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RLS my living nightmare!

Posted by shiner58 @shiner58, Jun 1 3:49am

What else can I do? I’ve struggled with RLS since I was a kid. It’s got increasingly worse over the last 10 years. I’m 68 non drinker, non smoker, and no recreational drugs. I’m on gabapentin and Ropinirole at the present time. I also have a sleep apnea machine monitor by a Neurologist specialist. I cannot take iron because it causes a severe constipation in my body even if I take it along with magnesium. Magnesium worked in the beginning, but doesn’t work anymore. These last two months have been a living nightmare for me. I am literally up all night long. I have to stand to get relieve. I’m wearing down emotionally and mentally. I’m taking the max dose of Ropinirole now and the only thing that seems to give relief is taking more of it or more gabapentin which my doctor advised me not to do. I walk my neighborhood in the middle of the night so I don’t have to just stand. Deep massage rarely works. Sometimes deep heat will work, but only while I have the deep heat meaning if I stand in the shower, sit in a hot tub full of water I’m beginning to be super sensitive to air conditioning. I have lost 85 pounds this past year while taking Zepbound that was prescribed to help with the restless leg and even though I’ve lost that weight, the restless leg has not gone away. I’m curious if anyone has found a diet or any natural remedies that help? Hot tubs or sauna? Compression pants?

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Profile picture for shiner58
shiner58 | @shiner58 | Jun 3 12:52am
In reply to @becsbuddy "@shiner58 Oh my goodness, I’m so sorry that you have RLS. Nothing is worse. I suffered..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@shiner58 Oh my goodness, I’m so sorry that you have RLS. Nothing is worse. I suffered from RLS before I even knew it was something. Almost nightly I was walking holes in the carpet! For at least 45 minutes. Luckily, one of my doctors decided that enough was enough. She had me make an appointment with a neurologist who was a movement specialist. She helped straighten me out. She has me on 300mg gabapentin in the evening (if I remember!) and 600 at bedtime. It works so far! I must admit that I also take nortriptyline 30mg and seroquel 25mg at bedtime to prevent migraines. They do nothing for RLS. I have had RLS for 15-20 mostly miserable years. I certainly hope something works for you soon.

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@becsbuddy I just don’t know. I guess I need to try to pump up the gabapentin. If my doctor thinks that would be good. She told me I absolutely could take no more than I have to call kidney damage.

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shiner58 | @shiner58 | Jun 3 12:54am
In reply to @kpoesch "@minnesota10 I also have restless body. It only happens when I'm asleep but wakes me and..." + (show)
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@minnesota10 I also have restless body. It only happens when I'm asleep but wakes me and frightens me. It can be just my hands to my whole body. Its like an electrical current. My doctor is treating it with 1 mg. Alprazolam at night and this works very well. If I forget to take it I will have a "body jerk" at some time in the night which reminds me to get up and take it. I've had this for years. I am now 76. I use to take a different drug that left me drowsy. Another doctor said it was not good for elderly and switched me to Alprazolam. It has worked well for about 4 years now. I relate and feel very sorry for you.

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@kpoesch I also have it in my upper body sometimes too. I thought maybe I was the only one that was experiencing that thanks for sharing. I will talk to her about that drug and see what she says.

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shiner58 | @shiner58 | Jun 3 12:55am
In reply to @covidstinks2023 "I too have restless leg syndrome,,,,but not as bad as yours. I'm so sorry you have..." + (show)
Profile picture for covidstinks2023 @covidstinks2023

I too have restless leg syndrome,,,,but not as bad as yours. I'm so sorry you have this. I was given a muscle relaxant for mine years ago....Flexeril 5 mg and it worked wonders.

I question if you have Neuropathy with it since yours is so painful. Has a doctor mentioned that? I have Neuropathy due to my body does not absorb B12 very well and it's a Gene Mutation issue. Has your B12 been checked lately?

Praying for you to get answers & relief. I'm so sorry you are battling this.

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@covidstinks2023 yes I have neuropathy in my feet too and lots of muscle type cramps like Charlie horses in my toes I often laugh and say they’re trying to depart from my foot

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 3 10:41pm
In reply to @shiner58 "@becsbuddy I just don’t know. I guess I need to try to pump up the gabapentin...." + (show)
Profile picture for shiner58 @shiner58

@becsbuddy I just don’t know. I guess I need to try to pump up the gabapentin. If my doctor thinks that would be good. She told me I absolutely could take no more than I have to call kidney damage.

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@shiner58 Just make sure she is keeping a close eye on you!! Speaking of which, I’m meeting with my neurologist tomorrow about my RLS. Not sure of your final sentence.
Does your doctor know what you’ve been going through?

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sharshy | @sharshy | Jun 4 1:32am
In reply to @rutgersmom123 "You mentioned that you have sleep apnea. Do you use your cpap every night? I too..." + (show)
Profile picture for rutgersmom123 @rutgersmom123

You mentioned that you have sleep apnea. Do you use your cpap every night? I too have rls and have had since I was young. I am on gabapentin 300mg 3 times a day. I found that once I started using the cpap religiously, I stared to have relief in legs. I also take Trazadone for sleep disorders.

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@rutgersmom123 I too am on gabapentin 300mg 3 time but take it at night and trazodone but what is cpap?

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rutgersmom123 | @rutgersmom123 | Jun 4 12:31pm

Cpap machine for sleep apnea. Used at night when you sleep.

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sharshy | @sharshy | Jun 5 12:07am
In reply to @rutgersmom123 "Cpap machine for sleep apnea. Used at night when you sleep." + (show)
Profile picture for rutgersmom123 @rutgersmom123

Cpap machine for sleep apnea. Used at night when you sleep.

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@rutgersmom123 Ok. thanks, I have to say I slept all night on the Gabapentin and Traozodone. I had a good nights sleep.

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jw9 | @jw9 | Jun 5 10:18pm
In reply to @becsbuddy "@shiner58 Oh my goodness, I’m so sorry that you have RLS. Nothing is worse. I suffered..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@shiner58 Oh my goodness, I’m so sorry that you have RLS. Nothing is worse. I suffered from RLS before I even knew it was something. Almost nightly I was walking holes in the carpet! For at least 45 minutes. Luckily, one of my doctors decided that enough was enough. She had me make an appointment with a neurologist who was a movement specialist. She helped straighten me out. She has me on 300mg gabapentin in the evening (if I remember!) and 600 at bedtime. It works so far! I must admit that I also take nortriptyline 30mg and seroquel 25mg at bedtime to prevent migraines. They do nothing for RLS. I have had RLS for 15-20 mostly miserable years. I certainly hope something works for you soon.

Jump to this post

@becsbuddy
My mother had migraines and RLS (she told me the cat was jumping on her feet!) I have had very good results with the same dose of gabapentin and seroquel at bedtime too. I keep a heating pad near the bed and usually it will take only 45 min. or so to settle down. Isn't it enough to make you scream in frustration?! This is a good sharing of possible resources. Thank you.

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nataliekpd | @nataliekpd | Jun 6 6:25am

I have had really good results from a 0.5 dosage of Pramipaxole, slight nausea is the only side effects. I take it two hours before bed....

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mmmerrimac | @mmmerrimac | Jun 7 2:47pm

Oh, I feel for you. Restless Leg Syndrome is the worst I've had it for 10+ years. It started after I had shoulder replacement surgery (I don't know if that's related). My PCP at the time prescribed ropinirole (1mg/night). Over time, I added pills until I was up to 5mg (1mg over suggested max) spread throughout the day/night. I consulted with Dr. Morganthaler at Mayo, who identified it as augmentation, when a drug exacerbates the problem it's supposed to be treating.

I tried taking iron tablets (upset my digestive system) and gabapentin (increased my anxiety level). I looked into iron infusion, but before I tried that, I had read that low-dose naltrexone (LDN), which has been known to help with pain for some, had been shown to help some people with ropinirole withdrawal as well. I tried LDN until I got the right dose (3mg/day), and it not only helped me get down to 3mg ropinirole/day but it also helps a lot with my whole-body pain from my myriad other illnesses. You might want to look into it.

In the meantime, here's an interesting article about ropinirole/RLS and a center at MGH set up for dealing with that combo: https://advances.massgeneral.org/neuro/article.aspx

Good luck!

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