Hello, my name is Justin and I have been diagnosed with RLS for about a week now, but I have been suffering from SEVERE insomnia for about 7 weeks now, ever since I had a surgery.
Most people that I read about on here, comment about how they have pain in their feet/legs which is why they have their insomnia. For me, the feeling in my legs/feet is mild and bearable. It does not prevent me from being able to sleep. What I suffer most is from insomnia/hypnic jerks/convulsions. In short, my brain just will not shut off nor allow me to sleep without clonazepam (I take .25mg a night.) Without it, I cannot sleep. My brain will not recognize the function. However, it's not as if I have withdrawal symptoms which is why I need it to sleep. Prior to the surgery, I slept like a baby, and did not take any meds at all. So I have only taken this med for about 5 weeks. (I have had the intense insomnia symptoms for the 2 weeks prior to taking the med. In those 2 weeks, I would lie awake unable to come close to anything even resembling sleep for 7 or more hours. One night I even got only 30 minutes of sleep before my body woke me up.)
Second, when I fall asleep, I usually sleep for anywhere between 3-5 hours. Then I wake up and I am fully awake. (Faulty circadian rhythm which may be common in rls?) If I try to fall back asleep again I suffer from very strange symptoms. Some may be hypnic jerks right as I am about to doze off, others may be sleep paralysis/convulsions that I can feel coming on. Best way to describe it is that it feels as though parts of my brain are still turned on, and are firing signals to prevent me from sleeping. Right as I am about to sleep, my body has minor convulsions, or I straight up have sleep paralysis and cannot move. I suspect this is why the clonazepam works so well. It suppresses this when I take it at night.
These symptoms that I am suffering from right now, seem less common than many of yours but I am wondering if any of you are on the same boat as me? I am seeing my neurologist this week and will be requesting a full iron panel as well as my ferritin (TSAT) numbers, as per SueJohnson's recommendation. With luck, it will be as simple as taking some supplements.
To me, it seems as though it's a mix of RLS mixed with something else? My neuro only says it is RLS, but she thinks that because it was triggered by the surgery, that it was due to the general anesthesia which resulted in all of these symptoms.
Right now, I only take the clonazepam. I have been prescribed pramipexole. Firstly, I am aware of augmentation and the cautions issued by all of you. Second, I have only taken it once and it doesn't work for me. It just caused me to twitch even more as I am about to fall sleep. Maybe that's a good thing. Perhaps it means that a dopamine recession is not the cause, but rather it is low iron caused by the surgery.
I would love to hear your stories and symptoms to whomever is reading this. Not only would it shine some light on this epidemic, but it would help me feel less alone. It's as if whenever I awoke from my surgery I am now living in a completely different and foreign body, with issues I never would have imagined.
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I am so sorry to hear this. It sounds as though you have had an adverse reaction to the anaesthetic.RLS patients are advised to insist on safe anti nausea drugs with anaesthetic, like Zofran.
Were you given opioid pain killers after surgery? That is another common cause of RLS. My sister was given 8 weeks of Oxycontin after major surgery and she suffered severe, nightly RLS for 8 weeks thereafter as she withdrew from Oxycontin.
However, what you're experiencing doesn't sound like RLS. If Pramipexole didn't stop the sensations that's a strong indication that it's not RLS.
Look at RLS-UK website for the diagnostic criteria.
There seems to be something else happening to you. Probably an adverse reaction to the anaesthetic.
Are you on any other medications at the moment? You may be experiencing side effects to those.
Have you caught Covid recently or in hospital as some of your symptoms could be long covid and you would need to investigate supplements you can take to clear the virus or reduce microclots.
I suggest you try to see a sleep specialist and get a sleep study and that may shed some light on what is happening.
Hey Joolsg, I don't believe opioids are a factor. They gave me Hydrocodone acetaminophen, but it was discontinued after 2-3 days post op. The only thing I can say that I have in similarity with RLS symptoms is the tingling/burning sensation in my feet near the evening. But usually I am still as a rock, and the symptoms are no where near as bad as having to move them. So the insomnia is a stand alone issue not from a constant act of moving. No covid, or any other medication taken at this time.
Then I don't think you have RLS. Push for a sleep clinic study. It sounds like a sleep disorder. Sue Johnson has set out the diagnostic criteria. With RLS you HAVE to move. Keeping still when it hits is not an option. That's why lying still and sleeping is difficult/impossible.I hope you find a solution. Look into medical cannabis as well. It's legal in the UK now.
Thanks Joolsg, your support means a lot. I have been researching into sleep clinic studies but none of them seem easy to schedule/find. Would you recommend I press this with my Primary doctor, neurologist, or both? Finding one by myself seems to be a challenging task, as they seem to be few
This is a UK based website and we don't have as many US members. I don't know any US sleep clinics but your GP ( PCP) should be able to refer you to one. Or you could try the US rls foundation at rls.org as many members will have used a sleep clinic.
it doesn’t sound at all like RLS to me. The main difference is that there’s no movement disorder. Plus, tingling and burning sensation near evening is not a symptom.
These are the diagnostic criteria Joolsg was referring to: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
Just a quick comment, when I was in hospital there was no night or day. It never went dark and we never had daylight. I asked why it was pereptually one dim light as I could not sleep in ICU and was told that it helps with pyschotic drugs. You can change the time and the dose with far less complications if there is no night and day. I suffered insomnia too when I came out. May not help but worth mentioning as we are on the same drug. Wish you well.
If you're in a pot-legal state, indica type cannabis is well-known to help induce slumber. And if you haven't used it before, go slow until you know how it will affect you.
My RLS symptoms are definitely related to sleep as it is when I am feeling tired that the bottom of my legs above my ankles start being so so annoying, I have to rub them really hard to the point of hurting myself and walk etc... And it sometimes goes or comes back. And I have suffered from insomnia for years. Some nights I only sleep for a few hours but I can also fall asleep at the drop of a hat, anywhere... But I only need a few minutes sleep to recuperate. This thing about paralysis I had it for a few months about 15 years ago. I know what triggered it. I was extremely tired at the time, long hours at work but went to an Italian restaurant at night with my daughter and had one of their very strong coffee.
When I tried to go to sleep it felt as you said that one part of my brain wanted it and the other didn't. Everytime I was on the point of falling asleep, my breathing stopped and I was suffocating ( or rather it felt like this as in fact it was a trick of the mind). Some people hear voices, or get abuse shouted at them, or see accidents happening to their loved ones - falling in the stairs ( and it's not a dream as you are not asleep yet). I've had the latter and of course you chase the idea out if your mind, therefore wake up and then it comes back again as you are falling asleep.
I don't take medication for all of it, my sister does.
You need to go to a sleep clinic. They will monitor your sleep and you will be surprised that even when you think you haven't slept at all, your brain will have shut itself for a few seconds or minutes but not long enough for you to remember.
They advise to have a bed routine, plenty of hot soothing herbal teas and bit using your phone or screen before you go to bed. And learn to meditate. It works.
You are young, try to do it without medication if you can as you need to keep it for when you'll be much older.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not, when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
There are two newer drugs for primary insomnia, Belsomra and Dayvigo, and they work differently than the older ones. These drugs interfere with wakefulness rather than sedate, but they have side effects and I'm not sure how long a person can take them. I'm waiting to see the sleep doc in a couple months.
Primary insomnia and RLS are considered two different issues, and a person can have them both. You're definitely not alone! I know exactly what you're saying about your mind being in the "on" position. Circadian rhythm is controlled in the hypothalamus (as far as we know) and if this problem came on suddenly, it sounds like something in the long surgery set it off. A sleep study might shed some light.
You may not get all the answers you want in that first visit this week, but bring your notebook and raise every question you can. And let us know, please!
Hi Justin. I am so sorry to read your story and hear how you’re suffering. I have/had very similar problems. I have RLS (I’m not sure you do, but maybe?), but my biggest problem by far isn’t RLS. It is the jerking/twitching just as I try to enter sleep. Like you, it initially kept me up for days (months, actually), until I got to the point I was completely exhausted and would cry every time I even thought of trying to go to sleep. Like you, I was convinced my brain was broken. Short circuiting-sending signals down my legs and to a lesser extent other parts of my body. It got to the point where it happened all the time but was much worse at night (or anytime I tried to sleep). My body just seemed to be trying really hard to prevent me from sleeping, using electrical currents that would force involuntary movements.
I don’t have sleep paralysis but I do have the thing where, as you described, I can feel the convulsions coming on. I can’t stop them, unless I move. But still come right back if I try to sleep. My neurologist considered many causes and did a ton of tests. The final determination was RLS and PLMS caused by my spinal problems. I don’t believe this to be the culprit (but what do I know? Lol). Either way, using advice from this forum, medication, and certain activities (stretching, exercise in the morning, meditation, improving overall sleep hygiene) have things under control. My issues aren’t gone, but they no longer crippling.
I believe we both have something very similar and the biggest thing that helped me was advice on this forum about keeping a diary of my symptoms, activities, medications, and food. It was a ton of work but it was also empowering because up until that point I felt I was helplessly watching my body/brain destroy each other on a primitive level-in ways that had no conscious control. Anyway, it took a long time tracking my symptoms and trying things to figure out what actually helped me. Whatever is wrong with us is lessened/helped by following the general advice for RLS. I really hope your problem is temporary and somehow resolves on its own. But if it doesn’t, or until then, know that you will eventually find a way to manage your problem and improve your situation. You will get your life and peace of mind back. Just stick with it. We’re here and we’re rooting for you.
EDIT: One more thing-you mentioned trying to get a sleep study. If you do, please report back. My neurologist also recently wanted me to do a sleep study but when I asked if/how the results would inform my treatment, she said it probably wouldn’t. That they were basically doing everything they could already. So I decided there was no reason to go through the sleep study. But if you do it and actually learn anything, I’d love to know. In which case, I’d do it too.
Hey Guitarpickin, this long post and your story means the world. Myself and I'm sure everyone you have responded to appreciate it immensely. I will update this wonderful community on any updates I have good and bad as the weeks go on. Any suggestions on what diet to abide to, medications to try, or what to avoid that assisted you in the process?
I’m happy to share what has worked for me, but I’m sure by perusing the forum you’ve learned how different we all are so I do hope you’re able to take the time to start your own symptom diary that includes your foods eaten, medications tried, and activities performed so you might be able to begin putting together the pieces of your own puzzle.
For me, my symptoms are fairly well controlled by a multifaceted approach. THE ESSENTIALS: 200 mg of gabapentin 60-120 min before bed (super low dose, but it works for me) with 5 mg of THC with CBN in gummy form about 30-45 min before bed nightly. Daily exercise. Exercise is very important, in my experience. But it needs to be in the morning or early afternoon. Doing it at night amps my body up or something. IMPORTANT, BUT I CAN’T TELL HOW IMPORTANT: Taking 25-50 mg of chelated ferrous iron every other night (or at least 2 X a week) on an empty stomach with vitamin C 30-60 min before bed. Stretching the legs and back in the evening before bed! This is a huge pain in the butt yet also somehow my favorite part of treating this dumb condition. I do it for about 45 min while watching TV. Calf stretching right before bed is also amazing and if I start jerking in the night, it almost always stops if I get up and stretch my calves for 2 or 3 min. Meditation. When I was at my worst, I did this and it helped. My food diary showed me which IPA beer brands set me off and which red wines my body seemed to hate. My body also does not appear to like fizzy water. Lol. I also avoid sugars (to include milk, since it has so much natural sugar) and simple carbs in the evening. I try never to drink caffeine after 10 am. And when my insomnia is bad, I drop caffeine all together until I get it under control. I also try to eliminate phone/computer screen time in the evening when my insomnia is flaring up and instead use magazines or old fashioned books. You asked about drug interactions-my neurologist gave me the thumbs up on using gabapentin and THC together. But start with as low a dose as possible because I was told we build a tolerance to gabapentin. You also asked about side effects. I had ankle swelling, dizziness, and brain fog initially with gabapentin but it eventually went away or significantly improved.
I’m sorry you’re having to deal with this but as far as I can tell, there are no short fixes. It’s great you’re here in this forum, asking the right questions, and trying to be proactive about getting the medical care you need. You’ll get through this and you’ll be okay. Please keep us posted and let us know what works for you. I’ll be thinking of you and hoping for the best.
Hey Guitarpickin, I try my best to be as proactive on these issues as possible because the only thing worse than dealing with all this is letting it cripple you and not trying to better it yourself. I'll push the gabapentin on my doctor a bit more and see what she thinks. I have seen other users praise it and with it's anti convulsionary properties it may work to soothe my hypnic jerks/twitches/myoclonus. I also am getting a full vitamin and iron panel tomorrow. If there are any deficiencies, I'll be sure to update the community.
I’m so glad you are getting your vitamin and iron panel tomorrow. I hope the labs reveal something useful. Gabapentin isn’t great, but some would say it is because I don’t take enough. I don’t know about that though. But I do have to combine it with indica THC. Are you open to trying THC? I’m not a fan of it myself (or wasn’t before I started using it like a medicine), but combined with gabapentin at night, it has really helped both my insomnia and my involuntary nighttime jerking/shaking/twitching. Or if still happens I can sleep through it. Are you in a place where THC is legal? If not, I can suggest a couple synthetic THC options (one, your doctor would need to prescribe, and the other is a new form that hasn’t been made illegal yet so it could be ordered, but I’m not sure of the safety because it’s so new). I really hope that because your symptoms started so suddenly with a known incident (your surgery), they will be able to resolve almost as suddenly. Fingers crossed.
Thanks Guitar, yeah I used to smoke quite a bit in my early college and late highschool years, but obviously have had a period of not doing any of that since surgery had to be done and what not. Then with this following it, and all the medications also coming a long with it, it just hasn't been on my mind because I was cautious of crossing any thc consumables with the meds they were giving me. But I may try some edibles. With luck that will allow for a longer and more restful sleep. I'll bring it up with my neuro and try all sorts of things as the weeks go by. Always in the realm of safety, of course
In a prior post you mentioned that the 7-hour surgery was "on your nose." Did it involve your sinuses? If so, the inflammation might not be gone, or maybe a nerve was disturbed. Something to consider asking about.
Hey grass, I spoke in depth with the Rhinoplastic surgeon in addition to him also evaluating the nose. I pressed my concerns and complaints with my health issues before being able to see my neuro and before even suspecting that the problem was neurological. Everything is healing fine and honestly, at times I forget my nose was the area worked on. So whatever is happening, I do believe is due to the length of the surgery and the general anesthesia that was administered not from a disturbed nerve nor inflammation. Inflammation actually was the first area I suspected, so they prescribed muscle relaxers to which none worked. The only medications that have any affect seem to be any that deal with anti seizure or convulsions. Klonopin being the primary one. Tomorrow I will bring up gabapentin. I have heard that has had success in treating primary insomnia.
That makes sense. And yes, gabapentin can help with both primary insomnia and RLS. As Guitarpickin said so well, I hope these issues are temporary, but if they aren't, you'll find help here. Let us know. You've got us all curious now.
I was diagnosed with RLS over 30 years ago and was on Pramipexole for most of that time. It was quite effective for me. However, because of augmentation, I have transitioned off P. I wanted to tell you my example of having surgery. About two months ago, I had knee replacement surgery on my left knee. A short time after the surgery, I started having RLS-like symptoms which were present even during the time the RLS was being controlled in my right leg by my RLS medication. My orthopedic surgeon told me that the sensation in my left leg was not uncommon because of nerve damage as a result of the surgery. He assured me that the RLS-like symptoms due to the surgery would go away in a few weeks. I confirmed what he told me by Googling "RLS symptoms after knee replacement surgery." For the past two days, I have consumed two glasses of quinine (tonic) water, one around noon and one around 5 pm, and I have not had the extended RLS-like symptoms in my left leg. Quinine water is known to be successful in treating mild cases of RLS in some people. So, I assume my result would suggest that the quinine water "took care of" the RLS-like symptoms associated with the surgery (two days of my experiment don't make my assumed result a scientific fact!)
The pramipexole is successful in relieving the symptoms associated with RLS in most people. Perhaps P is actually working for you, but you are having the RLS-like symptoms also because of your surgery. Good luck in getting it all sorted out.
You might have a version of Periodic Limb Movement disorder (PLMD), which is what i have. Usually this effects the legs (twitching, jerking every 30-90 seconds. Mine starts as soon as I try to fall asleep. Sometimes I fall asleep and it wakes me later. In addition to jerking legs I also sometimes jerk in other parts of my body (arms, stomach, back). Sometimes it quite violent and scary. Sometimes I also have some minor symptoms of RLS. Needless to say its impossible to sleep while this is going on. PLM and RLS are very similar in cause and treatment. A sleep study will confirm. The treatments are the same. Good luck, this crap is really awful.
One other thing, I had knee surgery a year ago and it really made my PLM worse for 4-6 seeks.
Before I was educated I started out on ropinerol (1-3 mg) which worked well at first. Then I needed more of it and learned about augmentation. Then I switched to 1800 mg of gabapentin split into 3x600 mg doses spread 2 hrs apart + 0.125 mg of pramipexol (low dose). Now I'm trying 300 mg of pregabalin (6x more effective than gabapentin) in two separate doses + same amount of pramipexol. Some nights this is inadequate so I add some gabapentin.
I also have insomnia for some reason, so some nights I have tried cannabis which does nothing for the PLM but does help me sleep. I like the indica variety (edible, 5-10 mg) with an extra helping of CBN (supposedly the stuff that gives you couch lock).
I also, gave up alcohol and caffeine but this sacrifice didn't help.
I also find exercise helps. Some say a moderate amount is best but I find I sleep best when I have worked myself nearly to exhaustion playing in the mountains.
The bottom line is I can't cope with the jerking so I make sure I get the proper meds at a high enough dose to stop it. Otherwise my life would be pure hell. There is a reason sleep deprivation is a form of torture.
If you haven't read the new mayo clinic guidelines get a copy. There should be many links on the forum. Learn as much as you can because most docs don't know anything.
I hear you there about sleep deprivation being a torture. I never appreciated how easy I had it in life until after waking up from this surgery and experiencing all this. I appreciate you taking the time out of your day to respond to a stranger in need. Means a lot. Is there no repercussion to crossing marijuana with these meds? Did the neuro give you to the go ahead, or is it just what works best for you
From a reputable source: "Using gabapentin together with cannabis (Schedule I substance) may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination." I think this is true but my PLM is an evening to early morning problem so med effects have worn off by the time I get out.
You're a real one Tanker. I'll speak to my neuro and bring up Gabapentin. I already looked into it a bit and since klonopin works so well in putting me to sleep, maybe the Gaba will assist in suppressing the convulsions and actually keep me asleep. I'll update on the matter, but hearing you have success with it gives me hope. Just also wary of any potential side effects. I have none with klonopin so far, but I did have a few with pramipeoxle. Hoping that with Gabapentin, there will not be any.
I know what you're going through. I think my RLS comes from neuropathy although a couple of Drs. say no. It would only flare up when I reclined or laid down. Never when sitting with my back straight or standing. I was on Ropinerole for a few years with limited effect and the nausea was horrible, not to mention constantly worried about augmentation. I found a Dr. that tried me on a small dose of Methadone (5mg at night). It literally saved my life. I was SO close to suicide. I do also have to take 5mg Ambien, but I can sleep. I haven't had a RLS episode in months now (and no nausea or side effects) except for two times that was self inflicted. I can't have sugar, caffeine or dairy after 5pm. Keep trying different doctors. Many sleep doctors also specialize in RLS. Go to as many as you can. Unfortunately, I don't think there's much legit research done on it.
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Had Gabapentin caused anyone’s RLS to flare or worsen??
Switching from three meds to one (Pregabalin, clonazepam, and ropinerole) - I hope! I hate ropinerole! I need help. 
I DON'T WANT TO POST THIS
Clonazepam and Other Mentionables Bring Relief 
Does Valerian help with RLS?
