Rls Hell! : 46 year old who's suffered... - Restless Legs Syn...

Restless Legs Syndrome

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Rls Hell!

Mikeman1019 profile image
16 Replies

46 year old who's suffered from RLS and RAS (restless arm) - Heck I've even had them throughout my torso. Countless sleepless nights, flailing around, hitting my wife, waking up exhausted. Lately, over the past year, I have stopped fighting it, and when they come, I wake up and find something to do. I've tried just about everything on the market, prescription, nonprescription, massages..... You name it, it's failed. I've found that sometimes tensing the muscles 💪 in the effected area until complete muscle failure makes them stop. I've punched the area and that has actually even helped.

I recently started taking Oxycodon - this completely gets rid of it... But now I have keep taking them. Great! If anyone has any real, new home treatments besides showers, baths, masagges, creams, vitamin supplements, iron.... Please help. This is hell! Since the age of 9....the only time they stopped completely is when I ran marathons... To old, to lazy.... That's approximately 36 years and it's taken its toll. Please help. Flame away I don't care, but please pass along any ideas.

Thanks

MIKE

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Mikeman1019
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16 Replies

I think you have named all the home remedies. If they are not working then, its only meds left to take. What every prescription have you tried.

Mikeman1019 profile image
Mikeman1019 in reply to

Pramipexol and another patch the Dr gave me... The box of patches were over €250,but they worked. I wish there was an online chat group of RLS people who are currently up at night.

johannasuar profile image
johannasuar in reply to Mikeman1019

Hi Mikema, I too wished there would be a chat line because I live in the U.S.A, its now 3:19 am and have been dozing on and off since I started to fall asleep at around midnight. The night before I was up the entire night and though I should have been able to sleep tonight I haven't been able to because I took my meds too late and the RLS had already started, when I let the RLS start I have a lot of trouble getting it settled again even though I took a

second dose sooner than I should have. I take TRAMADOL, only 50 mg in the late afternoon around 7pm and the second pill I take 6 hrs. later. It seems to work for me but tonight has been hell because when I let the RLS start I also get it around my whole body. I tried Gabapentin but all it did was make me gain weight very quickly and I got no relief. I hear that the Oxycondone works very well but I'm afraid of becoming dependent on it, and I think I'm getting some augmentation which frightens me. If you hear of a grave shift chat line let me know, I'll be on it for sure.

Mikeman1019 profile image
Mikeman1019 in reply to johannasuar

Yeah.... Dependency is a bitch let me tell ya. Especially if I decide I don't want the Oxy anymore and don't go get a new script - BAM! Rls dominates my life yet again. What gets me is its other descriptions auch as creepy crawly, burning..... Nope - to me it's a hellish discomfort that does not allow parts of your body to relax. Because I love my wife, and we live in a small apartment - I simply get up and watch TV on my laptop etc. Dateline is online and I am almost caught up with every episode.......

beady3 profile image
beady3

Hi Mikema,you have had what most of us have had no sleep that's the big one all I can say is if you have found something that helps you take it as there is nothing to cure it in the non meds. I have just had 4nights sleep wonderful I am on Tramodol and that's what I am going to take ,let us no if you find a cure on the homeopathic line x

Mikeman1019 profile image
Mikeman1019 in reply to beady3

Precisely on the meds. Sucks, expensive, dependency - but I've gotta have my sleep. No sleep, no work. My job demands that I be alert for the safe operation of heave machinery. I hope they find a cure, but I don't think anyone's looking because the market just ain't big enough.

Lindy14 profile image
Lindy14

Hi Mike,

I don't know if you've tried anything to cool down the bed, but I explored this when i found that mine didn't occur quite so badly if I threw the covers off my legs. I then found some things on the market. Some worked, like you said, until immediately after I stopped using them. A cover you could put under the lower sheet made the bed cooler and did work for an hour or two, but as my legs were quite hot it didn't work for the whole night.

Like you, my husband suffers from my RLS as he gets the kicks!

I did find an electric cover used under the lower sheet that does keep the bed cool all night and was tempted to through a party, but I find that it doesn't work totally by itself, but does keep my medication down. I find that together the pramipexole and the Climson topper mattress help me to get through most nights, although I do have to get up for a while.

The Climson might seem expensive, but I'm certain I'd be dosed up to the eyeballs without it. I take it on holiday. There's a tank that you fill with water, which only needs refilling every 2 weeks. The machine moves the water around the mattress throughout the night, and you can adjust the temperature you want. It also works to heat up the bed, but that's not something I need.

Just one thing, I assure you I do not work for the Climson Company! I found it when looking around online.

If you haven't seen them, it might be work the look.

Lindy

nightdancer profile image
nightdancer

In my experience, the pain meds are the ONLY thing that stop my RLS. The "home remedies" are hit and miss and we have to find out for ourselves what works for us. One big piece of advice, stay away from any web site that says they have the "CURE" that no one else could find. Load of crap and they are only going after your wallet. I have been taking morphine and hydrocodone (not available in the UK) and they are the only things that help me. have been taking them for about 14 yrs now and will never go off of them. RLS is for life, as of now, so whatever works is what we have to go with for ourselves.

lake profile image
lake

I have had Rsl & ras for nearly 10 years I am on pramipexol most of this time but I still have problems Mostly at night, I also take magineazime tablets, I also do not sleep at night and try to keep busy and not fight trying to get to sleep if I keep moving around its not so bad but you still feel like s--t,, I do sleep when I can which can be any time of the day ,I think this is because I am so tired, I too must see my doctor again as it is not getting any better, I also have tried tramadol they worked for a bit ?? But not sure, so I battle on I wish I could sleep for just one night I am on edge all the time find it hard to read a book or relax,ever hope full !!!

Lake, what dose is your pramipexole and how long have you been taking it. If its not working so well it could be you are experiencing augmentation.

I found that low dose combination therapy helped me the most.

I had Lyrica, (but for neuropathy and RLS) , then Oxycodone (low dose)

plus pramamexole.. I really had it made. I would zonk out in minutes

and slumber most of the night.

My legs puffed up like nobody's business from Lyrica (the ankles especially)

and it make ulcers (tiny) so they cut me way down on Lyrica finally ridding me of it. - then while they were looking at my medicines they said "Hey - you've been on this oxycodone so long.. lets try doing something else" and they gave me tramadol.. I went crying back to the doctor who put me back on oxy..

Later my family took me off oxy for sleeping too much. I went to bed by 8 pm and slept until 9am. too much in bed.. kids and hubby didn't like it like this. so here I am now but I'm on Topamax.. it's working okay..but not helping for RLS...I was told it would help with rls.. Phoooy! I am also on Max dose of pramipexole. I can't add more drugs I'm doing steroids a nerve condition I have.. boo.

Mikeman1019 profile image
Mikeman1019 in reply to

It's pure hell. The Oxy doesn't make me tired, it makes me wide awake unfortunately, but either evil is lesser I guess

in reply to Mikeman1019

I would rather be awake than have my legs in a state of frenzy. What happens for me is that I feel a need to move them but no matter how much I move them or position them, the legs are never satisfied or comfortable. The "Need to move" intensity is that of someone holding a flame to my arm or throwing ice down the back of my shirt. I simply must give in and react. I will toss and turn, I will stand up, walk, sit and have to get right back up. You would think that if I stand still or sit still for a moment I would lose at playing lazer tag or something like that. The need to move keeps up for hours and hours for me. Oxycodone alone cannot control that urge to move. It can "knock" me out but it won't last very long. I will wake up much sooner without pramipexole than with it even using oxycodone.

Do I miss oxycodone? I do. Very much. It causes a lot of trouble in my household. My husband thinks that it's for use after a big surgery only. He asks what I would do for serious pain should I ever need it.. I hate to agree.

Mikeman1019 profile image
Mikeman1019 in reply to

Have you ever asked your husband to massage the area. With certainty he has, pardon my rhetorical question..... While this doesn't always help, it has on occasion allowed me to rest. It's almost in involuntary movement, because to ignore the discomfort is futile. I've got up and walked a few miles, then showered and right back they've came. But occasionally this helps as well. Granted walking in the middle of the night is not a viable option for all. I hope and pray you find relief, because this condition can lead to heart issues. I now have high blood pressure along with other ailments my Dr attributes to lack of sleep and other things of course.

bjsissel54 profile image
bjsissel54

Not sure if you are interested, but I had RLS really bad, I would feel like huge spiders were crawling all over my body and wake my poor husband up constantly. I got no really good sleep. Plus I had migraines and back pain. I got on essential oils 4 years ago and have had no problems from RLS or the migraines or back pain since. It has been amazing. I checked out everythingessential.me and found some natural solutions for my problems. It has been such a drastic change for me because it got to the root of the problem instead of taking meds and covering up the problem. I hope this helps you.

Joe2528 profile image
Joe2528

Kratom will change your life regarding rls. I have a terrible case of rls. It has been a living hell its like my body refuses to let me sleep.

Kratom has changed all that and it’s natural. Like you I took pain pills for my legs because it’s the only thing that worked. Unfortunately we all know pain pills can ruin your life. Anyways to answer you question kratom worked great for my rls. now I take it every night and it works great. I recommend red vein Borneo or Bali gold both are great strains of kratom for RLS. Again it is the only natural substance that has ever worked for me

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