since the state I live in legalized it across the board. A God send. Pot is way safer than alcohol, for your body, for the people around you, etc. Nice to "meet" you. x
The important point in the article, which is easily missed since it's at the very end, is the mention of the fact that someday we may be able to separate out the pain relieving components of opium from the addictive component. As we have done with marijuana. If we demonize opiates, as we did with marijuana, then it may be decades before we are able to do this. "Don't throw the baby out with the dirty bath water." We need opium, it is a humane, relatively non-toxic, pain reliever.
I love science! I also work with the Pain News Network in the US, and the things that go on...................It is all about the $$$ Thanks for the read!
Read the disclaimer, please, and this is a support group not a blog. When people ask, and you DID, we are saying what works for US. Your mileage may vary, This is the forum for the RLS-UK Foundation, by the way.
But the truth is, that after all the other drugs, also controlled, and also fraught with problems, have been tried, then opioids alone remain.
They are very effective, and properly prescribed in low doses can save patients with intractable RLS from a life of misery. And in this case, in a hospital setting, from an episode of misery such as few can contemplate.
Thank you for this advice. I have seen some YouTube presentations and have the patient paper to bring to doctors.I came across the Foundation by just searching and they are a unique organization to rely upon. You are right , should become a member.
Well, since you ASKED, I think most of the answers are going to be "pain meds". DISCLAIMER- Always deal with your doctor and we are only saying what WE know to be true. As always, it is between you and your doctor. But, if you are asking for the MOST effective class of meds for post op, it IS pain meds. From OUR experience, and yours COULD be different. pain meds are the ONLY thing that help my RLS at all and I have been taking them for 16 years now for pain, (several back surgeries) and RLS. That is MY experience!
Hi Joan I understand your concern about opiates. Luckily, I don't need an opiate myself, but I do believe that at least in the short term to get you through your post op period you should consider one.
Sure, opiates are controlled drugs, but then, so is Gabapentin, (in the UK anyway).
I see Joolsg told you about the anti nausea meds, Also, I have to add that Melatonin should not be taken for an extended period of time. 10 days is about the max on that, and LOTS of ancedotal info from many RLS groups, that melatonin CAN make RLS worse for SOME people, I know it does me. I would say, for sure, depending on your neurologist, that he should be able to help with the RLS so your knee can heal. I just had major back surgery (pins and rods) If you have to talk to him or her, or your GP or the surgeon. I made sure that I had all of my doctors sign a paper in who was going to give me pain meds and when. The surgeon did for the first 30 days, then my GP took over. I get ALL my meds from ONE doctor, avoids confusion, But, do NOT be afraid to ask and find out exactly who will do what after you next knee surgery. I had knee surgery also, and it IS hard when you are trying to recover. But, the anti nausea meds are a big deal, they can trigger your usually quiet RLS. Your med list is not too bad. Are you on ANY other meds for anything else? many meds in many classes can make RLS unbearable, like some antidepressants such as SSRI's and tricyclics. Good luck! We all have to advocate for ourselves, It does not matter what KIND of doctor one is, it depends on the person who is the doctor, The list of meds to avoid is easy to find in a search on here, "Drugs to Avoid"
Thank you Nightdancer for the thoughts. Fortunately ,the only meds and supplements I take are for RLS.Hopefully I will get all medical team on board with controlling post surgical aggravated RLS.
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Severe RLS Augmentation on Pramipexole 
NEED ADVICE ON RLS
Made it through the "holiday" (many thanks for your support) - what now?
