Restless Leg Syndrome

[Marthe48]

Last edited Wed May 12, 2021, 06:18 PM - Edit history (1)

I've had restless legs since the mid 80s . When they started, I tried different home remedies, because there weren't any treatments, just stay up and wait it out. Some time in the 90s, RLS was designated as a sleep disorder, and as soon as I learned that, I asked my dr. for a sleeping pill. He gave me Ambien and I've taken a low dose since.

I asked if I could get a higher dosage and break the pill. to save a little money. I will admit since Covid-19, I take half the pill before I go to bed, and the other half when I wake up in the middle of the night and can't back back to sleep. On top of restless legs, I get leg cramps. I have other concerns as well. A lot of times, I had oddball reactions to medicines. I feel like if it isn't broke, don't fix it. I don't exceed the dose on the bottle. I don't want to change from a medicine that gets me to sleep to a medicine that might not work, might cause other problems. At this time in my life, I just want to sleep and wake refreshed. Even with the Ambien that doesn't always happen. I made changes to my diet, less caffeine, way less sugar. My labs are always good.

Now my dr. wants me to stay at the lower dose. And her nurse called me about my usage and says there is medicine for RLS. When I started having them, there weren't any specific meds for stopping them. I checked before I started writing this post, and I'm not confident the medicines will help me. I'm truly worried that she'll stop prescribing the Ambien and I will have sleeping problems. I get by on about 6 hours of sleep, and even with activity, I don't sleep longer than that. I always feel tired, and my days are long enough the way it is. I've taken Ambien since at least 1995, and if I were going to have problems, I think they'd show up by now.

I don't think I'm addicted to Ambien, although pretty sure if I go without it, I won't sleep. I don't have adverse affects from it, like overeating, going for drives and so on. If I want a drink, I have it before 5 so it is out of my system before I take the Ambien around 10.

Has anyone tried the medicine prescribed for RLS? Do they work? If she cuts me off from Ambien, how hard is it to get used to not having it? I want to make an appointment before she tries to change anything. If she wants to prescribe the lower dose, I can live with that, but if she wants me off it entirely, not sure it'll be easy for me.

Things like guns that impact other lives are virtually unregulated, but medicine just keeps getting scrutinized and limited. Thanks for reading

[Cousin Dupree]

1. Here's what works for me: calf stretches before getting in bed. I mean putting one leg back,

keep your heel on the floor, and stretch as much as you can tolerate, while you hold on to the edge of the bed. Then do the other leg. I do about 5 stretches per leg. Really stretch them hard.
And I take Melatonin about 1/2 hour before going to bed. Good luck to you. You’ve been on Anbien for a long time. Frankly,I’m surprised your doctor(s) prescribed it for you for that long.
PS. Believe it or not, out of desperation I tried an old wive’s treatment for my husband’s RLS: put a bar of lavender soap under the bottom sheet near where your feet are. I know this sounds ridiculous, but it has helped him immensely. His legs used to jump like crazy. No more.

[Marthe48]

4. I've been doing leg stretches

For the last couple months. And toe exercises. I get leg cramps in the night too. Sometimes in the day. I make sure when I go to bed that my feet are up against the footboard, so if I start cramping, I can push my feet flat. I hardly wake up since I started doing that. I thought stretching my calves, also doing toe and foot exercises, to improve circulation. I will get some lavender soap. I heard that it worked. Thank your for the tip and the reminder

[chia]

2. I know someone with restless legs and this over the counter magnesium supplement has helped:

It's called Calm. She takes a calcium supplement with it, as I guess it's good to take calcium and magnesium together. She said it's helped a lot.

[Marthe48]

5. Thanks

I'll look for it. I used to take calcium and magnesium daily, but heard things, so I cut back. I have some here and will give it a shot.

[chia]

7. Good luck, maybe give it at least a week or so, let me know if it helps!

Calm is a powder you mix with water and it fizzes. She recommended it to me as a sleep aid (I don't have restless legs) and I have to say I definitely am sleeping better since taking it. Placebo effect or... maybe I really did need a magnesium/calcium boost. Either way, I'm going to keep taking it!

[SheltieLover]

11. Calm works almost instantly for me.

Also, I use progressive muscle relaxation & mindfulness meditation.

[Marthe48]

13. I used to do muscle relaxation

If it is the same, tense a foot, release, tense a calf, release? Some of the tensing brought on cramps. lol

To get to sleep, I have lists I go through. I made them up years ago, but they still help me drift off.

[SheltieLover]

16. Yes, that's muscle relaxation.

Have you tried autogenic relaxation? In the flattest, most boring voice imaginable, say "my arms & legs are warm & heavy." Or your legs & feet are warm & heavy. Repeatedly.

I hope this helps!

[cate94]

12. Magnesium

Helped me tremendously. I only take it when my legs start twitching, then for a few days in a row. If I don’t, I get horrible muscle cramps and sometimes migraines.

[womanofthehills]

22. I've never read anything negative about magnesium

It helps with cramping plus it’s very protective of your heart and it lowers blood pressure. I take two tabs every night before I go to bed. Also, you will never ever be constipated. I don’t take calcium because I probably eat too much yogurt.

[Haggard Celine]

3. I took Ambien for many years, too, and I

was afraid I wouldn't sleep if I stopped taking it. It took about a week for my body to adjust, and I had natural sleep that lasted just as long as sleep with Ambien. I wanted to get off Ambien because sometimes I did things while on it that I couldn't remember later. It was scary as hell! I had a lot of grogginess after I woke up, too. I think Ambien is fine for people to take for short-term problems with sleeping, but it shouldn't be taken for decades like I did.

I don't know what they're planning to give you for your RLS, but they give me Gabapentin, or Neurontin, for my phantom pains in my leg. I had my leg amputated last year and I suffered a lot with the phantom pains afterwards. I've tried going without it for a while, but the pain comes back. The pains don't last all the time, but it comes and goes and when it's happening, it's very irritating. I would try whatever it is that they want to give you for the RLS. It might work. And I hope you're able to get off the Ambien. It's not a good drug, especially when you take it for 26 years.

[Marthe48]

9. You were on Ambien a long time

My Mom took Gabapentin for severe arthritis pain. My sister takes it for bone pain. As I said, if she just prescribes 5 mg, I'll make do. I try to take the lower dose to get to sleep, but I wake up 4 hrs after I take it, like clockwork. I tried to stay with the lower dose to avoid that grogginess. Since that was happening more and more during Covid, I would take the rest of the pill at 2 or 3 am and then sleep till 7 or 8. It isn't what I want to do, but I hate laying there waiting for sleep to return.. I have trouble taking naps too, even if I feel tired out.

Sorry to hear about your leg. I hope that the phantom pains clear up. I've heard about those, but never met anyone with personal experience.

I appreciate that you shared your experience with Ambien. Gives me hope any changes won't be as hard to get used to.

[Bev54]

6. I don't find much to help but low dose aspirin has helped but

I keep a back massager beside my bed so if I wake up in the night, I will use it on my legs for a minute or two and then I am fine and go back to sleep.

[zipplewrath]

8. Ropinerol

Spouse uses this on nights that she anticipates RLS. Seems to work. Takes it about an hour before sleep. Ambien doesn't stop RLS, she just sleeps through it. I get kicked alot. She also regularly gets side effects from common medications. Try it, you can always stop. I will admit that she started with one does and has to slowly increase to 3. The limit is 6.

[Marthe48]

10. Once they started, it was every night

I was on a schedule then, to get the kids to school, and later day shift jobs. They are maddening even if you don't have to get up.

I have a feeling that the sensation continues even while the Ambien knocks me out.

Thanks for sharing your experience.

[oregonjen]

14. Along with magnesium, have you thought of iron supplements?

One symptom of anemia is RLS. I suffered with it until blood tests indicated I was anemic. Took iron and the RLS went away after a week.

[Marthe48]

15. My iron in labs is always normal

and other tests indicating iron levels.

Thanks for the ideas.

[TexasBushwhacker]

24. How are your kidney labs?

One of the many symptoms of poorly functioning kidneys is RLS.

[Marthe48]

25. Glad you asked

My kidney labs are terrific. Now, allow me to brag: Our daughter is a renal dietitian and is a font of great information about kidney health. She reads my labs and explains the numbers. Super handy

I've been using the dopamine related medicine for almost 3 weeks. I had some sleeplessness when I first started. But I'm sleeping good now, and haven't felt the sensation of restless legs at all.

[TexasBushwhacker]

26. Good for you

The only reason I know it can cause RLS is because I just got diagnosed with moderate kidney disease. Most of it is because of my age (64), but the nephrologist said he would expect my function to be at about 65% and it's about 55% (Stage 3A). So I have to start watching my sodium, potassium and phosphorus, and more than any it means not eating fast and/or prepared foods. I should be doing that anyway, so hopefully I will lose weight and my BP will come down as well. It's hard just cooking for 1 though.

[Marthe48]

27. RLS started in the 1980s

for me. I was younger, thinner and more active. And even carrying extra weight, I have had good health overall, tG.

I've been low-carb for 21 months. My sugar was high 2018 and even sticking to 180 carbs a day wasn't helping to get it lower. So in 2019, I cut my carbs to about 100 a day. Not hard and fast, but try very hard not to go over 100. I don't have to worry about potassium or phosphorus, but I eat mainly fresh food I make at home. On my own, so I usually cook one day and have leftovers the next. I got my sugar down to normal and have lost 50 lbs. I am staying on this food plan to keep my sugar in line.

I cut out bananas, pasta, white potatoes, pizza, sandwiches, and an almond I bar I loved. I switched over to unsweetened almond milk. I bake a loaf of bread about every 10 days. That is about the densest carb I eat. I quit eating out March 13, 2020

If I want something that is high carb, I'll have a half serving. And then the other half

I wish you good luck on the changes you hope to make. There is a weight loss/Maintenance forum on DU and they are very supportive

[leighbythesea2]

32. Hi, I'm late, but 4 things...

I take ropinerole. I have RLS. But i also have a tremor in my jaw that happens at night. After a lot of sleep deprivation & diff meds to address the tremor, Ropinirole works the best for me.

Ive had insomnia, and trazadone worked pretty well. (Had used ambien). Also, the dr never seemed concerned about trazadone, over time, which was good. I don't take it now.

I use Calm, the product someone had shown above.

Because I see a neurologist, but they can't quite categorize my tremor---Im given a fair amount attention to the RLS. "Iron Store" is the test you may want. My iron is fine in bloodwork, but Iron Store is different. For people with RLS, they dont even want you in normal range, but at the top of normal. 75 or higher. I now take 65 mg of iron with vitamin C to help absorption. This is a new add for me, the last month.
Good luck!

[Marthe48]

33. Thanks for taking the time to reply

The Pramipexole has worked wonderfully for me. I've been on it almost a year. When I see the dr. I'll ask about trazadone. I have a great deal of anxiety. After I won round 10 with my dr. about the Ambien, and actually got a refill of 90, I have slept really well. I'll ask about iron store test, too. but right now, I feel like I have better and restful sleep.

Getting the RLS under control is such a relief, isn't it?

[anotherOKIE]

17. applying cold pack

What works best for me is the application of a really cold wet wash cloth or something from the freezer to my legs. Just running a cold wash cloth over my legs for a few minutes helps me get to sleep. I sometimes wonder if you could occasionally get one of those cryogenic treatments on your legs you might never be bothered by it.

[Marthe48]

19. If they wake me in the night

I can use a muscle rub and that calms them down. But that doesn't help right when i lay down. Such a strange affliction!

[Lettuce Be]

18. First I'm sure she'd wean you off the Ambien -- you don't suddenly stop taking it.

If it is working well for you, I'd discuss that with your doc. Why change if you're happy with what you're already doing? There's a difference between addiction and dependence. You have likely developed a mental dependence on Ambien simply because it works for you, so going without it would obviously trigger some problems. If you believe you won't do well without the Ambien, that's likely to be true, for you. Your mental state is critical in your health and well being. Hopefully your doctor will just let you stay on the Ambien since it sounds like it's working.

I have a somewhat similar situation, RLS, leg and hand cramps, and narcolepsy. It's a giant PITA. My neurologist recommended I try Turmeric for the cramps and it works. It's pretty crazy, but it works. I take six caps a day, my husband takes four. My sister also had leg cramps and she tried it and said it worked for her too, so no reason not to give it a try. I buy Turmeric in bulk and cap it myself or it'd be a bit expensive but when I don't take it the cramps come roaring back. I take Ropinirole HCL for the RLS and I don't think it helps much, if at all.

I looked awhile back at alternatives for RLS and there were none. They all have similar side-effects.

Someone else mentioned Calms -- a homeopathic remedy. I've used Calms since the 70s -- it works great for those waking up in the middle of the night situations. For me it simply calms my self-talk and anxious mind (can't sleep, ug!) and I'm back asleep. I'll admit I fall asleep rapidly due to the narcolepsy -- it usually takes me less than 10 mins.

[Marthe48]

20. I'm on my way to pick up 3 prescriptions

And I'll follow up on this discussion later. I don't know why 3 when one helped. The only other prescription I take is for BP. Just crazy.

I am going to discuss with my dr. I have a feeling that an enthusiastic nurse is working on the charts

[Marthe48]

21. My dr. prescribed pramipexole

and gave me a prescription for a lower dose Ambien.

I really appreciate all of the advice and tips. I am going to bookmark this thread and use it for reference

Many thanks

[uriel1972]

28. With drugs of dependence and quite a few other meds

You should never stop suddenly without medical supervision. The shock and withdrawal symptoms are dangerous.

I tried gabapentin and pregabalin and I couldn't tolerate them. So I make do. What is tumeric? A spice?

Be careful with sleeping med tapering keep a close eye on what is happening to your body and mood. Keep your medico/nurse in the loop.

[Marthe48]

29. I feel fine, thanks :)

I avoid meds as much as possible. I felt fine at the level I was taking and I'm doing good sticking to the lower dose. I have to say that the pramepexole has really helped with restless legs, and I notice that I don't feel antsy like I did, even in the day time.

I meant turmeric. It is an anti-imflammatory spice. I don't think it has much flavor, but it really adds a rich color to any of the food I add it to.

My Mom and my sister used gabapentin, but I don't think it helped either one of them with their intracable pain. Every dr. who saw xrays of my Mom's arthritic bones wondered how she was still walking. It hurt me to look at them.

[womanofthehills]

23. I have those electric leg massagers you wrap around your legs

Also a stationary bike and a full vibration machine. Good thing to do before going to bed.

[Marthe48]

30. Another update

I've been doing ok on the 5 mg of generic ambien (Zolpidem Tartrate 5 mg) since I wrote last spring. I had 2 refills and have been using the pramepexole at a low dose with good success. Last week I got a new prescription of Zolpidem Tartrate 5mg. When I opened the bottle, the pill was different. Instead of onlong, it was round. At first glance, I thought I'd taken the wrong bottle from the cupboard and had the pramepeole, or maybe the pharmiscist filled it wrong. I looked it up on PDR and it was Zolpidem Tartrate 5 mg, generic Ambien made by a different company. I shrugged and took it. I never think there is much difference in pills. Boy, was I wrong. I've had 5 days of misery, because the new prescription is not helping me go to sleep. First night, I laid until after 1 am. Next night, I fell asleep, but had a restless night. Third night, I got out of bed at 2 am and ate a slice of toast, and had a half a shot of vodka, finally got to sleep. 4th night slept restlessly. Last night, I think I had toast before I laid down, but it was a restless night and I got up at 6:45, over an hour earlier than usual.

I called the pharmacy and the dr. to tell them I am having trouble sleeping and the new prescription is not effective. The nurse I spoke to suggested melatonin and then, in a 2nd call, to stop taking the Zolpidem Tartrate for a few days, 'since I'm not sleeping anyway.' I can't even cut the pills in half and try 1 1/2 pills, because 5 mg is the maximum dose for my age group. If I run out early, there will be hell to pay and it probably won't get renewed. The pharmacist offered advice, but said that the medicine is identical, except maybe for inert ingredients. Most of the things she suggested I already do. She was sorry, but it is regulated and I'm stuck with this bottle of useless snake oil until I can get a refill in 85 days. The brand I was getting was Torrant and it did ok. I mainly want to get to sleep. Staying alseep remains an issue, but I accept what I get.

The brand I got last week is ACI and it SUCKS. I never understand why doctors don't listen. A long time ago, I was precribed Aleve for arthritis pain. I started having rapid heart beat and breathlessness in days. I told the doctor and told her I thought it was the medicine. She sent me for tests on my heart, and did other lab work. Guess what she found out? My symptoms were a rare but noted side affect of the medicine. She gave me something else for the arthritis and the other symptoms went away, poof. I had another dr. who put me on statins for cholesterol. I developed breathlessness and lost my stamina. I stopped taking it and was fine. His solution was to prescribe a different statin, which I tried, same effects. He gave me another prescription and I threw it away and got another dr. Even with the pramepexole, I had trouble sleeping with the higher dose 2 hours before bed, so take a half dose 4 hrs before bed, and it has helped. I am pretty aware that I am sensitive to medicine and I don't reflect the normal person. But that doesn't seem to matter.

In this current mess, I do not need melatonin and I do not need to go to a sleep lab to be assessed. I would do that, if I thought they could cure hot flashes, overactive bladder and crampy feet, not to mention restless legs. I had had 2 incidents of RLS since I started taking the pramepexole in July. This week alone, I've had 2 more. The only thing I am doing differently is taking that new brand of generic Ambien. I don't understand why the professionals I spoke to cannot hear what I am saying. I was trying to explore options and said I would return the prescription I just filled if I could get a new bottle of what I'm used to taking. No, they can't do that. I asked if I could perhaps get a bottle of Ambien and pay for it myself. My pharmacy doesn't even stock Ambien and 90 pills would cost over $2100.00 dollars! What a freaking racket.

Thanks for reading. Take care.

[Marthe48]

31. Follow-up III

I called my insurance company and they have a process that allows me to get the prescription replaced with the brand I was used to. The ins. rep. I spoke to was really kind, and listened to what I was saying. She put in a 'refill too soon' request and the reason why, and they allowed it. Then she found a local pharmacy that stocks that generic brand and called my dr. to authorize a refill order.

I'm just passing along what I learned, in case anyone is ever in a situation like this.