shock - fight or flight response.

[Dark71]

sometimes I wonder weather restless leg syndrome is induced by a traumatic experience in earlier life. The fight or flight response that is constantly on overdrive! Never being able to relax….

I’ve had the disorder for most of my life. Contrary to belief my symptoms stated at a very early age. Practitioners refer to restless leg as being a disorder of ‘older’ individuals. This is a load of crap. Anyway have any of you noticed that a change of scenery, or schedule can alleviate the condition? If I’m distracted or someone shouts at me my body seems to like it!? The restless leg goes away for a short time….

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[SueJohnson]

Welcome to the forum. Yes - distraction is a known way to lessen the symptoms for a time. If you live in the United States and tell me where you live I may be able to give you the name of a doctor who is knowledgeable about RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[Dark71 in reply to SueJohnson]

Thank you so much for this information! Currently I’m taking gabapentin and ronpiarole. I change up the dosage and time pretty much every night but it’s not working for me anymore. I guess I should ween off of ropinarole and up the dosage on the gabapentin. I live in Texas and am trying to find a neurologist. Thinks are pretty bad at the moment. I feel hopeless and trapped within my own body.

[SueJohnson in reply to Dark71]

To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Your best bet is the Houston Methodist Neurological Institute in Houston. It is a quality Care Center for RLS. Others in Texas who are knowledgeable are

Sarah Aguilar 832) 688-8886 Cypress

Dario Beltran [phone] Midland

John R. Debus [phone] Dallas

Kevin Gaffney [phone] Spring

Clint A. Hayes [phone] Sherman

Raj S. Kakar [phone] Plano

William G. Ondo [phone] Houston who is at the Houston Methodist Neurological Institute

Subhashie Wijemanne [phone] Austin

[Dark71 in reply to SueJohnson]

thank you so much ! Really appreciate it

[LotteM in reply to Dark71]

william ondo is one of the very top researchers in rls.

[SueJohnson]

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.

[Allyp69]

Yes, if only we knew exactly what causes it...we know what exacerbates it...stress, tiredness, alcohol, caffeine etc..but could be due to childhood trauma...but I can't think of anything in particular.😕

[Moonwalker1967]

I had childhood trauma. Abusive father and alcoholic mother. Was told to stay in bed for hours, so parents could have a lie in after partying and drinking previous nights. It was horrible having to stay in bed until lunchtime. I have bad RLS, insomnia, PLMD, anxiety and IBS.

I thought it might be because of childhood trauma. Now come to the conclusion it's hereditary. Both my kids have same issues and my grandmother plus mother could only sleep using sleeping pills. Definitely passed in from generation to generation

I hope above is helpful!

[Dark71 in reply to Moonwalker1967]

Thank you for your touching comments. Trauma can show its self in many disguises. It’s not necessarily always physical or sexual abuse. Our brain protects itself when we are young and continues to do so as we get older. Even when we no longer need to do so….. Our body is a strange and wonderous thing.

[Edengirl58]

Hi everyone, this is my first post. I’ve been on the forum for some months and have found it so valuable to read others’ experiences. Not had energy to post before as I have long covid- extreme fatigue.

Dark 71 your post touched me. Yes indeed ACES - adverse childhood experiences- are now a recognised phenomenon in causing all kinds of physical Ill health in adulthood. Here in UK ACES training is starting to be more widely used in health and social care. You may like to check out a book written by a survivor of abuse which, as well as telling his own story, explains the extensive research and thinking on ACES. It’s called ‘ACES In the Shadows- Understanding Adverse Childhood Experiences’, and is on Amazon. Hope it helps you to know that this is now being acknowledged….

[Dark71 in reply to Edengirl58]

Welcome! Thank you so much for your thoughtful comments.

[SueJohnson in reply to Edengirl58]

I see you are taking gabapentin. Does it control your RLS?

[Axex]

I agree, I find that scary movies and horror films seem to banish RLS. Problem then is imagination gets fired up and every creak or bump is Hannibal Lector !

[GaryHB]

Hi. yes - I can't help but agree with all you said. I faced a traumatic event in my late 30s that brought about overwhelming fear. That night I could not sleep and from then on I could never fall asleep without jolting awake every time I dozed off. I averaged 1 hour sleep per night. This went on for months - and then rls started. 20 years later I have been diagnosed with PTSD and do feel on constant hyper alert - the smallest sounds trigger alarm. So yes in my case - it was adult trauma that triggered it.

[Edengirl58 in reply to GaryHB]

Yes Adverse Adult Experiences are also thought to be a trigger for physical illness. It’s obvious when you think about it. adverse experiences are of course part of life but the longitudinal research on ACES on a huge sample of people in USA linked severity and number of adverse experiences to their poorer health in later life. I think the research on Adult Adverse Experiences is probably in early stages, but having worked with troubled families all my working life I and colleagues had been aware of a strong link, and our training on adverse experiences confirmed our thinking on this.

[GaryHB in reply to Edengirl58]

Very interesting. I work in counselling too but in spite of that I have found no way to reverse that traumatic event. I have to manage it.

[Edengirl58 in reply to GaryHB]

It sounds so difficult Gary, and speaking for myself my rls in itself creates anxiety and hyper sensitivity making getting to sleep so difficult. I also have long covid which also creates hyper sensitivity and a feeling of being ‘wired’. I have just started treatment for the rls - had an iron infusion 4 weeks ago but no improvement yet, and 300 mg of Gabapentin. Am trying to use mindfulness too to reduce stress. I read a comment yesterday which said that it’s like our body has a secret code going on that we are continually trying to crack.

[GaryHB in reply to Edengirl58]

Yes I identify with the anxiety issue. If I didnt have my faith I'd be in a much worse state I reckon.