It’s not restless legs syndrome… so what is it?
November 10, 2023 1:54 PM Subscribe
Diagnosed with restless legs syndrome over a year ago. But spoke to an expert neurologist who thinks it isn’t RLS at all, but doesn’t have a great sense of what it actually is.
Symptoms: “odd” sensations in legs (knee to thigh), tingling but deep in the muscle. Unpleasant and grinding at times. Moving helps slightly but the symptoms don’t go away, it’s more a distraction. No clear timing (RLS is usually exclusively in the evening/at night, mine can occur first thing), doesn’t respond to opioids (RLS does), not made worse by antihistamines.
His best theory was drug-induced dysesthesia caused by SSRI/SNRIs. I’ve since switched to vortioxetine from duloxetine, and the symptoms are no better which makes me suspicious. Before that I’d halved my duloxetine dose (60 to 30mg) and that made no difference either. He said these more commonly sound like SSRI withdrawal symptoms but that doesn’t really follow.
Any ideas, or avenues to explore? B12 is normal, vitamin D is slightly low, other bloods are mostly fine. I’m vegan and male with decent iron stores. Gabapentin didn’t help and the neurologist doesn’t think I should take it any more. Sometimes I use a TENS machine to get relief.
Symptoms: “odd” sensations in legs (knee to thigh), tingling but deep in the muscle. Unpleasant and grinding at times. Moving helps slightly but the symptoms don’t go away, it’s more a distraction. No clear timing (RLS is usually exclusively in the evening/at night, mine can occur first thing), doesn’t respond to opioids (RLS does), not made worse by antihistamines.
His best theory was drug-induced dysesthesia caused by SSRI/SNRIs. I’ve since switched to vortioxetine from duloxetine, and the symptoms are no better which makes me suspicious. Before that I’d halved my duloxetine dose (60 to 30mg) and that made no difference either. He said these more commonly sound like SSRI withdrawal symptoms but that doesn’t really follow.
Any ideas, or avenues to explore? B12 is normal, vitamin D is slightly low, other bloods are mostly fine. I’m vegan and male with decent iron stores. Gabapentin didn’t help and the neurologist doesn’t think I should take it any more. Sometimes I use a TENS machine to get relief.
Coincidentally, just a week or so ago I was complaining about (well, just mentioning, really) an issue I have with my legs from time to time that is hard to describe and I know it's not RLS but it does feel like my legs want to be jumpy or something. It feels like anxiety but it's physical only. The medical provider I was talking to suggested that I try a magnesium supplement. I've haven't been on it long enough to know if it's actually helping, but it's a thought. Hope this gets worked out for you, I'll be watching your thread.
posted by janey47 at 2:15 PM on November 10, 2023 [2 favorites]
posted by janey47 at 2:15 PM on November 10, 2023 [2 favorites]
I don't understand why you're suspicious that SSRI induced dysesthesia isn't the cause if you're still on an SSRI, just a different one?
I totally believe that RLS could be caused both by SSRIs and SSRI withdrawal.
posted by wheatlets at 2:31 PM on November 10, 2023
I totally believe that RLS could be caused both by SSRIs and SSRI withdrawal.
posted by wheatlets at 2:31 PM on November 10, 2023
Response by poster: @wheatlets: vortioxetine was the neuro’s suggestion. It doesn’t seem to be classified as an SSRI (although does act like one from what I read; it’s much more tolerable than pure SSRIs as it’s a multimodal drug).
I guess I would hope that taking something with less SSRI activity would help my symptoms, same as reducing the dose of the SNRI was on; but nothing seemed to change.
posted by osmond_nash at 2:48 PM on November 10, 2023
I guess I would hope that taking something with less SSRI activity would help my symptoms, same as reducing the dose of the SNRI was on; but nothing seemed to change.
posted by osmond_nash at 2:48 PM on November 10, 2023
This happens to me when I'm low on either potassium, magnesium or both, so I try to remember to take a supplement of both every day.
When I forget, my quick fix is pickle juice. About a shot glass swig, and ten minutes later I feel a lot better.
The other things that can help me is one of those floor cycle things. Ten minutes at a day pace just when the tingly starts can stop it for me.
Ymmv, of course.
posted by Vigilant at 4:12 PM on November 10, 2023 [3 favorites]
When I forget, my quick fix is pickle juice. About a shot glass swig, and ten minutes later I feel a lot better.
The other things that can help me is one of those floor cycle things. Ten minutes at a day pace just when the tingly starts can stop it for me.
Ymmv, of course.
posted by Vigilant at 4:12 PM on November 10, 2023 [3 favorites]
This is a bit of a long shot, but some of the symptoms match up - I thought I had RLS for awhile, my neurologist said I didn't. I can't remember how I stumbled upon this via Dr. Googlepedia, but check out meralgia paraesthetica.
Specially if you feel pain in those muscles when even slight pressure is applied.
When I brought this up with my neuro (and the other symptoms that matched up), he concurred. I was prescribed low dose pregabalin and it has helped a lot.
posted by mephisjo at 4:38 PM on November 10, 2023
Specially if you feel pain in those muscles when even slight pressure is applied.
When I brought this up with my neuro (and the other symptoms that matched up), he concurred. I was prescribed low dose pregabalin and it has helped a lot.
posted by mephisjo at 4:38 PM on November 10, 2023
This is of course only my experience with troublesome movements/ restlessness. I have not researched any of these opinions for accuracy .
I notice them having more to do with dopamine than anything else. Dopamine is the neurotransmitter involved in Parkinson's, so it makes sense to me that it can contribute to shakiness. Low dopamine levels are associated with twitches and shakes. As a depression patient, I experience such lows enough to know what they are. They do cause movements for me similar to those in tardive dyskinesia.
If I'm having those movements/shakiness, I'll boost my dopamine by watching something funny or taking a cold shower--there are a lot of ways to boost it. I also keep some velvet bean supplement on hand to help boost dopamine.
Again, that's my experience, not advice, and I'm not presenting it as researched and totally accurate; I'm not making any claims which need to be argued with.
posted by mermaidcafe at 5:05 PM on November 10, 2023 [4 favorites]
I notice them having more to do with dopamine than anything else. Dopamine is the neurotransmitter involved in Parkinson's, so it makes sense to me that it can contribute to shakiness. Low dopamine levels are associated with twitches and shakes. As a depression patient, I experience such lows enough to know what they are. They do cause movements for me similar to those in tardive dyskinesia.
If I'm having those movements/shakiness, I'll boost my dopamine by watching something funny or taking a cold shower--there are a lot of ways to boost it. I also keep some velvet bean supplement on hand to help boost dopamine.
Again, that's my experience, not advice, and I'm not presenting it as researched and totally accurate; I'm not making any claims which need to be argued with.
posted by mermaidcafe at 5:05 PM on November 10, 2023 [4 favorites]
As a Parkinson's specialist, I'm only going to say that the levodopa content in Mucuna extract varies on the order of 100-fold (and does not match with the labeled amount), and that regardless of how much levodopa it contains, little to none gets into the brain, where it's converted without dopamine, without the assistance of a peripheral dopa-decarboxylase inhibitor like carbidopa or benzaseride. Ingesting plain levodopa in therapeutic doses just causes nausea. (That's why in the US, the brand name for carbidopa - levodopa is Sinemet = sin emesis = without vomit.) Luckily Mucuna is not actually toxic; it'll just come out of you by one orifice or another.
The other home remedies suggested here are ones I've heard before. One of the older attendings where I trained swore by pickle juice.
posted by basalganglia at 4:38 AM on November 11, 2023 [4 favorites]
The other home remedies suggested here are ones I've heard before. One of the older attendings where I trained swore by pickle juice.
posted by basalganglia at 4:38 AM on November 11, 2023 [4 favorites]
Not to alarm you but for me it's MS.
posted by DarlingBri at 11:16 AM on November 11, 2023 [1 favorite]
posted by DarlingBri at 11:16 AM on November 11, 2023 [1 favorite]
Other people have already mentioned this, and I know you said your iron/ferritin levels are fine, but for me when I had very low iron levels, I often had twitchy legs at night.
posted by knucklebones at 1:49 PM on November 12, 2023 [1 favorite]
posted by knucklebones at 1:49 PM on November 12, 2023 [1 favorite]
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The symptoms are also really intermittent: some days are bad (and some hours are really bad), some are fine.
Hoping some of you lovely people can help!
posted by osmond_nash at 2:05 PM on November 10, 2023