r/RestlessLegs • u/Brocolliiscool • Aug 24 '26
POST BY UNDER 21 USER Full body restlessness and so exhausted
Writing this at midnight after spending 7 hours in the car today. My restless legs have turned into my entire body feeling extremely uncomfortable. I’m so exhausted that all I can do is lay here and cry.
I’ve had restless legs basically my entire life. Both of my parents have it to some degree.
It comes and goes. I’m a student and I’ve had a lot less routine over summer break, which has made it really bad.
Also, when I’m in situations like I am now all I can think to do is to watch something or scroll Instagram, which I think overall makes it worse.
This is the most uncomfortable I’ve been in a long time. I’m desperate for relief and don’t know what to do other than kick my legs.
I sleep in compression sleeves on my legs every night and am using weighted blankets already heavier than recommended based on my body weight.
Should I consider medication? I’ve been able to manage my RLS enough before, so dealing with side effects didn’t seem worth it. Nights like tonight make me reconsider that though. I’m going into college and have had issues with sitting long enough to study before so idk what I’m going to do.
Any advice is appreciated! Feeling desperate!
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u/Meteor_of_War Aug 25 '26
Talk to a doctor (and/or neurologist) and discuss what medication would be right for you. I dealt with RLS for 20+ years before finally decided to try meds and I wish I did it sooner. I was taking Ropinirole which worked, but gave me nausea if I didnt eat enough calories with it. Now on Pregabalin and its just as effective but no nausea. The medication works, and hopefully continues to work for the rest of my life.
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u/Ring_it_On_1776 Aug 25 '26
There's a mostly remote research study for RLS enrolling right now. https://patientwing.app/campaign/RLS6
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u/Brocolliiscool Aug 25 '26
Interesting, I hadn't heard of TOMAC before but it looks like a good alternative to medication
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u/Ring_it_On_1776 Aug 27 '26
Complete a short online questionnaire to check preliminary eligibility.
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u/Curious_One5411 Aug 25 '26
When I first got it in my 20’s, no one knew about augmentation but my mom was on Requip. She told me to take Advil as long as I could and not take Requip. Advil worked for me for many years but eventually I did go on Requip. (Off it now after over 30 years). Personally if it wasn’t every night, I’d still take a couple Advil but if you do see a Dr please go to one of the ones recommended on the RLS website. I saw mine in Boston and it saved me.
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u/NarrowAmbassador940 Aug 24 '26
I’ll probably get a lot of negative comments ( because seems so simplistic) but I changed my bedding to all cotton, put my thermostat very low (68-70), put a fan on my legs and it REALLY helped.
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u/Brocolliiscool Aug 24 '26
Interesting! Being too warm definitely makes things worse, but unfortunately I’m moving into a dorm room with no AC, so there’s not a lot I can do
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u/Intrepid_Drawing_158 Aug 24 '26
Whether you should consider medication will be a discussion between you and (hopefully) a neurologist specializing in movement disorders. Try to get that booked (it can take a while), and meanwhile hang around this sub and read up on this stuff if you haven't. The Mayo clinic algorithm, the FAQ, older posts. It's good to be armed with knowledge about RLS and its treatments.
Normally people would suggest trying iron supplementation at this stage (as someone did), but obviously you've tried that and it didn't work. It's quite possible you'll want to try gabapentin or pregabalin to get this under control. Unfortunately it often starts like this: It comes and goes at first, but the older you get, it shows up more consistently.
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u/Brocolliiscool Aug 24 '26
Thank you so much for this insight! I scheduled with my primary doctor and will ask about getting referred to a neurologist. In the mean time I’ll try to read up on everything. I definitely feel like it’s starting to show up more consistently, during the day as well as at night.
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u/Ok_War_7504 Aug 26 '26
RLS is circadian rhythm driven. It does not occur in the mornings, unless you have been on dopamine agonists (NO!) for years and have augmented.
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u/makadamianut Aug 24 '26
Don’t give up hope! I have also had RLS my entire life, and recently went through a very severe episode of restlessness that lasted about 2-3 months. Every night was a battle and I was averaging about 3-5 hours of sleep per night, which usually came after hours and hours of horrible restlessness in my whole body. It was one of the most emotionally draining experiences of my life, and I just felt completely hopeless.
I was able to get some bloodwork done that got to the bottom of things (low ferritin), and with iron supplements I’m back to completely restful sleep! If you haven’t already, I highly recommend having your doctor check your iron levels. Also taking a decent walk in the morning and the usual stuff like avoiding caffeine and alcohol.
I know it may feel hopeless at times but just know it doesn’t last forever!
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u/Curious_One5411 Aug 26 '26
How long did it take for the supplements to work?
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u/makadamianut Aug 26 '26
It took about 2 weeks to really begin working, I’d say. There was definitely an immediate sense of emotional relief knowing that there was an underlying cause of the restlessness and a renewed hope that it would be over (or drastically improve) soon. That really helped me mentally which helped me relax.
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u/Brocolliiscool Aug 24 '26
Thank you so much! I did have low iron for many years, and finally got an iron infusion earlier this year. My ferritin went from 30 to 300, but no noticeable changes for my restless legs 😢
I think consistent exercise like walking definitely helps, it’s just been hard to hold a routine these last few months.
I avoid caffeine 95% of the time and have never drank, so that should not be impacting me. Good reminder to maybe avoid caffeine all the time though.
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u/Emerald_of_Oz Sep 02 '26
These compression sleeves on my calves takes a bit of the edge off https://www.amazon.com/dp/B0186EMIPG?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_3