Yeah, I have ADHD – supposedly it’s often related.
The first time I experienced RL I was 11. At the time I remember thing that it felt like my lower legs somehow didn’t belong on my body, and if I cut them off at the knee, I’d feel better. (No, I didn’t actually want to do that, but the creepy crawly feeling at the back of my knees made them feel like some alien appendage)
Long-time RLSer here.
Mine first manifested when I was in my early 20s. In my case the sensations seened to be centered in an odd location in my foot, and began not long after I had a cut on the foot that became infected. I thought there was a connection (infection led to nerve damage?), though it was most likely coincidental.
I wasn’t formally diagnosed until the kids were young. A podiatrist thought it was a neuroma and treated it accordingly, interestingly the treatments (steroid shots / ultrasound) seemed to he;p some for a bit.
My husband, bless him, rubbed my legs to help me get to sleep many, many times. I also bought a huge percussion massager that I’d sometimes use to literally pound the legs into submission.
I found that there is a LOT of misinformation out there. I joined an online group years back and learned about some of the world leaders in RLS research, including what treatments were common, what had been debunked (quinine… a bar of soap under the sheets???), what worked but cure was worse than the illness (Klonopin). I was pleasantly surprised when my primary care doctor knew of a legitimate treatment (Neurontin / gabapentin) even though that wasn’t the preferred treatment; a neurologist I consulted insisted that a) Klonopin was great stuff, and b) she’d NEVER had a patient experience augmentation / rebound on the dopamine agonists such as Sinemet or Mirapex - both of which I knew to be false.
I actually went up to Johns Hopkins and saw Dr. Richard Allen and Christopher Earley and nearly burst into tears because Oh, My Gawd, they UNDERSTOOD.
They were actually doing a lot of research into IV iron; I gather that had mixed results, though one fellow in an online group had been part of the study and had substantial improvement for quite some time. I thought of taking part but the time commitment was too great.
I managed to get by w/o daily medication through sheer stubbornness for many years. Finally started Requip about 10 years back. Unlike many people, I’ve managed to keep it effective w/o a crazy high dose - again, partly through sheer cussedness, and also because I take 2-3 weeks off the stuff every year (a “drug holiday”) which may help with resetting the rebound / augmentation chemistry.
Blood iron levels: IIRC, a normal ferritin level is something like 18-150, though RLSers are urged to get theirs to 50 or even 100 if possible. Mrs. Modem shouldn’t take supplements w/o getting her levels tested as too much iron can do bad things.
For me, the biggest problem with the Requip (ropinirole) is that it’s hard to get the timing right. Too early, and I’m feeling nauseous by bedtime. Too late, and it hasn’t kicked (hah) in to let me fall asleep. I usually have a small stash of a lower dose on hand in case I’m having the twitchies when trying to watch a movie or something, though I haven’t needed to do that in a while. I’ve never had a problem with behavioral changes e.g. gambling or whatever, fortunately!!!
Do look into other sleep issues e.g. apnea. After a number of sleep studies, I finally had one that showed enough apnea to treat. Diligent use of CPAP and I still felt wretched, so they did a daytime study which showed idiopathic* hypersomnia; the treatment for that is Nuvigil (nonstimulant wakefulness medication). While the Nuvigil is in no way intended to help RLS… If I’m unusually tired due to poor sleep, my legs will act up during the day - and the Nuvigil wakes me up enough that this stops happening.
Back when I started the Requip, it had just been formally approved by the FDA for RLS treatment. The dopamine agonists were the “gold standard” back then, though the issues with augmentation (worsening symptoms) and rebound (symptoms coming back HARD when the medication wore off) were known. The people at the sleep clinic I go to now are saying that now, their preference is to start off with Neurontin or similar, largely because of the augmentation / rebound issues. I gather I’m unusual in toughing it out with the Requip this long, but Neurontin has different side effects (including weight gain, which is not something I need!!).
Other drug options: Horizant (a pro-drug that is metabolized into something else in the gabapentin class) supposedly leads to more even therapeutic effect with less sensitivity to, say, what you’ve been eating, though I gather it hasn’t panned out all that well. Neupro (another Parkinson’s drug, though I’m not sure if it’s a dopamine agonist) is administered via patch, and I don’t think it’s panned out well for RLS treatment either. The sleep people say that they’ll even prescribe long-term opiates if the other drugs fail.
A hot bath can often short-circuit the twitchies if you (or Mrs. Modem) can get to sleep before the effect wears off. Occasionally my symptoms will manifest as intractable itching in one foot or ankle as I’m trying to fall asleep; running the foot under hot water (vs a full-on bath) will usually stop that.
My 80 year old mother has suffered with RLS for at least 30 years. Tried everything. Hasn’t had a decent nights sleep until medical marijuana became legal in our state. My brother and I persuaded her to try it and it works beautifully. She takes a couple hits out of a pipe right before bedtime and before he reaches her bed, her legs feel fine.
You mentioned this sublingual spray and I’m sure she would prefer that. Is it only available in fully legal states or can I obtain it with a medical marijuana card?
I have it, but not badly. I’d say that about three nights per week I struggle to go to sleep at night but am hampered due to the crawly feeling in my calf. It’s always only one calf, never both (thank goodness). My mom had it, too. I remember her dozing off on the sofa in the evenings and even in her sleep she was abruptly flexing her calf.
Percussion massager? Huh. Does it help? When the RLS is really bugging me I fantasize about a masseur pounding on my calf with balled-up fists. I try doing it myself, but it requires more contortion than is comfortable when you’re trying to go to sleep.
I live in California and have a medical marijuana license. My local dispensary sells Care By Design CBD Sublingual Spray in different formulations. I use the 1:1 THC to CBD spray. Depending on which state you live in, there should be a comparable product you can get locally.
I think it worked by distracting me enough that the sensations got short-circuited for a few minutes, which would be enough for me to fall asleep. The one I had was a bit like this, so I could actually reach my legs without contorting too much.
Ummmmm, you actually TRIED this???
Of course Doctor Oz (quack that he is) actually said “it couldn’t hurt” when asked about that so-called remedy. Which would have been fine, had he prefaced it with "There’s no reason to believe this would have any effect, but at least ".