I have severe Restless Leg Syndrome and I don't know what to do anymore. I tell my MS doctor and all he does is put me on more pills and when I tell him that is not working, he ups the amount of pills I take. I feel like he is not listening to me. It is so bad, I have it just about every night and sometimes during the morning. HELP !!!
I should have listed the meds I take for RLS. They are:
Ropinirole
Baclofen
Carbidopa/Levodopa
Clonazepam
Gabapentin
Tizanidine
I do excerise, I have been in physical therapy for left knee replacement Feb, March and 1/ 2 of April and then again in June and still in physical therapy for my 2nd right knee replacement.
I do notice that my legs are more restless with activity. So the more I do, like going to the store or by a friend's house, just being on my feet, the worse my legs are.
Thank you to all for their replies !!!
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Gunner15
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Gunner15, that sounds really horrible. It sounds like you are taking pramipexole/Mirapex or something similar that works well at first, but then requires higher and higher doses? They are called dopamine agonists. Can you tell me what your pills are called?
There are a couple of options. You could ask for a patch. There's one called Neupro that's in the same drug family that I'm referring to, but it is released slowly throughout the day. You should know that it's hard to get off of this sort of drug, and sometimes they can cause compulsive behavior like gambling or sex addiction in people who have never had them before.
Others have stopped the dopamine agonist and taken something else. The problem, from what I've heard, is that going off is like the hell you're describing. I did find a research paper about how some doctors were able to wean people off and replace their meds with something else.
If your neuro doesn't understand the subtleties of RLS meds, you could see a sleep specialist.
For the time being, you can try walking on a treadmill if you're able and you have one. You can get down on the floor and do stretching and exercises like legs lifts, or even just waving your legs in the air. You can take a warm bath with Epsom salts, try magnesium cream, massage, or even strong pain cream containing menthol.
There is a Restless Leg group on HealthUnlocked that you may find really helpful. It's European, but there are quite a few Americans participating.
It is frustrating that our doctor just doesn’t help! I probably shouldn’t even answer you as I am frustrated, too. There are days I just want to scream! I want to believe my pain has a purpose. God will show me, the sooner the better!
I've had RLS for upwards of 20 years. I take a very small dose of Klonopin every night, which usually takes care of it. If I have break through issues, I just take one more dose and that does it.
I have the same problem with both issues. I was prescribed Gabapentin which just makes me a zombie in the mornings and my neuro doesn't listen to a thing I say either. I find I usually spend more time in the waiting room than in their office. I'm currently looking for a new neuro, someone that actually listens to me. Sorry I don't have any words of wisdom or special therapies/treatments that might help other than good luck.
I heard off the collar from a nurse that doctors think Gabapentin is a wonder drug for everything. It is not. Mirapex completely stopped my restless legs. It's also important to have the veins checked in your legs and ankles swell often. If the valves aren't working correctly this can add to the restless legs.
Gunner15 I am so very sorry that you are going through this. It sounds like you may need to look for a different neuro that is more helpful and will listen. Please keep us updated on how you are doing.
I have Restless Leg pretty badly too, and I tried all of the drugs you listed above, I believe. If you read the documentation, the drugs make the symptoms WORSE for a small number of people, not better - not for everyone, but it happened to me and I think it's happening to you too. I recommend stopping all of those dopamine medications. My neurologist prescribed Zanaflex to me finally, which is a muscle relaxer, and although it doesn't really help the Restless Leg that much it does help me sleep through it. Also, I use the Hyland's Restful Legs pills that require no prescription and you can find them on Amazon or any drugstore - and honestly, I think they help! Good luck.
Greetings CatsandCars. I only have experience with two of the meds on your list-Baclofen and Tizanidine. For myself, baclofen worked well at first for spasticity. Eventually baclofen became less effective and the dose was increased. I noticed that when it wore off I was stiffer. The more I took the stiffer I got until I figured to stop taking them. I was stiffer initially but it loosened after a few weeks and I felt better without. Tizanidine is for spasticity as well as helping slightly with blood pressure. I still take this to help with spasticity but mostly to help control my high BP.
On your list of meds I take number 2, 4, & 6 for my spasticity. I also use a lidocaine 5 mg patch on my lower back and arthritis cream. My sil says that the lidocaine patches help her RLS. You can cut them to the needed size and sleep with them on. I also use a weighted blanket in the winter. I hope you find relief.
I've had RLS for decades along with everything else that comes with the M.S. Package. I also did all the scrips for half as long, but I've got this one down! I take 2 different types of magnesium supplements, magnesium citrate and ?, the total of both types not exceeding the recommended dosage. If 2 pills daily for each, 1 of one type and 1 of the other. THE IMORTANT PART: Try and take them 1 - 2 hrs before they are needed. For me, my alarm on the phone is set for 7PM. Seldom notice it anymore as long as I keep up the routine.Okay, at one point for about a month I started getting severe cramps at the normal prime RLS time for me, bedtime.
The Higland's OTC Leg Cramps pills in addition to the magnesium stopped that. A few weeks of adding the Leg Cramps pills and they stopped too. To the Leg cramps: And Don't Come Back! You hear.
I suggest you join the RLS forum because you will learn really fast why the pills are not working any more. It very likely is augmentation, and what you're taking is no longer recommended for RLS because of that. There is a Mayo clinic study (sorry I don't have the link) that can be printed and shown to your doctor to get it through his head. He sounds like one of those who doesn't know how to do anything but prescribe pills. A sad statement for "medical" help.
Everyone has "triggers" for RLS but many have no idea that that is the case. With me, if I avoid foods with lectins, which is a lot of foods, my RLS is way, way less. It's worth it to me to avoid grains, legumes, and nightshades, to be able to sleep. I also recently am taking L tyrosine and it is working for me. However, I never took DA drugs so that may not apply to your situation.
Go join the RLS forum -- I'm sure they will be able to help you with valuable information.
Hi Gunner15. I have had RLS since 2009 and have used Tramadol slow release with great success. Even the pharmacist at the chemist where I get my monthly prescription has RLS and says it’s the only med that has ever worked for him. Hope this helps.
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Knee replacement
How do you manage your day
Checking the concrete floor.
Raynaud's Syndrome!🥶☃️Beware of the cold!
