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.
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.
Thank you so much Jools, this has been incredibly difficult to undergo. I appreciate your help immensely
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.