Restless Leg Syndrome : I have Restless... - My MSAA Community

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Restless Leg Syndrome

Midnight-Blue
Midnight-Blue

I have Restless Leg Syndrome or Spastic Leg Syndrome which is keeping me from having a “ normal” sleep. Does anyone out there have the same problem?

52 Replies
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I certainly do, had it near on 35 years. It’s horrible. I take pramepexole or mirapex as it is also known. It lasts for 22 to 23 hours but a hour before I am due to take it, the restless leg starts with the periodic leg movement. Such fun. Blessings Jimeka, sorry forgot to say, welcome to the group.

bxrmom
bxrmom
in reply to jimeka

Maybe you could take the rx an hour earlier so the restless leg doesn't start?

jimeka
jimeka
in reply to bxrmom

Thanks but I take it everyday, and it doesn’t matter what time I take it, it only lasts 23 hours and I need it most at bedtime. 😊

I’m glad I’m not alone with this. Are there any dude affects (effects?) with either of the medications? Right now I take Ropinirole -0.5mg : 2 twice a day and 3 at night along with 2mg of the same medication & just hope it works! If not I must have the cleanest floors in the neighborhood!

Sounds like you are experiencing augmentation. Health unlocked have a restless leg syndrome forum, like this one. You should join that and they will be able to answer any questions you have, Blessings Jimeka 😊

What is “Augmentation”? I Googled it & couldn’t find any explanation remotely close to anything! And, a “restless leg syndrome forum”? Please

explain further. I appreciate your help Jimena.😌

Augmentation is when your body gets used to the medication you are taking so your doctor increases the dose. It works for a while then your body gets used to that dosage and so your doctor increases it again. You then have to wean yourself off the drug which is hard for your body to cope with, it’s like having withdrawal symptoms. The Restless Leg Syndrome Forum is by Health Unlocked just like this one. The people on it are really helpful. Blessings Jimeka 🤗

Yes, but since being on baclofen, and taking magnesium, my legs are not so restless any more. Talk to your healthcare professional about this and they should be able to sort this out for you. Keep Smiling :-D

I, too, am on Magnesium for the purpose that it’s supposed to help with restless legs.

I guess I must have too long legs because I

don’t feel like it does.

Better two longs than a short and a long one! Like me. Okay, in all seriousness, I take magnesium supplements and I have a magnesium lotion that helps me. I hope that you will find some relief for your restless leg(s), Midnight-Blue , because it can be frustrating, to say the least. :-D

JacqueD
JacqueD
in reply to carolek572

Plus one to Magnesium -Aside from hanging my feet I'm also taking the 3M Sleep from WholeFamilyProducts which has a unique formula of MSM, Genuine Zechstein Magnesium and Melatonin. It really helps me

carolek572
carolek572
in reply to JacqueD

What ever gets me through the night is all right, JacqueD Thank you for this info. Magnesium supplements are good, aren't they? They work for me. Keep Smiling :-D

I take Magnesium twice a day which doesn’t seem to help my RLS but who knows - Maybe it’s worse without it? Also have to watch to make sure I’m not getting too much of it because I also have (Stage 3) Kidney Disease.

Good to know, Midnight-Blue I also use a 'weighted' blanket. My 'weighted' blanket is my cat laying on my legs. I also use a gentle heating pad. Some days, nothing seems to help. Keep Smiling :-D

I, too, use a weighted blanket but

mine weighs 25lbs. The 1st couple of nights were awesome! Two yrs later - it just keeps me warm! When I was in the hospital (Most of 2018) I had on these leg thingings (For circulation) that actually helped but the ones I found were not only expensive but not as well made as the ones I had in the hospital. *sigh*

I forgot about compression stockings. They do make a difference as well. :-D

😚

Perhaps you could inquire as to what brand of compression stocking that the hospital used and see if you can afford them. You already know that you like them, and they helped you. Keep Smiling :-D

Way ahead of you! They had the manufacture’s name on it. They sold only to hospitals, nursing homes, etc. The ones I found at medical supply stores (That were supposed to be comparable.) were not only expensive but not worth the price.

That's unfortunate. Could you ask the hospital to order a pair for you? Or your doctor? :-D

That’s a thought!😚

I just re-read - it wasn’t “stockings” but something that runs by electricity. One for each leg. They sell them in medical supply stores & specialty magazines. All about the same price. The downside is you have to remove it to go to the bathroom, or leave the bed. Also, someone has to put it on your legs & plug it in. *sigh*

To prevent blood clots? I think that I know what you're talking about. Does it help for RLS? Keep Smiling, Midnight-Blue :-D

Yup! To a degree. It was the constant

“Massaging” that held “it” at bay - for a time. Also, my RLS wasn’t as bad as it is now. I have taken to even taking the trash out at 0030hrs (no lights) just so I can walk! I can’t exercise like I used to ☹️ so I find ways that so have to walk.

Whatever it takes for relief.

greaterexp
greaterexpCommunityAmbassador

Welcome to the forum! I think many of us suffer from that problem. I'll be reading responses, too, since this is becoming more a problem and which keeps me up a lot at night.

Thanx! Hopefully I can get some sleep tonight - it’s either my legs or my IBS!

Sometimes I can’t win for loose!

Welcome to the group, everyone is helpful. I've had restless legs and horrible leg cramps that made me cry out. Which is unusual for me. Have you tried Gatorade? I hated it so I bought otc potassium and took the same amount as a bottle of Gatorade. Probably wasn't the smartest thing I've ever done but it helped. Best thing try an electrolyte sports drink and if it doesnt work you'll ay least br able to say hey, I tried it but I need more help. Hope you get some relief.

A bit of help for your leg cramps: I remember my Dad, many of nights , walking the floor because of them, Then, I started getting them! Ouch! I think I was starting to wearing down a trail on my floor! I did some research and found they could be caused by lack of Potassium! Bananas were the answer. But, years later my GI Doctor advised I couldn’t eat them anymore so now I take a Potassium capsule once a day & I haven’t had leg cramps in years - just RLS! Wish the RLS was as easy to cure as the leg cramps! (As if I don’t have enough to contend with with MS !😡)

ahrogers
ahrogers
in reply to Sassysmom

I have also read drinking a glass of tonic water an hour before bedtime can help

Yes, I take a magnesium tablet every day & exercise 3 times a week. Seems to go in periods but I'm ok at the moment.

there are many people with restless leg ,it very well be ms but I also think it is inherited and being dehydrated.muscles that are very fatigue.many people I know have this condition to the point they sleep in separate rooms from their spouse, some things simple work,like drink a couple of shots of pickle juice! I am sure it is the sodium in it like gatorade.also i use a rub on foam called Theraworks it is magic for me!best to you

Got to run, but quickly, I take (2) 125mg Magnesium Citrate vitamins every night 2 hours before bed. That works. When that wasn't 100% effective, I added (1) more in the morning with my daily vitamins. Did the Mirapex and other drugs for years, they stopped working for me. This seems to be the underlying cause, at least for me. If I don't take it before bed, I fight it to this day, but not as bad as before the Magnesium Citrate dosing. Good luck, RLS used to keep me awake for hours. Then dysesthesia (burning feet) took over, that was really fun. Up all night, wanting to cut off my feet. CBD vaped at night undoes that. Are the 2 related???

I take tizanadine and one-half of a medical marijuana edible an hour before bedtime. The combination gets me 6+ hours of uninterrupted sleep. Of course you have to be in a state where it is legal. It helps me ignore my back arthritis and keeps the leg spasticity minimized. Dehydration increases my leg muscle issues.

Tizanadine is a new one for me ad where I live you mention “Marijuana” well, this is a Southern Baptist State if that tells you anything.

Yea - not a chance. Sorry. The small dose I take has no mental effect, but is excellent for sleeping. Tizanadine is a muscle relaxer. If I am fatigued and wait too long to get in bed, my husband has to help pull my legs up. My right leg and brain don’t connect anyway.

I never even considered a muscle relaxer. I am writing all these Meds down so when I see my PC (My VA PC is a possibility, too.) or Neurologist we can discuss a course of action. I really hate being tired all the time & no one seems to understand!😞

I also have Restless Legs and have been prescribed both ropinerole and gabapentin for it. I do take magnesium but earlier in the day, at lunch and supper because is interacts with gabapentin. I find that if I take ropinerole mid-afternoon it works better to keep me from having RL when I sit down for supper and in the evening. Then I take another one at bedtime which lasts through the night. My potassium level runs low, so I might check into using gatorade to help with that. Thanks for the suggestions!

I take Gabapentin for my arthritis in my neck - 1800mg a day & if you take it for RLS

you’d think it would help me with that, too.

And, I also take ropinirole 2 in am, 2 late afternoon, 3 bedtime along with 2mg. Sometimes it works. Sometimes I clean 🧼 my floors, do laundry 🧺- anything that requires leg movement until the medication kicks in or I’m just too exhausted to care!

There are also some reports that advocate doing stretches of the leg muscles, like standing away from a wall or counter and making your legs stretch repeatedly. I have not found it to work much for me. I have not used my RLS to do extra housework. I'm usually too tired by that time of day. I have sat in my chair bouncing my leg or kicking until the med kicks in. It is maddening for sure!

I never was told about the interaction of those two medications. Surprised my Neurologist didn’t say anything (Not my PC.) I take both of them at night. Thanx for the “Heads-Up”.

Fancy1959
Fancy1959CommunityAmbassador

If just one thing to say. Get your primary care doctor or neurologist to give you a prescription oçf mirapex. The generic version works as welĺ For me as the brand name and it's a lot cheaper. .

Take it at bedtime. It can cause a lot of drowsiness, which you help you sleep better too. You do not have to live with it. . It is fixable. Don't let your doctors blow you off because they think relatively. Insignificant with what you're dealing with. If you have to demand that one if your doctor's Prescribed it for you. . Remember, you are the best at advocate for your own health. Until we speak again. Please. Take care of yourself and good luck with that restless leg syndrome. Remember that together we are stronger! Fancy.

Oh, I have no intention of NOT getting help with this! I have written down the two medications that were suggested to me through here & if what I’m doing now starts getting worse (I.e. hindering sleep) I will suggest them to my Neurologist. I just wish I had known about this site sooner! It’s lonely out here! 🙂

Hi Midnight-Blue and welcome to the group. I also have restless legs and spasticity. When I am in bed and my legs are stretched out, the pain is horrible. I can't rest or get any sleep. I have to keep my right leg bent. I am currently taking the medicines Lyrica and Ampyra for pain and walking. I think they are helping a little. Its taking time.

What you are experiencing doesn’t quite sound in the category of RLS but something much worse. I gather you have MS? (As I do🤨)

Yes I do have PPMS and it goes with restless legs. PPMS is constant pain with no relapsing. Pain 24 hours and 7 days a week. Believe me, it's MS.

My heart goes out to you; I wasn’t questioning you having MS. Was trying to make a connection to you./with you. I can’t imagine going through what you do but then I never knew anything about it til I was diagnosed with it. Gee, aren’t we lucky!😘

Almost 30 to 35 years ago I discovered that I did too. It was part of a diagnosis of sleep apnea. My CPAP machine helped a lot. However 5 years ago I was diagnosed with MS. Shortly after my CPAP machine broke and I could not afford to replace it. Just recently had another sleep study and eager to find out how they are going to deal with it. Is the restless restless leg from MS or sleep apnea? Or both? I should have test results in about 7 more days.

Midnight-Blue
Midnight-Blue
in reply to Sabs2

That’s interesting - about the relationship between the two. Pls let me know the results. My “Other Half” uses the C-PAC (G-d his snoring was awlful!) as well as many of our friends & they’ ve never complained of having RLS. (And, believe me if they had ANY problems they’d tell us! Lol). Last night (Actually 0130hrs) I went to bed and was just settling in when - ! So, had to get up & walk around until my Right

Leg decided to stop doing it’s “thing”. It doesn’t matter what time I go to bed

(I also take Melatonin, 9grms) - I can’t remember ever getting a good nights sleep.

And, this all started around the time I was 1st diagnosed with MS! (There’s a story here.)

I did, but spoke to my neuro and got a script to halt RLS as well as myclonic jerks.

What was the name of the medication & have you used it yet; did it work?

Leviteracetam or something. Not at home to look.

Would appreciate it if when you get a chance to let me know. I’m at my wits end from lack of sleep!

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