When Restless Legs Syndrome Won’t Leave You Alone

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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The light of the television screen illuminates the darkness. I want so much to sleep, but my body has other plans. After a hot shower and multiple medications, my legs continue to dance. The constant ache, twitch, and kick are a rhythmic routine. But my body is tired and has reached critical mass.

Ache, twitch, kick. Ache, twitch, kick. It is a reminder that my body is not my own. As if on cue with this epiphany, I begin to cry. I am burdened by fatigue. I am weary. Yet three hours later, the rhythm continues.

This is all part of my life with secondary progressive multiple sclerosis. Large active lesions in areas that affect my legs exacerbate my restless legs syndrome (RLS). For those with MS, RLS, the uncontrollable urge to move one’s arms or legs, is a nightmare. While it usually begins in the evening, I have RLS attacks all day.

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There are a few things I can do to mitigate an attack. Prescription and over-the-counter medications have been game changers. I take them around the clock, which helps to reduce the chance of an extreme attack. However, it’s not a foolproof plan.

In the event of an attack, I soak my legs in hot water by getting in the hot tub for 5-10 minutes. Heat isn’t healthy for multiple sclerosis, but ongoing restless arms and legs are unbearable.

I use a prescription compound cream along with sedative medication to help me rest. I also do mild exercise and yoga. I am mindful of my stress levels and lower them when needed.

I dread this symptom more than any other. My legs, and sometimes my arms, are on autopilot. As I progress, so does the severity of the RLS. No amount of mental fortitude can combat the insanity. My worst episode lasted for three days. My arms and legs were caught in a rhythmic ritual.

Long days on my feet often incite attacks. To mitigate them, I create boundaries. But when I don’t heed them, I pay a high price. Not everyone respects my limitations. They don’t have to. However, it is incumbent upon me to abide by them. I can’t always avoid an inevitable episode of RLS, but I can limit those I have.

Unfortunately, I didn’t succeed in doing that today. I must do better tomorrow.

If you experience symptoms like what I’ve described, please speak with your neurologist. Those with MS need specific and continuous care.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

A Anna Max avatar

A Anna Max

How I sympathise….. you so accurately describe the nightmare of legs doing their own thing just as you need to sleep. A recent hip operation sent mine into overdrive, so much so that on occasions I was nearly thrown off the bed by violent spasms. Apart from medication, the one thing I have found to be of great benefit, is a leg pillow (the special firm ones) between the legs. Don’t dismiss this out of hand as I did first of all. Give it a try! I now wouldn’t be without it. When I was in leg pressure boots post op to start with, I noticed my legs were quieter, and worked it out that direct pressure took away the “permission” for the legs to go walkabouts. So the purpose made heart shaped leg pillow now does this, bringing significant relief. Long may it last……please!

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Laust Henssel avatar

Laust Henssel

Hi
I use, with succes, quinine pills.

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Donald Wayne Dony avatar

Donald Wayne Dony

Hi, I have PPMS and also had restless leg syndrome. I found a slight change in diet made a huge difference. Our daughter is a vegetarian. She has been trying to get us to eat more plant-based foods. I was eating eggs every morning for breakfast and decided to switch to a plant-based breakfast. Within two days of moving away from eggs, my leg restless leg syndrome stopped. It has been now over 3 weeks and the leg movement has not come back.

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Brian Foster avatar

Brian Foster

Jenn, your description of RLS is something with which I am closely acquainted. I can recall my father pacing through the house in the night and early hours attempting to find relief from this relentless condition. Anna your comments reveal the unwanted experience of RLS. I have found that taking Pramipexole about an hour prior to retiring for bed in the evening has helped immensely. Check with your doctor.

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Jennifer Powell avatar

Jennifer Powell

Dear Brian,

Thank you so much for taking the time to read and comment. It sounds like you witnessed the difficulty of coping with RLS. I am sorry your father had to contend with it. Thank you for the suggestion, I will look into it further.

Warmly,
Jenn

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Christopher avatar

Christopher

You can at least get in a hot tub,I can’t as I’m bed bound. I have to guerilla through a RLS attack. None of the drugs work for me, and I won’t take that awful gabapentin anymore. I guess people like me with advanced progressive MS just don’t have many choices.

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Jennifer Powell avatar

Jennifer Powell

Dear Christopher,

Thank you for reading and commenting. I can only imagine how hard it is to contend with RLS when you cannot leave your chair. It is my goal to advocate for all of us who have MS so that we can all achieve the peace we so need and deserve.
Warmly,
Jenn

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Christine avatar

Christine

When I was diagnosed 10 years ago, I’d already had restless legs for 8 years. Neuro prescribed Baclofen at night so I could sleep. At first it was a miracle until I needed to keep raising the dose. 10mg became 20, then 30mg to keep the beast away. When 30 mg taken all at once failed to solve the problem, I refused to go beyond 30.
I’d noticed I didn’t get these during the day as much so wondered if I could walk them off. This worked occasionally, but 5 min on my exercise bike worked better. So at night when I got an RLS attack,, I’d pedal it off.
My doctor was surprised I could go back to watching TV or to sleep after, but the relief of not having my leg jump, was calming. The key is to do it when they start. If you wait too long, nothing helps. I don’t know why it works, maybe disrupts the bad brain signal? I just know it works for me. I was able to cut back to 10mg of baclofen at bedtime, something else that surprised my doctor.
I get them most nights, usually when I sit down to watch TV with my husband. But 5 min on the bike, allows me to see the rest of the show and only once in a while do I need to get up at night to work one off, but that recumbent bike has been a lifesaver.

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Jennifer Powell avatar

Jennifer Powell

Dear Christine,

Who knew a few pedals a day would keep the RLS away? Thank you for sharing as I am sure many could benefit from trying this remedy. I so appreciate the time you took in sharing this hack!

Warmly,
Jenn

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Judy avatar

Judy

You might try wearing compression stockings. It helps my restless legs.

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Jennifer Powell avatar

Jennifer Powell

Dear Judy,

Thank you so much for that suggestion. I just bought some on amazon!

Warmly,
Jenn

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Marjorie Mahler avatar

Marjorie Mahler

Ditto. I find that taking a potassium supplement, along with magnesium for absorption at night just before bed really helps. For years I have been taking half a normal amount (49.5 mg instead of the 99mg) and half a low dose of magnesium, but recently I have had to deal with breakthrough a lot. I have same amount ready at bedside and take more if needed. If I do not take it, I am dancing all night. I just read above comment and want to add that I too have a pillow between my legs because of a broken hip and surgery 9 years ago. Try the potassium.

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Jennifer Powell avatar

Jennifer Powell

Dear Marjorie,

Thank you for taking the time to read and comment. I will look into these today as well as the pillow. I hope these suggestions can collectively offer relief to others reading these comments.

Warmly,
Jenn

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Christine Jackson-Smith avatar

Christine Jackson-Smith

You have described so accurately what RLS does to anyone suffering with it. Like you, I have secondary progressive M.S. and some evenings I despair of managing to eat and drink without spilling anything. This has become so pronounced that I avoid eating out altogether now. It wasn't an issue in lockdown, we all had nowhere to go, but I have noticed that I have worsened since the beginning of the pandemic, probably the stress caused by isolation. I now have spasms and twitches during the daytime, in the last year I have burnt myself on numerous occasions twitching whilst trying to drink a mug of tea, but I'm British and nothing stops us drinking our tea so I just take more care!!
Thank you to A Anna Max (above) for the recommendation of the leg pillow, I will try that!

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Jennifer Powell avatar

Jennifer Powell

Christine,

I am so sorry you are dealing with all of the symptomatology. Just before writing this four walls jumped out at me. I must laugh or I will cry. And some days I do. Keep drinking that tea!

Thanks for taking the time to read and comment!
Warmly,
Jenn

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Howard Lucus avatar

Howard Lucus

I've had all the same symptoms the others have described in addition to a sort of attention deficit disorder that makes it impossible for me to even watch a sitcom or read. Fortunately my doctor prescribed pramipexole as soon as I told him about the symptoms so I could control them. The only problem has been that it occurs at any time of day so I need to take the drug all day to avoid the symptoms.

This led to a a big problem a couple of years ago when I spent 3 weeks in the hospital after some emergency surgery. They wouldn't give me the pramipexole because they were afraid of an interaction with a drug they were using to treat me so I was twitching off and on all day long. They would ask me why I was twitching, but they wouldn't do anything about the medication. The only way I could get any relief was to overstate my pain level so they would give me some dilaudid and put me to sleep. I thought that substituting an addictive pain killer for pramipexole simply because of a possible problem was really stupid, but it took several days of increasingly acerbic responses to questions like "How did you sleep" to get the point across. They finally agreed to stagger the doses so I wouldn't get their drug and the pramipexole at the same time

I honestly think that they thought that RLS is not really a problem so they discounted it.

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Jennifer Powell avatar

Jennifer Powell

Dear Howard,
Thanks so much for taking the time to read and respond.

I, too, take the Requip throughout the day. I try to have a baseline of medication in my system but as you know it does not always work. Similarly, when I go without the medication, the attacks are merciless. I am so sorry they would not give it to you in the hospital. At times we must educate the teacher.

My sincere wish is that you achieve peace with this relentless symptom.

Warmly,
Jenn

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Brian Foster avatar

Brian Foster

Christopher, I too have advanced PPMS. 15 years now. I hear you have you tried the Pramipexole?

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Amanda Rew avatar

Amanda Rew

I also suffer from RLS at night in my right leg and take Baclofen for it. My neurologist suggested for me to have Botox injection. I haven't yet, but thought I'd mention it on this thread, as it may help others.

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Cynthia MacFarlane avatar

Cynthia MacFarlane

I drink tonic water containing quinine , every day to quiet the spasms , on the advice of my physiatrist. It does work for me. When I get a lot of pain in my legs ( or arms ) I rub on pain relief cream that contains cannabis sativa..... It is made by Kalaya. It contains natural pain relieving ingredients , and is made in Canada. It also comes in a spray. It works very well for me.

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Herb avatar

Herb

I find doing squats just before I go to bed works wonders. I go to the bathroom and hold on to the sink as I have MS and limited mobility (spasticity) I now need to do 100 as over time I needed to do more and more to really fatigue my legs enough to settle them down. This is enough to get to sleep, occasionaly I wake half way through the night and need to repeat to make it to the morning relatiely settled.

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Jacque avatar

Jacque

Yes! RLS is awful! I’ve been using 100% pure Lavender essential oil. Not cheap junk, doesn’t work.
I rub it on the bottom of my feet before bed. Sometimes I have to reapply during the night, works for me, give it a try.
I also take magnesium.

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Jennifer Powell avatar

Jennifer Powell

Jacque,

Thank you for your helpful suggestion, I find Lavendar to be incredibly soothing.

Warmly,
Jenn

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Brenda Cooray avatar

Brenda Cooray

I also RRMS and suffer from RLS. It is so awful! I take sifrol. It works to a degree. If I could take any of my symptoms away RLS is on the top of the list. I suffer from immense pain, I have a spinal cord stimulator implant for my poor arms that feel like they are been crushed under a truck. Then there’s the other long list of nasty symptoms, it goes on and on. My legs are disconnected to my brain yet I feel RLS worse than anything. Hot baths, Sifrol and a massage from my wonderful husband are a great help.

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Sandra Hickey avatar

Sandra Hickey

Wow some great suggestions, mine are so bad I hardly sleep — my spasms are worse at night but will strike anytime! I’ve tri d SO many RX, and tried different doctors. I really like the plant bases from ids idea & pillow between the legs. I’ve got to get some sleep! Thanks!

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Pamela Franks avatar

Pamela Franks

I used to suffer with my legs as you have described but I found a wonderful doctor who prescribed Cannabis for me.
I can now say I am pain free.

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Frans Kingma avatar

Frans Kingma

medical cannabis may help

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Elizabeth Brennan avatar

Elizabeth Brennan

I have had success with 200mg L-theanine. Best to you.

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Kristen avatar

Kristen

I highly recommend “rice bags u heat in the microwave. You can buy them on Etsy , or if you or a friend sews make them with jasmine rice and I used an old pair of 100% Cotten Pj’s.
The heat settles the spaz! I use Deep Blue from Doterra too!!
It’s a daily routine for me, and I go to bed taking magnesium, and my heated rice bags! Life savèr !! The weight on your legs and slow cooling is much better than a heating pad🤗

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Aleksandra avatar

Aleksandra

Restless legs: I have SPMS since 25 years. I exhausted all possible medications for the small cramps in my calves. The ONLY thing that helps is the magnesium oil (like Swanson ,it works great!!!! Yes, I take CBD drops. It does help but not in the evenings nor at night. The oil works!!!!! I use it all the time!!!

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Jennifer Powell avatar

Jennifer Powell

Dear Anna,

Thank you so much for reading and commenting. RLS has been such a struggle and I am sorry it has been similar for you. Thank you for that recommendation, I will accept any and all suggestions! My hope is that we can all achieve a measure of peace soon!
Warmly,
Jenn

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Jennifer Powell avatar

Jennifer Powell

Dear Laust,

I have heard of that, thank you! I appreciate the suggestion.

Warmly,
Jenn

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Jennifer Powell avatar

Jennifer Powell

Dear Donald,
What lovely news! So much of what we experience with MS can be helped with a healthy, low-inflammatory diet. I recently began one and hope it brings about positive change. Thank you for taking the time to read and reply.

Warmly,
Jenn

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Jennifer Powell avatar

Jennifer Powell

Dear Amanda,
I have heard of that as well. Thank you for taking the time to comment in an effort to help others find much needed relief.
Warmly,
Jenn

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Jennifer Powell avatar

Jennifer Powell

Hi Brenda,

I am so sorry you encounter pain and RLS. Does the spinal stimulator help? I had one implanted then explanted due to infection - this was over a decade ago and pain management has come far.

Thank you for the helpful suggestions, and a wonderful husband always helps! I sure hope you continue to find relief.

Warmly,
Jenn

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Jennifer Powell avatar

Jennifer Powell

Dear Frans,

Thank you for your helpful suggestion. I have some friends who find that quite helpful.

Warmly,
Jenn

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Sharon avatar

Sharon

Oh boy do I hear you there! I probably been struggling with the restless restless legs at night 30 of the 35 years that I've had MS. I've so many of those symptoms you all have mentioned and tried alot of the remedies as well. MS can steal your sleep and your energy.. I take 4 Ropinirole at bedtime and that seems to work pretty well. I usually need to take a 1/2 pill though around dinner time because that seems to be when the the ugly beast or spasticity as I call it starts to wear its ugly head. At night I heating pad under the legs that bothers me helps to calm it down.

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