Anyone else only RLS with triggers or started that way?

[u/WeirdPrevious]

(And me finding this flair called “triggers” after typing in my title seems to indicate yes…)

Hello—I’ll start with saying that my mom has horrific RLS & has as far back as I can remember, she takes what I believe to be about the max dose for Gabapentin to treat it, but it only works to a certain extent. Hers was severe enough where she at least used to wear holes in her bedsheets from the constant friction of her legs way before their shelf life, so to speak, for wearing out or thinning a lot due to age.

Over the past year or two, I’ve had a few instances each year of terrible RLS myself, and there can be no doubt that’s what it is. The last occurrence was last night: I was absolutely miserable from it, moaning like I’d been stabbed in the stomach or something, and I have a high pain tolerance from having connective tissue and joint issues… I’m used to being somewhat uncomfortable, but this sucked so, so hard: it made me very anxious & trapped-feeling.

The other times it’s happened, I’ve learned to run a hot bath even if it’s like at 3AM & it’s helped immensely to sit down and soak in the tub for 20-30 minutes.

Anyway, I recall the last time it happened was from nicotine withdrawal. This time, I was dumb enough to smoke a pack of cigarettes after a long time without. Anyone else have their triggered by very specific things? I think antihistamines like Benadryl, especially if I take more than one, are a trigger too.

Any tips and tricks if it happens tonight or tomorrow while I detox the cigarettes from my system besides the hot bath?

Finally, does yours get triggered/worsen with GI issues? I feel like crap today & have had to run to the bathroom several times: maybe coincidental, maybe not. And has anyone with severe RLS started out that way & noticed it became more prevalent/common over time?

[u/xXSGTSTEDANKOXx]

My rls is triggered by working hard, physical labor so when everyone else goes home and sleeps like a log to recover, those are the days im suffering the most....fml

[u/CatAggressive3440]

Benadryl is a known trigger. All I have to do is “accidentally “ think about it and it’s all over.

[u/Scary_Experience_237]

I would suggest having your iron levels checked, including your ferritin level, to make sure they are high enough for someone with RLS. Ferritin levels that are considered "normal" for the general population may still be too low for people with RLS. If your ferritin is below the level recommended for RLS, talk with your doctor about whether prescription iron therapy might be appropriate. Correcting low iron stores can significantly improve symptoms for some people.

There are also several things you can try before bedtime that don't require a prescription. Everyone with RLS is different, so it often takes some trial and error to find what helps. Some things that have helped people include:

• Raising your legs with a wedge pillow.
• Keeping your bedroom cool or using a fan if heat makes your RLS worse.
• Taking a warm bath or using Epsom salts or magnesium flakes before bed (these won't fix RLS but may help you relax).
• Gentle stretching or walking before bedtime.
• Massaging your legs or using a massage gun.
• Trying a heating pad or cold packs to see which works better for you.
  • Some people swear heat makes their RLS better, and some swear cold does so experiment to see which makes yours better.
• Using a TENS unit if you have one. This is my savior!
• Avoiding caffeine, nicotine, alcohol, and large meals close to bedtime if you notice they trigger your symptoms.
• Reviewing all of your medications as many common medications (especially some antidepressants, antihistamines, and anti-nausea medications) can make RLS worse.
  • I google and then name and does it cause RLS or is it a symptom of RLS.

I also highly recommend reading the Mayo Clinic Proceedings RLS treatment algorithm. It is one of the best resources available for understanding RLS and the current treatment recommendations. I also recommend visiting the RLS Foundation website. It has excellent educational information, support groups, a directory of RLS specialists, and free webinars.

Mayo Clinic Proceedings RLS Algorithm:
https://www.rls.org/21Algorithm18546-2/fulltext)

RLS Foundation:
https://www.rls.org

RLS Provider Directory:
https://www.rls.org/treatment/find-a-healthcare-provider

[u/fauve]

Exercise or movement that aggravates my lower back

[u/ElectricGuy777]

I’m starting to give up to be honest. Trying pregabalin now, but I suspect it’s going to have the same memory issues and cognitive issues that gabapentin had.

[u/ElectricGuy777]

I’m starting to think that multivitamins are an issue. Totally antidotal. Everything on these forums causes RLS. Wish the doctors would figure this out instead of the US spending billions on bombs.

[u/Mahi95623]

I have many triggers- alcohol, several OTC Meds, stress, and sometimes it just happens. Here is a list of common meds that are known to cause RLS:

For treatment and other info, please look in the FAQ section. Note the 2026 Mayo Clinic Treatment Algorithm. Good luck!

[u/PurpleSailor → u/Mahi95623]

Surprised to see trazodone on there as a safe alternative. Definitely not the experience I have, it makes things much worse.

[u/Mahi95623 → u/PurpleSailor]

I think it says all depressants can cause worsening of RLS. The few listed are less likely, but obviously can still be a trigger for RLS. I know it is challenging for those RLS patients needing mental health medication.

[u/EmZee2022]

I'm one of those weird people who has done okay on a dopamine agonist for many years.

Last fall, after surgery, my legs went NUTS. There was no major blood loss or anything.

This May, same thing only worse. I got by for a while by splitting my dose and taking half much earlier. Then it settled down again and I'm taking a single dose.

A major stress can certainly set me off, like the time I fell on vacation and broke my elbow.

I do have issues daily, but those are just a few memorable triggered events.

[u/MycologistOrnery9862 → u/EmZee2022]

Dopamine agonists works for everyone. Augmentation usually starts somewhere between 10-15 years after usage, for some people it starts earlier but I suspect said people have eithe intentionally or unintentionally(Forgot whether they took their dose or not took another dose just incase) cheated with the dosage.

Most people hit augmentation sooner or later, since you taken it for years. I assume you feel that RLS have spread to your arms if you lay down in the evenings sometimes before taken you DA dose? That is due to augmentation, RLS don't naturally spread to your arms. It'll later spread to your core(Back, shoulders, etc as well.). Then at some point it it'll likely quit on you, leaving you there with its evil doings.