I have had RLS for over 25+ years, used and exhausted all the RLS medications, when neurologist prescribed methadone, five months ago. I am at 20 mg, twice nightly. About 3-4 weeks ago, the symptoms disappeared, and I am trying to figure it out, possibly the Group can help. I began taking the magnesium glycinate at 9-11pm, along with a supplement GABA at about 12 midnight, give or take an hour, yet not together. The timing was about 2-3 months ago, guess-estimate. I also began tapering down the methadone 2 weeks ago to 15 mg, then the following week to 10 mg. That dose has been the last four nights.
Do the followers have thoughts on the RLS symptoms absence? I see the neurologist in December. I am not ready to jump up and down, just yet.
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vikkitennis
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In September and the last week of October, we traveled, but the RLS was present then. The last trip, I wasn't nearly as active, as we were on a cruise, and either walking at port, or in the gym on the boat, was the exercise, but not the intensity as I am home. I resumed tennis and Pickleball upon my return 11/5, and began coordinating the tennis tournaments at our community right away as well. That is when the change occurred. I was extremely busy with the two tournaments, didn't exercise as much, but have resumed the 2-4 hours per day. I am unsure if the planning occupied my mind so well, that it has kept the RLS at bay.
I will relay my findings to the neurologist, and report back to the group, after my December appointment. However, I continue to think, this is short-lived.
Good results!! I have a theory...bear with me. I feel that the social activities like running he tournaments and a bit of playing really helps raise seratonin levels for you. It seems to have helped my husband recently when he was experiencing some unusual neurological episodes, accompanied with anxiety and possible depression. We recently increased our social and activity levels and he really improved. The neurologist agreed with the theory that both improve brain function related to dopamine/seratonin boosts.
interesting. It has been about 4 weeks since the RLS symptoms have been quiet, I lowered the dosage from 20 to 10 mg, and only a slight irritation early in the morning, about 4-5am. The neurologist is returning from the Holiday Week, and I am curious to find out his interpretation of all of this.
on one more note, thank you for following up about your husband, and his social and physical activities, and improvement in his health. We enjoy entertaining, and live in an over 55 community. I am very active, socially and physically, but possibly I need more stimulation in my life, if I have room for it.
You are doing exceptional for a senior! Keep up those extracurricular activities for a long healthy life. We are just heading out the door to play pickleball, we've been away since my husband's neurological episodes. To see him looking forward to this makes me even more joyful. And I got 7.5 hours of good sleep , a nice break from my RLS. I recently switched to Gabapentin 400 mg + 25 mg Tramadol.
You may have been low in magnesium. Did you have it tested before you started taking the supplements? Also, RLS does have naturally occurring periods of waxing and also waning, and this may be one of the latter.
And of course, anything else that has changed, like Sue already asked?
I asked the GP the other day, as I recanted my story to him. He didn't offer much. I looked at the magnesium levels checked in June, and it was up to par. I asked him about the ferritin level, but he said if the iron was low (it wasn't in June) then it would spike an interest to follow it up with the ferritin. I asked the neurologist about ferritin in June, and he replied every two years they test it. At the December neurologist appointment, I will ask him about his interpretation. I emailed him recently, but he is away until next week.
What you mentioned about waxing and waning is what I am feeling is occurring. I will keep the group posted.
Re the waxing and waning, Vikki, excellent that you noticed and were able to reduce your methadon dose, as I think that it was quite high for RLS. As in the Mayo Clinic Proceedings Updated algorithm, it says 5-20mg (daily) is the usual effective dose. As I understand, you were on 40mg and now down to 20mg. I hope you can reduce further and that the lowered dose remains effective for a long time.
I asked the GP last week at a bi-annual appointment, but he is only re-testing the thyroid, as I had one thyroid removed 11 years ago. Thank you, I will ask the neurologist at the December appointment about retesting the magnesium.
The GABA, a Neurotransmitter Support Gamma-Aminobutyric Acid is from the NOW Foods. Serving size is at 750 mg. I have been taking this for six months, but only recently, taking it at about 9 or 10 pm, about 3-4 hours past dinner. I ordered this through Amazon. The other is Nature's Bounty, High Absorption Magnesium Glycinate at 240 mg, two pills at about 12 midnight. I buy it at Costco. I have been taking MG for years, but only recently changed the time of the day to much later at night. I also take zinc, calcium and 3000 fish oil at about 5pm, with a small meal, as we eat at 7pm.
The most likely cause of a change is the change in your diet. Google 'foods that cause inflammation' as systemic inflammation is one of the biggest drivers of RLS. Inflammation of your nerves will make them hypersensitive giving rise to the sensations that cause RLS. Inflammation can deplete you of iron which is why some people find taking iron supplements helps.
I will look into that, thank you. My diet is nearly gluten-free, leaning on the vegetarian side. desserts are non-existent, aside from a small slice of pumpkin cheesecake last night, in honor of Thanksgiving.
I goggled "foods that cause inflammation, and systematic inflammation. Those foods I don't touch: high processed foods, fried foods, red meat and sugar. The sugar is a rarity, where I might have 2-3 bites of a dessert at a friend's house for dinner. My diet is mostly vegetarian, where I consume the leafy veggies, tomatoes, nuts, no fruit, I am light on fish. Breakfast is a small piece of wheat bread (the only wheat in my diet during the day) with avocado and tomato; lunch is a small salad with nuts; dinner is a veggie cuisine, from tofu, to pasta (OK, I do have some gluten in my diet) to some fish. Popcorn is my dessert.
Bread (unless sourdough) is paticularly inflammatory especialy wheat bread because the gluten causes leaky gut and a high GI. Pasta it not much better for the same reason. Popcorn isn't ideal because it is high in carbohydrate. Take a look at this: youtu.be/PTgBa-Fpmlc?si=T9q...
I agree with you food sets off the RLS symptoms. I do feel eating late at night, something we do when we travel, sets it off. I thank you for your reply.
I'm surprised your symptoms didn't cease immediately when you began your methadone regimen. Dr. B put me on 10mg (5mg x twice daily) four years ago and my symptoms cleared immediately and ever since then. I'm on no other meds.
People seriously misunderestimate the power of simple minor ingredients in food, that have the potential to set off RLS
And not everyone reacts the same.
I react to rising agents-- which means I have to be careful of all cookies/ biscuits. Non yeast breads and cakes. Crunchy bars and their various iterations.
Also MSG, which means ALL soups and sauces / gravies. Even when they claim to be additive free, organic or "no added msg".
Eating out, where you have no control over the ingredients, means you are walking in an rls minefield.
Laugh and snigger all you like-"madlegs at it again". But this will explain 90% of those queries -"why did I get a severe attack of RLS after the weekend" etc, and so on.
as we age, I find food can be a nemesis for us. We were able to eat the chips and sweets in our 30's and 40's, yet at age 68, I am careful of my diet. Taking off 30 lbs over three years ago didn't help, but then again, I am wondering if time was a factor, and the weight had to agree with my overall being. Last night, we ate Mexican food, and I do find the leg irritation was present at 4am, and that is a correlation. Yes, eating out is a RLS Minefield, I like your wording.
I found out it is a form of Buprenorphine, of which my doctor prescribed it, but I haven't used it yet, awaiting to see how I taper down from methadone.
suboxone is the “go to” drug for people going thru with drawl from opiates. It is also used for pain. I had been taking it for pain (other than RLS) but I noticed that I didn’t have the pain from the RLS when I was on it. I did go off it as it didn’t help my chronic pain, and I soon noticed that the RLS was back. One night I took just 1 mg. Of the suboxone that was left over when the RLS had me up all night for the second night in a row, and within 10 minutes the leg RLS pain was completely gone.
But as with all pain cures you might have a problem finding a Md who will ox it for you. Good luck
Methadone is used for opiate drug withdrawal as is suboxone. Nothing worked for my RLS until I tried suboxone. My relief has not been short-lived. Is 40 mg of methadone considered a low dose. I need only a very low dose of suboxone and no RLS
Same here, and I prefer Suboxone to methadone, side effects wise. Also, and this is huge, local doctors seem to have almost no problem prescribing it, as opposed to getting cut off or refused when dealing with Methadone. I need very little of a 2 mg strip, as well.
Um, you misunderstood-I took Methadone to get off the DA's. I was then cut off and went though absolute hell for months. Finally started on Suboxone after trying various other opioids. Plus, if you'll read, I am not on 2 mg's.
Actually, you did read it correctly...I do prefer SUB to everything else I have tried. Of course I do wish I had a natural solution and didn't have to rely on an opioid. At least it is a very small amount.
I was responding to shaughnna for that post, but you may be interested in what I just now wrote to her-more detail about my RLS opioid journey.
Also, you can do a switch from METH to SUB easily, since they are both opioids. If you want to try it out, that is.. You don't need to wait to taper down. At any rate, I hope your improvement continues! I hadn't really thought about activity levels affecting my RLS, as I didn't notice a correlation. I do walk and bike quite a bit but I also can lie around far too much! Best of luck and do let us know!
I didn’t mean to say that you were on 2 mg of Suboxone. I am on OxyContin for Pain, but somehow it doesn’t help my RLS. So I take 2 mg. Of suboxone. However my Md told me I couldn’t take them both at the same time. The literature I’ve read states that it,is okay, as you are being followed by a MD. I was trying to,ask what you thought.
Oh! So sorry-I thought you meant that *I*was taking them both. Now I am amazed, because I didn't even think a person could do that. It was SO hard for me to get any opioid at all prescribed long-term, let alone to get two at once! I was able to get methadone short term from two local doctors and then unbelievably I was cut off almost cold turkey by both doctors. The second doctor even had RLS himself! I have been to SO many doctors and the idea of them giving me two opioids truly is mind-blowing! What is that like side-effect wise? Does the SUB somewhat counter the METH?! Do you feel pretty good when you take both?
Just to clarify my experience, when I finally got in to Dr. B, crazily I no longer wanted the methadone. I was still hoping to find a natural solution. I seriously disliked the side effects of METH, the way I was treated by everyone (except Dr. B), and I was feeling more like myself being off it. However, I was just suffering in other ways. I had been taking Kratom to get through until the appt. (thank god for this forum helping me!) and I didn't have as many side effects. But, you literally have to carry it around with you in case you start jonesing for it (which I did every evening, shaking and restless) and I had to continue to top up my dose throughout the night when in bed. My sleep was very fractured and the nights were long. Plus it is so messy and icky. (There ARE Kratom capsules though.) Which is why I try to say to fellow sufferers to use it for the bad nights until you get a good plan set in place. It is definitely far, FAR better than our RLS suffering with no sleep-few things are worse than that. Some people DO use Kratom long term and have no issues; they even sleep a full night. I never figured that out for myself. I consider it a fabulous backup and emergency RLS med though, and no dealing with docs, pharmacies, fear of being cut off.
That is so too bad that the Oxy doesn't work for your RLS! Major drag. I tried Oxycodone with Dr. B and it didn't work for me very well at all. I was back to fractured sleep and taking extra pills to try to piece together some rest. Dr. B said I was taking way too much of it-I think he was kind of shocked. That is when Suboxone came into the picture.
Sorry for the long reply, especially since it probably won't help you at all. Btw, 40 mg's of methadone is very high for RLS sufferers-just saw that question from you. I could be wrong but I think most people land on between 5 mg's and 20 mg's, which is getting pretty high for RLS.
Let me know on my questions, when you get time. Thanks and best of luck-I hope you find the right combo or can find ONE that covers it all.
interesting path the RLS, doctors, and the methadone has taken you. The neurologist said 20 mg was "still very low", and yet you report 20 mg is high. I am tempted to lower it to 5mg soon, but with the medication for a sinus infection, it has brought the symptoms on again.
I do agree with you with the behavior changes, from panic attacks to feeling estranged from my friends, this is not me. DO you feel diet plays into this? I am on the small frame, and don't have much sugar, and very little dessert. I try to limit the carbohydrates, the bread products. Sue Johnson who is on this forum said excessive exercise brings it on, and I have tapered exercising from 4 to 3 hours.
The Movement Disorder doctor I see appears to be sympathetic to our illness, and I like him a lot. I see him in about three weeks, and is very responsive on the patient portal, trying to work out the medication prescription.
I will continue to post any developments onto the forum if the RLS continues to diminish or returns.
I am just talking about the Meth dose for RLS and from what I have learned, that seems on the high side and few take that much. Many seem to end up at around 10 mg's. I was at 5 mg's and then bumped up to 7 or 8 mg's. With heavy side effects. I am small, as well, after having lost a ton of weight after getting off the DA's (ROP and PRAM). I kept blaming the weight on menopause. Tried everything. The bad news is I don't exercise as much now because I don't have the motivation of being fat! I still do walk and bike but just not as much as I used to.
I don't know about diet for myself. I actually eat a lot of junk food (for the same above reason and also because my appetite might have changed). I also just got to a point where I was so sick of buying supplements and hoping that this or that would work. It just seems so much harder for those of us who took DA's long term.
Yes, do let us know! I think if you get on Suboxone, there is a good chance you won't feel the same heavy side effects as METH. I will be so interested to find out. Plus, like I said, it is much easier to get from a regular doc, even those docs who don't know about RLS. I just hope you find what works, of course. Reading on here often will help you a lot.
the neurologist assured me at 20 mg per day, that was on the low-side. Interesting of what you mentioned, it is on the high side. I continue to take 7.5 mg, yet the spasms occur at 4am, and then I am up at 4:45am, as they keep me awake. I picked up the Suboxone and will speak the the neurologist the following week.
I am no expert on the dosages and I just go by what I read here and what I have experienced. 7.5 is not high, for sure, and if you still have spasms, then you do need more. That happened to me, as well.
Sorry it took so long for me to reply. I had to reread all the posts as It can be confusing right?
Any how I still take about 1mg of suboxone for RLS only when needed ( but that is most days, especially in the winter) and it always works within 10 minutes. I can take up to 6 tabs of oxy (10 Mg) for the severe chronic pain. sometimes it works and other times not. But I’m not complaining because for the past 8 yrs. I suffered from 8-10 pain every minute of every day. I am amazed when I hear all the posts about drs. Rx’ing narcotics for RLS, mostly because I suffered from EMS , RLS and trigeminal nerve pain all at the same time, and it took 8 yrs. Of so called “dr. Shopping” to find a Md who really listened, and really cared enough to pres. oxy for me.
So glad you finally got the help you needed. What an awful 8 years for you, to say the least. I didn't realize one could take both, as I thought SUB counteracted opioids.
Thank you-I'm doing well on a very small amount of SUB tape. I do have a hard time sleeping on that though and have tried various sleep meds. Trazadone gives me extra worse dry mouth-it is TERRIBLE. I will have no teeth if I continue with that! I also worry what the underlying cause really is and which exact supplements I should be taking to try to alleviate the brain misfires. Unfortunately I am less motivated now that I have relief each night! Enjoy your sleep!
Hi vikki, the same thing happened to me, although I did not change any medication or my diet besides the fact that I'm losing weight due to a lack of appetite during the due to other factors such as stress etc. I did go for bloodtests recently and it shows that I have low salt levels in my body. Like you I also don't want jump for joy right now but can't think of anything that I have changed recently. But here's hoping for the best. Good luck🤗
Gosh, thank you for your current words. I lost almost 30 lbs about 3 years ago, and have kept my weight to 121. I am extremely active, of which is a detriment to RLS. However, I can only recall it was the extreme stress and activity with the men’s doubles Championships and the tennis social at our tennis club community, that kept the RLS at bay. I am the tennis director at our tennis club, within our community. A volunteer position, but one that is dear to my heart. Nothing has changed, diet, and I do watch my carbohydrate intake. GP is asking for a blood panel for the thyroid, as I had one removed 11 years ago.
Thank you for your reply. I don't know how stress factored into it, but the two weeks in November, conducting the tennis tournaments, and preparing for Thanksgiving somehow took my mind off it, possibly. I will ask the neurologist at the December appointment to test some certain blood panels, yet he was reluctant to do so at the August meeting.
as soon as I went on to Butec patches my symptoms almost disappeared if I forget to change my patch as I get brain fog my RLS let’s me know it comes back with vengeance I get it in my arms as well
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